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I was recently diagnosed with CVID after YEARS of illnesses and unnecessary surgiers probably caused by the CVID. I was told the most common side effect of it were IBS & arthritis. I have the arthritis bad some days manageable the rest. Rheumatoid DR. says he can't treat me yet because all meds supress immune system......

So here's my problem. 1. I seem to be EXHAUSTED like never before. None of my habits have changed. I am busy but manage to get about 7 hours of sleep a night. I am a single parent, 37, to a 5 yr old, work about 9 hours a day and attend school online (3/4 time) so that takes about 20 hours a week. I have very little help from anyone. I did NOT pay attention to when the fatigue started but it is dramatic. I don't know if it happened towards the end when I was due for an infusion. I SPECIFICALLY asked my DR. if CFS was associated with it and she said no??? The infusions WIPE me out. I get migraines (we kept the IV's pretty slow this time and the migraine didn't start till hours later) and sudden nausea. I had some Zofran which seems to help.

Is this normal? This diagnosis was supposed to be "life changing" for me. No more bronchitis, sinusitis, pneumonia and ear infections! Now I can barely do the dishes? Am I crazy? Am I imagnining the fatigue and feeling HORRIBLE after the infusions? They are working because I was around 6 sick people and didn't get sick. I'm trying to exercise for 30 minutes during my lunch hour 3x's per week, trying to quit smoking, etc.

Any advice would be GREATLY appreciated. I really don't want to be a horrible, sickly, always in bed mommy :confused:
I have immunoglobulin anemia as well as ITP, so I have had IVIG several times and I think it depends on the brand of IVIG you are getting and how your body reacts to it. The last time I had IVIG, it was pretty easy, and they pretreated me with Benedryl and Tylenol. Halfway through, I started to have trouble breathing so they gave me a shot of Decadron. I didn't feel bad after that infusion, but, years ago, I had a bad migraine afterwards and didn't feel great.

So I think it is natural for you to be wiped out alittle. Your body is fighting the little immunoglobulins now circulating in your blood - it has to adjust and rebuild, etc. It could be that you need to take some more medicine to help you through the few days after an infusion. Make sure to tell your dr - they may be able to help you tremendously. You should've have to suffer.

How often do you get the IVIG and how long does an infusion take? The longer it takes the better, according to the nurses in my hema's practice. If they rush it, you can feel really, really bad.

Also, they said it is easier if you eat some sugar and drink lots of water during the infusion. I did this last time and it might've helped.

I'm going for an infusion tomorrow, so I'll check back in and let you know how it goes. It's been 2 years since my last one.
So far I have to have them once a month, so I've had 2 now. I know before the first one my levels were half of normal but haven't heard the results of the last blood draw. I see my Dr. on the 13th.

During the first infusion they were trying to do it quicly and I felt it, started hurting deep in my bones, headach, etc....so they slowed it way down. I was up to 180 (I think) last time so it took about 3- 3 1/2 hours. The nurse said the infusions are full of sugar so I should drink lots of water so I'm going to try to do that the day before.

I'm not sure if the pain I was in was caused from that or standing in line for an hour but it was SEVERE.

Oh BTW, I too had ITP back in 2000 and had a splenectomy after the steroids didn't work. As it turns out, my DR. says I probably never needed the surgery that I very well could have been caused by the CVID.

How did your infusion go? Are you feeling ok? Thank you so much for replying

:wave:
UPDATE: They might have to take me off the infusions :( It appears I'm having a reaction, a rash and I have dyshydrotic (dis-hi-draw-tic) Eczema which has BLOW up out of control. My dr. is going to treat the eczema and skin test the IVIG to see if I have a reation to the skin test. She has no reports of migraines, sudden nausea and arthritis 24 hours after infusion. So unless she reads it or hears it from another doctor, she's going to consider it a reaction. I feel better today but the rash is spreading. Say a prayer. It was the first time in 5 years that I have been around that many sick people and I DIDN'T get sick. I don't think the sub q has been approved for Kaiser yet but she did say she would check into it. This could be devastating if I don't get these. I will lose my job due to such frequent illnesses.....does anyone know of a website I can refer her to that shows people actually do get sick for a few days after? She said because I didn't have any symptoms DURING infusion, that the reaction didn't start till the next day IT IS NOT due to infusion rate. Period. I've read the other posts and will see if the nurses will agree to go slower...any suggested rates?

Sorry, I know I'm rambling...everyone else thinks I'm crazy, hypochondriac
You should never have a rapid infusion ever.......what brand are you being infused with? There are different levels........and yes Sub q is an option.
The Iga is a factor and also glycine base and Maltose vs Glucose sucrose base.... all of that needs to be looked at. Kaiser can order any IGIV they want too.

Here are some brands....
I am drawing a blank on the sub q brand name.
Gamunex made by Talecris
Flebogamma made by Grifols
Gammagard liquid made by Baxter
Gammagard SD (powder) made by Baxter
Privigen made by CSL
Carimune made by CSL
Octagam made by Octapharma
Also Gammastan IM Talecris
Gamma gobulin IM

Let me know if I can help in any way........ the infusion method is very important. Go onto one of these manufacturer's sites and read up or call their Medical affairs and they can answer questions for you.

Just so you know the Children's hopitals prefer Gamunex...you might look into that due to less reactions.

Much love, Oleander
I found out tonight my doctor is taking me off the IVIG's. She said she read that 40 people had some sort of eczema reaction and SHE can't take the risk it will get worse. I begged her to try the IVIG's one more time, skin test all the brands on me first. She refused, said I can't even do the Sub-Q. I don't know what to do because it was working. I can handle eczema and feeling horrible for 3-4 days. She won't listen. My only hope is that my family doctor will treat me or send me to someone else. THEN she said "come in and get tested for HIV". I said WHY? You know whats wrong with me.

The kicker is, my bosses just got me protected under FMLA because I had a treatment plan. Now, no treatment plan, I don't know if I'm still protected. And the thing that gets me??? I've had eczema MY WHOLE LIFE. Yes, not to this extent but still. And she said the other symptoms, like everyone else who gets the IVIG's on here, is an allergic reaction because they didn't happen AT the time of the infusion??? I'm so lost. I'm a single mom with a 5 year old, and I just had her fathers rights terminated. What am I going to do?
Wow - your situation really stinks. :dizzy:

I'm not a huge expert on CVID - I only got diagnosed a year ago - but from what I understand, you were probably so tired after the infusions because the antibodies were fighting a lot of tiny infections all over your body that you didn't even know you had. A lot of people with CVID say that the first few infusions actually can make you feel worse, and then you start feeling better in a few months to a year.

I get side effects with my infusions - chills, shivering, headache, fever, nausea, fatigue. How long they last depends on how many infusions I've had. The initial infusions are the worst, then the side effects get better. Last month was my first month back after a break of several months, and I felt bad for about three days, and then all month I just felt kind of low-level ill. But this month's infusion only left me feeling bad for two days, and by next month it'll probably be a lot easier if it goes the same way the first time did. Eventually, I only felt bad for a few hours after the infusion and was fine by the next day.

My other suggestion would be that the American version of the PIA, the Immune Deficiency Foundation has a number that doctors can call to get a second opinion or consult with experts in CVID and other Primary Immunodeficiencies. Here's the number: 877-666-0866. There's no charge for the consultation, so all your doctor will have to pay for is the call, unless it's toll free. Maybe if you can get your doc to call, they can give her advice on how better to handle your case, and, if you're really lucky, they'll convince her that there's a way you can have the IVIg back. Or maybe if you contact the IDF they can refer you to a doctor who won't be so afraid of working with you on your condition. Not to be overly skeptical, but it sounds to me like your doctor is out of her depth in this and is trying to make sure her assets are covered, so she's overreacting a bit. Maybe if she consults with other doctors, they can reassure her.

I don't know if it'll help much with your work situation, but you are protected under the Americans With Disabilities Act. Maybe you can look into that and see if you're entitled to some flexibility due to the nature of CVID. I would think you are.

You've got a tough situation going, with your little girl and all. My ex gave up his parental rights to our son, too, but I was already remarried at the time. I can imagine that, as a single mom, you'd be just about frantic. I'll keep good, happy thoughts for you that everything is going to work out OK. :jester:

Phoenix
Thank you so much. I emailed my family doctor the phone number. Hopefully he will call. I also asked if having someone else treat me is an option. This is INSANE. So these are the things I asked the doctor who wouldn't treat me:

1. Can we have the infusions slowed down to a minimal rate -NO
2. Can we skin test every brand to check for a reaction - NO
3. Can we try a 3rd infusion to see if I get eczema again - NO
4. Can I try the sub-q injections - NO

My antibodies (sorry I don't know IGa's or IGg's) were at 250 before the 1st infusion and 526 after ONE infusion. I was sick as heck for 3 days after both, then totally fine AND did not get SICK. HELLO am I missing something?

Sorry if I'm repeating any info here. Most of my other posts were really scatterbrained.

THANK you so much for all input. I will keep everyone updated.

Kelli:confused:
UPDATE: I found a doctor to treat me!!!! He's actually a leading HIV Dr. here in Kern County. He was perplexed when I told him I was pulled off of IVIG's by my last Dr. He is starting me on a lower dosage and working me up to max. He did say no to the sub-q, said they didn't work as well. I had to stalk Kaiser to get a result and finally get referred to a Dr. outside of their group. I hope no one else has gone thru this.
I'll keep ya updated as to how my infusion goes tomorrow. Thank you all again for everything.
I had Kaiser at one point....don't get me started...

I am one of those people who felt much worse after the first 2 IVIG infusions I had, and I was despondent that this wasn't going to help, but I since learned that yes, it kicks your immune system into gear and starts fighting those infections, and you feel worse until your body gets them under control. I just had my 8th IVIG infusion a week ago and this is the first time that I have really felt good afterward. It hasn't been bad for the last several months, but for some reason I've felt really good since I had this one done. I'm hoping this will continue.
-Rebecca
Gosh - I wish you lived down the street and I could run over for a cup of coffee! Thank you. Thank you so much. I can not believe how much it helps just to talk/write to another person about this - not a doctor or nurse. Sounds like we have a fairly similar personality type - which helps as well. I have never wanted to get involved in any kind of support group or "blog" thing - just because my LIFE has always remained more important to me than my illness. The last thing I want to do is commiserate all day long. But I tell you what - the past five weeks have really hit me hard. And I have been dealing with this stuff for 13+ months now. I seriously do NOT know how you are doing it alone. You must be one tough cookie!
I have a very supportive husband, seven amazingly supportive daughters and a small group of friends that just won't quit. Just this past December they put on a fundraiser for our family that will pay for our house payment for almost a YEAR! < edited >
Back to the health thing -
I really do not know why they upped my dosage so much. I didn't really realize it was that high until one of my infusion nurses (they come directly into my home and give me my infusions) commented about how she had never seen it so high. I get 40grams (rate of 150) every week. She said I was an insurance nightmare and better check to see what my lifetime max was! Makes me a little nervous - but I suppose I should call BCBS and find out! Anyway - I had an appointment on Thursday and they agreed to take a break from the IVIg and put me on a high dosage of steroids for a short amount of time. If I am indeed having a reaction this should help. If I am experiencing a lupus/sjogrens/ra flare of some type - this should help as well. I am VERY anti-steroid and have not taken them in the past when they have been suggested. For one, the one time I did take them I did not sleep for weeks and that just seemed to compound my issues. I seriously HATE taking medications or starting new medications. It just introduces new things in the mix and makes everything more complicated. SO...we will see. I started the steroids on Friday and I have to admit - I am feeling some better. I head back to the Dr. on Wednesday to find out some blood results and come up with a new plan. I'll let you know how it goes.
Thank you again so much for taking the time to respond. I means a great deal to me.
Take care!
Make sure your infusions are run slowly. Almost all adverse reactions are due to rapid infusion rate. FYI St Jude's and most Children's hospitals use Gamunex for safety reasons. Also you may need a low Iga IGIV which is Gammagard SD.... Also you may want to try Gamastan IM injections instead if you have a mild form. Remember most home infusion or medical people purchase IGIV due to reimbursement issues. They buy the IGIV that they can make the most profit on after infusing......You can ask your Doctor for a specific brand or go to the Manufacturer.

Good luck and I hope you get feeling better. Oleander
Initially I was on a 4-week schedule and would feel quite ill the week prior to the next infusion. We went to a 3-week schedule and it has made all the difference. I no longer have a bad week and symptoms that had previously lingered over the course of the entire month have disappeared. Also, I was diagnosed with autoimmune hives and have been told that anything that affected my immune system could start them up; from any kind of illness to the IVIG infusions themselves. So for me, the hives weren't a reaction to anything in the IVIG, but due to my immune system getting a kickstart. It might be worth testing for. I take IV Benadryl & Decadron (steroid) with the infusions and regular Benadryl pills as needed (usually 1 or 2 daily) and have since broken out with hives only twice since I started the infusions in 2008.
[QUOTE=kelli1b;3903156]I was recently diagnosed with CVID after YEARS of illnesses and unnecessary surgiers probably caused by the CVID. I was told the most common side effect of it were IBS & arthritis. I have the arthritis bad some days manageable the rest. Rheumatoid DR. says he can't treat me yet because all meds supress immune system......

So here's my problem. 1. I seem to be EXHAUSTED like never before. None of my habits have changed. I am busy but manage to get about 7 hours of sleep a night. I am a single parent, 37, to a 5 yr old, work about 9 hours a day and attend school online (3/4 time) so that takes about 20 hours a week. I have very little help from anyone. I did NOT pay attention to when the fatigue started but it is dramatic. I don't know if it happened towards the end when I was due for an infusion. I SPECIFICALLY asked my DR. if CFS was associated with it and she said no??? The infusions WIPE me out. I get migraines (we kept the IV's pretty slow this time and the migraine didn't start till hours later) and sudden nausea. I had some Zofran which seems to help.

Is this normal? This diagnosis was supposed to be "life changing" for me. No more bronchitis, sinusitis, pneumonia and ear infections! Now I can barely do the dishes? Am I crazy? Am I imagnining the fatigue and feeling HORRIBLE after the infusions? They are working because I was around 6 sick people and didn't get sick. I'm trying to exercise for 30 minutes during my lunch hour 3x's per week, trying to quit smoking, etc.

Any advice would be GREATLY appreciated. I really don't want to be a horrible, sickly, always in bed mommy :confused:[/QUOTE]
HI,I have IviG treatments every 4 wks. Unlike you however, they do make me feel so much better after I have them. Could you possibly be getting too much or too little. I am 5'1" and weigh 120 lbs. I receive 400/1 large bottle of IviG. They also run 50cc of saline prior to the IviG and 50cc after completion of the IviG. Also I receive 1 tylenol and 25cc of Benedryl before they begin the iv. I run down by the 4th week and my dr. has determined that every 4 wks is right for me. I did have the same symptoms you are describing when I was first diagnosed with this in 1992. The really bad fatigue lasted 7 years and now I am much better than I was then. Please write back and we can talk some more about our symptoms and see if we can help one another.
I am now 38 and have been on the IVIG for a year. My new doc, the HIV specialist, switched me from Phlebogamma to Carimune. So I stopped getting the horrific side effects (migraines, sudden nausea, extreme pain). I would just have flu like symptoms, stay in bed, and by Sunday evening I was great again. Now I get Rigors, freaky but not life threatening. Then I started noticing I was getting minor infections and really bad pain on my 4th week. So doc upped me to 24/grams (5'3, 140lbs). This last time the 4th week was HORRIBLE. LIke I had a major "crash"? Thats the best I can explain it. I couldn't think straight, finish my sentences, the last 2 days my boss barely gave me any work, aggitated, it was so weird. What WAS that? Freaked me out! I had my IVIG on Friday and started feeling the Rigors coming on, so I asked them to stop and slow it to 100cc/hr. The migraine I had last night was AMAZING. I take pain meds and 50mg's of Benadryl before. They do not run any saline with this brand. I don't hydrate well so I assumed I needed some Gatorade. Finally feeling better (better meaning no pain) tonight. I saw my doc before this IV and told him if I had another reaction he HAD to consider the SCIG. The last infusion I had Rigors, they gave me 100 mgs total of Benadryl, I picked up my daughter after, came home and passed out (it had been several hours since I had taken the Benadryl). She is 6 and ran AMUCK in my house. I told him I can't go through that. He sounded really concerned about the SCIG, talking about side effects, skin infections. My thoughts are they wouldn't be anything compared to what I am going through now. I can't imagine doing the IVIGs more often, we barely have a life now :-( Is there something I'm doing wrong? I'm not in school anymore, that was impossible. I bought a Wii to exercise and have yet to do it with the whole can't sleep can't wake up thing. I still believe that having a diagnosis is a blessing, I finally got help with my daughter on these weekends, but man, going thru this alone, in that kind of pain last night, I just don't want to do them anymore.
I don't know if this will help anyone, but the first 2 times I had IVIG I was in the hospital with a severe nocardia infection in my lung. I started shaking in the middle of the infusion and felt horrific after it was done. I almost wasn't willing to continue with them, but what seems to have happened is that it kick started my body to fight the abscess. I felt horrible because my body was doing what it was supposed to. Once I had surgery and the infection cleared up, I had no problem with the infusions. I usually feel fine after and quite well the next day. Every once in a while I'll feel bad after an infusion and I usually take it to mean my body is fighting off something, generally sinus issues. Like today, they took my temp before the infusion and it was high, but I didn't feel very bad. By the end of the 5 hours, though, I definitely was feeling like I was coming down with something. Perhaps feeling bad afterward indicates an unresolved infection. Overall, my number of infections and illness are much reduced.
I too get sick after infusion. I get IVIg 3 days per month for Polymyositis. They never infuse at a rate higher than 190 and I still get severe migrains hours after the final infusion. Getting rid of the headache is a challenge and, as funny as it may sound from a 50 year old guy, marajuana is the only thing that gets rid of it. I have several nephews and sons that get me a cookie or brownie when I need it. I don't use it any other time except when I do the IVIg. I also struggle for 3 days or so with extremely bad arthritis in knees and hip as well as severe tenderness in all connective tissues in the legs and shoulders. Weakness and muscle pain go along with PM but are magnified for a few days following IVIg. I have only completed 3 cycles of the infusions and so far am only seeing benefit in my eye muscles which are under attack. I am extremely hopeful the the benefit will begin to spread to the other affected muscles.
If your doc doesn't know of people having reactions following IVIg...this is one more you can send her! In fact, you can also tell her that 3 weeks following my first 5 day infusion I developed a DVT in my calf muscle and had to go on coumadin and delay the 2nd IVIg until the clot was gone. I am now permanently on coumadin in order to continue the IVIg. It can cause a host of problems for some. Sounds lilke your doc doesn't read much...There is a ton of info out there! Good Luck.
Wellness and Happiness are an "inside job"... You wont be a sick mommy for the simple fact that you don't want to be! Being a single mom is a tough gig and my hat is off to you. That 5 year old keeps you moving everyday and doesn't give you time for the "pitty pot"...That's what keeps you in the game! Best of luck to you!
I hope my story will show you that you're not alone in what you've been experiencing with IVIG, and - more important - that there is a far less toxic alternative!! So here it is: After being diagnosed with PI more than a decade ago, I, too, started IVIG, first every 28 days, then every 21 - and I, too, had horrific reactions: fever, severe flulike symptoms, hallucinations, shaking sweats, paralyzing fatigue, inability to move my limbs and more - for 4-5 days (and sometimes more) after each infusion. These reactions occurred pretty much unchanged no matter what brand of IVIG I tried, and no matter what precautions me & my doc took (extremely slow rates of infusion, steroids, hydration, Benadryl, etc). Between the disease of PI & all its attendant infections & the toxic nature (to me) of the principal treatment, IVIG, my life was nearly destroyed. I lost my ability to work, socialize, have any semblance of a normal life. Worst of all, I nearly lost custody of my son because I had a disease whose treatment made me too sick to function & "out of my mind" for nearly a full week out of each month! In desperation, I went off IVIG for 6 months to see if I really needed it, with the result that I got so sick that I was repeatedly taken to hospital via ambulance & came close to death on two occasions. So in even more desperation than before, around 2005 I decided to start my own research rather than just relying on what my doctors knew at the time. Thanks to the growth of the Internet that had occurred at that time, and was continuing to occur in leaps & bounds (this was in 2005)I was able to find out a lot about how PI was treated in other countries, & learned that throughout the rest of the world, IVIG for PI (& most other things) had been abandoned decades ago, replaced by far less toxic subcutaneous ("subQ") formulations. Only in the US were doctors resistant to subQ IG, based not on scientific evidence but on all sorts of unfounded beliefs like the hogwash your doc has told you. But fortunately for Americans with PI like us, in February 2006 the US FDA finally approved Vivaglobin, a subQ form of IG, for use here. I started on Vivaglobin shortly after it first became available here, & from the start I was able tolerate it with NONE of the problems I had with IVIG, only mild fatigue & joint aches the following day (which stopped after the first 18 months). I do my infusions myself at home (or wherever else I am) once a week, and in my case it takes about six hours. So please take the advice of others who've said 1)start getting more info on your situation & options < edited >, and 2)look into Vivaglobin!! I'm now entering my fifth year on this subQ form of IG, and in my case it's proven far, far less toxic & more effective than any brand of IVIG. It's played a big role in helping me to get back to a much better level of health, and a dramatically better quality of life (complete with custody of my son, thank God). One last thing: a doctor specializing in HIV like yours does not necessarily know much about PI. In fact, they usually know next to nothing. HIV/AIDS & PI are very different; you need a physician who is a specialist in your condition.
Well, Kaiser had 1 person in all of Kern County who could treat it, an allergist. The second I broke out with eczema (which I've had for 20 years) she refused to treat me. I insisted they find me someone and this is who they found, an outside doctor. He treated me over the phone for practically a year because of the whole "referral" issue.

My health has improved dramatically. I was having bronchitis, sinus infections & ear infections about 8 x's per year (to list a few). I've really only had 2 sinus infections and pneumonia once and they were, well, minor compared to how sick I used to get.

I did talk to the nurse about Privigen and Gamunex so we will see. Im due for another infusion next Friday, lots of anxiety. The spinal migraines are.....i have no word for how bad they are after. Hopefully they will have a new product for me and if not, I'll just keep calling the doc and hoping he will agree to scig some day. Serious, if it wasn't for you all on here and you graciously sharing your experiences, I would be lost.
Hi everyone! I had my IV yesterday so I wanted to update.

1. They did NOT have the new brand I requested, still Carimune.
2. I stayed at infusion rate of 100/ml and did not get the migraine last night, minor headache & sever fatigue only.
3. I got my labs from last month and I'm a little concerned - IgG 662, IgA <25, IgM <20. I never knew the others were so low, shouldn't they be higher after a year of infusions? Is that normal with CVID to have all 3 low?

My other concern is my platelets have dropped, still normal at 357 BUT in 2001 I had a splenectomy due to ITP so my platelets have been really high all these years, so high I used to get worried. So the 357 is a dramatic drop (in March they were 436).

Am going to put a note in to my PCP today to see what he says.

Also, just a follow up: Kaiser in my County does not have an immunologist. I would literally have to drive 2 hours in one direction to see a doc and there is just no way for me to do that for many reasons.

Any input on the labs would be greatly appreciated. :wave: Thank you all.
Are you latex allergic?
I have been on IVIG for 5.5 years and have reactions every time I infuse. We have tried everything, they an not serious reactions as they do not affect my breathing. I get the headaches, vomitting, diaharrea and it starts when I am about 1.5 way though the infusion.

The arm pain is from the cold going in your arm, wrap a warm blanket around it, or have them put a port a cath in, I have infustions every 21 days for CVID and they put the port a cath in 2years ago, no more arm pain.

I am allergic to latex so I am on a latex free product, but still react. They can give you prednisone and Benedryl IV before infusion and it helps, I keep up the benedryl at home for the next 2 days. I still feel crappy but its worth the feeling well for the next 2 weeks and not getting sick from everyone. Also I was prescribed a medication for vomitting as gravol does nothing it is called Metoclooramide HCL and Tylenol 4 for migrane.

My immunologist recently has suggested that I try the sub Q for smaller reactions as it is approved here in Canada now, but not so keen on that as I do have a port in my chest and I think I would rather feel bad for 2 days than just a little crappy every other day. I am used to it now.:wave:
Hi there! No I'm not allergic to latex. I have been repeatedly asking them to change my brand and I think they are going to FINALLY do it. I printed out a chart I received, sent it to my doc and he called me to discuss it. Cross your fingers. I go Friday for my infusion.

I've been wrestling with the idea of "insisting" my doc switch me to sub-q. I don't know if I want to be tied up once a week or continue to knock it out once a month and be down a couple of days. I have Kaiser so I'm a little worried about my benefits running out. I try not to think about that part haha. I will update this weekend if I got my new product.
[QUOTE=kelli1b;3906181]UPDATE: They might have to take me off the infusions :( It appears I'm having a reaction, a rash and I have dyshydrotic (dis-hi-draw-tic) Eczema which has BLOW up out of control. My dr. is going to treat the eczema and skin test the IVIG to see if I have a reation to the skin test. She has no reports of migraines, sudden nausea and arthritis 24 hours after infusion. So unless she reads it or hears it from another doctor, she's going to consider it a reaction. I feel better today but the rash is spreading. Say a prayer. It was the first time in 5 years that I have been around that many sick people and I DIDN'T get sick. I don't think the sub q has been approved for Kaiser yet but she did say she would check into it. This could be devastating if I don't get these. I will lose my job due to such frequent illnesses.....does anyone know of a website I can refer her to that shows people actually do get sick for a few days after? She said because I didn't have any symptoms DURING infusion, that the reaction didn't start till the next day IT IS NOT due to infusion rate. Period. I've read the other posts and will see if the nurses will agree to go slower...any suggested rates?

Sorry, I know I'm rambling...everyone else thinks I'm crazy, hypochondriac[/QUOTE]

My advise is to get kaiser to allow you to see an experienced physician who treats a large population of PIDD patients or to pay for an appointment your self. I think that any time you have to look for articles to inform your "expert", you have a problem.
Another alternative is that the Immune Deficiency Foundation has a program where your physician can talk with an experienced doc who treats PIDD patients as a consultation at no charge to the doc , your insurance company or you. There is more information on the IDF website, look for the Consulting Immunologist Program

The website says, "Physicians--Give your patients the benefit of a second medical opinion on primary immunodeficiency diseases from a national network of renowned immunologists.

The IDF Consulting Immunologist Program is a physician-to-physician service that provides a free second opinion or consult on primary immunodeficiency diseases. Through our team of expert clinical immunologists, IDF has provided free consults to physicians since 1998.

The IDF Consulting Immunologist Program offers:

* Free physician-to-physician consults
* Consults or second opinions on issues of diagnosis, treatment and disease management
* Access to faculty of recognized leaders in clinical immunology

Physicians may use the form below to access the Consulting Immunologist Program or call the Consulting Immunologist information line at 877-666-0866, Monday - Friday, 9:00 am - 5:00 pm Eastern Time.
Kelli,
It really sounds like you need a new doctor.

I have CVID-hypogammaglobulemia specifically (low IgG antibodies). I'm given Decadron (it's a glucocorticosteroid like Prednisone) and Benadryl prior to the IVIG infusion to prevent reactions. I've been doing this for going on 2 years now and have had no adverse reactions to the IVIG, no issues from the steroid and no illnesses. When I first started receiving IVIG, I would get headaches and feel bad AFTER the infusion was done, not during. We slowed the infusion rate and I have no problems at all now. This doctor sounds like they are not willing to listen or work with you. We also switched me from every 4 weeks to 3 weeks and it has made all the difference in the world. I really feel almost normal all the time now. Look up "IG Living" online. It's a free magazine dedicated to people receiving immune globulin therapy. I believe they have the issues online now, you just need to sign up.
[QUOTE=becalizard;4262411]Kelli,
It really sounds like you need a new doctor.

I have CVID-hypogammaglobulemia specifically (low IgG antibodies). I'm given Decadron (it's a glucocorticosteroid like Prednisone) and Benadryl prior to the IVIG infusion to prevent reactions. I've been doing this for going on 2 years now and have had no adverse reactions to the IVIG, no issues from the steroid and no illnesses. When I first started receiving IVIG, I would get headaches and feel bad AFTER the infusion was done, not during. We slowed the infusion rate and I have no problems at all now. This doctor sounds like they are not willing to listen or work with you. We also switched me from every 4 weeks to 3 weeks and it has made all the difference in the world. I really feel almost normal all the time now. Look up "IG Living" online. It's a free magazine dedicated to people receiving immune globulin therapy. I believe they have the issues online now, you just need to sign up.[/QUOTE]

There aren't any other docs. I've taken the advice of some other posters on here and reached out to my Primary doc to get a referral to see an immunologist out of town, with no luck, he actually completely ignored my email.

The reactions are not nearly as severe as they were in the beginning. I do feel pretty horrible that whole night. Then Saturday I'm in bed with an outrageous fatigue, better by Sunday evening. I wonder if my hematologist can help me? Maybe I'll email him :cool:
I think he is going to try for my next IV on Friday for the Gamunex, then if those go well he agreed to home infusion. I know on the Privigen, I hurt ALL the time, like excessively, so I'm crossing my fingers for Gamunex.

I also just sent my hematologist an email practically begging for a name of an immunologist. Hopefully he will provide one.

I have been getting this weird red splotchy rash every time I get out of the shower, so I asked my doc if it could be possible for me to have Lupus. He said NO, those are counter indicative of each other, complete opposites. I don't think thats the case so yeah, I'm totally frustrated. I posted a pic on my FB because I have a couple CVID people on there. Is there a test for Lupus? I really don't want another stinking diagnosis, but, some things just arent matching up to just CVID. I have pain in weird places. I've also had my fingers turn completely white and numb and my doc blew that off too. I asked him about Lupus because of 1. The Rash and 2. Reynauds (did i spell that right) is also associated with Lupus and 3. The weird pain.

Anyways, trying to go on life as normal :) lol. Work full time, be a single mama and try to be my own best advocate. I couldn't do this without you all.
Hi Kelli,

I'm new to this. I've had one infusions, but moved so am waiting for a new doctor appt.



Your schedule is REALLY heavy. Anyone would be tired on it. I don't know a lot about CVID yet but enough. If you can cut your schedule down, you'd be better off.

From what I understand, people with CVID can have spleen, pancreas, gallbladder and liver problems (all more of a risk in getting with a stressful schedule). All which added together with CVID, you can be very tired. Even with only CVID you can be very tired. In bad situations you can end up with bone marrow problems, which if you have that, you would definitely be very tired.

Don't forget you could have another auto-immune too. Gluten intolerance is one. You can feel pretty sick eating food with gluten.
Read up on it all online. Some of the information is emerging studies work.

I think I remember reading there is more then one way you can get the infusions if the ones you're on are too hard on you. Read internet information before you tell your doctor that though. Be the boss of your condition.

Oh- and having CVID, you may not even get sick ( that's what's happened to me.) BUT it you really are, the only symptom is usuually more fatique. BUT THEN ALL OF A SUDDEN you get pneumonia.

Best of luck - to all

J London



[QUOTE=kelli1b;3903156]I was recently diagnosed with CVID after YEARS of illnesses and unnecessary surgiers probably caused by the CVID. I was told the most common side effect of it were IBS & arthritis. I have the arthritis bad some days manageable the rest. Rheumatoid DR. says he can't treat me yet because all meds supress immune system......

So here's my problem. 1. I seem to be EXHAUSTED like never before. None of my habits have changed. I am busy but manage to get about 7 hours of sleep a night. I am a single parent, 37, to a 5 yr old, work about 9 hours a day and attend school online (3/4 time) so that takes about 20 hours a week. I have very little help from anyone. I did NOT pay attention to when the fatigue started but it is dramatic. I don't know if it happened towards the end when I was due for an infusion. I SPECIFICALLY asked my DR. if CFS was associated with it and she said no??? The infusions WIPE me out. I get migraines (we kept the IV's pretty slow this time and the migraine didn't start till hours later) and sudden nausea. I had some Zofran which seems to help.

Is this normal? This diagnosis was supposed to be "life changing" for me. No more bronchitis, sinusitis, pneumonia and ear infections! Now I can barely do the dishes? Am I crazy? Am I imagnining the fatigue and feeling HORRIBLE after the infusions? They are working because I was around 6 sick people and didn't get sick. I'm trying to exercise for 30 minutes during my lunch hour 3x's per week, trying to quit smoking, etc.

Any advice would be GREATLY appreciated. I really don't want to be a horrible, sickly, always in bed mommy :confused:[/QUOTE]
Hi Kelli
I was on IVIG treatments for around 4 years and dealt with many problems associated with that treatment. Recently though, my physician moved me over to Vivaglobin which is a subq injection once a week instead of once a month. It cuts down on so many reactions and problems that are associated with IVIG. It is also much quicker, I do not know your infusion rate or amount you get infused each time but I know that my infusions lasted from 2-4 hours depending on how fast they would let it infuse. The subq for me lasts not much longer than an hour and is much more convenient for my lifestyle. You give yourself then injections, but instead of one needles its more around 4-8 needles depending. Its basically pain free and keeps your peaks and troughs (highs and lows) more stable. I was a college/professional baseball player, so when I moved from IV to SUBQ I could tell a difference in how much better I felt. I have also heard that they are coming out with a new type of subq infusion coming out that will cut down on reactions even more! I haven't read much about what everybody else has said but it is definitely something that you should talk to your primary physician about. Hope this helps and if you have any questions let me know.
T
[QUOTE=Wolfpacker1;4637082]Hi Kelli
I was on IVIG treatments for around 4 years and dealt with many problems associated with that treatment. Recently though, my physician moved me over to Vivaglobin which is a subq injection once a week instead of once a month. It cuts down on so many reactions and problems that are associated with IVIG. It is also much quicker, I do not know your infusion rate or amount you get infused each time but I know that my infusions lasted from 2-4 hours depending on how fast they would let it infuse. The subq for me lasts not much longer than an hour and is much more convenient for my lifestyle. You give yourself then injections, but instead of one needles its more around 4-8 needles depending. Its basically pain free and keeps your peaks and troughs (highs and lows) more stable. I was a college/professional baseball player, so when I moved from IV to SUBQ I could tell a difference in how much better I felt. I have also heard that they are coming out with a new type of subq infusion coming out that will cut down on reactions even more! I haven't read much about what everybody else has said but it is definitely something that you should talk to your primary physician about. Hope this helps and if you have any questions let me know.
T[/QUOTE]

Hi there!!! Thank you for responding. Funny, I just switched to Vivaglobin about 10 weeks ago (if I remember correctly how many it says I've done in my little tracking book lol). I am FINALLY doing very well on it. For the first 6 weeks it was really hard. I was having major fatigue after and couldn't see the reason to do subq over ivig if I wasn going to be sick EVERY weekend versus once a month. But it finally went away and now my subq is going awesome. I've gotten sick since I started it which is weird because my levels are the highest they have been since I started with Ig. I appreciate you responding to this though. CVID is hard to deal with. Also from experience, I know people read these threads no matter how old they are :)
I am new to HealthBoards....just found it! Wow, what great information and sharing of stories. I am 43, and was just diagnosed with CVID a year ago. I have been receiving IVIG for over a year now. I have looked and looked for information about IVIG infusions, and have never been very successful finding much information. Reading these threads has been incredibly helpful!!! It has really been a mystery to me about what side effects to expect, and if the side effects I was having are "normal". I know quite a few of you have been on this message board for quite some time, but I just wanted to say thank you for sharing stories and such an incredible wealth of information.

I am realizing now how blessed I am with my treatments. I was going to suggest a few things to Kelli, but I just finished reading the more recent threads that you are not doing the SubQ treatments.

I have an excellent immunologist here in Houston, TX. She had originally chosen to use Carimmune in my treatments but it was not available when I started them, so we went with Gammagard. I have my infusions every 4th Friday and, at the most, I am down for the weekend.

I used to complain at the slow, slow rate she insisted on infusing, but I now have a huge appreciation for slow. I am usually there for about 6 or 7 hrs for 30 grams of Gammagard. From the very beginning, she has given me IV Benadryl and a shot of Zofran prior to my infusion. I have very few side effects.

About my 6th or 7th infusion, I went for my treatment on a Friday, got home and I had a severe migraine and was down for days after that infusion. I ached so bad all over that I could hardly get out of bed. I called the infusion center to see if anything different had been done, or if they maybe forgot the Benadryl??? Come to find out, they had given me a different product, Privigen. Which I have learned is an excellent product, but it did not agree with me at all.

I was very glad to see that you have found something that is working better for you. I can truly say that my immunologist must be doing something right. She has told me from the very beginning that she insists on infusing at a very slow rate, and it makes a big difference in the severity and type of side effects. There are very good doctors out there, so I hate that you have had such a rough experience. Hopefully, your new method will work better for you. I love going once a month. Even though it is a long day, it is well worth less side effects. This immunologist swears that a very slow rate makes all the difference in the world. She also tells me to take Advil the day before and during if necessary. It definitely helps.

Good luck with your continued treatments. I look forward to "keeping up" with everyone's progress and ideas. It has been a wealth of information reading these posts. Thanks everyone for sharing!!
Hi,

I had my 4th infusion yesterday. I get a headache, but i assumed it was from sitting there and the benedryl they give me. My first infusion, my blood pressure dropped really low...and they stopped the infusion and started it up again really slow. I think it was nerves, but my bp is always pretty low.

Today, I am exhausted, but it's hard to tell if it's from work or the infusion.

How low was everyone's numbers? My IgG was 52 and IgA was <4.
[QUOTE=Gcurious;4687208]Hi,

I had my 4th infusion yesterday. I get a headache, but i assumed it was from sitting there and the benedryl they give me. My first infusion, my blood pressure dropped really low...and they stopped the infusion and started it up again really slow. I think it was nerves, but my bp is always pretty low.

Today, I am exhausted, but it's hard to tell if it's from work or the infusion.

How low was everyone's numbers? My IgG was 52 and IgA was <4.[/QUOTE]

Are you hydrating well? I drink smart water before and tons of gatorade after. Helps with those spinal migraines. My IgG was low 300's before, now over 1000 and I am also deficient in IgA and IgE.
[QUOTE=kelli1b;4687254]Wow not a bad speed at all LUCKY duck lol Most people get is slammed into them :) Well, unfortunately sometimes the headaches and flu like feelings cannot be helped. I mean Im not a doc but I gave you all my tips lol. For me the trick was trying different brands but I mean I got DEATHLY ill from them. Now am on subcutaneous infusions and have no side effects at all.[/QUOTE]

well, the first infusion, my bp dropped to 79 over 50. They're afraid to go fast/
My blood pressure always drops quite low also. One thing my immunologist won't budge on though is the infusion rate. I get mine at 60, and it is definitely an all day affair. But I have realized, that at 60, the side effects are very minimal....for me atleast. I have heard that is really slow. I have read where people get theirs in just a few hours, but I am willing to make a day of it for less side effects.

As KelliB said, I think fluids are critical. I took her advice with the smart water the day before, and I drink fluids the day of, and it has really helped with my headaches. I also take 800mg Ibuprofen the morning before and about 6 hours later.

Also, the brand of your IVIG can be a big factor. I've been on Gammagard for over a year and I have had no problems. Except for the one time the clinic tried to switch brands without my knowledge and I had a severe headache.

My IgG was below 200 to start and IgA was around 40. Now up to around 750 consistently and doing pretty well overall.

Good luck with your continued treatments.:)
[QUOTE=cowensrph;4689934]My blood pressure always drops quite low also. One thing my immunologist won't budge on though is the infusion rate. I get mine at 60, and it is definitely an all day affair. But I have realized, that at 60, the side effects are very minimal....for me atleast. I have heard that is really slow. I have read where people get theirs in just a few hours, but I am willing to make a day of it for less side effects.

As KelliB said, I think fluids are critical. I took her advice with the smart water the day before, and I drink fluids the day of, and it has really helped with my headaches. I also take 800mg Ibuprofen the morning before and about 6 hours later.

Also, the brand of your IVIG can be a big factor. I've been on Gammagard for over a year and I have had no problems. Except for the one time the clinic tried to switch brands without my knowledge and I had a severe headache.

My IgG was below 200 to start and IgA was around 40. Now up to around 750 consistently and doing pretty well overall.

Good luck with your continued treatments.:)[/QUOTE]

I have been getting IGG infusion for the past 5 years and had bad reactions quite a number of times when they tried to speed it up. I am now being infused slowly (all day affair), in addition to the IGG they gie me 1000mg of Tylenol, 50mg of Benadryl and 10mg of Decadron. THe addition of the Decadron has just about eliminated any reactions I have, as long as they keep it slow.
My problem is I also have Lupus/RA and I am getting more infections, ie boils, sinus and upper respiratory. I see my Rummy on Tuesday and talk to him about the Decadron. I hope this helps with any reaction. I also asked about subcutanous infusion and was told that with the amount of reactions they would not chance me not being in a hospital setting.
[QUOTE=skampf;4692891]I have been getting IGG infusion for the past 5 years and had bad reactions quite a number of times when they tried to speed it up. I am now being infused slowly (all day affair), in addition to the IGG they gie me 1000mg of Tylenol, 50mg of Benadryl and 10mg of Decadron. THe addition of the Decadron has just about eliminated any reactions I have, as long as they keep it slow.
My problem is I also have Lupus/RA and I am getting more infections, ie boils, sinus and upper respiratory. I see my Rummy on Tuesday and talk to him about the Decadron. I hope this helps with any reaction. I also asked about subcutanous infusion and was told that with the amount of reactions they would not chance me not being in a hospital setting.[/QUOTE]

Hi there,

Subq has VERY few side effects if any for most people. Common settings are at dr.'s office/in hospital for first few times patient learns how to do it OR at their own home with a special nurse that comes to you and teaches you how to do it. They are trained for this sort of thing. I switched to subq after all the drama with IVIG and now have little to no reactions what so ever. Its a wonderful option for those of us who don't tolerate IVIG well. Are you seeing an IDF recommended Immunologist? If not I would highly recommend doing that. If you are getting more infections and having reactions I would think your treatment plan needs to be re-evaluated. Good luck!!
Hi, I came across your message while searching for a doctor to treat my CVID in Houston. You mentioned that you like your doctor. Does she have lots of experience with CVID? What do you like about her? Would you be willing to share her name with me so that I can see her as well?


[QUOTE=cowensrph;4685507]I am new to HealthBoards....just found it! Wow, what great information and sharing of stories. I am 43, and was just diagnosed with CVID a year ago. I have been receiving IVIG for over a year now. I have looked and looked for information about IVIG infusions, and have never been very successful finding much information. Reading these threads has been incredibly helpful!!! It has really been a mystery to me about what side effects to expect, and if the side effects I was having are "normal". I know quite a few of you have been on this message board for quite some time, but I just wanted to say thank you for sharing stories and such an incredible wealth of information.

I am realizing now how blessed I am with my treatments. I was going to suggest a few things to Kelli, but I just finished reading the more recent threads that you are not doing the SubQ treatments.

I have an excellent immunologist here in Houston, TX. She had originally chosen to use Carimmune in my treatments but it was not available when I started them, so we went with Gammagard. I have my infusions every 4th Friday and, at the most, I am down for the weekend.

I used to complain at the slow, slow rate she insisted on infusing, but I now have a huge appreciation for slow. I am usually there for about 6 or 7 hrs for 30 grams of Gammagard. From the very beginning, she has given me IV Benadryl and a shot of Zofran prior to my infusion. I have very few side effects.

About my 6th or 7th infusion, I went for my treatment on a Friday, got home and I had a severe migraine and was down for days after that infusion. I ached so bad all over that I could hardly get out of bed. I called the infusion center to see if anything different had been done, or if they maybe forgot the Benadryl??? Come to find out, they had given me a different product, Privigen. Which I have learned is an excellent product, but it did not agree with me at all.

I was very glad to see that you have found something that is working better for you. I can truly say that my immunologist must be doing something right. She has told me from the very beginning that she insists on infusing at a very slow rate, and it makes a big difference in the severity and type of side effects. There are very good doctors out there, so I hate that you have had such a rough experience. Hopefully, your new method will work better for you. I love going once a month. Even though it is a long day, it is well worth less side effects. This immunologist swears that a very slow rate makes all the difference in the world. She also tells me to take Advil the day before and during if necessary. It definitely helps.

Good luck with your continued treatments. I look forward to "keeping up" with everyone's progress and ideas. It has been a wealth of information reading these posts. Thanks everyone for sharing!![/QUOTE]





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