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Hi There,

I have chronic pain too, and I agree with Sally big time. I am on pain medication because its the only thing that helps me to be able to have a life. My pain is dibilitating too, and I spent a lot of time in bed because of it before the medication was offered. It is very important to find a good pain management doctor (and a good one is not always easy to find trust me!!) to help you with this pain. It is true that there are alternatives out there like Sally listed and the best thing to do is figure out which one works best for your body. I have a very high pain threshold now and I still have some pain with the meds that I take. I do find that they help me though, and thats what worked for me.

Iwantacure: I do agree with some of what you have said in your post. Prednisone is a nasty drug.. I had to take a LOT of prednisone for about four months. When I say a lot, I mean 100mg every day for a month and then 80 for a month, 60 for a month etc. I gained so much weight that I felt like a beached whale!! It did help SO much with my joints, hair loss, rashes etc though! Prednisone does cause weight gain in some people (most people) but some lose weight on it. The reason why people gain weight on prednisone can be 1) from the drug itself 2) from eating too much because prednisone makes you very hungry (in some patients). You do lose the prednisone weight eventually once you come off of it, but it can take some time. It took me 2 and 1/2years to start losing the weight I had gained let me tell you!!! But it does come off for the most part if you follow a healthy eating guide (in a huge percentage of patients, but sometimes a handful will have lifelong weight gain). You can have vision changes with the Prednisone too, and a lot of the time they are reversible once the prednisone is stopped. One of these vision problems is glaucoma when prednisone is taken over a long period of time or at a high dose for awhile. There are some patients that do not regain vision if they had lost it, but again there is a huge population of people that regain their vision back to normal. Plaquenil can cause vision problems IF you are on a high dose of it. I am on 200mg and my Opthalmologist said that you won't get damage occuring in the eyes if you are on a dose under 600mg a day. Make sure you get your vision checked every six months if you are on this medication. Some people do not develop these complications, since everyone is different. I would rather be on a medication to treat the underlynig problem then continue putting "bandaids" on it with pain medications! My dose of plaquenil needs to be increased, but my Rheumy isnt listening yet.. still working on him!

Pain is such an individual thing. Make sure you explore all of your options with regards to pain management and find one that fits you! I agree that coming to this Lupus board is a great way to vent your frustrations and it does help!! Please take care and hope to hear from you again soon!!

~Luv, Angelic
Iwantacure,

I am sorry that it took me so long to post a reply to you regarding my vision problems. I think that I need to clarify a lot of the details, because you are getting the wrong idea of what I was trying to say. I work in the medical field and have explored ALL avenues related to my vision. I attended a world wide medical conference to both learn, and assist with eye issues in relation to Lupus and Antiphospholipid Syndrome. I have seen the world's best Rheumatologist and know several others that would disagree with your comments about Prednisone and Plaquenil both. These drugs do have side effects yes, but everyone is different and some people are not as affected as others. Also, I want to say that without Prednisone and Plaquenil, I know THOUSANDS of patients that would be dead right now. I would be included in these dead patients.

It is great to arm yourself with plenty of information, but some of it is outdated or just plain wrong. I do research on the net also, and some sites need to be shut down becuase of their inaccurate and outdated information. Everyone that is on Prednisone or any other medication related to Lupus knows the side effects. We also know that if we DONT take them then we could be dead. Death, or life with prednisone? Not a hard decision.

As for my vision problems, I am going to fully fill you in on what my struggle has been with this problem. I have had flare ups of Optic Nerve inflammation for the last twelve years. I had a tiny bit of vision loss but it would always resolve on its own. My latest bout of Optic Neuritis has been the worse one EVER. I ended up losing almost ALL of my site in about two weeks. This problem is not corrected with "contacts" or "glasses". The only way to deal with this problem is to use a cane, or a guide dog. I am 28 years old, and I am sorry but if I know that Prednisone may bring my vision back, I just might risk the side effects to have a chance. My vision is worse than 20/400... basically its called "counting fingers" from two feet away. I also must add that my vision is DOUBLE too. Not really fun to move around let me tell you. AND no drug caused my vision loss, it was my Lupus and the APS. Recently I was told that Neuropathy is developing at a VERY fast rate in both of my eyes (NOT related to Plaquenil or any other drug) because the inflammation has been so long standing. Neuropathy= Nerve damage and death which means the chances of my vision returning are getting worse and worse everyday. I am a woman of faith, and I know that I will be okay.. but it still scares the pants off me! In the prime of my life I have been devistated by vision loss. I also have really severe Lupus too. I have inflammation all over the place causing a lot of pain. My joints are breaking down (not from Osteo) and I have a ton of other Lupus stuff going on. I wish I had of had a choice of whether or not I could lose my vision.. and Lasik and other eye treatments will not work for me.

When this vision stuff started, I was also having mini-strokes and tons of Lupus symptoms. I almost died in the hospital because of their negligence and they did NOT treat my eye inflammation at all which basically made the chances of it returning almost NOTHING. When I was released from the hospital, I was more sick then when I went in. And the worst part? The Neurologist that admitted me took no ownership and thought "Oh well, its only her vision." The reason why these doctors have treated me so badly is because one of them screwed up back 12 years ago and paralyzed me from the waist down in one hand.... "oops". They disregarded blatently obvious Lupus testing (99.99% Lupus.. and four tests, not just one) so the game they are playing is called "lets cover his butt!". I could have given up and gotten extremely bitter and angry, but I decided that I would take control of my health and find doctors that were interested in me and would look after me. I found the world's best Rheumy in England and travelled there... I didn't have a penny in my pocket three months before the trip... but it worked out. Then I found another highly respected doctor in another city to go to, and so on. I refuse to give in to my Lupus and I want to get better and move forward in my life. I am sick of being sick which I am sure many people can relate to!

No one understands what I go through on a daily basis, and I dont know what everyone here goes through on a daily basis. I am so lucky that I have a medical background... I come here so that I can help others to be diagnosed and I was up to 91 patients diagnosed because I helped them. I love exploring Lupus, Sjogrens Syndrome, Raynauds, and Antiphospholipid Syndrome. It is so exciting for me to be on the inside and knowing what all the "Top dogs" are researching. One would think that I could be arrogant and rude, but instead I try to help people on this board to understand what Lupus is and what it does. I never blatently say "Oh, DO NOT SEE THAT DOCTOR.... THEY SUCK" or whatever, instead I offer suggestions and try and send people in the right direction. Just because I had a problem with a doctor doesn't mean that the same doctor is BAD for everyone else. Different people have different experiences. I never come right out and tell people that they have Lupus or any other disorder because I cannot do that legally or morally. I get people to type out their blood work, questions and then I offer suggestions for the next step. I thank God that I was given the gifts in Lupus teaching and research and I will continue teaching until everyone is sick of me. :) I do not make judgements about others either when I don't know the whole story.

I was quite taken back by your post to me and didnt know what to say in my reply. I know that many others will say that they would rather be on the medications for Lupus and other autoimmune diseases then be dead or lose vital organs and require organ transplants or die. None of us chose Lupus, it chose us and we have to move forward with a good attitude. Being bitter or angry doesn't get you anywhere in life.

I would love to have contacts or glasses to help me see better, but it wont help. My Opthalmologist took the strongest lens that they make in the world and they didn't correct my vision. I would be so happy I would DIE if I could have Prednisone IV to see if it fixes the inflammation. 2 years ago ONLY my Opthalmologist looked after me because he believed that I had some very bad things happening in my eyes, and he has looked after me since. He does the best he can, and is sending me to NYC to see a Neuro-Opthalmologist so that I can have a chance to be a "seeing person" again. In my opinion, he is a God-send. And as a "young woman" I would rather live to be over 60 by taking medications to help me rather then worry about "looking good". I am not going to look good with kidney failure, liver failure or dead. I prefer life.

~Angelic

P.S. The Osteoerosis comment is unresearched also. People can develop Osteo from the Prednisone yes, but if the person is instructed to take 1000mg of Calcium/Magnesium every day then the bone loss is less. Yes you will develop some problems, but the severe osteo is if a patient is on more than 50mg per day for MONTHS.

In Reply to the post below dated March 19, 2005:

Do not listen to your optomologist!
Well I mean it. You don't expect him to tell you the truth about prednisone and plaquenil, don't you?. You need to uderstand that optomologists needs you in order to continue get their pay checks!. If they will tell you that prednisone and plaquenil in small doses won't harm you they are telling you lies.
Prednisone and plaquenil harm your vision and your eyes and it's IRREVERSIBLE as I explained before. You can search this on the net by looking at drugs harmful for the eyes.
There is no way in hell I would take a risk on my vision. If it was reversible I wouldn't mind but taking a risk without being able to fix them with lasik/laser it's out of the question.
What would you do if you get osteoporosis from prednisone? nothing but stop prednisone and take osteoporosis medications, then what?
Vision problems? just get ready to buy glasses and wear them till the rest of your life.
I understand that if you are a young woman you won't want to do that since even if you are ill with lupus or any other auto-immune disease you want to look good and doctors don't understand that.
YOUR OWN CHOICE. I wouldn't take any risk on vision and eyes, even the miminal risk.
Again, you won't be able to wear contact lenses if you are a female because when it comes to auto-immune diseases it's out of the question!
Again, have you ever seen an optomologist care that you are not able to wear contacts? no they don't care! There are always glasses to put on your face. All the healthy people around can do the laser/lasik but you will never be able to do it since you have lupus so please dont' harm your vision with those drugs!
I'm here to warn people about those drugs that are harmful for your vision and your eyes once it happens there is nothing you can do.
Thank you very much for reading my warnings and trust me, your doctor won't tell you. I had to search for this information and it is my responsibility to warn people who are thinking to take those medications and now you are well informed.

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Last edited by Iwantacure : 03-19-2005 at 06:24 PM.





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