It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Myositis Message Board


Myositis Board Index
Board Index > Myositis | 0-9 A B C D E F G H I J K L M N O P Q R S T U V W X Y Z


I use IVIG for my dermatomyositis (DM). I've been getting it off and on for 2 years now.

We've also been trying other drugs on me, and the breaks in the IVIG are to see if the other drugs are working. When I go back on IVIG after a break, my CK will (usually) drop by half each time, and then level off around 1,000. (I have not made it into remission once in the 3 years I've had DM.)

The only 2 things that have worked on my DM, at least to make it liveable, are high doses of prednisone and IVIG. And of course high doses of prednisone are only a short term solution, so I depend on the IVIG. (Methotrexate, azathioprine, cyclosporine, mycophenolate and cyclophosphamide have all failed to reduce my CK or boost my muscle strength.)

I get the IVIG in 2 six hour sessions in a clinic sitting in a layzboy type recliner. I suggest sleeping, reading, listening to an MP3 player. It is painless, just a bit weird having this tube in me.

And it seemed very weird going home with the IV still in me at night. I sleep with my arms around a pillow, to keep from sleeping on the IV site. What stays in your arm is just a flexible plastic tube. If there are every any problems, you just pull it out and put a bandage over it. I've never had any problems.

I can feel the benefits of an IVIG infusion after a few days. They last about 3 weeks and then slowly wear off a bit in the last week before the next infusion.

They give me an acetaminophen tablet and sudafed tablet around when the IVIG starts. I take the acetaminophen and sudafed again when I get home and before I go to bed. That helps keep minimize the headaches and body aches that I get for 1 to 2 days afterwards.

If also eat a banana a day and drink a reasonable amount of water the day before, during, and 3 days after I get the IVIG.

The IVIG gave me a bit of high blood pressure, which gave me terrible horrible migraines. If you find your blood pressure is high, discuss with your specialist if it is (s)he or your family doctor who should prescribe the high blood pressure medicine.

Once I was on the high blood pressure medicine, the migraines almost completely disappeared.

I don't get pain with my DM, so I can't comment on pain relief.

DM is a blood product, highly refined and treated to reduce the possibility of disease transmission as much as possible. But there are still theoretical risks of disease transmission.

The amount of IVIG needed to treat DM is so large it must be given over 2 days minimum, to avoid strokes. (Ten or whatever years ago, when IVIG was being tested in 10 patients with DM, they were giving it in one day, and one of the test subjects had a stroke.)

But DM doesn't have the liver and kidney damaging side effects or carcinogenic side effects of some of the other strong medicines used for DM.

Fortunately I live in Canada, and the death panels of our government run socialized medical care system make IVIG available completely free to anyone whose specialist can demonstrate a need for it (i.e. make a 5 minute phone call). I'm told the amount I use costs about US$20,000 every 4 weeks. If it wasn't for our universal medicare I could never afford that. If a co-pay is what I think it is, I couldn't even afford the co-pay.

Just to sum up, if your doctor thinks IVIG might work for you, I suggest you try it. If it doesn't do anything much after 3 treatments 4 weeks apart, abandon it.
[QUOTE=Keith2468;4116109]I use IVIG for my dermatomyositis (DM). I've been getting it off and on for 2 years now.

We've also been trying other drugs on me, and the breaks in the IVIG are to see if the other drugs are working. When I go back on IVIG after a break, my CK will (usually) drop by half each time, and then level off around 1,000. (I have not made it into remission once in the 3 years I've had DM.)

The only 2 things that have worked on my DM, at least to make it liveable, are high doses of prednisone and IVIG. And of course high doses of prednisone are only a short term solution, so I depend on the IVIG. (Methotrexate, azathioprine, cyclosporine, mycophenolate and cyclophosphamide have all failed to reduce my CK or boost my muscle strength.)

I get the IVIG in 2 six hour sessions in a clinic sitting in a layzboy type recliner. I suggest sleeping, reading, listening to an MP3 player. It is painless, just a bit weird having this tube in me.

And it seemed very weird going home with the IV still in me at night. I sleep with my arms around a pillow, to keep from sleeping on the IV site. What stays in your arm is just a flexible plastic tube. If there are every any problems, you just pull it out and put a bandage over it. I've never had any problems.

I can feel the benefits of an IVIG infusion after a few days. They last about 3 weeks and then slowly wear off a bit in the last week before the next infusion.

They give me an acetaminophen tablet and sudafed tablet around when the IVIG starts. I take the acetaminophen and sudafed again when I get home and before I go to bed. That helps keep minimize the headaches and body aches that I get for 1 to 2 days afterwards.

If also eat a banana a day and drink a reasonable amount of water the day before, during, and 3 days after I get the IVIG.

The IVIG gave me a bit of high blood pressure, which gave me terrible horrible migraines. If you find your blood pressure is high, discuss with your specialist if it is (s)he or your family doctor who should prescribe the high blood pressure medicine.

Once I was on the high blood pressure medicine, the migraines almost completely disappeared.

I don't get pain with my DM, so I can't comment on pain relief.

DM is a blood product, highly refined and treated to reduce the possibility of disease transmission as much as possible. But there are still theoretical risks of disease transmission.

The amount of IVIG needed to treat DM is so large it must be given over 2 days minimum, to avoid strokes. (Ten or whatever years ago, when IVIG was being tested in 10 patients with DM, they were giving it in one day, and one of the test subjects had a stroke.)

But DM doesn't have the liver and kidney damaging side effects or carcinogenic side effects of some of the other strong medicines used for DM.

Fortunately I live in Canada, and the death panels of our government run socialized medical care system make IVIG available completely free to anyone whose specialist can demonstrate a need for it (i.e. make a 5 minute phone call). I'm told the amount I use costs about US$20,000 every 4 weeks. If it wasn't for our universal medicare I could never afford that. If a co-pay is what I think it is, I couldn't even afford the co-pay.

Just to sum up, if your doctor thinks IVIG might work for you, I suggest you try it. If it doesn't do anything much after 3 treatments 4 weeks apart, abandon it.[/QUOTE]
Hi Keith, Your explaations on IVIG were very helpful to me as I start the treatment 12-7-09 for five days straight. Is the treatment really 5 hours long and is it easy to stop the treament for bathroom breaks etc? I was DX'd with PM 12 years ago and have all or most of known treatment you mentioned, Methotrxide and Pregnisone put me in the hospital for a week with Infections. I won't try this again.
I currently have much pain in the lower extremities and have become too week to walk without a walker or scooter. I am hoping to regain some strength. Could you drive after your first tratments?
Thanks, Ken





All times are GMT -7. The time now is 08:00 AM.





2019 MH Sub I, LLC dba Internet Brands. All rights reserved.
Do not copy or redistribute in any form!