Myositis and Intravenous Immunogloblin

Diagnosed, by biopsy with DM, but no rash! I’ve been on IVIG for 12 months, 9 months with one provider and 3 months with another. I receive 8 – 10 hours of infusion 5 days a week each month. My question is, since I moved and started with the new provider, I’ve experienced massive headaches and high fevers during the infusions! Never had this with past provider. I know each batch is different but could a buffer in this brand of IVIG be causing my problems!

I have either pm or ibm. A few years ago I had an IVIG series during 2 years. I felt it helped me tremendously feel stronger in the long run. My Rheumy tho felt that it was not successful since my CPK did not go down and stay down. He has never recommened it again. Is CPK the only measure of IVIG success? (My CPK ranges from 1300 to 2600)

I am currently on cellcept and IvIg. Currently symptom free. I have DM. Eventually I would like to be off medications hopefully weaning off cellcept and then IvIg, as I think cellcept has more risks associated with side effects. In my opinion i should try to reach remission without the need of suppressing my immune system. I have not experienced any negative side effects with neither treatment. what are your thoughts?

I am a 53 year old male with IBM for the past 5 years steadily loosing muscle, what is the most important thing I should be doing to preserve what muscle I have left?

What are the side effects of long term IVIG therapy?

I have IBM and tried IVIG for a year at a cost of $12,000 to me. It seemed to help, but is not approved or covered for IBM because it isn’t supposed to help. Could I possibly have a combination of poly and IBM ,and is anything being done to get approval and medicare coverage of IVIG for IBM?

I was diagnosed with IBM in 2002. As part of my earliest treatment I had over 30 IVIG treatments. I did not notice any measurable improvement during or after the conclusion of treatment. In the subsequent eight plus years I have grown progressively weaker. Is there any reason to believe that renewed IVIG treatments, at this time, would be of any benefit? Thank you.

Is there any evidence that ivig prevents significant muscle destruction?

I have polmyositis and I have been getting IVIG every 5 wks (3 day infusion) for 17 yrs In your opinion, are there any long-term side effects?

My name is Pam Walker. I have DM/ILD w/ features of antisynthetase syndrome. I have been taking IVIg therapy since January and while I have overall improvement in strength, stamina, and skin issues, I still have a great deal of pain. Is this normal with IVIg?

At one point my Ck count was over 13,000. It has been almost 2 years my count is now over 500. Once I am in remission will I be out of the woods as far as worrying about the number going up again and the immobility returning? Thanks for your help

I recently heard of someone having a pulmonary embolism after an airline trip, one day after an IVIG infusion. How common is this danger?

Do you recommend IVIG patients receiving a normal saline drip before, during or after an infussion, in order to eliminate or minimize side-efffects? If so how much?

For patients who experience severe headaches after an infusion, do you recommend a particular prescription or regimen? If so what?

What measures of success exist for treating PM with IVIG? Do people generally feel weak the days before an infusion and then feel stronger after it? I see no effect except that my flares are less often and less severe. How do I know if IVIG is really helping?

Hello Doctor: I was initially diagnosed with PM in 2007, then DM was added in 2008. In 2010 Secondary Sjogrens and Secondary Raynaud’s Phenonema was added. I had Dyspnea and Dysphalgia from the get go along with weakness and pain in my proximal muscles that spread to the distal muscles as far as my hands and feet. I have been on IVIG Therapy for two consecutive days for six months since August 2008 with a breather for 3-4 months between three different 6 month intervals. The skin seems to clear up after I am on the IVIG in abt 3-4 months, my CPK, aldolase and other blood levels come down to a more acceptable level also. I am also on MTX injections of 1cc/week since October 2007, and no backing down since my CPK seems to shoot back up after being off the IVIG abt 3 months later and the skin symptoms also come back. I am now in the second month of my third series. I am also overweight. I see two good Rheumatologists frequently along with cardiologist, pulmonoloogist, gastoenternologist, Dermatologist, and Opthomalogist who all know each other and monitor me for cancer and cardio which have found no cancer or heart damage. Will I have to be taking IVIG forever? Any other ideas?

I have dermata but now have breast cancer and will need radiation and wonder what this will do to my dermata?I have in the past taken IVIG to control dermata but right now only on prednisone.

1.There appears to be no hard evidence that any patients diagnosed with IBM have a remission of the disease. Do you believe there is any remission as high as say 1%?

2. Is there any evidence that giving an IBM patient 5-10mg of Prednisone is of any use whatsoever?

Have you seem many patients who develop an intolerance to their IVIG?

What are your recommendations to help eliminate the flu symptoms that occur for some patients?

Is there any guideline about exercise after IVIG? For example, if you usually would go to the gym the day after and you feel up to it, what are the pros and cons? Does it help to get your circulation going at an accelerated rate which might help your body absorb the IG quicker?

Has IVIG had any benefits for Inclusion Body Myositis?

Dx w/ DM Feb 2010. Ck high as 24,000. After 80 mg of pred and methotrexate, recovery and muscle strength went up then down after dropping to 20 mg as ck went down in 5/2010. Maybe lowered too fast. Relapsed and felt worse than first episode. Went back up to 60 mg pred. Switched to Medrol 60 mg 8/2011, not absorbing pred., and slowly lowered dose as ck lowered. Ck now between 40 and 90 for last 5 months. Now down to 8 mg Medrol. Lost a lot of muscle after relapse and having difficulty gaining any back w/ therapy for last three months. I get very tired and muscles fatigued every day by early afternoon. Would ivig be of any benefit to me to help with regaining any muscle strength? My rheumatologist won’t prescribe it as she says my ck is under control and she can’t justify it to my health care plan. Thank you for a response. DP

My daughter, age 25, had a relapse of her JDM in December. She underwent IVIG, which was wonderful. She had a headache after, but it went away with an increase in her Prednisone. Her second IVIG type was changed and she had no problem at all. The 3rd IVIG resulted in a migrane type headache which did not go away till she was treated in the emergency room. She followed all the recommendations of pre-treating with Benadryl and Tylenol. She drank a lot of water and the treatment went slowly. She had a dose of 130. Thankfully, she did not need another treatment. My question is, is this normal because if she were to have to undergo treatment in the future we would like recommendations from you regarding dosage and length of treatment time. IVIG was a miracle in the length of her recovery time from this relapse.

I am 69 yr old male. Do you recommend any type exercise for advanced stage of IBM? How about medication?

I was officially diagnosed with IBM 2 years ago. My dysphagia started about 5yrs. ago and my quads were affected soon after. I have had 2 consecutive 3mos treatments with IVIG. The dysphagia is improved the quads are about the same. What is your experience with the IVIG in treating IBM? Is this disease sometimes self-limiting?

Is it normal to feel worn out after IVIG infusions? It seems as though prior to my infusions (5 M-F, once a month) I have a lot of energy but by my Thursday infusion, I’m breathing worse and by the next week I’m worn out.

I had IVIG for my IBM from 1/30/06-12/22/07;4/23/09-1/29/10 for a total of 86. I had a heart attack on 11/16/08. The last several mos. of the Tx, I experienced chest pain, is that unusual? I believe IVIG, Cellcept & Imuran are the reasons I’m walking so well today. Thank you.

Dx PM in ’99 in Buffalo,NY. Over a course 4yrs., Tx was Prednisone, MTX & Azathioprine. Severe weakness in paraspinal muscles. Need a neck brace for ADLs & BiPap with O2 at HS. I also delevoped osteoporsis and HTN. After 4 visits and consults at CLeveland Cl.I tried 3 courses of IVIG with no improvement. Have also been to Dr. Ottis and John Hopkins Myositis Clinic with no new advice/tx. I haven’t been on any PM meds for the past 5 yrs. I’ve been told my PM is resistive to TX. My Dr., a rheumatologist consulted with Drs. at this year’s Rheumatologist Conference regarding my case. They recommend trying IVIG again but for a longer period of time ie 1-2 yrs. Have you had any experience with IVIG as a TX for this long period of time? I would greatly appreciate your advice and thoughts on this TX. My Dr wants so much to help me improve and not regress any further. He is always open to medical opinions and does consult with me, leaving the final decision to me. Thank-you

Which type of myositis is helped with IVIG?

What are the side effects of the IVIG? And how serious are these?

Due to the high cost and many insurances not covering this TX, Is there any funding for IVIG Tx?

What is the pattern sequence for IVIG TXs? and for how long can an individual receive these TXs?

Is there any way my Dr. can get in touch you for your opinion on my case?

hello Dr. Mozaffar. How fortunate we are of having you as a panelist. I have had amyopathic DM for the last 13 years. About 80% of my body is affected with rashes and severe itching. I have done all the first degree treatments: plaquenil, prednisone, methotrexate, cellcept. I have also had two remicade infusions. My condition completely dissappeared while I was pregnant. I’m seeing a dermatologyst at Oregon Health and Science University. She is recommending Ivig and imuran at the same time. What do you think of this combination treatment? How long do you think I would have to be on this treatment to see results? what are the worst side effects I should expect? One final question: has anyone with ADM or DM ever gone into remision with Ivig. thank you very much for taking my questions.

I AM PM PAITENT 1-I AM ON METROTEXATE 12.5 MG. WEEK. IS IT SAFE TO TAKE BABY ASPRIN FOR BLOOD PRESSURE DAILY 2 IS IT SAFE TO DRINK 6 OZ OF WINE DAILY 3 I AM 77 YRS OLD AND HAD P M MYOSITIS SINCE 1980 AND WAS IN REMISSION FOR 28 YRS I STILL HAVE SOMEWHAT NORMAL LIFE, WORK IN YRD. etc.

Have any negative affects been associated with use of IVIG? If so, what are they?

What are the primary differences between the types of IVIG available?

I am a recently diagnosed IBM patient and am considering treament alternatives. My question is: Might I be a good candidate for IVIG and if so why?

My son (7 years old) was diagnosed with Juvenile Dermatomyositis 2 years back along with ILD. Currently he is on IVIG 2 gram/KG every 4 weeks which was started 1 1/2 year back. His enzymes (AST and ALT) remained steadily in 100s after it came down from the range of 500 – 600 with IVIG. He has been on Rituxan for last 6 months and enzymes are down to 40s to 50s range. His initial frequency of IVIG of every 3 weeks has been changed to every 4 weeks for last 3 months. Per my knowledge the effect of IVIG comes down with time. We do not want him to go back to more frequent infusion of IVIG. Do you ever recommend giving higher than 2 gram/KG to maintain the same efficacy if needed rather than increasing frequency? How immunosuppressed is my son with Rituxan, since he is also on IVIG simultaneously? We appreciate your help very much.

I take IVIG for my dm but I also have a dropped foot and can’t walk. I hear that some with ms have been able to walk after a while using IVIG. Can this be possible for me? I do feel much stronger than before using IVIG

What risky side effects do you most see with people getting IVIG for more than one year?

My sed rate recently went high up. Does IVIG have anything to do with this problem?

My WBC went down to 2.1 a few months ago. Did IVIG have anything to do with this? I w as also lowering my preds at that time. My ending told me that IVIG did not cause it. Not sure.

Is there any evidence that IVIG helps for IBM with the exception of minimally for swallowing?

I see several “brands” of IVIG, how do I choose?

Dr Mozaffar, I will be starting IVIG for my PM. How often and to what extent is it successful for treating PM. Also, is IVIG safe?