Hi Everyone! I am waiting for insurance approval to start IVIG infusions. I was wondering if anyone else had already gone through this? I have ASS with Dermatomyositis. I am currently on 10 mg of prednisone and 3000mg of cell cept daily with plaquinil for joint pain. My doctors say the cell cept is not doing anything and after 5 months of IVIG they want to transition me to imuran. I would love to hear anyone experiences with IVIG. Thanks--Stephanie

Hi Stephanie - As I was transitioning from 60 mg. of Prednisone (the only pharmaceutical I'm taking for polymiositis, started July 2) down to 50 mg. daily, I began IVIG -- spread over a conservative four days of infusions. The Prednisone seems to have blunted the fairly rapid progress that anti-synthetase syndrome was making in weakening my large muscles and messing up my lungs with a "secondary" pneumonia. So I was stronger already when I had that first series of IVIG sessions; no side effects, no headaches, no high blood pressure, no allergic reactions. Further sessions are scheduled at one-month intervals. And I'll taper down to 25 mg. of Prednisone in a couple of days. In my blood-work, the 'CK' marker for ongoing muscle-tissue damage is way way down at this point, around 190 instead of the 7,000 it started at in June, but not much of that is likely due to the IVIG, I would imagine. And my lungs are finally clear (it's been since early March that pulmonary complications accompanied swallowing difficulties, which made eating and drinking a real challenge). Greg

Our stories are very simular, except i started with Imuran and it worked well for about 9 months and then something changed so we stopped the Imuran and went to Cellcept. Now I am back on track. Don't know why but doc says sometimes you have to change medicines. It worked for me. I take Rituxan infusion about every 6 months. I am doing well with that. Good luck:)

Thanks Gregster and Melissak! I will keep you posted on what happens when I start my infusions. I will be doing two days of infusions a month for five hours each day for five months. That is kind of intimidating me, but they will be doing them in my home and not at an infusion center or inpatient.

My IVIG infusions have been approved. I start on September 13 for two hour infusions for five days. I am a little nervous but hopeful.

Good luck, Stephanie! Were steroids considered, as therapy for your dermatomyositis? Was that something you tried, or was it rejected as inappropriate, or is the Cellcept being used instead, or what? It seems there are a lot of alternative therapies... This article has some interesting comments under the heading "Pharmacology" at the very end, before the references: http://en.wikipedia.org/wiki/Mycophenolic_acid Greg

I was on 60 mg of prednisone for 18 months and am now down to 10mg. I have been through oral Cytoxan which was great for the joint and muscle pain but the other side effects were brutal. I have been on cellcept for four months and it isn't doing much. I was just seen at the Myositis Center at Johns Hopkins in Baltimore. Excellent doctors and they feel that IVIG along with transitioning to immuran will put me in remission. I had major side effects from the prednisone including bilateral cataracts, moon faced, weight gain, and dowager's hump. That is all gone now (had cataract surgery in December 2009) I really don't want to go back up on the prednisone. Thanks for the support and ideas! I will keep you posted on the progress with the IVIG.

Just wanted you to know and not be discouraged if you do not see results right away. It takes me 18-20 days after an infusion to begin seeing some improvement and then it gets better every few days from then on. Try not to be nervous. Think positive thoughts:)

I know you were talking to Stephanie, Melissa, but I'm taking some comfort from your words, too. My first infusion was August 16-19, and I was really kind of dubious about "results" showing. But your suggestion about a time-frame of 18-20 days' delay before tangible results surface is encouraging. I'll work on those positive thoughts. For everybody... :>) Greg

Hi everyone I want to wish all of you the best of luck with your infusions. Last year I went through a six month cycle of it and I loved it ( not the infusion part ). I felt great, the best since I became ill. Unfourtunatly my disease broke through the treatment, and I had to move on to a new treatment. I really hope it works for all you, so stay positive , and keep us posted. Take care and good luck Cathy

I was thinking about the infusions and also fyi--I have Rituxan 1000mg and then 2 weeks later the same thing. The last time, when I was in a major flare, it took 18-20 days from the second infusion. I just wanted to let you know how it worked for me, so do not be discouraged if you do not see results for a couple of weeks. Stay positive. xoxo

Hi Everyone! I just finished my first week of IVIg infusions using Gammagard today (9/17/10). I have had no side effects and everything went smoothly. I may just want it to work so badly, but I think my legs are a little stronger! It has been easier to get up from a chair and my hands aren't as swollen. I had blood work before the IVIg and my CK was 4780! I am going to get it done again in a few weeks to see if anything changed. Thanks to everyone who gave my tips about what to expect. Stephanie

I am so glad to hear that you are stronger and things are easier. I am sending you positive thoughts from Texas!!!

Thanks Melissa! I really appreciate it. I used to live in Texas and I miss the Lone Star State so much!!!! Stephanie

I had my first week of infusions from September 13 to the 17. Prior to the infusions my CPK was 4780 and my liver enzymes were elevated. I just had blood work and my CPK was down to 1778 and the liver enzymes were down as well!!! My second week of infusions starts next week, October 11th through the 15th. I feel so much better, not 100%, but there has definetly been an improvement. Thanks to everyone for their positive thoughts and encouragement. If you have not tried IVIg yet, ask your doctors about it. Stephanie

Hi Stephanie I'm so pleased to hear that you are feeling benefit from the treatment, and seeing positive results in your blood work. i like to know my bloods as it usually reinforces to me how I feel and stops me feeling like everything is in my head!! so I'm sure you must be so pleased to see the numbers going in the right direction. Good luck with the second week Alison

Hi Stephanie I'm so pleased to hear that you are feeling better and the IVig is helping you. I had my appointment in London, and they have doubled my dose of Cellcept, and said that I could consider IVig if I start to feel bad again as i try to taper the steroids again. It would be 5 days of infusions. It's good to know that you are having good results; it gives me hope! What is the next step for your treatment? How many doses do you have left of the IVig? Alison

Sf So happyto hear that the infusions helped so much. They are wonderful as I just got another dose of Rituxan. I get 1000mg and then 2 weeks later get 1000mg and then go for 4 months before the next one. It has helped me so much I cannot even begin to say how thankful I am for this med. Come see us in the Lone Star State!!! It is just beautiful here. Still sending those positive thoughts your way and to all who have this ASS disease. LOL

Hi Alison and Melissa, I finished my second round of IVIg last week. My CK level dropped 3000 after the first round (5 days in a row for four hours a day). I will get my CK levels done again in two weeks. I am scheduled for 6 months of IVIg infusions, 2 down with 4 to go. My doctor says she has had people with ASS go into full remission after the 6 months of IVIg treatments that are long lasting (years with no flare ups.) I am hope that will be my story. I have read a few studies where IVIg was used with ASS patients resistant to other immuno-supressants and their remisssion rate has been 100%. I think many doctors, at least here in the US, use IVIg as a "last resort" because it is so cost prohibitive. My treatments cost between $7000 and $10,000 a day! Thankfully my husband has excellent insurance that covers my treatments competely. I am still on 10 mg of prednisone, but hope to taper that as well. My thoughts and prayer are with everyone. Fight the good fight! Stephanie

Hi Stephanie As my consultant said last week, the drug is 'reassuringly expensive!' I like to think, 'it's because we're worth it!' Take care, i'm keeping everything crossed for you that you are a success story with IVig Alison

help! iam new to this diagnose, have been disable for over 5 years.my ra as really went wild, have had left hip replacement and have fractos in all the rest of my joints.just been diag. with this anti-synthetasesyn, with dermatomyositis. i dont know what drugs to choice. i will not do seorids ever again. will going to the ivig first or try the other stuff. please help.my rumy says to start on azathioprine or cellcept. any advise would be great.

Hi Nanasix, I finished six months of IVIg infusions in February. I am currently on Cellcept, though it has not been very effective for me. The IVIg has been terrific! I have been off it for two months and I am starting to feel a little weak in the thighs and shoulders. Before the IVIg my CPK was 4780 and I could not stand up from a chair without assistance, nor could I reach above my head to even wash my hair. After the six months of infusions it was down to 110 and I have full mobility without weakness. I am having another blood draw in a few weeks, and I think it will be going up a bit but not to 4000. My rheumatologist said I may need to get IVIg every eight to twelve weeks for maintenace. Are you located in a metropolitan area where there is a medical school or teaching hospital? If not try to get to one if you can. I can't say enough good things about Johns Hopkins Bayview Medical Center in Baltimore, Maryland. The Myosytis Center there is amazing! National Jewish Hospital in Denver is also quite good if you have lung involvement. This is a very rare disease and doctors don't know much about it. It will help a great deal to find a doctor who does know. Good luck, I hope you can find relief with IVIg like I did!