Hi puglover sorry to hear about your friend,I'm sure everything will work out. I was wondering could you if you know what type of sypthoms has she been having? And what landed her in the hosiptal? I'm not sure if anyone in this group has started the IVIG yet,but I hear it truely helps. Intravenous immunoglobulin (IVIg). Immunoglobulin contains healthy antibodies from blood donors. High doses can block the damaging antibodies that attack muscle in polymyositis. hope this helps.
Melissa

Generally, IVIG yields mixed results. To my understanding, it tends to do best in people who have the disphagia (swallowing difficulties) right from the start. It also tends to do better in people who don't respond to the more standard treatments, however; some physicians may be rethinking things. The current treatments (steroids, other immunosuppressants, etc.) can actually make things worse for some patients and some doctors are feeling that IVIG should be tried FIRST rather than later. I'm sure that insurance companies don't agree though.

Good luck to your friend!

Peace Always,
the DragonLady

My friend started out with Lupus, was then diagnosed with Sceroderma (the worst kind) and then started developing neuromuscular problems (undiagnosed right now) She has been on such high steroids (higher than prednizone), that it's causes other problems now. Her muscles are literally separating from her bones. Her skin is bleeding and tearing..Breathing issues, neuropathy...The list goes on and on. She was unable to get medical treatment until she was on her last leg. It's a very long story..But she was uninsured.. She started the IVIG treatment yesterday and is having severe pain from her neuropathy. We are very hopeful that this treatment will lessen her symptoms and that her neurological problems will be diagnosed. She will have the IVIG treatments every week for what appears to be a couple of months, then will have a much needed muscle biopsy, which should have been done a year ago...Any good news that she can hear about this IVIG, is welcomed...

Thanks to you

Hi Ms. Puglover,

Your friend should be aware that these high doses of steroids can in and of themselves induce muscle weakness. They can also alter the results of a muscle biopsy.

People have seen relief with IVIG, so there is something to it. I hope it works for your friend. Gosh, it sounds just awful what she's going through!

Peace Always,
the DragonLady

Thanks so much, Dragon Lady...I couldn't remember who it was that had polymyositis..Now I know :)

Yes my friend has been through hell..The doctor's are weening her down off the steroids so that they can do the biopsy...She'll be in the hospital for quite some time. This woman has been shoved here and there, because she doesn't have any private insurance. She's too sick to work and there is a sort of 'discrimination', against people with no insurance. So several doctor's have kept her on steroids..Horrible. Then when she got sooooo bad, she was finally admitted. I don't understand it..
I will keep you posted when I learn something new...I have copied and pasted all replies and sent them to her as they come in...

Thanks everyone

Hi Puglover,

There seems to be a LOT of 'discrimination' going on these days. I almost fell over when I saw a disabled woman being booed and jeered at in one of these recent 'townhall meetings'.

I wish your friend all the best. I have to say though, if your friend is going to recieve the IVIG, then the discrimination isn't coming from the physicians. IVIG is incredibly expensive---it's about $5000.00 per treatment---unless something has changed in very recent years. Also, it isn't all that uncommon for someone to become very ill while on high doses of steroids---especially if there are other underlying conditions. Some people just cannot tolerate steroids.

Peace Always,
the DragonLady

Hi PugLover!

I hope your friend is doing better now. I wanted to let you know that I am having IVIg treatment, and find it is helping.

I was diagnosed just over a month ago after struggling with symptoms for about a year. My doc put me on 20mg prednisone on Sept 2, immediately after getting the confirmation of DM from the muscle biopsy. (I am on a 'relatively low' dose compared to some because of my already compromised bone status.) I had my first IVIg treatment, Privigen 50g in 500mL infused over 6 hours on IV in the hospital clinical day unit about 3 weeks ago. It has made a difference. I couldn't lift a pillow or get up from a chair. Now I can, usually. It does seem to be wearing off a bit now, but my next treatment is next week, so we'll see how it goes. I'm optimistic.

Side effects-wise, I had a bit of nausea about 2 hours after the finish of the treatment, and the blood vessel and area used hurt for several days after, but these are minor compared to the positives.

Please let me know how your friend is doing! If you have any questions, let me know.

Best regards,
Monika

I had my first IVIG two weeks ago. So far only slightly feeling better, fewer muscle tremors, not as tired, rash is almost gone. The doc said it will hit max effect between 2-3 weeks.

I am starting the long process of weaning off pred. I was on 60mg every other day, now 55 for two weeks, then 50 for two weeks, etc. The only side effect from the IV was about 36 hours later, after working a full shift at work, I got a massive headache and generally felt like heck. Doc said that was a "normal" reaction and would probably react the same each time.

The doc has already said to plan on at least one more IVIG in six weeks hopefully to get in remission then probably one every few months to maintain. But no more pred!

My treatment was $10,000, 130mg over 2 days. The insurance didn't give me any trouble but I suspect it's because I see some highly respected doctors.

Hope your friend is seeing some improvement. I just completed my first round of IVIG. It is the first treatment plan I have had for my recently diagnosed polymyositis. So far I notice a decrease in joint inflammation - I have slightly better range of motion. I am hoping it lasts!