Cellcept
 

I finished a 5 day infusion of high dose steroids on Friday. That week was one of the best I've had in an extremely long time. I was full of energy and my rheumatic and nerve problems l were dampened. By yesterday afternoon, back to normal and feel crap again with pain.
I've tried two lots of ivig and felt it just flared the sfn. I have had the steroids now but feel rubbish and no benefit. My neuro suggested cellcept (mycophenolate mofetil), a type of immune suppressant. Has anyone had any experience with this. I have sfn everywhere and it suggests a ganglionooathy. Also have ankylosing spondylitis. The drug for that most likely won't help the nerve disease. It's an absolute world of hell having more than one thing as they are equally vicious and destroying my life.
Has anyone got any thoughts on what else one can try once the ivig and steroids have been given a go.

I'm not sure that two rounds of IVIG are enough to evaluate it's effect.
Anyway, Rituximab helped my POTS tremendously and I guess that it helped somewhat with the SFN's sensory symptoms, but my symptoms are mainly reduced sensation and numbness so it is harder to estimate and even if it is helping it would probably take a long time to heal.

I agree with Stillhoping that 2 doses of IVIG isn't enough to determine it's effectiveness. Keep in mind that IVIG works by modulating the immune system...this takes time.

Being that the steroids helped, confirms that your neuropathy is inflammatory based. You may be a candidate for long term (lower dose) steroid therapy. Of course, this comes with higher risk of negative side-effects from steroids. Have you tried a week course of steroids...normal taper pack starting at 40 mg and tapering down? You would know within a couple days if this will help. And you may actually be able to take 10-20 mg daily and get good results.

Worth a try...and to give IVIG more time.

By the way, I have taken Cellcept before and had good results during the few months I took it. However, I got a life threatening infection and had to stop (I am immune deficient, so that complicated things---others may not have this problem). It's worth considering.

Thankyou still hoping. I have read about Rituximab. I have no doubt at all that I also have autonomic problems. Again I am in the process of trying to 'prove' everything.

Thanks en bloc! That's really useful info. Im going to see my neuro in a few weeks so will update him on how the steroids went and I think he may suggest the taper pack. I havebt ever tried the steroids before.
Did the cellcept help your neuropathy? I understand yours is affecting the ganglion as I believe mine is, being full body wide. Obviously not good news that you had to stop it.
Both times I had ivig I came away and it flared up badly in my forearms straight after. That's why we left it. I also cannot get anymore funded through insurance. Based on the people he sees who have nld sfn, my neurologist didnt think my reported response at that stage meant it was worth pursuing for the time being.
The 'disease' is without any question whatsoever affecting my motor nerves as im now sitting on skin, bone and a tiny bit of fat where my backside used to be, plus more obvious atrophy elsewhere.Once this has been proven then I don't know what the proposed response would be in terms of treatment options - if anything different.

I think the Cellcept did help my neuropathy to some extent...wasn't perfect, but I did have a reduction in symptoms/pain. But I was only on for about 3 months before the infection, so I may have had better results if I could have used it for a longer time. It did not help with my autonomic symptoms though.

Since the IVIG didn't go well, it might be a good option for you.

The steroid taper pack will let you know within 2-3 days if it's going to help or not...also worth a try.

The other thing to consider with IVIG is brand and concentration...they are all not the same. Some concentrations are much higher than others and brand makes a difference as well. If you have the option to try a different brand/concentration, you should. But if your insurance won't cover it any more, then it's a moot issue.