Too Good To Be True

When you live with MS, needles, meds and infusions often become part of your life. It sucks, but you learn to live with it. 

In my case (PPMS), I’ve been getting infused with various medicines and have made monthly visits to the hospital for plasma transfers (apheresis) treatments and a variety of infused meds for almost 15 years. Recently it felt like I was reaching a point where I wasn’t getting as much benefit from these treatments as I used to, and my mobility, strength, endurance, and ability to stay positive were taking a nosedive.

I’ve been reluctant to add to my current regimen because I’m tired of needles, of feeling like crap after these treatments, and tired of going to hospitals to get them.  But my regression was real and I thought maybe it was time to try something else.

My neurologist had been suggesting I try something called Intravenous Immunoglobulin infusions (IVIG) for a couple of years, but I had resisted because I didn’t want more needles and doubted it would be effective. But given where I was, I figured I’d try it and see what happens. And if this didn’t help, I’d give up trying anything different. 

Well, what do you know? The effect of the IVIG was amazing. I had it infused over three consecutive days, and within days of the last infusion my leg was stronger and my balance was better. I didn’t need a cane in the house and found it easier to navigate the outdoors with one. I was dumbfounded.  It felt like my progression had regressed, to where my body was ten years ago. And the improvement didn’t abate two weeks later! 

Too good to be true? Unfortunately, yes. A problem developed I tried to ignore but couldn’t. I was developing a rash that was ugly as sin and itched like hell. I visited a dermatologist who recommended I take prednisone for a few days.  The prednisone took care of the itch, but not the rash. By now I assumed the IVIG caused the rash, and I had another infusion scheduled in less than two weeks. Talk about a dilemma!

But then I started rationalizing. The rash sucked but it wasn’t that bad, I thought. And the itch was under control. I was loving with my new-found strength and the fact I could do things more easily than I had in years. So, I said fuck it, and proceeded with round two, only this time I reduced the treatment from three days to two, and pre-medicated with prednisone.  As I was getting prepped for round two, I told the infusion nurse what happened, showed them the stuff on my belly, and asked them if they ever heard of this or seen it before. He said he did not. 

Three weeks have elapsed since then and I am sure of two things. The first is that the IVIG has no doubt been the most effective treatment I’ve received in terms of reducing my symptoms, and increasing my strength, mobility, balance and self-confidence. 

The second is I can’t take the med they gave me anymore because the rash became more widespread. It is everywhere except my face, groin and butt.  What is odd is that the rash looks different on different body parts, and different areas itch on different days. I have red blotches on some places that look like bug bites. I also have spots that look like scabby red warts, cigarette burns, raised welts, and a nasty blotch covering most of one instep that looks like a combination of herpes and a shanker (see opening photo). Oddest of all, the skin on my palms look like dry, scaly, peeling calluses. The bottom line is that is has royally fucked up my skin. 

My PCP told me to stop taking the med, and that if the drug caused this mess, it would eventually disappear. But he also said that if it isn’t gone by the end of June to come back and he would biopsy it. Biopsy?!

I am tired of looking at the rash and the itch is driving me nuts! I’ll do anything to make it go away, so I will be getting another plasma transfer, which I skipped last month, in one week. Hopefully it will remove whatever remnants of the drug remains and get rid of the rash without making things worse. If it persists then I guess my PCP will do a biopsy. I am not thrilled with that idea but am resigned to it because nothing has disappeared and there are areas that recently developed that look like a bruise. 

Meanwhile, I need to discover if there is a different IVIG drug I can use, but I’ll research the potential side effects this time. I ‘d love to find one that provides the same benefit but without the rash, or some other nasty side-effect, but I’m not optimistic. At this point I would be happy with having normal skin and a negative biopsy.