A lot has changed since I look back on all of my blog posts
in the past. For a while things were not going as well as I hoped, so I had a
hard time keeping anyone updated because I just was done talking about what
happened. Now, I am in a completely different place a year later and I am
excited to share the information with everyone. As some of you may remember
last Christmas I was starting the insurance fight for IVIG- Intravenous
Immunoglobulin. This fight went on for months, and months, and after 8 rejections
I was finally approved. Since IVIG had never been used for POST SJS symptoms it
was a long road to get it approved. I started these infusions in March of 2015,
and in April of 2015 I was about back to myself. I did have some serious side
effects like a battle with viral meningitis from the excess white blood cells
in my spinal column. But I was fine once my body worked it out; I just had
debilitating nausea and migraines for a few days. After two months of one brand
they switched me to another brand, Gammunex of which I had minimal side effects
from. At this point my health was about 95% back to where I was pre-sjs. My
eyes had totally cleared up to the point I no longer wear my PROSE lens, my
skin did not redden, I had no more ulcers anywhere, and my energy could be
compared to the energizer bunny. I could not believe it. I started losing all
the steroid weight I had gained from the hospital, because I was able to
actually move my joints again. I was running! It was fantastic. I also started
sharing my experience and helped other SJS survivors start the advocacy process
and get to the doctors that would help them get IVIG, because it worked so well
for me. But, I then switched doctors to see this new immunologist who I do
love; but she switched me to sub-q IG which means that you insert a bunch of
tiny needles into your skin and infuse at home. We did this because the
Gammunex started causing large blood clots that were painful and dangerous in
my arms so the sub-q was the next option.
Well in the background of all of
this I had moved out on my own back to Boston, and was not only working but
also back in school for my masters in medical social work. I also have started
dating again, which for anyone with a chronic illness you know how that goes.
It has certainly been an adventure. But, with the home infusions it was great
because I was so busy with getting my life back I had the flexibility to do it
on my own in my own schedule. However, the first brand we tried did not work
and I started to flare, and freak out. The ulcers came back, and the exhaustion
set in. So after a week of advocating on the phone with the nurses we switched
brands and doubled the dose to a medication similar to Gammunex but sub-q. The
downside to this treatment is that it is 8 needles, and it is infused weekly.
So I started these treatments and it seemed ok to start, my flare went down but
never really went away. Then I started feeling faint every time I infused. This
could be because as another side effect I had serious GI issues that lead to me
losing even more weight. So after talking it over with my immunologist I am
going back to IVIG the middle of January 2016. Since clotting is a concern we
might have to have a port-a-cath placed but we are going to try without it and
see! I know the Gammunex worked incredibly well for me so I am actually happy
to go back to that, it is just a bummer because two days a month I spend 5
hours each time in the infusion room which is not fun. But it works so it will
be nice to feel confident in the treatment again.
So we will see! I have received a
bunch of emails and phone calls about the IVIG and as always I am more than
happy to talk to you anytime about it or help advocate for it. I am also more
than happy to talk about my current SJS issues off here if you want! Now that I
am getting my masters in medical social work I find I use the skills I learn in
school almost daily, and that is a great feeling. It also helps that I work at
Mass Eye and Ear and have access to the best and most experienced doctors on
SJS. I hope you all have a happy holiday and as always please never hesitate to
reach out!
