Hello again all. As you
may have noticed, I have been a bit neglectful of my blog recently. I
apologize for my absence and will now proceed to place the blame squarely on my eyes.
Suffice it to say that they took a turn for the worse for a long
while. Doctors were visited, medicines were changed, and my eyes
began a month or so of completely inconsistent behavior before
finally beginning to calm down to their current state (which is actually pretty darn good). What did I do during my good spells
you ask? Well, Christmas cookies, Star Wars I-VI, and Lord of the
Rings may also have had something to do with that... I'm going to
claim that this was all both necessary and good for the healing
process because 1) thumbprint cookies make me happy, 2) Han Solo and Gollum make me happy,
and we all know that being happy releases stress, which reduces
inflammation, which is good for people who have too much of it in
their eyes.
IVIG treatments, which I
started just last month, also seem to be good for the eyes. It became
quite clear that my previous combination of treatments was not
working after a complete regression occurred after my prednisone was stopped, and so I decided to try “intravenous immunoglobulin
G,” which is not a drug in the usual sense really, but actually a type of antibody. The
antibody is collected from healthy donors (blood donors), and, well,
no one is really sure exactly why it works for some autoimmune
diseases. I'll discuss the possible mechanisms in one of my next posts. I've
only had one cycle of treatments so far but almost immediately after,
my eyes started to improve. I'm hopeful that this means that this is
the medicine that will finally tip the balance in my favor. The only
real side effect I've noticed so far are some pretty nasty, nausea-inducing headaches – unpleasant
yes, but in my opinion, much more favorable than uncontrollable
ocular inflammation. So we'll see how things go! I'm writing to you from the infusion room as I receive my second round of IVIG so hopefully next week I'll have some progress to report.
Until then, I'm mighty thankful for the magic of Advil.
Hi Jo -- good to see you back writing. I thought of you yesterday as I got FML cream (and it made me think of you, weird, I know). Hoping your eyes are feeling better. I am on the MTX and it has been ok so far, but my blepharitis is acting up. Always something... Thinking of you out here in the internets.... Barbara
ReplyDeleteHaha! Oh I consider it a great compliment that you associate me with FML ointment. Incidentally, I picked my refill up yesterday too! Out of curiosity, does your blepharitis have a meibomian gland dysfunction component? If so, I find that very warm compresses help me a lot, at least with the pain. I do them twice daily for at least 5 minutes. I'm glad that overall, your treatment seems to be working out for you though.
DeleteYES! I am already warm compressing and lid scrubbing. Sometimes I feel the bleph. is more annoying than the pemphigoid; it certainly adds a lot of discomfort. I've also starting taking fish oil, which def. helps with eye dryness. One of my meibomian glands might be scarred too, which is of course, just great fun... For what it's worth my doc (who studied w/Dr. Foster) said all his pemph. patients have been having a rough go lately. Misery/company, etc, I just want my eyes to be ok...
DeleteUm... yeah. I think that people don't really understand how horrible having dry eyes is. I'm glad omega-3s seem to help you though. I'm not sure if they really help me, but I continue taking them because it certainly can't hurt to try. I hope your eyes feel better soon! In the meantime, I dare you to watch this video and not feel cheered up instantly: http://www.youtube.com/watch?v=cXXm696UbKY
DeleteHi Jo
ReplyDeleteThank you for visiting my blog. I had replied to the comment on experience project but I find that site so hard to navigate that I set up a group on facebook - which you have just joined!
The meds that worked for me were a combination of prednisolone (steroids), dapsone (immune suppressant - given to those with leprosy and people who had transplants), mycophenolate mofetil (mmf)and immunoglobulin infusions (IVIG). This seemed to calm down the inflammation. I then gradually reduced the IVIG until I came off altogether and then very very slowly reduced steroids until off them completely. I am now supposed to be on MMF and Dapsone - I say supposed because my liver function has gone wrong so I have had to stop the MMF for a while.
Although the inflammation was under control, the scarring process has continued. London Hospital said it could take 2 years - 2 years later they said it may not stop! I think those of us who are younger have stronger immune systems and therefore need stronger drugs to control the immune system.
I am currently waiting for surgery on my right eye. They need to remove all the scar tissue and make some new inner eye lids from my mouth. They are hoping it will slow down the scarring process as it has begun to affect my vision.
I totally understand how the pain can overtake you - I am having a bad day today and get to the stage when I wish I could take my eyeball out and put it on the shelf for a while!
I have to go now but am usually on facebook each day.
I agree, that site is a bit of a mess. So thanks for setting up the Facebook group! I'm sorry to hear that your scarring has not stopped and I hope that your liver gets back on track soon. That is definitely very frustrating - to have to stop a medication that is helping you. But I don't think that you should accept that it might never stop quite yet (or honestly ever for that matter... "do not go gentle into that good night!") You haven't tried all the medications out there have you? Rituximab (also called Rituxan), cyclophosphamide?
ReplyDelete