two sides to that coin... (long winded)
Hi Becky,
Go ahead and vent!
Sometimes I think it is necessary to keep us chronically ill folks sane.
(or, at least, as sane as possible)eek
I too am on an immunomodulator on top of Remicade.
After 26 weekly belly jabs of Methotrexate, believe me, I hear you.
I too would strongly prefer to 'just be on Remicade'.
At my last visit to my bigdog GI, which is a 5 hour drive round trip, I saw fit to ask him:
I am very aware of the downsides of Metho, what are the upsides which would
indicate to persist with it on top of Remicade?
He is a sharp Doc, a real scientist obsessed with IBD, head of research at a large institute,
is the man who brought Remi to Canada, and constantly flies all over the world to speak on Crohn's.
His articles appear in The Lancet frequently, and his research is quoted several times in
the new book 'IBD Self-Management' approved by the America GI Assoc.
He is also the doctor my brother with Crohns says saved his life.
I'll share with you, briefly, what he said to me:
1 -the added drug suppresses immune on it's own
2 -the pair of drugs work in synergy together (1+1=3)
3 -research proves that it minimizes antibodies to Remicade, which can render it less effective or possibly ineffective over time
In my specific case, he quietly informed me of the numbers.
In the first year, 10 - 13% develop antibodies to Remicade.
Paired with Methotrexate, just 1 - 3%.
I walked in determined to stop my Metho jabs, which hit me hard and cost me a couple slow days each week.
I walked out willing to continue with Metho for the foreseeable future,
and more importantly... understanding why.
With such a fickle and slippery disease as Crohns,
I've learned to appreciate anytime anything about it makes sense to me.
I grasp that persisting with the pair of bigdog drugs is my best chance at some semblance of wellness,
and a crucial approach to clawing back as much of my life, and thus myself, as possible.
Emotionally, I don't wanna be on a chemo drug, even low dose, ongoing...
the side effects, risks and injury to my organs and blood is downright scary.
But intellectually I understand that this is my best chance to recapture some quality of life.
Yes, I fear these treatments and drugs.
But, I know-for-sure, I fear Crohn's disease more!
wishing you well,
Walt
ps Memories of laying on the floor for hours, holding my guts, moaning and begging for mercy...
are never far from my thoughts, even on good days.
I paid full price for those lessons, and I cannot forget.
We have to play the cards we are dealt.
Best of luck to you!
