I have been shy about posting my story, dont know exactly even why...
Jumping straight to these days, I am over a year with pred, having hard time to taper. Thats after the ugliest flareup about a year ago
My GI says its too long for steroids and we started the procdures to prepRe for 6mp. I am having hard time to accept it... on the other hand, I also cannot stand the thought of the further damage to my intestine caused by active inflammation.
Pred at high dose was not fun but currently on lower doses it agrees with me well and keeps Crohns at bay so I can run normal life ; if pred was a maintanance drug I would not hesitate to keep on it as it really helps.
So I started tests and examinations, next are the vaccines, and off we go ! I just have to be brave enough and try not look down.
My thoughts that keep running :
- Side effects : OMG ... from what to what-not. I am scared. Maybe its a part of me being ashamed about my disease ? (having said that, today I am much more open than I used to be about it, so it is some progress ...lol)
- Will it work at all ? I mean, pred works. But the mechanism of 6mp is different. I had a discussion with my GI and he was open to talk it through. I thought of jumping straight to biologics maybe ? I am trying to figure out which drug will have the best chance of working straight away with minimum side effects. While I see much more stories of success with biologics than with 6mp/imuran. Is it just a mis conception I have ? Do you feel differently ?
- Will it effect the chance of rhb104 combo (if approved) to work for me (there was such a study) ?
- Hesitant about all these vaccines; as somone who havent even been taking the flu shot, you could imagine
- I sometime feel much better being outside, under the sun. I realize that is going to be a problem now with 6mp. I wonder - do you put sun screen even for 10 minutes when you go to the grocery store etc. ?
I know it' all over th place... just put some if my thoughts that wont leave me. I should overcome my inhibitions and write my story in a dedicated post, so you can know me better.
Many thanks to you all !