On with the Remicade?

[NancyHany]

Hello all,

I need your advice regarding my situation, I was started on Remicade 7/7 and I had a terrible episode of serum sickness. While that was horrible and I genuinely thought I'll die , I have positive outcome of Remicade, my bowel movements are cut to the half and my skin feels better.

I went to my GI appointment today, he is worried that the episode re-occur and in the same time he wants to give Remicade another chance since its the only thing that actually worked with me ( I also take Pentasa which is good for nothing for me). He literally said " I really don't know what to do, I'm afraid you suffer permanent damage if the serum sickness re-occured" and he asked for blood work ASAP (CBC, ESR,CRP,SGPT and TSH).

Now its my decision and I don't know what to do should I take some pred and say my prayers and try again or continue living with this flare up till I find another way to feel better. Personally, I'm fed up with diarrhea, fatigue, fever and vomiting spells, I just want to feel okay again, it's really getting hard to smile and put the brave face.

Let know please your opinions and thank you in advance.

 

[Trysha]

If that happened to me there is no way I would have another dose of remicade.
It could be lethal.
How were the results from your blood work?
It is my opinion that the GI is being a irresponsible in allowing the remicade to continue.
He is the prescriber and should not leave it up to the patient to make a decision in these circumstances..
If the first dose gave such violent reactions the second more than likely might be quite lethal.
There are other drugs---have you looked at the treatment subforum--- you may find it helpful.
Feel better soon
Hugs and best wishes
Trysha

 

[NancyHany]

Well you quite summed up what I'm afraid from though the thing I really don't understand about this episode that I was told it won't go away if I didn't take steroids and it went away on its own!

I still didn't get the results from the lab and given that Friday/Saturday are the days of the weekend in Egypt, I might not hear about it before Sunday.

I know that Humira and Cimzia exist but Humira here is so expensive, I can't afford it at all and Cimzia in non existent here. I will need to search how much is it for and if I can afford it I will ship it to here I suppose.

I feel my GI feels awful for me, since he is the one who preformed my colonoscopy before he becomes my primary GI and he saw how bad it is and how bad I can't find any relief, he really don't know what to do with me like all GI doctors who treated me...