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 Reply posted for crohnsdiag.

I was not able to get the message space to open on my phone.  I have been on humira, remicaid, cimzia, stelara and now am told to try a 5th biologic.  I got a butterfly rash across my nose with swollen joints after 10 days the first humira dose.  The body ache and stiffness got so bad on humira and cimzia it took an hour to get out of bed. Remicaid I got serum sickness after dose 2. cimzia was same as humira and now I am on stelara took 3 doses.  I still get rash from time to time (seems when I am run down or it is cyclic) not too bad body stiffness.  I have an illeostomy as of January and now there is crohns there and open ulcuers on skin near it which became necrotic.  I have pyoderma gangrenosum a rare immune disorder.  Since I started biologics my crohn's symptoms have become more severe (i.e. crohn's in all my joints, mouth and throat ulcers, erythema nodosum) and now ulcers on stomach near stoma and pyoderma gangrenosum.  I never had any of these prior to taking biologics, I had issues with crohns only at surgery site that would cause stricture in which a resection was done.  Is this the biologics I know I am a very small percentage that has these effects from them but I fear they have revved up my immune system even more.  If you were me would you try the 5th?  Is anyone else experiencing these things? The alternative which there is little experience is transplant drugs tacrolimus (which is likely to give very severs mouth/throat ulcers like when I was on methotrexate).  Any advice would be appreciated.  I have had 10 surgeries and I fear with the stoma the way it is I am on my way to my 11th.  I am having such a hard time working I am scared I will lose my jobs if a remission doesn't get started or I end up with any more rare immune system disorders.  What would you do?  thanks for listening.

Reply posted for William920.

These are some biological health conditions that can cause worse health effects. The college essay writers can compare such kind of issues to make it easy for patients to understand the side effects of these immune system disorders.

 Reply posted for lizzies mom.

I have tried the university in my state and I am being treated at probably the best place in the nation. The university told me that I was probably in the best place that there are more people there in my shoes than at the University.  My doc is wonderful there and has collaborated with the other docs about the few of us and told me there isn't really anything that has worked for them either.   I know especially from the nurses there a handful of others like me coming in frequently and they are not good either.  I wish I could find them!  My gut has told me all along not to do the biologics and has told me not to try anymore but I am scared to trust it and like the docs and worried things would be worse. My gut feeling is so strong that it is the biologics that either has given me new immune problems or has made my crohns worse.  I think these drugs are very dangerous for a small percent and fear they have wrecked any good health I had.  I had crohns for over 22 years and used to complain and stop 6MP after a cold/flu carried on for 9 months straight.  Stopping for a few months was the only way to get over it, working full time with a cold sucks and 9 months was all I could do (docs didn't agree but they didn't walk in my shoes either).  Looking back that was nothing compared to this! 
Maybe I will talk to my doc about going on 6MP or methotrexate with the next biologic?  I know those drugs used to be taken in conjuction with the biologics to keep you immune system from figuring out the biologic drug was there.  Initially for maybe a month or two the Stelara worked really well!  This disease is always a choice between two evils isn't it.  Thanks for the reply and the support I am glad you are doing well. and I don't want to scare anybody away from these drugs for the majority of people they are lifesavers but I believe I will never be as good as I was prior to taking the first one.

 Reply posted for crohnsdiag.

Wow, you have been through a lot!  I have been on methotrexate for a year now and have put off biologics due to my fear of the warnings. Unfortunately my conditioned had worsened and I did have to start Humira in combo with methotrexate and knock wood have had good results w/no side effects.

If I were in your place, I would seek another opinion from a large research/university hospital. Go over your whole story all your med attempts, surgeries, etc and see what they say PRIOR to deciding.  There is no guaranty they will have anything different to recommend, but they may.  Worse case scenario they confirm your current docs direction.