Can't stop crying,have been there before!

[Honey]

Hi there, I have been in remission from the symptoms of Crohn's for over 2 years. However, I was on Remicade infusions before I ended up in hospital for three weeks with a lung infection which was difficult to clear! I have been on Prednisolone since for another problem with my muscles but now have a sore back. I am going for a bone density scan as it may have affected my spine. I will be coming off them.
I now have to consider going back on infusions for Crohns or surgey ! I am afraid to go back on Remicade as I was so ill!!! On the other hand ,I do not wish surgery_ only as a last resort.
I am really upset as I try to make my decision and need your support. My consultant has prescibed Pentasa in the meantime. Could this reduce my inflammatory markers ?
Looking forward to hearing your views and experience.
Thank you.

 

[ronroush7]

I was on Pentasa for a short time and then they switched me to Lialda. They could put you on Humira, Entyvio, Stelara,Cimzia or there are some more otherd out there. I had a reaction to Remicade and they didn't put me on it again. Let us know what happens.

 

[Honey]

Hi there, thank you for your quick reply. I was on a number of different meds which made me ill eg Pancreatitis. Also, methotrexate injections did not work for me" Hence, last resort was Remicade infusions. I was told Pentasa was really only for colitis and not Crohn's.
Hence, I feel my back is against the wall. Neither choice is good. I am upset and scared.

 

[ronroush7]

Ask your gi about some of the other biologics. This is besides the point. You mentioned pancreatitis. I had it six years ago. Best to you.

 

[Honey]

Hi there, I have an intolerance to many meds unfortunately. I am told there is nothing else, tried many. At the moment my symptoms are not affecting my life too much, but I believe when I come off Prednisolone things may change....
Pentasa is easing the constant sore tummy, for a while. Get tired easily.
Thank you for the advice.

 

[ronroush7]

You are welcome.

 

[lgpcarter]

I second Ron's recommendation to ask them about other meds. Stelara and Entyvio in particular. I'm doing fairly well on Entyvio at the moment.

 

[73monte]

I think you should consider going back to Remicade. I know that becoming sick with the lung infection you had was quite a set back. If it was me, I would gamble on the likelihood of getting another serious infection, which might be a very small chance.

Crohn's wise, you're likely feeling pretty good right now, since the effects of Prednisone are still showing. Once that wears, you might have more issues to deal with.

I would agree with the previous advise though, if you choose to stay away from Remicade, you should highly consider another anti-TNF.

 

[Eridon2002]

Pentasa/Lialda and the other mesalamines only treat the top layer of inflammation in the GI tract. Since Crohn's goes through the full thickness these meds are not very effective and current analysis show that they are not any better than placebo. Another biologic as Ron mentioned would likely be more effective.

 

[Honey]

Hi there,
thanks for the advice. However, in the U.K there are only two used viz Infliximab infusions or Methotrexate injections. The latter I did myself, hair came out, I felt miserable and it did not work well. I came off that after 5 months. Infliximab did work but I am afraid of side effects!

I t looks like my only choice though. My symptoms are minor just now but I do know how severe it can become, without the correct treatment. Thank you again for advice and info, I take it Pentax is only a sticking plaster!!!!.
Am I right?
:rosette1::tear: