Hi
I am experiencing another flare up after being in remission,i am on steroids but they dont seem to be getting the inflammation down! I am worried the consultant will want to put me on immunesuppresant drugs instead of pentasa but i have heard they arent good as you need to stay away with people who have flu,colds etc i work in an office so this isnt possible!anyone have any experience of these drugs?
Hi charliem I was on methotrexate for quite a while when everything else failed and felt a lot better. At the time I worked in a school and as you can imagine was worried about the infection aspect but was fine. Just be sensible about hand washing etc and ask those you work with to let you know if they or anyone in their family have anything like chickenpox or shingles.
You probably catch most things from travelling or shopping anyway so need to outway the risk and the chance of feeling better and getting a loo free life back. Talk to your doctor, good luck.
Hi Nannylin,
Thank you for your reply, it is very scary reading up about all the different drugs as they seem to increase the risk of various other illnesses! How long did it take for them to start working for you? I am trying to get some background info before i see my nurse. Do you not get any of the side effects of flu,colds etc?
Thank you for your help its good to speak to someone
Hi Charliem I was having this treatment about 4 years ago and can't really remember the time span I was on them. I took prednisone for quite a time before and that calmed symptoms down well but had slee disturbance and they alps have affected by bones so if you have to take steroids long term make sure you ask for calcium supplements. I started the methotrexate alongside the steroid and gradually tapered off the steroids. I can honestly say during the time I was taking methotrexate I felt well and didn't pick up any bugs or infections which I honestly expected to ! The only reason I came off the drug was because I kept having obstructions due to strictures and needed surgery. Since surgery I have been lucky until and this is the first (and only I hope) flare and I think it has been caused by stress. Don't forget everyone is different and will react to drugs in a different way.please feel free to ask if you think I can help.
Hi nannylin,
I have read you can only be on them for 5 years and then not sure what happens after that. I am on pentasa aswell as the steroids to calm the flare up but steroids arent working and still having pains and bloody stools. I have read lots of bad press about them so is good to hear someones positive experience about the drugs. Thank you for your help and I hope you get over your flare up.
Hi charliem that's bad that the steroids aren't working for you. I started on pentasa and found it did nothing for me. Probably a silly question but are you being careful with your diet and avoiding fruit, veg and fatty foods. I tend to eat unhealthy pasta, white bread, white rice, chicken and fish definitely no nuts or seeds. You probably know all this already. Hope you feel better soon.☺️