Please help - Medication advice needed...

Need advice - seeing my private consultant tomorrow (paying out of my own pocket)


Jan 2012 - Started going toilet more and more increasingly each week - little blood in stool. Awful joint pain in angle.

June 2012 - diagnosed with UC after colonscopy and was put on prednisolone/sulfasalazine did much better for a few months. Symptoms returned gradually mid 2013 (stomach only - ankle was fine)....

November 2013 - went to see private consulatant who did more tests

February 2014 - Has a 2nd scope under new consultant - says I have indeterminate colitis which I belive is mostly left sided.

March 2014 - started azathioprine (50mg) building up the dose slowly over next few weeks. Stopped sulfasaline

June 2014 - arrived at my regular dose of Aza of 200mg - I weight 100kg.

Also been on steroids and tapering down due to return of joint pain and to give aza a kickstart.

Presently

Never felt worse... Going toilet numerous times (10+) each day - sometimes I only go maybe 5 - but still go more to pass mucus/blood.

I never had much mucus or blood with the sulfasalazine - and have lots now.

Also I feel the AZA isn't doing much to help the joint pain.

I leak a lot of mucus at night time - never had this problem with sulfasalazine

My questions
1) Shall I ask for the biologicals - i.e. Remicade as this is the logical next step. I've been on the Aza at full dose for 4 months (and 7 months since starting outright) - and I don't think it's doing much.

2) Shall I ask to be put back down on the sulfasalazine - whilst it stopped being beneficial for the colitis - i never had any joint pains on it.

3) Is there another option

4) I don't want surgery - I believe my problem is a body wide thing due to the joint pain and numerous bumps/boils around body which I'm told are auto-immune related. Apart from that Surgery for me isn't an option due to personal reasons.

5) Shall I stick it out with the Azathiorpine a little bit longer

6) I can't seem to get below 10mg of Pred without cripping joint pain coming back - it seems to have spread to both my feet in various areas (toes, ankle, ball of foot)...

I'm seeing a Rheumatologist under NHS, and gastro privately - this causes a lot of problems with 'cross-talk' ad conflicting advice - any advice from you guys will be thoroughly appreciated.

Thanks

1) Shall I ask for the biologicals - i.e. Remicade as this is the logical next step. I've been on the Aza at full dose for 4 months (and 7 months since starting outright) - and I don't think it's doing much. I would ask as 4 months should be long enough for AZA to work on it's own, if it was going to be enough to control your uc symptoms. Biologics might be good, and they can help with other pains. Some on the forum (not a common report) have reported joint pains due to aza/6mp/imuran and some from remicade/humira/simponi, don't think it is the majority. Have the pains gotten worse since starting Aza?. Although other auto-imune disorders do benefit from biologics so it could help them.

2) Shall I ask to be put back down on the sulfasalazine - whilst it stopped being beneficial for the colitis - i never had any joint pains on it.Couldn't hurt to try it and see if it helps.

3) Is there another option Enemas (steroid enemas and/or meslamine-based enemas such as rowasa) or suppositories might help.

4) I don't want surgery - I believe my problem is a body wide thing due to the joint pain and numerous bumps/boils around body which I'm told are auto-immune related. Apart from that Surgery for me isn't an option due to personal reasons. Surgery is a personal decision, for now it seems premature to consider it. If you have an immune system attacking things outside of your intestines, then yes, surgery will not fix those.

5) Shall I stick it out with the Azathiorpine a little bit longer No, 4 months is long enough to reach therapeutic levels with AZA. Time to mix up your prescriptions and try new things.

I agree with the above and would go back on the sulfa and start some enemas. I had left sided colitis and those enemas really did help!

I too have quite a bit of joint pain and will probably need to see a rhuematologist soon too. I also get the weird bumps. Mine take forever to go away.

Right, no neef to stop the aza, rather add things to it.

salofalk enemas is what I usually see UKers posting about.

ok
He's keeping me of the Aza, and adding sulfasalasine 1000mg daily (when I was initially just on it I was on 3000mg a day) - he's also given me a script for steroid enemas - which cost £170... going to ask my GP for a NHS script...

This seems to be exactly what u said (iPoop) perhaps you should be a doctor...

THeres not much in the way of peoples experiences from taking these two drugs? Anyone been on it?