Assisted remission?

[highlandsrock]

Maintenance drug or not? Since my reversal operation in June 2011 I've been on no medication for Crohn's. So far it's working pretty well but I'm wondering if I should continue with no meds until I have a flare up or would I be better taking a low dose of a maintenance drug such as Azathioprine or Budesonide. What have others done?

 

[Lisa]

For years, I would be taken off meds when I was in remission - and each time the remission was shorter and shorter - and the flares got worse and worse.....I'd say stay on some type of maintenance med(s).....

 

[Jennifer]

I stick with maintenance meds personally. Was taking 6mp for many years after my resection but now only take Humira and am in remission for 13 years now. I see no reason to take Entocort (Budesonide) if you don't have any active inflammation (its a steroid).

 

[tots]

Maintenance.

I was "untreated" for ten years. I did get a little help from my family Dr from time to time. Long story short. With this current flare- it is now in my large bowel. Had bleeding for the first time- having a hard time acheiving remission.

I guess my way of thinking now is- we cant see it- and I think it can progress with just minor symptoms then your in trouble. Heck my Drs dont even see it by scoping me! (although they dont all agree I have a problem!) The radiologist finds it.


Good luck-

Lauren

 

[Jennifer]

Saw that you requested additional support. I've already posted but I'll bump your thread for others to see.

 

[highlandsrock]

Thanks Crabby.

I take your point about not using Budesonide as a remission drug. I had misread a document I found on the net. I've since found our UK National Health guidelines and they seem to favour Azathioprine. It served me well for many years but I stopped taking it because it appeared to be dragging my platelet count low. I've managed to get hold of all my medical records from 1979 onwards and I drew a chart to see if there was any relationship between my dosage of Azathioprine and the platelet count, and there wasn't.

At the end of May I was diagnosed with PVT when my aesophageal varices burst. Not very pleasant! Since then I've seen a liver specialist and he believes that the low platelet count is due to the PVT which has enlarged my spleen. He believes that the Azathioprine was blameless and that the PVT can be traced back to 1979 when my gut leaked into my abdomen causing pertitonitis.

As you can see this is getting complicated. I can't decide whether I should ask to go back on the Azathioprine as a maintenance dose as I'm currently taking beta blockers and proton pump inhibitors for the PVT and I'm due to start Warfarin to try and disperse the portal vein blood clot. I've tried searching the net for Crohn's and PVT together but haven't found anything very recent. The first one I came across basically said I should be dead, but luckily treatment is moving on.

I'd like to get some more research done before I see the liver specialist in two weeks time, the haematologist 2 days later, the gastroenterologist 4 days after that, followed by an endoscopy 2 days after that! Thank goodness I don't have to pay for all this.

So any advice gratefully received, Regards Nigel

 

[Jennifer]

I took 6MP (similar to Azathioprine) while on many other meds including a beta blocker (Tenormin 25mg). Never taken blood thinners though so I'll have to look that up to see if it interacts but one thing you could do is talk to your local pharmacist and ask them if any of the meds will interact with it and what you should watch out for if you start the Azathioprine again. If you didn't already, it would be a good idea to have your blood work done once a month as well while on it just to be on the safe side (some docs have people go up to 3 months without blood work but that can be dangerous with these meds). You'll be having blood work done often anyway just from the blood thinner (my grandpa takes Warafin and started to have blood work once a week but now does it every 4 weeks, takes time to get the dose right so your blood isn't too think or thick).

To be clear not only do you want to know how Azathioprine might interact with other meds you're on but also how Crohn's is related to or might affect a PVT?

 

[Terriernut]

I've read your blogs, and you have been on a rollercoaster. I am one who wasnt on much for maintenance drugs for years. The state of my colon is not pretty.

I can understand with the liver issues your concern. And of course the drug interactions as well. Crabby is right (as usual!) about speaking to a pharmacist about these, they know ALOT more than Dr's about drug interactions.

6MP might be a good option? It's already processed and your liver wont have to do the work. It's a lower dose than aza as it's already processed. However, it is a drug just like aza, and your liver will have to be monitored very closely, even if you were a healthy individual.

Another option I would look into if I were you would be LDN.

 

[Beatit]

Maintenance drug or not? Since my reversal operation in June 2011 I've been on no medication for Crohn's. So far it's working pretty well but I'm wondering if I should continue with no meds until I have a flare up or would I be better taking a low dose of a maintenance drug such as Azathioprine or Budesonide. What have others done?

Depends lift up your shirt and squeeze your sides and put pressure right below your belly button. Do this each week and if you see alot of pressure built up there I would phone the doctor to get some meds. I would hit the anti inflamtory natural stuff out there too. Many natural stuff does not work it depends on your body.

 

[Grumbletum]

I've been asking myself the same question, Nigel. They took me off Azathioprine before I had the resection. The surgeon told me before I left hospital that the GI would probably want me to go on a maintenance med, possibly 6mp. The GI had mentioned the last time I was in hospital possibly switching to it because it is a 'cleaner drug than Aza' in his words.
I don't think the Aza was doing me that much good cos they found my affected area still very inflamed when they went it to fix the fistula. I'm waiting for a follow-up appointment in Stornoway to see the GI there rather than travel all the way to Inverness.
I'm in two minds really: the drugs scare me, but so does the disease and the way it can creep up on you!

 

[highlandsrock]

Thanks for all your responses, I appreciate the time you've taken.

As mentioned above I'm seeing my liver specialist and my haematologist next week so I decided to try for the full house and see my gastroenterologist as it's his role to co-ordinate all the treatment strands. I emailed his secretary and, result, I've got an appointment on Tuesday week. (He has always said that he would see me at short notice and has been good to his word)

I'll have the chance to ask each of the specialists what they would recommend in terms of maintenance drugs from each of their perspectives and then I'll have better information upon which to make a judgement.

The other thing I want to discuss with the gastroenterologist is the fact I'm getting some mild pain in the area of my operation scar and it seems to be worse if I wear a tight belt. I'm hoping it's purely mechanical and not the precursor to something more serious.

Regards, Nigel