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What are my chances that azathioprine works again?

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Posted 8/28/2019 2:52 AM (GMT 0)
I thought the surgeries would cure my autoimmune disease. Well it did not. It's just called arthritis now. The rheumatologist wants me back on azathioprine. It stopped working last year inducing my flare which led to the surgeries. What are my chances that it will actually work again?

I've been through prednisone, methotrexate, sulfasalazide, mesalazides, azathioprine (twice), remicade, humira, simponi and xeljanz. I'm so scared because I was at the end of my medical rope.
Posted 8/28/2019 4:17 PM (GMT 0)
Nobody has an idea? I'm so scared

Also he wants me to start directly with 150 mg without tapering up and I'm afraid I'll be nauseous all the time. Any thoughts?
Posted 8/28/2019 5:04 PM (GMT 0)
Talk to the doc about your fears and see if he will agree to starting at a lower dose and work up. I'm a little surprised he wants to use aza to treat arthritis. I didn't know it was used for that.

Try not to be scared. There are lots of meds for arthritis ... you just need to find the best option for you.

Hang in there!! You got rid of one monster, you can tame the next one!!
Posted 8/28/2019 5:11 PM (GMT 0)
It's the kind that flares. He didn't say rheumatoid arthritis but I think that's what it is.
Posted 8/28/2019 5:48 PM (GMT 0)

Andrina said...
I thought the surgeries would cure my autoimmune disease. Well it did not. It's just called arthritis now. The rheumatologist wants me back on azathioprine. It stopped working last year inducing my flare which led to the surgeries. What are my chances that it will actually work again?

I've been through prednisone, methotrexate, sulfasalazide, mesalazides, azathioprine (twice), remicade, humira, simponi and xeljanz. I'm so scared because I was at the end of my medical rope.

Are you saying you were on azathioprine, had a flare, and then went off of azathioprine?

I've been on azathioprine for 10+ years and it doesn't completely prevent flares. It just makes them less frequent and less severe. I had about 1 flare a year for the first 5 years and then switched to a less stressful job, where I haven't had a flare for the last 5 years. The azathioprine has been hugely beneficial, but you shouldn't consider it a failure if you still have occasional flares.
Posted 8/28/2019 5:52 PM (GMT 0)
Yes that's exactly what happened.

Well this time the flare looked different. I had fever which I never had during a flare. Then my sigmoid was straight which never happened before. My colon overall was in bad shape. I had 4-5 accidents during the night alone and it was never this severe before.
Posted 8/29/2019 5:52 AM (GMT 0)
Hi...what about trying LDN? A friend of mind is taking it for RA, and she has been happy with the result over the past few years.

q
Posted 8/29/2019 12:43 PM (GMT 0)
LDN was one of the drugs I tried before too. It's difficult to get and it wasn't effective at the time?
Posted 8/29/2019 3:27 PM (GMT 0)
You were trying it for UC....but if you can have access, maybe worth another go?

q
Posted 8/29/2019 3:36 PM (GMT 0)
I just started azathioprine yesterday. I would need to find out if the doctor who prescribed it to me in 2012 is still there and if she treats the new issues I have. Maybe I will try it again if azathioprine fails but I hope this won't be the case.
Posted 8/29/2019 3:59 PM (GMT 0)
the AZA might not have worked well for your UC, but it might be just fine for RA. I take mine just before bed at 150mg because it makes me nauseas as well. No issues this way. And unfortunately, removing your colon doesn't "cure" the autoimmune aspect of your UC. Autoimmune conditions tend to cluster, so there is nothing you can do to prevent your immune system from deciding to move on to another bodily function/part. I have at least one other AI condition, but it looks like I may have a third (if the plaque psoriasis that has appeared on my scalp is from my dad as opposed to a side effect of the inflectra)
Posted 8/29/2019 4:07 PM (GMT 0)
So you have RA as well? How are your joints doing on aza? Are they still swelling? Do you have daily fevers (99-100F)?
Posted 9/7/2019 3:24 PM (GMT 0)
I've been back on azathioprine for 10 days and I stopped Tylenol a week ago. I no longer have a temperature. My joints are still swelling but I'm able to get up in the morning and move around. This is a huge improvement for me. Considering that azathioprine takes a few weeks to fully kick in, this is already great progress I think.
Posted 9/7/2019 3:50 PM (GMT 0)
Glad to hear you went for it - you should probably see a different specialist, a rheumatologist. There might be some other things to try as well.

When I started on azathrioprine I was also at 150 and my GI did not have me taper up. I had a little nausea for a few days and it went away, no side effects at all for the 12 years or so I was on it. I did have to taper off when I had to stop using it.

Do you take turmeric curcumin? You definitely should if not. There are zero side effects with it. It does have scientific study backing. It's not a cure, just another way to give some relief. I actually think all people should be on it! smile It's helped with mild arthritis in my hands and joint issues in my knee.

Post Edited (Krissy P) : 9/7/2019 11:13:51 AM (GMT-6)

Posted 9/7/2019 4:02 PM (GMT 0)
I tried it when I was flaring and I was told it has a blood thinning effect so I stopped it. I definitely could try it again.
Posted 9/9/2019 12:24 PM (GMT 0)
^Ditto it is a blood thinner, be careful. Supplements can and do have side effects to.
Posted 9/10/2019 3:09 AM (GMT 0)
I am happy you're having some progress with the aza Andrea. It's frustrating that so many people end up with other AI illnesses in addition to UC. I really hope you can get it managed, and keep it under control. It sounds like you're already seeing some results. Keep me updated. I've been meaning to get in touch with you. I've been so busy lately. I miss you.
Posted 9/10/2019 6:10 PM (GMT 0)
Turmeric is a spice, it has scientific studies that prove its effect on inflammation, and is highly recommended by doctors. It's one of the few "supplements" if you can really call it that, that is highly encouraged because of centuries of successful help. It is only considered as cautionary if the person has a bleeding disorder (and even then can still be taken as long as your physician is aware and checks your blood), otherwise taken at correct dosage, it is deemed safe for most.
Posted 9/10/2019 7:14 PM (GMT 0)
>>it has scientific studies that prove...
That's a bit bold and stretch of the currently available clinical evidence. There have been some small-scale, open label studies that showed some promise but need a lot more further study to support broad usage. These early stage studies are known for exaggerated placebo effect (as everyone knows they are getting the Study treatment) and generally taken as a grain of salt due to limited merit and inaccuracies inherit within. The most meaningful gold-standard studies are large scale, double-blind, and peer-verified (required for broad recommendation of use of a treatment for everyone with UC).

I'd call it interesting, but far from certain. Try if you are so inclined, but with a healthy skepticism and expect results after 4-6 weeks. A slight chance it could help, and a larger chance it will not. However, this is a lifetime illness and we have many years to use trial-and-error and personally vet a great variety of things that could possibly help us with our symptoms smile
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