Azathioprine advice?

My doctor changed his mind and decided to put me on Azathioprine instead of Humira-at least for the time being-while continuing with Uceris (budesonide tablets) for Crohn's flare.

I've never been on an immunosuppressant, and have some concerns about doing so with a cancer history, and while overseas (from the US-but deciding whether to head back to Spain or not).

Any advice?

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36 Replies

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  • I took Azathioprine for 31 years for Lupus/RA only coming off it last year as I had small skin cancers, Humira was added 9 years ago. I was meant to come off Humira also, but it works so well for my erosive RA so I decided to stay on it. I now have Mtx instead of the Azarhioprine. We are all very different in how we react to to drugs, so it's very differcult to advise you. I suggest a good talk with your doctor with your concerns. Maybe post on the Crohns and colitis site as maybe more helpful for you condition. Wishing you all the best. G X

  • Thank you Gigi- i'm new to this site and still figuring out how to post in different groups. Thought when I posted to "everyone" it went into a general group, Ha! I started here initially, because people had posted about Humira. Hopefully, I'll figure out how to repost!

  • Hi viajera. They are both autoimmune diseases and treatments similar. Many people on here have more than one autoimmune condition, I also have Hasimotoes so belong to the Thyroid UK site. If you click on my communities on the top and join the Crohns and colitis site and rewrite your post. Hopefully you will get some good advice on there. I do wish you all the very best in how you go forward. Hugs G X

  • I've been on it for 2 years and I do catch every little bug that goes by. If I don't stop taking it at the first sign of illness, a little cold that everyone else kicks in a week will linger for months with me. It doesn't make the RA pain free but I have no real joint damage yet and my liver numbers have returned to normal so it is doing the job.

  • Thank you dbestdeb! The more information I have the better. I'm considering returning to Spain (from the US- currently home for the summer), but was already catching every virus that came by in Spain last year, and I was not on immunosuppressants at the time. Makes me kind of nervous…. :(

  • I'm in the US too!

    It makes me nervous also but my rheumatologist assured me that all RA drugs come with their risks. Even sulfasalazine, that I was on before this, has a risk of limphoma. I had no idea as my previous Dr never informed me about that or the damage the steroid shots would do over time either. You just have to weigh the need with the risk and decide from there. I stick with this drug mainly for my liver as I've had high enzymes even before RA showed up, but now they are normal.

    Best wishes to you, and safe travels!

  • Hi Deb! Thank you for your good advice. By the way-when you first started did they do weekly blood work on you?

  • No, just every three months as always.

  • OK, I wasn't sure-it looks like people who are taking it for transplant rejection purposes are checked more frequently, correct?

  • That could be. I started it with one rheumatologist and then I moved and my new one has the same protocol, so I assume for RA every 3 months is standard unless you have other issues. When I first started it, the dr did send me for an extra test about a month in and while my liver numbers were better they weren't normal and he added in 5mg of prednisone. After that my bloodwork was normal and he weaned me off the steroid. My new rheumatologist hates steroids more than anything. She said long-term, they are not the friend they seem to be. Lol

  • Same here-the idea is to get me off the budesonide eventually. Now I have a new issue: I had my friend in Spain go to check on pricing, and the local pharmacist told her that they don't sell budesonide in Spain. Not sure what to do next...good grief!

  • I'm sure your friend is right but I've just done a quick search from info supplied to me by my Spanish Consultant. I've found that Vidal Vademecum Spain, a Madrid pharmaceutical company makes Budesónida comprimidos/cápsulas vademecum.es/principios-act..., as does Tillotts Pharma GMBH, Barcelona, under the brand name Entocord, 3mg modified release cápsulas nomenclator.org/2017/entoco....

    Now my info might be out of date as I've had this list since 2008 but if they are still produced in Spain they may be available to order in at least if not carried in stock at most farmacias.

  • Hi nomoreheels! Somehow I missed this post of yours! Good to know it's available-any idea what it costs? Or some other way to find out?

  • No idea on costs I'm afraid, I'm out of date with costs to patient anyhow. Do you think your friend would be good enough to ask again but for Budesónida & Entocord?

  • Just wanted to update you in case I forgot-you are right, you can get it here in Spain in 3 mg! It costs about 100€ a month retail (9 mg/daily) if you're not in the public health system. The pharmacist was quite apologetic about it-but back home if you purchase it retail it is $1400/mo. So, considering that, it's a bargain :-). By the way-would you mind connecting me up with your advisor here in Spain? Not sure what region he/she was in?

  • That's good, pleased it is available. Yes, by comparison it is a bargain 😧although it would be considerably less I'm sure if you are intending working because as soon as you get your Documento de Afiliación a la Seguridad, paying tax & apply for a Tarjeta Sanitaria you'd have access to state healthcare. This may be helpful, healthplanspain.com/blog/he..., it gives some idea of the co-pay percentages on prescription meds though be aware that they are decided by each autonomous region so you'd need to do a search for the specific region you'd be working in. Additionally this link may give more info re the healthcare system expatica.com/es/healthcare/...

    I'm sorry, not sure what you mean by my advisor?

  • Sorry, I think you called this person your "Spanish consultant" in an earlier post? And, yes, getting a "real" Job would be helpful! Unfortunately, I am a US citizen and that's quite difficult ( I'm working on it). I'm currently here under a "grant" program that provides limited private insurance, but it doesn't cover prescriptions :( i've done a bit of checking around for private insurance-but I'm having finding difficulty getting anything that would cover pre-existing conditions. Looks like it will be cheaper for me just to pay out-of-pocket for prescriptions for the time being most likely.

  • Maybe they sell it under a different name. Ask a pharmacist here and ask your doctor if there is another corticosteroid that might be prescribed since this one isn't sold in Spain. Another option might be to have it mailed to you, though I'm not sure of the rules regarding things like that. How long are you planning to be there? Maybe you can get a 3 month prescription.

  • Thanks for the good ideas, as always, Deb:)!

    Unfortunately, in my experience, mailing to Spain is very tricky, so not a good idea. Also, I don't think there's another good steroid option for me (btw, for anyone interested, the generic name "budesonide" is very similar in Spanish: "budesonida").

    Luckily, I did get 3 months worth, so that will at least get me started (I'll be there 10 months or so).

    My Azathioprine just arrived. Honestly, I'm still afraid to take it even (or, especially?) after speaking to 2 pharmacists, two doctors, and reading the package insert, ha! The doctor I saw yesterday described it as "chemo lite", and said not to touch my students or hug them...but obviously has never experienced the Spanish double-kiss! How to cope as a teacher?

  • I am a retired teacher. During my last couple of years teaching I was sick a great deal. Now I care for my grandbabies during the day and I still pick up their little germs and turn them into big deals. I have to stop taking the Azathioprine at the first sign of illness to give my body a chance to fight. I'm not sure how you will be able to cope. Being sick so much was one of the reasons I retired when I did. I wish you much luck with it and hope you will keep us posted on how you are doing with it.

  • Thank you for sharing more details, Deb-we have so much in common! Last year I was sick with a runny nose and/or gi issues a good part of the year, and I ended up in the ER twice. And that was before Azathioprine...!

    Hygiene is a big issue. The government ran a public service campaign last year asking people to wash their hands. At my school there was no soap or paper towels in the students' bathrooms, and in my experience it's not necessarily routine to wash hands before food prep either.

    My primary care provider, who I saw yesterday, told me the same as you-to go off the Aza at the first sign of illness, but he encouraged me to go, get regular lab work, and to return at Christmas if things weren't going well. The mail order pharmacist suggested I plan to visit home at Christmas, regardless, for doctor followup. But with that additional expense, not sure if it's worth going, as my pay is minimal.

    Good grief. My head is spinning.

  • Hi Deb! I spoke to the pharmacist and my gastroenterologist who both suggested that going off the Aza when ill wouldn't be helpful, because it builds up in your tissue and doesn't diminish that quickly. But you had experience with that-can you describe what would happen when you did or didn't go off of it? And for how long you would go off of it?

  • It absolutely works to go off as soon as you start feeling ill. I just did it last week as I felt a sinus infection starting. I didn't take it as long as I felt bad for about 4 days. As I felt better, when I started taking it again I took it every other day for a few days before starting back to the full dosage. Last February I caught a cold that the rest of the family was over in a week. Finally after two months of miserable coughing, I decided to stop the Az. No one had told me I could. Within a week, the coughing was done. If the Az builds up as they say, I don't know why it works as it does, but it does for sure. By the way, for me the RA pain amps up after day 2 with no Az.

  • Thanks a lot, Deb! It's so helpful to talk to someone who's "been there done that". My primary care doctor told me to do the same thing that you're saying.

  • Glad I could help. Best wishes for safe travel and a healthy stay. :)

  • I woke up feeling crappy this morning- on good days I feel like I can do anything, on bad days, I feel like I should forget it & just stay here…😕 I bet you can relate!

  • I don't have good days much anymore since the doc took my steroid shots away. Mostly the pain isn't awful for me unless I try to exercise or walk for more than a few minutes, but the fatigue is never ending. I try to count it as a blessing that I can still function well enough to watch my grandchildren everyday. I stopped teaching in my 36th year because I just couldn't do the job justice anymore. Thankfully I can still help my daughter with her babies. I hope you feel better.

  • I am so sorry to hear that Deb :( but i'm glad you've got those grandkids-we all need a reason for being XOXO hang in there, my friend 😘

  • Thank you, and you as well! ❤️

  • Hey-here's my update, everyone! I seem to be doing better on the Azathioprine, although I have had back-to-back colds that take longer than usual to get over.

    Now my biggest issue is hair loss-not only do I see more hair left on the hairbrush and in the sink, but my hairline at my forehead is receding.

    Typically, I color my hair-but I'm not sure that's a good idea....? Wondering if I should cut it short-which would be kind of a big deal since I've had it long for years.

    I've been advised to take vitamins-but because of my active Crohn's disease they will cause too many g.i. problems.

    Any brilliant advice???😃

  • Hey! Great to hear from you and I’m so glad that you’re doing well on the Azathioprine! I’m afraid that hair loss is a symptom of the disease as well as some of the drugs and just plain old aging, as my dermatologist explained. Mine started thinning before I was diagnosed and on any meds. I took tons of biotin trying to combat it, but it didn’t really help. Switching to only organic hair products did help slow it down some though and they aren’t as pricy as the salon products I was using. I don’t think coloring your hair is causing the problem since it isn’t breakage from damage. Cutting your hair would not stop the problem either, but it would make it easier to style different ways to cover the missing patches. I hope it doesn’t come to that. I hate when this disease forces us to change who we are to accommodate it.

    I hope you continue to do well and are able to figure out a solution to the hair problem.

  • Hi Deb! Sorry for my late response-It seems I'm not always getting alerts like I used to-so just saw your reply. I went to a naturalist shop here and they suggested I give Henna a try- The only downside being that you have to leave it on your hair for three hours! Have you tried it?

  • No, I haven’t tried it but I’ll be interested to hear if it helps the hair loss. Three hours is a long time!

  • Right?! Too long! I have used Naturetint that I buy at Whole Foods in the US and have found at a couple of stores here in Spain, too. The processing time is a lot shorter, so I'm wavering… !

  • I was leery of the Enbrel my dr wants to put me on for the same reasons. When I voiced concerns she said all of the RA drugs have a cancer risk, including the ones considered safe like sulfalsalzine. She also said that RA patients untreated are at risk for cancer too due to the unchecked inflammation. I was a lot less concerned after that. Lol

  • Yes, my pharmacist in the US and my Spanish G.I. doctor had similar responses when I was resistant because of the cancer risks (which, statistically, are quite low ). Sometimes I have to do a better job of looking at the big picture ;)

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