Thought you might be interested in my recent "brush" with Azothioprine & maybe advise.
Had suspected GCA in September (at that time on 2.5ml. pred. for about 2 months.) put on 40ml. pred. reducing by 5ml. every 2 weeks..currently down to 10ml. I know how lucky I am that, since the original 6 weeks of excruciating pain, I have had no pain since I started on pred. 20 months ago..all my problems have been due to the side effects of the steroids (breathless, lack of energy, burping, sleepless nights, sweating ) or my rushing to reduce them.
Saw rheumy 2 weeks ago, who was concerned about my inflammation markers being so high compared to my last bloods 4 weeks ago, when I had been on a high dose of steroids since Sept. She was also worried that my face and neck showed cushingoid symptoms..face very round, red, fat & fat neck/throat area. She suggested Azathioprine to combat the inflammation and as a steroid sparer and after a long discussion I reluctantly agreed to try it for 3 months.
Day 1..took it am. pain cramping in groin and spotting blood in urine by about 8pm. Day 2..same thing. I thought it could be a diverticulitis flare. Day 3..cramping, groin pain and spotting all day. Day 4.. stopped taking Azathioprine..cramping, groin pain and spotting stopped immediately and has not happened again. Had anyone else tried this medication or had the same symptoms? I can't find this as a side effect anywhere. Any ideas? Left message asking rheumy to contact me to discuss over a week ago..no contact. I noticed a few post on Azathioprine, but it doesn't seem a very common medication to prescribe for PMR.
As an add-on, my GP rang me this week to ask why I am still on steroids..he thinks 6 week course should have been long enough! When I said it was long term treatment over years, he was not happy to continue giving me repeat prescriptions for pred. Another thing I need to sort out with rheumy, if she ever contacts me!
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Azathioprine, like other DMARDS, can have some nasty side effects. Why on earth does your GP think six weeks is long enough for steroids? What on earth do they think you have got? Words fail me.
I have been taking Azathioprine for a few years now and it did help me reduce steroids which I didn’t tolerate well. I was an overweight type 2 diabetic badly controlled on oral medication.Prior to Azathioprine I was taking Methiotrexate injections. This was stopped when I had sepsis secondary to a very low white cell count and very low immunity. None of this is said to alarm but your immunity is already low with the prednisilone, add a DMARD and it can cause problems.
Re your symptoms have they tested you for a UTI? Also did you have a blood test before you took Azathioprine?
If you continue with it you also need very frequent blood tests. I am now weaning off the Azathioprine slowly on balance I think it was a good decision for me to take it but we are all different. Good luck with the battle.
I was put on azathioprine as a steroid sparer and made me extremely ill. I had flu like symptoms shivering that I couldn’t control, hot sweats and feeling very ill. Stopped taking it and returned to normal.!my GP didn’t think it was the azathioprine and asked me to try it again. So I stupidly agreed, steroid brain fog in action, and you can guess I got the same result. So I’m now recorded as alergic.
I was prescribed Azathioprine as a steroid sparing drug but I never felt well on it, felt sick, stomach aches, dizzy spells. I continued with it for nearly six months but as it wasn’t having the desired effect of enabling me to reduce the steroids it was stopped. I began to feel better afterwards. We are all different but it didn’t work for me. Steroids may have their issues but they keep my PMR inflammation under control and enable me to have a pretty good life. The moon face and humpy shoulder/neck area reduced as I slowly reduced the steroids using the DSNS method suggested here. I’m still working my way down slowly, having a bit of a hiccup at 3.5 but my GP is ok with that. If your rheumy doesn’t contact you, you contact him/her to ensure you can get your steroid prescription continued. Good luck.
I have been taking azathioprine for nearly 2 years, it has helped me get to 2mg prednisolone where I seem to be stuck. Sticking to the subject I have had very few side effects except when I have forgotten to take it with our evening meal and taken it with just a biscuit at bedtime. Then gut pain has ensued. The instructions with my pills do say to take it with a substantial amount of food. I also have diverticular disease, although it hasn't troubled me lately.The real downside for me is that it further suppresses my immune system making covid more of a threat; I have had my third covid vaccination but am increasing incensed at the government's refusal to encourage mask wearing to protect people like me. I think my movements are more restricted now than they were last year.
Hi everyone, and thanks for your insights. Guess it's swings and roundabouts for every med and for every individual. It was such a strange side effect tho..I would have understood better if it had affected my stomach. I did have blood tests before taking it and am due to have them again (every 2wks) but my GP surgery can't fit me in for bloods! Have to go to rheumy clinic 40min. drive away..Will still go even tho not taking Azathioprine, just in case, anyway, hopefully, she will still want to check on inflammation levels and if she hasn't contacted me, I may be able to speak to her.
I managed to get down to 2.5ml. pred. for a couple of months before without any other drugs so that is my goal..only a bit more sensibly than I did it last time 😉..I read and learn from you all.
There is very mixed opinion of the use of DMARDs alongside pred as so-called "steroid sparers". Sometimes they appear to work to allow patients to get to a slightly lower dose of pred - but at the expense of another layer of side effects. And without any proof the patient wouldn't have got lower by using more reasonable approach to their taper. If you were able to look back on the forum you would find a lot of people who couldn't reduce their dose as the rheumy suggested - but have been able to using one of the slowed tapers we go on about all the time on the forum or even simply by using much smaller steps and less often.
However - different DMARDs work in different situations and AZA has been found to help reduce steroid dose in asthma - but there is little evidence it works in PMR. It is beginning to be quite clear that PMR is not a single disorder, there are several versions of it, and one size does not fit all.
Your GP needs education - urgently. Try referring him to this publication:
which should at least educate them to the fact that PMR is a chronic disorder that lasts AT LEAST 2 years and frequently longer. In the meantime, interview a few other GPs in the practice.
And as for the AZA, the answer is a resounding NO! If only because of the obvious adverse effects you experienced.
And a PS - I had "Cushingoid" as the first diagnosis on my discharge letter some years ago. I was on methyl prednisolone at the time after having had no such problems with prednisolone but had had to be switched as prednisolone isn't available here, I was switched again to prednisone and at the same time had gone on a low carb diet even before switching drug - and within a few weeks the swim-ring around my waist was melting away. In about 2 months I had lost enough around my midriff for the trousers I had with me for my daughter's wedding to simply fall down! Over 18 months I lost about 35lbs despite still being on pred - and all my doctors say there is no indication I am on pred if you don't know. I'm still overweight, I always was, but there are no specifically Cushingoid features.
Hi, thanks for your reply which more or less confirms what I am thinking..I really have to convince rheumy "slow and steady" instead of extra meds.She seems very concerned about the side effects I am struggling with, but reading this forum are not so unusual or unexpected. I, at least, learned from tapering too quickly last time..at my own insistence by the way, so this time want to go a lot slower.
I am overweight, have been all my life, but have not put an ounce of weight on..just fat redistributed to face and neck, which again seems quite common. Difference is it hasn't reduced as I have reduced the pred. I eat quite healthily anyway, lots greens, salads, fish, very little meat etc. and have been working on cutting carbs. since joining the forum..so all your advice is getting through 🤗
As for my GP..useless doesn't describe him. I live in a small village, this is the only surgery..3 doctors and believe me they are ALL as bad..have tried them all. Have been trying to change for 2 years. Closest I can get is 20 miles away, which is not really acceptable. Everyone sees same GP in village, so no recommendations for about else..but still trying. He says he trained initially under rheumatologist!! Either things have changed drastically in 30 years or he wasn't listening 😴
Will keep plodding along, fingers crossed, and hope to get a little more control over my life.
Ask him if he has had his memory tested!!!! What he is on about is how to use steroids in a flare of a rheumatological condition while the other medication is adjusted if necessary. Pred is the DMARD in PMR and GCA - and he needs to look it up and learn how to use it since he currently has a patient requiring that knowledge. I am most concerned about the fact you had suspected GCA and the GP thinks 6 weeks pred is enough.
And has the rheumy looked for any evidence of LVV? if the markers are high it shows you are simply not on enough pred to combat the inflammation - and if GCA was suspected in September I would want to be still on nearer 30mg at this stage. It does sound as if you have a set of ignoramuses managing you. The side effects are par for the course - and they need to learn that. The redistribution of fat is to be expected - happened to me, weight gained because of immobility due to PMR which then moved once I started on pred.
Sorry, I know nothing about Azathioprine, but I am EXTREMELY concerned about the knowledge of your GP. I would suggest you contact your rheumy and get them to write to you GP asap. My oh my, that is a huge concern
My rheumy writes to GP after each of my visits every 6 weeks, detailing our conversation, any progress or not, medication needed and why. She actually can't be any clearer..he seems to ignore it.Have to say tho..he did start me on 40ml. pred. in Sept when he suspected GCA, which, when I managed to speak to rheumy, she agreed with, but he wanted me to go down 10ml. every 2 weeks and then stop..needless to say, I ignored that.
I try just to deal with rheumy so as not to get conflicting advice, but also try to temper her advice to suit how I feel..life is a struggle without PMR..they make it harder.
I tend to pay more attention to this forum and relate what I read to my symptoms..it's the only sense I get 🤗
I get very annoyed about GPs who don't bother to read notes - do you get copies of the letters? If not, insist on your copy and file them for reference!
so where do you get your pred from - GP or hospitalIf GP then you really need to ram it home to them that you cannot just stop steroids. I would seriously look around for better if you can.
Rheumy prescribes and GP gives prescription...that started because of the distance I have to travel for rheumy visits and because of lockdown.I will get that changed hopefully at my next rheumy visit. Will ask her to prescribe enough steroids til next visit. That still leaves me with the dilemma of not getting enough if I taper slower than told
I was prescribed it a few months into my journey with PMR/GCA, my Rheumy was not easy to talk to and I left the consultation with no idea why I was meant to take it .... so I didn't! I read up on the side effects, and bearing in mind I was on a huge dose of steroids - didnt take it.
And, as for six weeks, I am into my 6th year .... hopefully you will be off steroids long before this, but with high inflammatory markers your body is still struggling .... push to speak to your consultant and maybe change your doctor! I changed both, and my GP has been my rock in all honesty.Best wishes
This is obviously not a well used or tolerated medication. Reading all this, glad I stopped as soon as I did. Will have to look harder for new GP. Been a challenge so far but am still looking. Think I have set my mind that this will all take as long as it takes but it's hard to deal with inflammation I apparently have when I have absolutely no pain anywhere!
Have bloods booked for Tuesday at rheumy clinic, will try to contact her there if no luck earlier and discuss dealing with inflammation without extra meds..should be interesting 🤔
This is nothing short of a horror story. I can only hope that at the very least your GP has agreed to prescribe you pred even if, in his obvious ignorance , he thinks 6 weeks is long enough.
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