Azathioprine

[bowler]

Has anyone been on Azathioprine ? and any bad side effects ?

[Runrig01]

Just started about 6 weeks ago, so early days. They say it is 6-12 weeks before you will notice the difference. I have had no problems at all with it, although I decided to take with my evening meal which is my largest meal of the day. I'm currently on 75mgs and increase again in 3 weeks. Don't know if it's coincidence but my shoulders are no way near as stiff, and managing stairs is less of a struggle. I do also have GCA type symptoms that are being investigated, but the Azathioprine is not helping these symptoms. I was put on it because I've been stuck between 8-10mgs of Pred for a year now, as the GCA type symptoms get worse as I lower the dose. Hope this helps, take care

[bowler in reply to Runrig01]

Thanks for your reply

I have GCA/PMR was diagnosed 14 years ago aged 54, I have never been off Pred. all those years because of frequent flares. My main problem is the GCA.

I saw my Rheumatologist 2 weeks ago, and he spoke about Azathioprine.

I had an appointment come this morning for May to see the Rheumatology practice nurse, so I reckon they want to start me on the Azathiopine ?

I did read a bit about this drug, and I wasn't impressed.

They did try me on Methotrexate 5 years ago, but that was awful for me.

I am having another flare at the presen of GCA, and had to go back on 40mgs. Pred.

I'm glad that the Aza. is helping you with PMR strange that it's not helping the GCA!!. but at least you dont seem to be having a problem with them.

I wonder if they will help my GCA ? I suppose I wont know until I try.

I just dont look forward to the side effects of these drugs, and if it lists all the side effects you bet I will get most of them.

[Runrig01 in reply to bowler]

Your Rheumatologist should do a blood test called TPMT which ensures you have enzyme present to break down the Azathioprine. The test has to be sent of to a specialist centre, so takes a few weeks. If bloods are ok they will then start a low dose to check your tolerance then slowly increase. I have burning temples, jaw cramping, tongue pain and it twitches all night and some head pain with tenderness. Rheumys are reluctant to diagnose because of my age and normal bloods. Although research states 4-11% of pts with GCA have normal bloods. Just as well I have a lot of patience and tend not to worry.

[bowler in reply to Runrig01]

Thanks for that info. At least they will test me before they start treatment. I just have to wait now till May.

When I was first diagnosed my ESR was only in the mid 40s.

and it's never been the same when I have a flare. This time the ESR was the lowest it's been with a flare at only 8 !!!

I'm also experiencing some pins/needles in the feet, and over the head as well as the headaches of the GCA. I'm now wondering if I have something else going on? especially with the lower ESR. However my Rheumy, said not to take too much notice of numbers when he saw the ESR was only 8.

I also have stage 3 kidney disease and wonder if my kidneys will cope with more medication, and I'm also on 3 blood pressure tablets.

[Hidden]

Hi Bowler,

Have you ever had a scan of your Aorta or other large vessels? Sometimes patients with GCA can have other vessel involvement outside of the cranial arteries. CT/PET scans appear to be a particularly useful investigation for this. My understanding is that widespread GCA and Takayasu's arteritis can overlap and require " extra " immunosupression as well as prednisolone to go into remission.

There is an interesting article in Arthritis and Rheumatism. Google " Utility of FDG-PET CT scanning in A Rheumatology service: Indications,Results And Influence On Management Decisions " ( sorry, don't know how to post links! ). One of the authors is Prof Dasgupta who is the UK expert in PMR/GCA.

14 years is a long time without remission.

Best wishes

Keyes

[bowler in reply to Hidden]

I did have an echocardiogram of the heart last year, so I assume they looked at the aorta ? they did find some calcification in the valves.

I do get remissions, and manage to get down on a lower dose of Pred. after a flare, but I have never been able to come off of them completely. IF I can get down to 5 mgs I was told to stay on that always.

I was told that the disease would burn itself out in 2 years !!!!

Thank you for the link I will try and access it.

[PMRpro Ambassador in reply to bowler]

No - an echo just looks at the heart and possibly the top of the aorta where it leaves the heart. This is something some of us have been discussing recently - partly because of a comment made in Kate's book. The guidelines say anyone with GCA should have an x-ray done bi-annually to check for aortic aneurysm but it is rarely done - and Kate implies the medics don't do it because it is too risky to do any thing about it. This is simply not true, and if vascular specialists had anything to do with caring for GCA patients it would be done. If an aneurysm is caught while it is still relatively small it is possible to deal with it either with stents or surgery and there is a screening programme already up and running in the UK for men over 65. They are at a 4% risk of developing an aortic aneurysm - patients with GCA are at a 10% risk. I think that speaks for itself.

[Hidden in reply to PMRpro]

Interesting discussion. PMRpro is right regarding the echo. Interestingly I have an enlarged thoracic ascending aorta which is thought to be congenital.

The issue of aortic and other large vessel inflammation is a thorny nettle that no one wants to grasp. I wonder if it is because PMR/GCA is viewed as a disease of the " elderly "! Certainly the research into treatments for PMR/GCA has lagged behind other vasculidites especially ANCA positive variants.

When I look at my own search for a diagnosis I realise how incredibly complex it all is. I have moderately raised inflamatory markets, low C3 complement, anemia, weight loss, equivocal lupus bloods and all the classic signs of PMR/GCA. In my reading I have discovered that both Lupus and ankalosing spondylitis can present with polymyalgic symptoms. I think there are more overlaps and crossovers between all the auto immune diseases to be discovered. Hopefully one day medical science will provide all the answers!

Best wishes

Keyes

[PMRpro Ambassador in reply to Hidden]

I've said several times that I suspect which autoimmune disorder you are labelled with depends on which set of symptoms off the shelf were handed to you. Often the wrong questions are asked/no questions are asked - at the time I didn't know the half of what I know now but the rheumy was only interested in had I got a headache. Nothing about jaw or scalp pain. In retrospect it seemed as if only an excellent knowledge of vasculitis etc on the part of the patient so the correct info was provided would achieve a diagnosis!

And yes - couldn't agree more with you Keyes, of no interest because we weren't perceived as part of the working population! As long as they insist people in their 50s can't have them it will stay the same! However - the gubmint's machinations to make us work until we're 75 before we can retire may change that a bit

There are many things that can present with polymyalgic syndrome - and the greatest disservice is in it having been called p.rheumatica. It isn't rheumatism - it is something bigger. I do know one research rheumy who agrees with me it should be renamed: steroid responsive polymyalgia syndrome. This differentiates it from other options and might at least achieve a closer look at any patient presenting with the symptoms to see their response to a moderate dose of pred. At least if your patient is no longer in agony and able to function you have achieved something.

I don't care too much about the pred side effects. At 56 I couldn't walk down the road - that alone was going to make me more likely to be obese, put me at risk of osteoporosis and, ultimately, depression. If I had had to spend much longer in so much pain and dependent on others suicide was becoming a very real option. If only they would understand that, how much it affects us - and taking an ordinary pain killer does NOTHING.

[Whittlesey in reply to PMRpro]

Yes. Concerning the Cat scans. I have spoken with a thoracic surgeon. I have at least one "pseudo" aneuyorism and if it becomes larger or begins to "bleed" they can do something, before it moves to the brain. This is important and apparently is specific to GCA, the dissection of major arteries. I am having CAT Scans every three months. So far, no changes. I take aspirin every day, along with the 3mgs of medrol. Am on the anti inflammatory diet. I do have wheat periodically, sometimes bread, not too much and goat cheese twice a month. I am taking simsvastin, which is a statin for cholesterol, with no side effects.

[PMRpro Ambassador in reply to Whittlesey]

You don't need a CAT scan to monitor for AAA (abdominal aortic aneurysm) and there's no way you'd get one in the UK every 3 months! Apart from anything else the radiation dose is far too high.

The screening programme in the UK calls every man over 65 for an ultrasound scan of their abdomen. If an aneurysm of any size is found they are recalled to monitor its growth with a cut off point of a diameter of 5.5mm - when it reaches that point (many never do) they take appropriate action, either stenting or surgery.

Younger men who have a family history or women who are concerned can apply to be screened via their GP - and that is all that would be required for GCA patients to be included.

[Whittlesey in reply to PMRpro]

The Cat Scan is for the dissecting arteries, the cartoid, and two vertebral arteries and the aneuryisms or pseudo aneuryisms which have formed along the sides of the dissections. They can act as aneuryisms and can be just as dangerous. My thoracic surgeon has been dealing with arteries for years and said the situation presents a danger. He doesn't like the radiation and neither do I. I take the scans because it shows if they have gotten larger or changed position, either of which may present harm. and/or threat of stroke. This is one of many ways of managing potential stroke or heart attack. They also do aorta scans, I am not sure how often, I've had mine scanned twice, since being diagnosed.

[Whittlesey in reply to Hidden]

Hi Keyes and Bowler, I agree with you on this, Bowler. I have CAT scans of my aorta (which is ok) and of my cartoid and vertebral arteries (after the initial diagnosis of GCA). The cartoid and two vertebral arteries are dissecting. I am now taking an aspirin a day and a beta blocker. They increased the prednisone at the hospital to 20 mgs and was told to reduce it down to 5mgs, which I did. This can be a dangerous situation, both stroke and heart attack are watched for.

Would definitely try for a biopsy for GCA. In the U.S. they are doing them, even without the blood levels indicating GCA. One of my initial doctors, rheumatologist has written on GCA. He wrote a memo to the neurologists at Mt. Sinai who initially missed it, that taking a steroid for migraine or any other reason should not work against taking all tests for GCA, including the biopsy. They missed the GCA I am dealing with now, for at least 4 months, which is pretty dangerous considering the quick blindness, which can occur. I also now (and maybe then ?) have at least three other arteries which are not only inflamed, but are actually dissecting. I am also taking beet vitamins (I have read that beets help to rebuild arteries) and my doctor is aware of this and has no problems with this.

Would really push on the GCA test. If you have it, they need to treat you for it. and you need to see a neurologist/ opthomologist to see and test your eyes. I had white places on the optic nerve, which is extremely dangerous. (they are supposed to be red). It means the blood intended to flow from the artery (temple) to the eye nerve, is not flowing, well enough. You can either lose your eyesight or have reduced eyesight. The large doses of prednisone stop that quickly. But they have to know you have it. I still have restricted vision in my left eye, and not good peripheral vision. My work is as a paralegal, so this is not good. When I read manuscripts, it still goes blurry, after several pages, which for work -- is -- ? not good.

Would get tested. There is no reason to suffer with it, if you have it.

Wish you good luck and good health. all my best, Whittlesey NYC U.S.

[bowler in reply to Whittlesey]

hi

I was diagnosed 14 years ago aged 54 with GCA/PMR and had the biopsy done then. It's usual practice over here for diagnosis.

However as I was put on a high dose of steroids before the biopsy [ to stop any blindness ] it came back negative. Regardless I was told I did have GCA/PMR and I responded to treatment. I was told that it should burn itself out in 2 years !!! I'm still waiting, and still get frequent flare ups.

[Whittlesey in reply to bowler]

Understood. I'm sorry you're dealing with it for this long time. I have GCA, not sure about PMR. It's going on three years for the GCA. I'm down to 3mgs of medrol per day. Hoping to go lower, but I still get symptoms and my last blood test said the C Reactive Protein was at 15, which is considered high. I know they use different systems for measurement of the CRP, but this was high. So I will be using medrol for awhile. I am looking into some of the biologics, some of which inhibit the killer t cells, which I understand may be responsible for some of the symptoms of GCA. They also suppress the immune system, so it might be just a trial. I have a hard time dealing with high doses of medrol. I hope you feel better and you get resolution for your symptoms. best, Whittlesey

[Jane1175]

I started 2 weeks ago on 50mg going up 25mg every 3 weeks, it's to help to come off the prednisolone faster, I don't think I have any side effects from the azathioprine but I have so many from the steroids it would be hard to tell.take care.

[PMRpro Ambassador]

Methotrexate doesn't directly affect the PMR - it makes your body process the pred differently so the same effect is achieved with a lower dose. Azathioprine did achieve a similar effect in the single very small study that had been done before 2010. This is an extract from a review article which looked at all available studies:

"Oral and intramuscular methotrexate in a dosage of 10 mg per week had steroid-sparing effects and decreased relapse rates when added to prednisone therapy. Adding infliximab (Remicade) to prednisone showed no benefit in newly diagnosed patients with polymyalgia rheumatica. Azathioprine (Imuran) added to prednisolone modestly reduced the total cumulative steroid dose required, but the results were difficult to evaluate because of the small number of patients using this approach. Nonsteroidal anti-inflammatory drug monotherapy may relieve symptoms in a minority of patients with polymyalgia rheumatica, but showed no benefit over steroid monotherapy, and had a higher risk of adverse effects."

mtx has helped some patients I know - but there is some question as to whether the effects have been found in patients who did not actually have PMR but should have had a diagnosis of late onset RA - where mtx would work as it is the gold standard for RA. Aza is obviously being tried out by some rheumys but there is not yet any evidence it works to significantly reduce the total dose of pred over the course of the treatment.

Keyes comment is very interesting - it reflects something I have been saying for some time. I am involved with a research group as a patient rep and a research rheumy confirmed my belief that if you look there is often inflammation of the arteries supplying the arms and legs in PMR patients. The problem is: they don't look! I appreciate that the imaging required is expensive and not widely available but I presented originally with thigh and upper arm claudication as well as a cough and jaw claudication - all typical of GCA. I had had scalp pain briefly but it went away after about 3 weeks. I had enough trouble getting a diagnosis of PMR to stay on pred - despite my symptoms almost disappearing in 6 hours with 15mg pred. The consultant here in Italy agrees I almost certainly have a large vessel arteritis - just it hasn't reached the temporal artery but it is under control with just pred.

There is research being aimed for - but it is likely to be years before the results are available.

[bowler in reply to PMRpro]

All very interesting,PMRpro

I have thought hard about this and I am going to decline the Azothioprine.

Like I said I tried the Methotrexate and that put me in hospital overnight with chest pains, [ blue light ambulance ] and a few other side effects, I just felt awful on it. It seems that I get many of the side effect's from taking a new drug.

Even the last lot of antibiotic's for a urine infection [ Trimethroprim ] gave me terrible headaches, and I'm sure that it was those that caused my flare of GCA. or aggrivated it,? I also was prescribed Vasifem for a gyny problem, and they caused horendous headaches, which doesn't help with GCA.

Both the Trimethropim, and Vasigem's leaflet's state headaches as a side effect, some people may not get the headaches with them, however those with GCA dont need more headache's.

I will be 70 next year so I'm just going to take my chances with the steroid treatment, especially as I have stage 3 kidney disease to deal with, and high blood pressure, I just dont want to have anymore drugs.

Iv'e been on Pred for 14 years so another few years wont matter, depending on how long I live !!!!!!!!!!!!!!

[PMRpro Ambassador in reply to bowler]

You sound like my mother in law - she could have saved the pharmaceutical companies a fortune! If there was a rare side effect she'd develop it within days of a new medication. She never read the data sheet either so it was real!

However - how do you reduce your pred? Maybe you are simply trying too hard and in too big steps and my "dead slow and nearly stop" reduction scheme might work. I can't even drop 1mg from one week to the next and halves aren't an option as I cannot cut the tablets. I'm down to 5mg for the first time in 5 years. If I have to stay there for life that's fine by me. I will try a bit further - but I'm resting at the moment.

[bowler in reply to PMRpro]

I have learn't in the past not to look at the side effects on the leaflets, and only read them AFTER I get any side effects.

.

I have tried many tapers in the past, guided by my Rheumy, and of course if I saw a another Rheumy they would have different idea's as to how to taper.

I last saw a Rheumy 2 weeks ago [ a different one again ] with this recent flare. and she decided on 40 mgs. for 1 week, then taper by 2.5 mgs every 2 weeks. till I reach 5mgs. if only !!

I seem to remember being told that on a high dose you can taper at a higher rate till you reach 20mgs then slower after that ?

Like I said I have tried so many tapers, I'm beginning to lose the plot. And of course when I am on a higher dose it upsets my blood pressure, making it rise, which isn't good for the kidney's., it goe's on.

[PMRpro Ambassador in reply to bowler]

Quite! I think above 20mg the concept that you can reduce by not more than 10% of your current dose is probably OK for most people - but there are some who wobble even with that so 2.5mg steps down to 30 might work better. But the idea of 2.5mg every 2 weeks all the way to 5mg just makes me want to cry for you.

What about 2.5mg every 2 weeks to 30mg, then a week of alternating 30/27.5, week of 27.5, week of 27.5/25, week of 25, week 25/22.5, week of 22.5 and then 22.5/20? If you have a wobble at any point you can stop there a bit longer.

There is a definition of insanity: repeating the same action and expecting a different answer. If only doctors knew about that when they tell you reduce rapidly when it has failed before!

[bowler in reply to PMRpro]

I think you missread my dose,? it was 2.5 every 2 weeks not 25. I would have wobbled at that !! the dots dont show up very well do they ? perhaps we should stick to half/quarter

etc., in the written form, never did like decimals.

ha ha.

[PMRpro Ambassador in reply to bowler]

No bowler - I read it as she told you to reduce by 2.5mg every 2 weeks from 40mg (at the moment) down to 5mg - the error was I missed MY decimal point! It should have been:

"But the idea of 2.5mg every 2 weeks all the way to 5mg just makes me want to cry for you."

I've corrected it now - sorry pardon!

[bowler in reply to PMRpro]

Point taken [excuse the pun] I'm going to try your slower taper.

Like I said I wasn't good with decimals, and at my age I'm still in feet and inches, it's a nightmare.

[PMRpro Ambassador in reply to bowler]

I'm over 60 but have used decimals and metres since I went to grammar school - but I was a scientist even then. I lived in Germany for 10 years when the children were small, not Forces so they went to German school and I had to help with homework!

[AkselOlsen]

I tried Azatioprine but had to stop after only two weeks. First ten days I felt fine then I got stomachpain, vomiting and itching.

PMR pro I started with exactly the same symptoms as you along with typical PMR pain . I had a strange couph (only daytime), armclodication and three weeks scalppain and jaw claudication. After I started Prednisolon I never had any GCA symptoms.

Now I am on 8,75 mg since november. My new doctor suggested I could try Cellcept but I dont want to. He was ok with that and suggested I should stay on 8,75 mg until september. Feel very good about that! Now my body ( and I) might have some rest and time to get better. Been ill for five years now. After september I will reduce your way!

[PMRpro Ambassador in reply to AkselOlsen]

The Bristol group leave patients at 10mg for a year and find that reduces the rate of flares down to 1 in 5 instead of 3 in 5. I really believe that that, combined with the very slow creep down after that sort of level, would work for a lot of people who have problems. All we have to do now is convince a few more rheumys!!!

[mickt]

I was on aza it caused a rash on my legs so on metho now as steroid sparer.

[tomasina]

Hi Bowler,

I was put on Azathiaprine and had weekly liver function tests initially, within three weeks my GP phoned early one morning and said stop immediately as it was damaging my liver. Obviously, other people will differ in their reaction to the drug.

Good luck, but if you take it, please ensure you have regular blood tests.

Tomasina x

[bowler in reply to tomasina]

I think I will decline the Aza. and take my chances with just the Pred treatment, I tried the methotrexate and that did me no good, I had to have regular b/tests with that.

I also was put on statins once because of my cholesterol, they caused me terrible muscle pains, which isn't good with GCA/PMR especially PMR.

Thanks for your info.

[PMRpro Ambassador in reply to bowler]

Statins did the same to me. Yet they are shouting from the rooftops this week that statins don't cause such problems - do you know if your GP reported it using the yellow card system for adverse events? I know mine wasn't but that was here in Italy. I am sure that's why they don't believe the claims they are a risk. There was a query from an older gentleman on another forum this week about memory problems - he obviously hadn't known beforehand, because that is what they are saying: we develop the problems because we are expecting to.

[bowler in reply to PMRpro]

There was a discussion about statins this morning on radio 4. There was a complaint about the BMJ who were scaremongering about the side effects of them. And a Professor [ forgot his name ] said they are safe and should be given freely to those who are at risk of a heart attack or stroke.

My brother and sister had the same problem as me with muscle pains whilst taking them. They both live in the USA where they seem to be offered to everyone.

My other brother in Cornwall has no problems with them, so perhaps they may be a good thing for him, as he did have a triple heart bypass.

I have 2 sisters and 3 brothers, who all have high cholesterol, None of us are overweight and come from a "lean" family, so it must be in the genes.

I dont think my side effects were reported by the Dr.? and

who know's how many more side effects I would have got if I had stayed on them longer ?

[PMRpro Ambassador in reply to bowler]

That was the fuss I was meaning. I believe that that Professor is closely associated with the pharmaceutical companies - sure I saw it somewhere.

There are differences between the various statins, if you feel brave enough I suspect it is worth trying another but I asked my cardiologist and she said no, it was fine by her.

What makes me angry is that it has been shown - even from the figures from the original studies - that there is a benefit for men with high cholesterol even when they haven't yet had a cardiac event and that there is also a benefit for women who have already had a cardiac event (a heart attack) in preventing a second. But there is NO evidence at all that it reduces the risk for women who have not yet had one whether their cholesterol is raised or not. I asked the cardiologist - my particular problem doesn't count as a "cardiac event".

The new stuff about "it isn't cholesterol that is the problem at all" is just that, new although I have never believed it. It needs more studies to back it up for the cholesterol lobby. But they are finally accepting that a low fat diet doesn't do anything except make people fatter - it isn't fat alone that causes the problem either.

The trials are done on healthy people who aren't on other drugs - it is the mix of umpteen different drugs and their interactions that creates the risk. And look at the stuff we are handed like sweeties when we are put on pred - and most of them should only be prescribed once a need has been shown.

Bah!!!! OK, I'll calm down now

[Celtic PMRGCAuk volunteer]

Bowler

"I dont think my side effects were reported by the Dr.? and

who know's how many more side effects I would have got if I had stayed on them longer ?"

You can report adverse side effects of medication yourself by completing a yellow card at the pharmacy or online at yellowcard.gov.uk or by calling 0808 100 3352.

The MHRA (Medicines and Healthcare products Regulatory Agency) collects Yellow Card reports from people taking medicines, as well as from healthcare professionals such as doctors, pharmacists and nurses. These reports are used to identify side effects and other problems which might not have been known about before. If a new side effect is found, the MHRA will review the way that the medicine can be used, and the warnings that are given to people taking it.

[bowler in reply to Celtic]

Thanks for that.

I was thinking also about reporting the Trimethoprim [antibiotic ] The headaches from that were horendous, [ although the leaflet did state headaches as a side effect ] which probably didn't help because of my GCA , and a combination of the Pred. ? AND the Vagifem for my Gyny problem was the same, really bad headaches, again not good for GCA sufferer's, and one of the main side effects listed for Vagifem is headaches.!

I went on a high dose of pred after taking both the above, BUT thinking about it, was it the headaches of the medication, and not a flare of GCA ??

as my ESR was at it lowest at only 8 !!!! but as we all know we can still have a flare with a low ESR, all gets confusing.

I only wish I had mentioned those headaches from them meds. to my Rheumy. when I saw him 2 weeks ago. I just didn't think about it.

Did that make sense ?

[Celtic PMRGCAuk volunteer]

Bowler - you had a double whammy of meds with the headache side effect listed didn't you, so not surprising if the headaches were the result of those meds rather than a flare in GCA, although it's possible that even your infection at the time may have contributed to an actual flare! Hope you don't find yourself in a position where you have to take them again but always worth checking with the GP or pharmacist as to what other meds might be available without the potential to cause headache.