PMR Treatments

[Cherrill]

Hello everyone,

I'm due to start using aziathropine as a bone sparing agent after 3 years on prednisolone for pmr. Anyone out there with experience of this treatment? thanks!

[PMRpro Ambassador]

Cheryl - are you sure about "BONE sparing"? Some doctors think azathioprine can work as a PRED sparing agent - i.e. they give you it alongside pred hoping you will be able to reduce the pred dose you need to get the same result. Sometimes they use methotrexate in the same way. The evidence is very mixed for either: one study says it works, one study says it doesn't, other don't know.

I've been on pred for 5 years now, noone has ever suggested it to me and the local rheumy here says methotrexate at least has no place in PMR. I suppose if the azathioprine or methotrexate doesn't give you any side-effects and you are able to reduce the pred dose a fair amount it is OK. I can't see any point if you get side effects from the second immunosuppressant as well as pred.

I have finally managed to get my pred dose right down by reducing in very tiny steps: 1mg spread over several weeks, 1mg at a time overnight just didn't work so I take the new dose for 1 day, old for 7, new dose 1 day, old for 6 and so n until I get to alternate days old/new. Then I increase the number of days at the new dose in a similar way. It worked for me and is working for quite a few others. You avoid steroid withdrawal pain - which is too often thought to be a flare and the dose put back up.

[Cherrill in reply to PMRpro]

I've developed steriod related osteoporosis of the spine, despite using ibandronic acid plus adcalD3 over a period of 3 years due to pmr. Started on very high dose of steroid reducing gradually. Saw rheumatologist 6 months ago, who insisted I MUST come off preds and I have taken my last one today even though I am in a lot of pain. Seeing rheumatologist 13 August. Hes put me on denosumab injections for bones and wants me to try aziathropine. Hate all these drugs!!

[PMRpro Ambassador in reply to Cherrill]

If you have PMR I don't know how just azathioprine will help - otherwise they'd use it more often. It is a drug used for RA. I also don't quite see why he can't leave you on a lower dose of pred for the PMR whilst you are being given denosumab - I know a few ladies who have been on both together and the denosumab worked OK.

I do hope something works for you though - I can't imagine going back to where I was pre-pred. I had 5 years of PMR with no pred, most of the time not too bad but when it hit good and proper I was housebound and in constant pain. 6 months of that was more than enough!

[Cherrill in reply to PMRpro]

I CANNOT use steroids in future because I have osteoporosis of the spine caused by their use! The rheumatologist recommended the use of azathioprine. What I WANT TO KNOW is what anyone can tell me about this drug and its effects.

[PMRpro Ambassador in reply to Cherrill]

Since this is a PMR/GCA site it is not very likely there will be many people who can answer the question - that is what I said: it isn't a drug that is normally used at all in PMR. A few people may have been put on it together with pred as a pred sparer but it is fairly unlikely anyone has been on it alone to manage PMR pain and stiffness. You will find more info about aza on a rheumatoid arthritis forum rather than here.

And what I also said was that other ladies have taken pred alongside denosumab - the pred works for the PMR, the denosumab rebuilds the bone that is low in density due to the previous use of pred.

[Badgergirl]

My rheumatologist wants to put me on MMF as a steroid sparer. I wonder if anyone has experience of this for PMR. My GP said azothiaprine would be his choice

[Hidden]

That's interesting Badgergirl. MMF is used widely to treat vasculitis and Lupus and is well tolerated.

I don't have a definitive diagnosis but have been taking Pred for over a year now. I have tried methotrexate, which worked fairly well but wore off after 5 days and have recently taken MMF. The methotrexate definitely controlled my joint and muscle pain better than the MMF. I found the MMF great for my headaches and jaw pain though.

I think there is at least 1 other person on this forum taking MMF so maybe it's worth posting a question. Also if you google MMF and PMR there are a few papers mentioning very small trials.

Good luck, I know you have been suffering recently.

[Badgergirl in reply to Hidden]

Personally, I don't trust this approach by my rheumatologist as she is the one who said PMR isn't painful. While I would give MMF a try alongside pred to reduce the dose I must decline to use it instead of

[bowler]

Hi

I was recently put on Azathioprine as a steroid sparing agent. [ I have GCA and have been on steroids for 14 years] unfortunately like Methotrexate I couldn't tolerate it. I was only on the Aza, for 3 weeks and had awful side effects. I suggest you read the leaflet which comes with the Aza. as everyone reacts differently to drugs. I dont think Aza. is prescribed for the bones ?

[Jane1175]

Hi Cherill. I am on azathroprine to help me come off my steroids as I was on 60mg of prednisolone for pmr and gca, they had to do a blood test to see if I could take it and they keep a record of my blood (esr, CPR , liver etc) I've been on it a while and I'm going to ask if I need to stay on it as I'm down to 7.5mg pred, and my doctor said I will still be on azathroprine when I'm off pred. The side effects are horrible, as steroids gives yo moon face , weight gain, mood swings etc Azathroprine has made my hair so brittle and it broke off so much I have had to have it cut very short and buy a wig, everybody has always said my hair was my best feature and I'm so depressed as with my hair that has gone very brittle and gone from a size 10 to a 20 , moon face , hair on face I feel very old, also azathroprine makes me feel very sick and very tired, I hate being on these drugs.

[Limoqueen in reply to Jane1175]

Hi all

My rhumey started me on Azathioprine 3 weeks ago i have PMR/GCA along with a couple of other medical conditions.I'm already at my wits end since starting to take the aza,my overall pain is ten times worse now than it was when i was just on the steroids.Every little bit of me hurts now( i'd go so far as to say that i hurt in bits of my body that i did'nt know i had.HA HA)Tried methotrexate and that affected my lungs so now i only have 61% lung function,not sure how much longer i can go on with this pain,i'm a real prisoner in my own home now since being on aza it's as much as i can do to get to and from the the bathroom.I thought that the PMR pain was bad but this is ridiculous, think when i see my GP next week,if i can put up with this extra pain that long that i will be telling him i'm not taking it anymore,i'm trying to stick it out till next week to see if this side effect does improve once and if my body gets used to the Aza.Thank you all for listening to me moan,its true a problem shared is a problem halved.

[PMRpro Ambassador in reply to Limoqueen]

Has your consultant considered leflunomide for the PMR? It is used by quite a few rheumys alongside pred and in a small-scale trial in Southend it showed great promise for patients who needed to get off pred because of serious problems that were pred-related - 21 out of 23 patients went into remission.

Dasgupta and his group in Southend would probably advise. I know someone at the John Radcliffe is using leflunomide for a difficult patient but I don't know which rheumy it is. I just know the patient is doing well on it.

[Badgergirl]

Limoqueen, I am surprised you have been taken off the steroids completely.Is this because of other medical conditions? It is my understanding that azathioprine would normally be given alongside to keep the pred dose low. It is no wonder you are in so much pain. Only the steroids would sufficiently control the inflammation.

None of us should have to put up with so much pain just because the doctors are in such a rush to get us off steroids. Let us know what your GP says next week. Good luck, badgergirl

[Limoqueen in reply to Badgergirl]

Hi

Sorry did i make it sound as though i was of the steroids and only on the azathioprine did'nt mean to,as i'm still on 15mg pred a day,i was less painfull when i was on just the pred.So in my mind i think it's the aza thats making me more painful.Not to worry will wait and see what my GP says on Wednesday (if i can bear it that long). I totally agree that none of us should have to put up with constant pain like we do,if i was given three wishes i'd only need to use one,and that would be to give ALL rhumey's PMR/GCA for a three month period,and then see what they have to say about it then,bet they'd be swallowing the pred like smarties.

[Badgergirl in reply to Limoqueen]

Haha! I reckon they would only put up with it for one day before they started swallowing the pred.

I too have had enough of the pain. Bed is the only place I can cope with. Hope you feel better soon. Badgergirl

[Limoqueen in reply to Badgergirl]

My hubby bought me a sidhil electric adjustable bed( like a hospital bed) and i've got to say it has been a god send,i'd been so much better as in pain and stiffness wise since having the bed,but now with the aza even the bed does'nt help much,it was great cause you can change the position of your body without having to struggle to do so and because you could move your body about as much as you want then you don't get so stiff. Do you ever feel as though your 90 years old,my poor old mum passed away 3 years ago at the age of 83 and i've got to say she was more mobile than i am up until her last 3 weeks.Its a s*** illness.I best finish this or your going to be suffering from depression listening to me prattling on.And one day maybe some one will grant us all that one wish HA HA.

[Badgergirl in reply to Limoqueen]

Your bed sounds great. My me!ory mattress I'd wonderful but I have to sleep propped up as lying down hurts too much.

Yup, I feel 90. My 84 year old Mum is more mobile than me even with her osteoarthritis!

Oh well, must try and sleep now. Let's hope tomorrow is a better day.

[Limoqueen in reply to Badgergirl]

I have to sleep sitting up to,but with my bed i can change my angle up or down a bit .i live in hope every day that tomorrow will be a better or even a pain free day.your right its late and i should go to bed to,the thought of the stairs is a bit of a nightmare but hey ho thats life. Night night.

[Runrig01]

I have had PMR for 2 yr and 9 month and have been taking steroids for 1.5 yr. my Rheumy started me on Axathioprine in a Feb to help with reducing Pred. I had been stuck between 8-10 mgs, since adding Aza I have managed to get down to 4.5mgs. I am fortunate as I have had no side effects, although my blood tests for liver are rising now and causing concern. Hope this helps. Runrig x

[Badgergirl in reply to Runrig01]

That is very positive!

[Hidden]

I read somewhere, that a good doctor will get you off steroids as quickly as possible.

My Dermatologist wanted me to go on Azathioprine as a steroid sparing drug. I couldn't because of my blood results, so I am on Methotrexate and tapering the Pred. I've been on the Pred for something over 2 years for Bullous/Cicatricial Pemphigoid. Last September it looked as though I had PMR. GP said yes and Dermatologist said no. He thought it was steroid withdrawal. In March, the Dermatologist decided I do have PMR after all! I am down to 2mg/day but am developing blisters again.

My liver is beginning to object, so I don't know where we go from here.

I haven't had a lot of the problems with MTX that some people seem to have but, on the instructions of my Derm, I take my folic acid at the same time as the MTX after I started having adverse reactions when taking the MTX on its own, with the Folic acid the following day [usual dosage]

Now, all my follow up appointments are late. I hate having to constantly chase for appointments.

[PMRpro Ambassador in reply to Hidden]

"I read somewhere, that a good doctor will get you off steroids as quickly as possible."

Yes - where pred is being used to reduce inflammation that has a short-lived cause such as in chest infections and once the infection has cleared so will the swollen airways.

PMR and GCA are different. GCA needs high enough pred for long enough to shrink the giant cells causing the problem and, it is hoped, until they have gone altogether.

PMR is only the name for the symptoms - many painful muscles. They are caused by an underlying autoimmune disorder that causes your immune system to attack your body as being foreign. As long as that disorder is active it is causing the damage that leads to the inflammation which causes the symptoms. As long as that disorder is active you need pred to manage the symptoms, nothing else can replace the pred. "Steroid sparers" may allow you to manage with a lower dose - but it isn't certain, the "proof" is mixed and they also have side-effects.

A good doctor in PMR will give a high enough dose to control the symptoms and reduce the inflammation at the beginning. Then he will slowly reduce the dose you take until you find the lowest dose that manages the symptoms. The start in the UK is usually 15mg (in Germany it is 25mg), the hope is that you will manage to get down to 10mg relatively easily. Then you reduce very slowly to a lower dose - if you are lucky. In Bristol they keep you at 10mg for at least a year before reducing any further. They still get flares in 1 in 5 patients. Some of us think it would be fewer if they reduced in the way I and others recommend.

Is the MTX to reduce the pred for the PMR? I know people who have taken pred for bullous pemphigoid and other skin autoimmune problems for many years at about 10mg - what is the desperation to get you off pred altogether? There are side effects even with low doses of pred - but if the benefits outweigh them pred should be used. After all, there are other drugs to deal with diabetes and osteoporosis. Not ideal maybe, but still better than suffering the blistering/pain on a permanent basis.

[Hidden in reply to PMRpro]

The MTX is for the Cicatricial Pemphigoid, the PMR is an added bonus that isn't really being addressed

I am waiting for appointments, which aren't forthcoming

[Hidden]

PS! I have been taking the MTX since the beginning of December 2013

[Cherrill]

Hello to Springful and everyone! I now have had PMR for 3 and a half years. Treated with tapering dose if steroids - steroid free fir 7 weeks! Rheumy has given me Methotrexate despite having negative tesrs for R.A. Taken meth for 7 weeks and in considerable pain with ESR level of 62. Must wait 3 months for drug to take effect. Has anyone with PMR had any benefit frim this cytotoxic drug?

[PMRpro Ambassador in reply to Cherrill]

Sorry about the delay in replying - I have only just received a notification!

A lot of doctors use MTX as what is called a "steroid sparer", in the hope you will get the same effect with a lower dose of pred. There were 3 studies published a few years ago, all with different conclusions: one said it helped, one said it didn't, one said they didn't know. In the meantime it has been accepted by the top experts that it doesn't help enough to justify the extra side effects.

In PMR it never works alone, it is used in conjunction with pred and it is hoped the effect will be potentiated. If a patient benefits from MTX alone then they probably didn't have PMR in the first place but more likely one of the other inflammatory arthritides, possibly late or elderly onset RA. There are patients who have been able to reduce their pred dose initially but at lower doses have suffered a major flare of symptoms, sometimes even developing GCA, and then being forced back to much higher pred doses.

If your ESR continues to rise then I would want to see another rheumy because if it is PMR then MTX is unlikely to achieve anything positive but you may end up in a major flare - it sounds as if you were well on the way a month ago.