Other drugs instead of Pred

John

I don't have personal experience of Azathioprine so cannot help out here, but on our website, see the 'sticky; at the beginning of PMR & GCA on this site, you can read up on current research and trials on our website page.

There is also another forum where you could ask the question, that forum is for PMR & GCA people only and perhaps one of those people has been on it.

I won't type it properly as otherwise you won't get it. pmrandgca full stop forumup full stop co fullstop uk.

Do pay a visit and ask the question.

no experiance of using these medications sounds horrendous hope it gets sorted carolk

John, go to Arthritis Research and read up on

What is azathioprine?

Azathioprine is a type of drug known as a disease-modifying anti-rheumatic drug (DMARD). These drugs have the effect of dampening down the underlying disease process, rather than simply treating symptoms. Azathioprine reduces the activity of your immune system (the body’s own defence system), so it’s always used with care.

You need to read the full article. As PMR is an auto-immune illness it has probably been used at sometime. Ask the question from your Consultant once you have read up on it.

Thanks for the responses, they are much appreciated. I will continue to search for users I need to know that these drugs won't kill me

John

Hi John - I'm really sorry to hear of your experiences. I can empathise a little bit - I have spent this summer recovering from a series of bad reactions to medications and after 7 months can still only walk into the village and back with crutches. It's only a few hundred yards and in early March I was still skiing!! Not amused! Even with all the background reading in the world you won't "know that these drugs won't kill me" as you put it. There are very unusual and rarely seen reactions - I suffered 2 of them this spring. One has made what was a mild atrial fibrillation so severe I need a small suitcase for the meds!!

However - I would be asking my consultant for some back-up to his reasoning for wanting you to use azathioprine at a pred dose of 5mg. There are - as far as I can find anyway - no extensive trials of using the DMARDs in PMR and those that have been done are inconclusive. No advantage was seen for MTX until you have been taking the drug for a year and no benefit is documented for AZA - I repeat, that I can find, there may be some. Not even abstracts from papers appear on a search. 5mg is a very low dose anyway - although I realise there must be some concern if they are suggesting it is too much. Mind you - you were put on MTX before these latest problems. I believe that PMR patients who benefit from these DMARDs possibly didn't have PMR, they were misdiagnosed and actually had late onset rheumatoid arthritis (LORA) - about 1 in 6 patients intially dx'd with PMR "go on" to develop LORA according to the literature. They could well benefit from them.

If you want testimonials about AZA you would be far better asking a rheumatoid arthritis community where it is used quite commonly. If you google "rawarrior" you will get links to a site run by a young woman in the USA who has rheumatoid arthritis. She has well researched and sound information about all aspects of RA including all the drugs used in RA together with comments from many patients using the drugs themselves. Kelly also seems very helpful if people contact her with questions. There is also a RA forum here.

In the great scheme of things 3 years isn't that long to have had PMR - or is your doctor one who believes it goes away after 2 years? On the other forum there are loads of us who have had it for more than 5 years, a few have just recently got off their steroids after that length of time, with no other drugs added in. The literature says about 50% of patients need treatment for between 2 and 6 years, 25% for even longer, sometimes for life. Noone here in northern Italy seems greatly concerned at the dose or the length of time I've been on pred. After this rubbish summer I'm back up to 15mg to deal with the flare that accompanied all the other shenanigans. And those I have asked here see no role for MTX or AZA. They are steroid sparers, they eventually make a lower dose of pred more effective and, as far as anyone knows, don't have any effect on the PMR itself, nor do they seem to have any effect on the underlying autoimmune process that causes the PMR symptoms. PMR isn't the disease, it is the description, in latin, of the symptoms: many painful muscles.

Good luck with your search,

Eileen

Hi Eileen

Thanks so much for your response, it is really appreciated. I share your feelings about these 'new' drugs, but my rheumy has said that I need to get off of pred, I don't know why he is so keen but I have some time before I see him to start the new treatment. Sorry to hear that you have had such a bad reaction, I know that it is rare but when it happens it is serious and trying to get the drs to understand can be difficult. I wish you a speedy recovery and hope you will be sking again soon. Regarding is it or is it not PMR, it seems to me that so little is known about it that how can I be sure, the diagnosis is for PMR & GCA but I am rapidly losing faith in the hospital consultants. My GP inspires confidence and I will chat to her re the AZA.

Thanks again Eileen, take care and get well soon.

regards

John

Mayfly

I would want a lot of facts about any drug other than Pred with GCA.I had GCA (now in remission after 5 years and off pred) and was offered methotextrate as a steroid sparing agents, but as it did not cure I refused, but that was a personal decision.

As far as I understand it nothing cures either GCA or PMR.

Mayfly have you had echocardiogram or chest x-ray as you have had GCA for over two years. Read the BSR Guidelines on Diagnosis and Treatment of GCA.And ask the questions.

I've done a bit more reading John.

AZA is not a "new" drug, far from it. It is almost as old as pred, having been developed in 1957 and having been in use for more than 50 years. So there are plenty of opportunities to get info from other users. What is relatively new is the idea of its use in PMR and GCA to reduce the pred dose. It does seem to be successful in some other diseases as a steroid sparer but the few studies where it has been used in PMR were inconclusive. It is used in a few vasculitises (inflammation of blood vessels) - there are other forms of vasculitis which are far more unpleasant and life-threatening than GCA and which develop in much younger patients so reduction of longterm effects of steroids is important.

However anyone wants to look at it, it is a heavy-weight drug with potential nasty side-effects - nothing new there then! If I were you the item that would concern me most is that AZA, too, is associated with acute pancreatitis. You've already been there - and I bet a return doesn't appeal!

I found a single reference to the use of AZA in vasculitis instead of another even nastier drug. One small study showed that AZA worked as well as the other to reduce the dose of pred needed to keep the disease under control - but the bottom line was that there is what is called "silver level" evidence that it is effective in this particular case but that at 18 months it was too short to assess longerterm downsides. And I quote: "Azathioprine is effective for some patients with cutaneous LE and chronic cutaneous LV, but it should be reserved for patients with severe disease in whom more conventional treatment fails"

I would like my doctor to show me very good reasons for trying it including a justification of your belonging to a group that fits this description (severe disease, failing other treatment). You are already at a lowish pred dose after 3 years - I would want him to provide justification for adding this in when you have reduced successfully below 10mg already. You are obviously NOT resistant to pred, you are NOT stuck on a high dose. Have you a severe case of something? Have you been told that? If so and if not, why not?

He'll probably have a paddy at non-medics asking such questions - but I have gained a distinct impression that there are medics out there trying out various drugs that work elsewhere to see if they work in PMR and GCA. All well and good. But if I am a respondent in a clinical trial I am offered comprehensive information about the background and am monitored much more carefully than normal (or should be). It is called informed consent and very careful documentation is needed to comply with the law in case anything goes wrong and to abort the trial if it is apparent it isn't working the way they thought. Anecdotal evidence is not a good reason for playing about in the chemistry lab of pharmaceuticals with drugs that haven't been approved for the use they are being put to - at least not without a safety net. And I want to know if I am being an experimental rat - I've nothing against it, I'm a scientist, but I darn well want to be told. That is only fair and polite.

That's my opinion, for what it is worth. Do keep us informed.

Eileen

John

I meant to add, where do you live? You can send a pm via the 'messages' with the information. I don't want to discuss the matter in an open forum.

Hi Eileen,

Thank you once again for your efforts. You are indeed percective when you mention the possibility of another condition. When I was leaving hospital following the second bout of pancreatitis it was mentioned as an afterthought that my pneumonia was improving. I was unaware that I had it. It was later mentioned by my GP that I had had a serious chest infection and that recovery would take some time. It makes me wonder what else I don't know. I will be seeking answers from my GP. Like you I found conection between AZA and pancreatitis. It would take a very strong case to make me take that chance.

Thank you again for your help it is really appreciated.

Regards

John