Never being able to reduce the pred??

Thank you Dave, my Rheumy has "threatened" me with MXT, if I don`t lower quick enough.....I don`t tolerate medication very well, and my sister who does, recently took just two tablets...one each week of MXT and was very ill...it affected her liver very much (non drinker!)

It`s nice to hear of people being helped with other meds....but I`m afraid I will have to plod on....and hopefully find the level that eases the pain...and then do very slow reduction as Eileen tells us, and hope for the best!   Thanks for your replies everyone....

 

As far as it is known MTX doesn't have an effect on the PMR itself - it changes the way the body metabolises pred so that a lower dose achieves the same result.

However - PMR is just the name given to the symptoms and it can have a lot of different causes. It would maybe be better if the PMR we talk about here were to be called "pred-responsive PMR". Not all PMR does respond to pred - and then it is due to something else. One very common cause is another inflammatory arthritis - maybe psoriatric arthritis or late onset RA. These will respond better to a DMARD and MTX is the first line approach for them. It is also possible to have both PMR and another arthritis at the same time. In those cases you might find that MTX makes a positive difference. Or the immune system is doing something else - and MTX damps it down.

There are so many different possibilites and no real way of identifying what is going on except trial and error. The attitude in the past has been to reserve MTX until a later stage, until repeated problems are had with reducing pred or where the patient is stuck at a high dose. It is one thing adding in MTX when a patient is just on pred - but when they are taking multiple medications for other problems the fewer additional chemicals that are introduced the better because the interactions are not known. Anecdotal evidence from the forums does show that approaching the reduction in a very slow manner - slow in terms of the size of step not necessarily time - does achieve a lot without more drugs. There remain people for whom even that doesn't work - but they do seem to be in a minority.

Hi Eileen,

Yes – I like your thoughts and explanation – however, I do see some quite positive MTX results in quite a few of the studies I’ve read from your Italian “Buddies” ( !!) Cimmino, Gerli, Caporali and others from the Italian Society for Rheumatology, Università di Genova, Italy – right at your back door !

They conclude that using MTX has allowed the use of less prednisone over relatively short periods (1 year) to control PMR still providing the desired results and in some research, the mixture of prednisone and MTX has been linked to shorter prednisone treatment and steroid sparing and the reduction of the risk for steroid related toxicity.

Related to the long term dosage of MTX, amongst many other items, research demonstrated that patients showed less residual inflammation and it also allowed bone sparing for those at the risk of osteoporosis related issues.

I have a feeling that there is just a lack of communication between all the medical professionals across the world that should be more caring and should be tying together all the PMR related research and following data from sites like Patient and the associated forums and groups to increase their assessment of the disease. There’s such a lot of information out there, but no one wants to spend the time or energy to put it in one ‘bucket’ and come up with some good, realistic answers.

Dave

I may be wrong, but if my memory serves me right I think you will find that that was one of the 3 studies I mentioned. You also mention the "short period" and that is the crux. Other studies found that over longer periods there was very little difference in the amount of pred used - and that is something that can only be done retrospectively after considerable time. Since very few patients have their disease go into remission in a year it is the other time spans that become of interest. Two ladies I know were put on MTX and in the first few months apparently did well, being able to reduce their dose of pred considerably. Both then experienced major flares and one even developed GCA which sent them back to the original dose or even higher to control the inflammation.

The autoimmune component of PMR probably cycles, waxing and waning over time, but there is no way of measuring it. Put a patient on MTX at a point that coincides with a waning of the activity and it will appear that the MTX is making a difference when in fact the patient would probably have been able to reduce fairly well anyway. Then it increases in activity, the current dose of pred is no longer adequate to manage the resultant inflammation and the MTX does nothing - result: flare. There is no way of doing controlled studies as the patients are all so different in both the manifestation of the disease and their response to pred. 

I think you might be surprised at just how much "putting it all in one pot" and communication is already going on and how much patients are included. The working groups are international and they meet on a regular basis and there are patients who are contributing members. There are review articles that have looked at all such studies and all have come to the conclusion that while in isolated cases MTX may have a role to play there is no evidence for it to be universally used. If there were they'd use it rather than pred - in the UK it is the first line approach for RA so it would be logical to use it there at least. But in the case of GCA it does nothing - and it is unethical to use it (or anything else) instead of pred because of the serious risk of loss of vision. It is becoming clearer that many patients have PMR symptoms only that are actually due to GCA in places other than the temporal artery, there is a greater overlap than was first thought. GCA can affect arteries all over the body - and doesn't have to get to the cranial arteries to cause a lot of pain and disability. The invention of imaging techniques over the last 10 years has made big advances in that sense - but they remain expensive and less accessible outside research for various reasons, not least the lack of funding for research of this sort.

PMR is just one of a very wide range of rheumatic and autoimmune disorders - and while as a patient myself I appreciate how disabling and painful it can be for us all, if you are going to suffer from a vasculitis then I think PMR is the one of the better ones to have, GCA is probably next in line. And before you all come down on me like a ton of bricks I recommend you go to VacullitisUK's forum and read some of the stories there, many of them involving people in their teens and 20s with little hope of a normal life in the long term. Sometimes, given what they deal with day after day, I feel it is no wonder that rheumatologists are a bit dismissive of patients with PMR. Whether that is a right attitude is another matter of course.

Eileen,

I appreciate the great information. You really encourage me to think that the “pros” really care about us.

Yes – the timespan is such an important criteria that is not clearly discussed in the paper – and as you say, few of us (from what I hear on the Forum) seem to have a short time to remission.

I’m hoping that my adrenal system doesn’t believe in cycles and is just saying “thank you” for the MTX (!!) and that my version of vasculitis is indeed the ‘nicest’ one to have.

Dave

Evidently men react differently to women with PMR.  Why this should be I don't know, so you really may be one of the lucky ones.

I can't remember reading of one man on this forum that has had PMR over 3 or 4 years.

Constance

Probably the "H" word....hormones like everything else....unfortunately!!

Probably right Linda - though I do know of one lady who had a male friend who was on pred for 11 years. He did eventually get off it though and the PMR didn't return.

He really did listen to you then, and did slow, dead, slow!