PMR and non steroids treatments

His weakness could well be due to the steroids. - but to be honest, at 88 and after having PMR it is hardly surprising! At 60 with a serious flare of PMR behind me plus I had been on crutches for 9 months due to an inflamed achilles tendon - I seriously struggled with even a few steps and a flight of stairs defeated me on many occasions. The difficulty your father has with slopes may be associated with the ruptured achilles tendons because that affected my ability to walk up hills - and I was told I must NOT do so whilst the inflammation was still present. It was due, by the way, to being put on a quinolone antibiotic whilst on pred. It is a known but unusual side effect and noone with a history of pred usage should be put on a quinolone and this is particularly so if you were on Medrol (methyl prednisolone). It is only relatively recently that slopes have become easier - nearly 2 years with a daily half hour brisk walk!

There are no real alternative treatments for PMR. Pred is the gold standard therapy and if it is just PMR works well. Did the GP suspect he was developing GCA when he had him on 60mg - there is no necessity for a dose that high in PMR, 15-20mg/day is the recommended starting dose. This is not least because only PMR responds so well to a moderate dose like this - other things (such as other inflammatory arthritides) may respond partially to higher doses and that confuses the diagnosis. About 1 in 6 patients initially diagnosed with PMR have their diagnosis changed at some later point, mostly to another form of inflammatory arthritis and most often to LORA (late onset RA).

Methotrexate is NOT a treatment for PMR. The role of MTX in PMR is that it changes the way the body metabolises pred and is thought by some to mean you get the same effect from a lower dose of pred - it is classified as a "steroid-sparer", there are one or two other drugs used in the same way. All are normally used in rheumatoid arthritis (RA) but none have really shown a reliable effect. Three studies were carried out in the past with MTX: one showed it helped, one showed it didn't, one didn't come to a conclusion. I know people who have been put onto MTX who were initially able to reduce their dose of pred considerably but then had major flares, one developing GCA, and had to go back to 15mg and even above. They still wonder whether they would have had the flares had they been on a slightly higher dose of pred because MTX can never replace the pred and only reduces the dose by a small amount, if it does at all. And it has some quite unpleasant side effects for some people, know as the "MTX hangover".

It does appear that in some cases where MTX, azathioprine and other RA drugs appear to work in lowering the pred dose, that it wasn't PMR but another inflammatory arthritis - it is that dramatic response to a moderate dose of pred that is the sign. When that isn't there the question has to be "Is it PMR?"

One drug that showed promise in a pilot study with 23 PMR problem patients was leflunomide - 22 of the 23 achieved remission of their PMR. It is used on occasions where there is a real need to get the patient off pred for various reasons but if it is going to demonstrate side effects then they are dramatic and can be life-threatening. 

If I were your father (or is it you who is concerned?) I'd accept the current status quo, especially if he can reduce the dose again somewhat using a slow reduction - there is one on the forum that has worked very well for a lot of people. At his age it is possible he may need a low dose for the rest of his life but it isn't going to do much damage. Once a patient is down to about 8mg they are in the "physiological range", the amount the body would make anyway. 

And for going out - get a mobility scooter. I had decided that if things didn't improve a lot within a few months I was getting one. That was at 60. Occasionally when I look at a rather more demanding walk up slopes I wish I had done so! There is a very small folding one that will fit in any car boot, even a Smartx2!

Hello, I'm sorry to hear your father is going through a bad patch but pleased to read that he has you who is obviously looking out for his welfare. Unfortunately I am not medically trained so have no advise or information to offer but I see that Eileen has contributed and I along with other users of this site value her words greatly. Her replies are always either research based or from personal experience. I am only 53 years old but I attempt to go for a walk each day, very often on the flat and I am happy if my heart rate is only just increased. I have also experienced a flare up and simply increased my prednisone and will stay on the higher dose for at least a month after all the flare up symtoms have died completely down.

as for methotrexate, this is a drug that I hear a lot about and some rheumatologists are now prescribing this as a " normal" medication for PMR. At what point rheumatologists decided that this drug should be prescribed I have no idea as it is not put forward as a recommended drug regimen for PMR. so on those grounds I am going to steer as clear away from it for as long as I can and will fight tooth and nail if for any reason my rheumatologist decides that this drug should be my next step.

there is no set recovery rate for PMR, infact if you read some medical information sheets you would be lead to believe that all of us will be free from this condition within 2 years and most of us will never see a return if it, when in reality the complete opposite is more likely. I believe that drs are prescribing methotrexate because they are attempting to " cure" us within this 2 year timeline. Well, I'm not a clinician but even I know that PMR is an autoimmune inflammatory condition that is self limiting. However, until they find a cure, the drugs we take simply relieve the inflamation and do not speed up the reduction of the inflamation. Therefore, the inflamation will due down as and when it's ready and we simply have yo put up with it and all its twists and turns even if we smile through gritted teeth! All the best for your father. Christina.

I  was on MTX for 2 months to help get my Pred. down.  My SED rate went up 25 pts. and I got all the side effects, felt sick, trouble eating, very thinning of hair and all for nothing. Along with other not doing enough I have now been accepted to John's Hopkins here in the USA and hope I get more answers and better guidance.  I have had PMR for 2 1/2 years and my numbers have always been out of control.  I can't recommend MTX.  Good luck to your father.

I was put on methotrexate following a problem with being unable to reduce the pred dose from 17.5mg.  That particular autumn I was also query an inflammatory arthritis as I had been having joint pain, so I decided to go ahead with it.  I was lucky in that I had only minor side-effects to begin with.

It allowed me to drop to 2.5mg pred in a year, which was not the victory it seems as the much lower dose allowed a GCA flare-up of gigantic proportions.  Back up to 40mg pred and very unhappy.  For reasons known only to PMR, GCA and Pred, this time I had no trouble reducing the dose over the following few months, but what did become obvious was that I was now gaining no benefit from the MTX, and I also began having bad side effects.  It was discontinued and  I continued reducing Pred without any other help until my current dose of 5mg where I am staying.

It also became clear that I was now free of joint pain, but whether that was the pred, the MTX, or something in the water no one knows.  As of this week I amd now query inflammatory arthritis again, but I won't be taking MTX! 

My own feeling is that the MTX saw off the joint problems which were the cause of me being unable to reduce at the time, and once they had gone it became a useless addition.

PMR attacked my legs in the first instance and has never let go.  I walk daily (on the flat) to keep them moving but have had very limited mobility recently due to another condition entirely. I also have widespread tendonitis, including Achilles tendons, and I do stretches daily to keep me moving as much as possible.  I can't go up or down easily, either!