Methotrexate . . . What is that?

Just to reply to your question "I thought this was the drug for RA?" - yes, it is the "gold standard" starter medication for RA but it has been tried in PMR because it changes the way your body processes pred and can mean you get the same effect with a lower dose of pred and that, theoretically, reduces the side effects long term. There is disagreement, one study says it works, one doesn't know and one says it doesn't work. The most recent recommendations say there is no evidence supporting its use. Sometimes it allows people to reduce their pred for a while and then they have a flare - and have to go back to a higher dose again. For some people there are few or no side-effects, for others it is less pleasant. As usual - everyone is a bit different! If it makes a noticeable difference fair enough - if it doesn't it's just another set of potential side-effects.

Hi Elieen, thanks for all that a very interesting response . . .

Body reaction to change . . . . . hits the nail on the head. I was stuck at 17.5 and had not found this site at the time but had decided that my body did not want the drop and was comfortable on the current intake as the Dr was getting more and more unhappy with staying at that level and said I would have to see a consultant if a drop did not occur. Not wanting to see a Rhumey I decided to 'fool my body' and set about a yo-yo plan with an underlying downward movement. Now I know this is frowned on but it worked and worked well as I dropped down to 10 in a couple of months. The intention was to rest up a while at 10 then push to 7.5 and then onto 5.

But a load of problems, pressure and a flare up of knee problems meant a quick increase in the Prednisolone. 

Now nine months latter I'm still stuck in the 10s. Got the consultant saying it's going to be MTX as I have not reduced and I'm in that de javu place. . . . . got to say I'm sorely tempted to go for another yo-yo (I can hear a chorus of no's arising) buts it drop quick or MTX and I really,really don't want that.

 

Depends what you mean by yoyo-ing so I'm not saying no without further details! You could say the "dead slow and nearly stop" reduction programme I - and many others - use is yoyo-ing, but it is on a very short string! 1mg at a time and I take as long as it needs. I start at the beginning, others start at 1 day new, 4 days old. Here it is again for convenience:

A group of us worked out reduction schemes individually that have allowed us to reduce far further than ever before but they are all basically the same - and they were based on a scheme a Swedish gentleman worked out when he simply couldn't get below 3mg without pain. 1mg at that level is 33%, 1/2mg is 17% - way above the 10% that has been recommended for years. So he used a table to see the daily doses and took the new dose on one day, old dose for a few days and then proceeded by repeating that and then reducing the number of days of old dose - until he got to everyday new dose. It worked, he got off pred and has been off pred for at least 3 years (it could be longer). Something similar to mine is being tried by a consultant rheumatologist in the north of England and he too finds it works for every single patient he has given it to. As it did for several ladies beforehand. 

My reductions are VERY slow. I use the following pattern to reduce each 1mg: 

1 day new dose, 6 days old dose 

1 day new dose, 5 days old dose 

1 day new dose, 4 days old dose 

1 day new dose, 3 days old dose 

1 day new dose, 2 days old dose 

1 day new dose, 1 day old dose 

1 day old dose, 2 days new dose 

1 day old dose, 3 days new dose 

1 day old dose, 4 days new dose 

1 day old dose, 5 days new dose 

1 day old dose, 6 days new dose 

By that stage if I feel OK I feel safe to go all new dose. I suppose you might be OK starting and stopping at "1 day new, 4 days old" but I was terribly sensitive to steroid withdrawal pain so I err on the safe side. Once you get to the "everyday new dose" - if you feel OK you can start on the next reduction, no real need to spend a month at the new dose. 

This avoids steroid withdrawal pain - which is so similar to PMR pain that you often can't tell which is which and some of us suspect that many flares are NOT the PMR returning but problems with steroid withdrawal. Using a scheme like this also means you can stop immediately if you have any problems - you might be fine at one day old dose, 2 days new (lower) dose but not at a 3 day gap - but you have dropped your dose a lot and that is the idea. It also isn't as slow as you would think - you can reduce at a rate of about 1mg/month on a continual basis. 

I have this underlying suspicion which I have a mental blockage on that X-ray shows OA in both knees, very slight and also lower back all due to competitive tennis. 

I presume that Prednisolone does not help OA so will the MTX help the OA and maybe enable me to reduce the Prednisolone?

 

No - nothing much will change any OA pain significantly. At higher pred doses the OA pain may improve because the inflammation is calmed down but as the dose reduces the OA pain reappears. Taking 10mg pred for life to control OA pain might SOUND appealing but the longterm side-effects of that dose off pred might not be so rosy. This is the great holy grail you will find mentioned almost monthly in the tabloids - finding a potential cure for OA!

MTX is what is called a "Disease Modifying Anti-Rheumatic Drug" - it alters the destructive effect of the underlying autoimmune process that results in the damaged and twisted joints in rheumatoid arthritis. In this case, in PMR, it is being used for a different reason: it changes the way the body processes pred so that a smaller dose of pred can achieve the same as a higher dose without MTX. The MTX itself isn't working on the PMR, it is potentiating the effect of pred in PMR so you need less. The studies that have been done are contradictory. One says it works, one says it doesn't and one doesn't know - and they were all smallish studies anyway. The most recent publications about PMR management removed the recommendation of the use of MTX as a steroid sparer. If it works it is often because the patient was mis-diagnosed originally - late onset RA and PMR can be pretty much identical in the early stages. About 1 in 6 patients who are told they have PMR are later told it is LORA.

David

Put arc + flexiseq +UK into your search engine. (Not a drug either).

I use it for OA in both knees, brilliant.

The use of omeprazole with pred is also to prevent the overproduction of acid and damage IN the stomach as it is felt the pred can irritate the lining of the stomach and cause damage there - it is less because of reflux as such. I mentioned rantatidine/Zantac earlier, that is also available over the counter. But of course, if you are on the usual variety of pills for PMR you should have bought a pre-payment certificate so the PPI/H2 drugs are covered by that!

I have never taken anything - and I know a lot of people who don't either. We all used yoghurt, often eaten at the same time we took our pred, and it has worked well for all of us.

no problem, delighted that everybody shares it helps get a better overall picture.

Blowed if I know why anyone would say you'd need calcium and vit D for life! It's really only of any advantage whilst you are on pred because you lose more calcium because of the pred. Vit D is essential for calcium absorption from the gut and almost everyone in the UK is deficient to some extent. Presumably your blood checks have shown a high calcium level in the blood which is just as bad as too little as the body is a bit fussy about the amount of calcium available to it. At this point the first thing is to cut the calcium and vit D intake and see if that brings it back to normal. That is the simplest answer, you are simply getting too much. If it doesn't then other considerations come into play.

DJ

I had GCA, I did not have PMR.

I felt exactly the same and after two years I dropped every other drug I was offered except pred, aspirin and premarin.  I told both Consultant and GP we would deal with problems as and when they arose.  They did and we did.

I do not advocate to anyone doing what I did, but you are the first person I have come across in 6 years who feel as I did.

I took yoghurt with a teaspoonful of Manuka Honey (UMF 10,15 or 20) every day.  I also used lemon jiuce for acid reflux. All of these tips and tricks and can be found on the websites mentioned in a post answering dvidmelville.

I also had Dexa Scan which told me my bones were OK and I also had Vit D tests which should be done as an exclusion test, but in many cases are not done.  The Vit D was low and that was dealt also.

Vit D test is explained in two Newsletters on the North East site and also on this site  - just put it in the search engine.  We asked permission to use the information from patient.info and were granted it.  Knowledge is Power.

Come on lodger ;-) - you've heard me waxing lyrical about using drugs before they're needed for the last 5 years! 

I was offered alendronic acid at the start and stopped after 4 weeks after discussion with my GP. I took pred, calcium and vit D. Nothing else. Until the atrial fibrillation was diagnosed when they wanted me to take a statin and a PPI. I declined both. 

Eileen

Yup I know we two have waxed lyrical about it all, but this was a first for me from someone else and first time I have confessed to anyone apart from you.  I still think thay because I took that action and did not add side effects that is why I eventually went into remission.  But I could be wrong.

Yes, I take my beta blocker for A/F but like you nothing else and I have started on a maintenance dose of 1000 units per day Vit D  - level was going down again.

Whether it was the reason for remission or not - I don't see the logic of piling loads of chemicals into someone's body unless there is a good case for it. Trials are done in either relatively healthy people with no other medications present or in patients who are very very ill to start with. Neither of those scenarios covers the patient who is on multiple drugs - they may know that x intereferes with y when taken together. They have no idea how y plus a,b,c,d and s react together. Particularly since my side-effect is not your side-effect...

Eileen, I too have AF but I have a bradycardic respone to my AF.  So low that my HR was in the 30-40's!  So in 2013 I had a pacemaker inserted.  One of my better decisions.  As far as taking a "statin" drug...NEVER!  Asyou are probably aware "statins" can cause horrible muscular and joint pain.  My sister was on a statin and she got to the point where she couldn't walk.  

One of the tests my PMD ordered, when making the dx was to have a CK level done, to r/o polymyeleoitis secondarday to statin use.  I knew that would come back negative as I have never taken this class of drug!  That's how thorough my PMD is! 

Christine in So. California, USA 

When it was dx'd after a response to iv diazepam the tachy was 230+ with bradys of about 40 but they were fairly even. It took a bit of balancing to get the top down and the bottom up but mercifully no pacemaker yet! I'd always sworn not to take a statin but they were very persuasive - in less than 10 days I could barely walk, even with crutches, no pain just weakness. They were supposed to do another CK but I didn't give them the chance! The cardio was fine about it though - I hadn't had a "cardiac event" so no need for a statin at all.