anyone with PMR down to 9 mg who is also taking methotrexate with positive effect ?

If I were down to 9mg after less than a year I would NOT agree to going onto methotrexate. It has now been acknowledged by one of the top PMR/GCA guys in the UK that, actually, it doesn't do as much as they thought. If you can get to the gym and do that much you aren't doing badly! And a dose of 7 or 8mg is regarded as a low dose.

It may be he has found it helps but I'd want a decent amount of proof before adding another drug to the mix that can be quite unpleasant to take and which is now of disputed benefit. If your CRP is increasing I see where he might be coming from - but a bit longer at 10mg might be more effective. The normal recommended starting dose for PMR is 15mg and it is also now realised that starting at too high a dose leads later to more difficulty reducing later.

I recommend the following paper (you can google and download it - it's "free to air" so to speak). It is from one of the other top groups in the UK and aimed at GPs to allow them to manage PMR the way they do in the Bristol rheumatology department. Maybe a few rheumys could do with reading it too.

Our approach to the diagnosis and treatment of polymyalgia rheumatica and giant cell (temporal) arteritis. by V Quick and JR Kirwan

As for "the normal discomfort from reducing the Predinsone" - it depends what you mean I suppose. There shouldn't be any increased discomfort from reducing the pred - if the PMR itself comes back then the dose is too low. If you suffer from the pred withdrawal pain and stiffness which usually improves within a couple of weeks at the same dose then you can do a few things to make it better. One is to take it easy for the first few days after the reduction - i.e. a bit less in the gym!).

You don't say how much you reduce and how often. I (and several others) have found we can deal with the pred withdrawal discomfort by reducing by 1mg at a time (which it sounds as if you already do) or even in 1/2mg steps (which I do and it has allowed me to get to 5mg after never before getting below 9mg in over 4 years). I also don't even do 1/2mg overnight - I start with the new dose on 1 in 5 days, then 1 in 4, 1 in 3 and so n until I get to alternate days old dose/new dose. That's the 1/2mg for me as I can't cut my tablets - obviously it is easier if you can cut them, you can make the steps smaller.

Thanks so much EileenH for your comments as they are very helpful. I was thinking of doing exactly what you said . I have been coming down gradually from and was coming down by 1/2 each month until I reached 10 and now its 9 and in another month I would go to 8 . Some Doctors even feel its ok to be at 10 before going lower .

I was at 100 for my CRP when diagnosed and the increase from 18.5 to 25 in one month could be caused by something else. Maybe the next month it will be 15 . I have heard that 50 to 70 on the CRP is not abnormal . Prior to my diagnosis I had high fever , pneumonia and pain in my chest . Chest x rays and CT Scan show my heart and lungs are excellent .I have never had any heart problems. My GP said it was costocondritis and that it should clear up in one year or less . I have been thinking that maybe that pain and discomfort in my chest is a symptom of PMR but that may not be the case . In any event it could be the source of inflammation that is affecting my CPR. Maybe I have a condition called pleural effusion as well . I know chest x rays and CT Scans should detect pleural effusion but sometimes other tests may be needed . Any thoughts?

Once again thanks for your posting .

Hello George

Well my immediate thought is that if your CRP is 25, increasing from 18 in December, you are on too low a dose to control the inflammation of PMR. And 9mg is quite a low dose to be on after 9 months, if the experience of many of us is anything to go by.

In my view it would be far preferable to up the steroid dose a few mgs, say to 12.5 for a couple of weeks, to see if the pain in your shoulders and whatever you describe as "normal discomfort" eases.

I'm assuming that you are a gentleman in which case we have found that many men are able to exercise more than us ladies whilst suffering from PMR. BUT, with your high CRP and ongoing problems, if I were you I would reduce those visits to the gym and certainly not cycle at "high intensity", especially at the time of any reductions. You need to give the steroids their best chance to get control over the inflammation and bring that CRP down. If the steroid dose isn't high enough to keep the inflammation under control then you are at risk of GCA (Giant Cell Arteritis), a linked condition that can put your eyesight at risk. Good luck!

Thanks much MrsO for those comments . They are helpful an I agree it makes more sense to up the dosage a little rather than start a new medications with known side effects. Also good point regarding the exercise though the blood work for my CRP was taken right after Christmas when I had taken a break from the gym for a few weeks. .

I have a different disease and really only look here because you tend to be on the same drugs.

I have bullous/cicatricial pemphigoid and started on Methotrexate about 8 weeks or so ago. It is a steroid sparing drug and the aim is, to get me off the Prednisolone. I am currently on 5mg Pred daily and 10mg of Methotrexate [once a week].

Thus far, I haven't noticed an improvement and was better when I was taking 10mg Pred daily, But, the Cicatricial Pemphigoid is notoriously difficult to treat and they do say that it can take 12 weeks on Methotrexate before you notice any difference.

What sort of dose are you given with PMR?

Thanks--with the 9 mg pred it is recommended that I take a dosage of 6 mg of Methotrexate for two weeks then going to 8 mg once per week and stayng there when I drop to 8 mg Pred

Yes - I should have asked/mentioned - has the rheumy said that the MTX isn't a substitute for pred in PMR? It won't get you off pred altogether until you are ready with regard to the PMR.

MTX alters the way the body processes pred and the idea is that you can get away with a lower dose of pred to get the same effect and so, overall, you take a lower total dose of pred from beginning to end of the treatment. That was why they did a few trials to see if it worked like that in PMR. The results they got from the 3 or 4 studies they did were mixed - in one case patients seemed to need less pred over a couple of years, in another it made no difference and another it was inconclusive. A recent retrospective study looking at all the small trials done showed that over a longer period it made no difference at all - so all that was happening was that patients were being exposed to 2 lots of side-effects instead of one. And for some people MTX is unpleasant, making them feel quite unwell for a couple of days a week, bit like flu.

It isn't uncommon for PMR to be diagnosed but it to turn out to be something else - often late onset rheumatoid arthritis (LORA). I am of the opinion that the patients who do well on MTX are patients with something else, maybe LORA. MTX is the standard treatment in RA so would achieve a reduction in pred dose. It seems that some of the experts are beginning to think the same - using MTX in PMR is no longer pushed by them.

That's very interesting Eileen. My Dermatologist wanted to put me on Azathioprine but I couldn't because of my blood results. I thought the MTX side effects looked less bad than the Azathioprine. Unfortunately they don't do much research into Pemphigoid, so it's all a bit hit and miss. My Dermatologist is interested in it, as is my Ophthalmologist but that seems to be about it! I read all I can but, as the average age of onset is mid 70s, I never get to meet anyone else [online or off]

I have been on Pred for 2 years now and the Dermatologist I saw most of the time until last December, just didn't seem to have a clue and seemed to be trying hard to discharge me. She tried to reduce my Pred from 20mg to zero, in 2.5mg drops per week.

It is also interesting, The Dermatologist wants me off Pred, whereas my GPs would be happy to leave me on it for ever.

We have a few over-80s on the other forum, one over 90 - so age isn't a barrier to being online!!!

They don't do much on PMR and GCA either - but a group who met via this forum got to work and set up a charity and it is bearing fruit.

What age group are you (not being rude, just interested)? I think GPs are often a bit more pragmatic. What is the point of getting off pred because you might have side effects later if it is the only thing allowing you a decent quality of life now? The biggest worry they seem to have is the bone problems - but only about 40% of patients on pred develop osteoporosis. If you have PMR and don't take pred you are likely to be pretty much totally immobile - and that is just as big a risk for osteoporosis!

Hi George,

I just wanted to comment on the pain in your chest-costocondritis. I have been treated for PMR for almost 2 years now and pain in my sternum or breastbone is on the list with neck, shoulder, hip and knee pain. The worst is if I have to sneeze in the morning, it feels like what I could imagine only imagine it would feel like if you just had your breastbone wired together after thoracic surgery. Of course like the other pains by afternoon it is much improved. Since like you my heart and lung function are fine my Rheumatologist has also said it is most likely costocondritis from the PMR.

I also am on Methotrexate prescribed as a steroid sparing drug taken once a week, but have never felt any different between the day before I take it or a few days after. I really don't think it is doing anything for me and at this time along with tapering my pred I am also tapering my Methotrexate from 10mg/wk to 7.5 mg/wk. Hang in there, you have come to the right place the information in this forum is spot on with very knowledgeable people.

Regards,

Jo-Anne

Thanks very much JoAnne

I agree with you that people are very knowledgeable . It wonderful to hear from individuals who know from exp