I have had PMR for 2 months now and the pain is quite bad, what strength steroids is normal to start off with?

[rory61]

My GP has had me on 5mg to start and now on 1mg and now getting severe pain in my wrists and my little finger is starting to bend with arthritis.

[piglette]

Normally people start on 15mg of oral prednisolone. Some start on 20mg or go up to 20mg (sometimes higher) if 15mg does not work. 5mg seems a very low dose to start, I wonder what their reasoning is. Most people take many months and even years to get to 1mg.

[rory61]

It is a bit of a worry, because in one week my little finger is bending with arthritis type pain, pins and needles constantly in my right arm, sitting and standing is agony. I am also wondering if stress can bring this on because over the past 2 years I have had multiple injuries and operations from work related incidents and not getting paid correctly which puts pressure on the family.

[Hidden]

rory61,

Hi, no wonder you're in pain. The dose you are on is a joke! Your GP seems to understand nothing about PMR.

I've been on 30mg starting dose twice, initially and then again after a bad flare.

You should have been put on at least 15mg to knock the pain and inflammation out.

Do ask your GP to study the latest data on treatment for this illness - if he can't be bothered, then get another doctor. Don't wait, PMR is potentially dangerous as it can lead to GCA.

Pats.

[rory61]

Thanks guys for your advice, did you need to take vitamin D & Calcium with Iron supplements? I also have an inflamed liver.????

[rory61]

Have you suffered any side effects? and can you tell what food may be a trigger? Thanks.

[PMRpro Ambassador in reply to rory61]

You need calcium and vit D if on pred, iron if you have anaemia associated with autoimmune disorders.

5mg is a joke as has already been said and will do nothing - google this article by a top PMR/GCA group in Bristol: Our approach to the diagnosis and treatment of polymyalgia rheumatica and giant cell arteritis by V Quick and J Kirwan in Bristol. Show it to your doctor - if he/she won't listen then get another GP who will. At 5mg you would only have side effects and no benefit.

[rory61]

I am seeing my GP Friday, does anyone get pins and needles like carpal tunnel?

[Hidden in reply to rory61]

Hi rory,

Yes, I still get it a bit, even after 3.5 years on pred, but not nearly so much. What causes it? I'm not sure, but it certainly caused a lot of worry and disability in the beginning. Keep the joints moving at all cost and massage every day - use moisturiser to help, in fact moisturise all of your skin as pred can thin and weaken it.

Watch your diet - no refined carbs, salt and sugar are out - your body can't get rid of either like it could before you started on pred. Lots of veges, but cut down on fruit as it contains sugar. Try to eat lean meat and lots of fish. If you don't eat healthily, you'll pile on the weight. Of course you may be a healthy eater already, so ignore my ranting if you are so.

My illness went to sleep about 6 months ago and I'm feeling pretty good - so much energy and very little pain. My symptoms now are caused by aches and pains caused by the drops in the doses. On 5mg now and really going for it! There was a time I thought I would never be well again.

Get a good Doc and stay with us - we are all in the same boat and you'll get all the advice you need.

Pats.

[suzieh in reply to Hidden]

Such good advice!

[suzieh in reply to Hidden]

Such good advice!

[optimist-ok]

40mg a day coped with PMR although I had to increase to 60mg as I also had GCA & 40mg didn't manage that. 5mg seems ridiculously low!

[optimist-ok]

Forgot to say, yes, I also take calcichewD3 twice a day!

[polkadotcom]

Rory, is this a 5mg dose of steroids we are talking about, or 5 x 5mg tablets? The packet you have with the dose instructions will give you the answer. I'm finding it hard to believe that you have been put on such a low dose, it really doesn't make a lot of sense.

If you really are on 5mg, then I would suggest you go back to your doctor and ask them to think again.

[Hidden]

I started on 60mg a year and a half ago, it's been hard going, and at times

very painful, but I have managed to reduce to 12mg so far, I hate being on steroids, but I couldn't manage without them, the side effects are not very nice, but they do the job, I am still trying to reduce, but can only do that 1mg at a time, because any more than that, and the pains are to bad to cope with, or it might be withdrawl, all you lovely people on here have helped me in so many ways, this site makes me feel less alone, and it's helpful to learn new ways of dealing with things, so thank you everyone, and best wishes to you all

[Hidden]

I started on 16mg here in Greece and after the first two tabs was almost pain-free after 3 months in agony. My difficulty is partly language related - all the directions for the meds are in Greek, and my physician has only a little English. My main concern is that he seems to be telling me that I should take 16mg 3 times a day for 10 days, then if blood test is good, 16mg twice a day for ten days, then finish. This is rather alarming as I've read in the Internet that you shouldn't stop suddenly and really need a low maintenance dose for a couple of years. Has anyone else had such a short course? The neurologist emphasised that I must not have sugar or salt; does anyone know if this includes fructose or lactose? It's hard not being able to speak in detail; not their fault, it's their country, their language and I'm the one who can't speak it! I've had superb treatment, if a little haphazard, and it took less than a week from initial consult, through tests, diagnosis and treatment. But there appears to be a problem with the service as the EHIC only entitles me to the same service that Greeks get, which is bugger-all. I had to pay 50€ to the neurologist and 250€ for an MRI scan; I'm on state pension, so not easy. The pharmacist had to bend over backwards to get me the meds as I'm not officially resident.

It's beginning to look as if I might have to fly back to England...yeah, feel sorry for me

[polkadotcom]

It seems to me that he is trying to treat it as if it were a condition or problem which needed short-term treatment with steroids - infection or asthma perhaps. The dosing instructions are not those suggested here but basically you would be on approx 40mg daily to start with, then lowering to 32mg, then stopping after 3 weeks. 40mg is the usual starting dose for GCA here where there is no indication that the temporal arteries are involved.

I have been on a vaguely similar treatment plan here for a chest infection, so it isn't out of the ordinary as a short term course, but neither PMR or GCA is regarded as a short term condition here. The minimum time now suggested for tapering down and off steroids is two years at least.

The banning of sugar and salt, while admirable in general terms, isn't one I've come across here, We do suggest that carbs and sugar are limited if only to avoid some of the weight gain steroids can bring.......but a total ban would be hard to follow.

[Hidden in reply to polkadotcom]

Thanks for your response, polkadotcom. I've been feeling a bit isolated out here, so it was comforting to find this group. It's early days for me and of course I'm hoping I may be one of the lucky ones who recover quickly. It's helpful to read that short-term treatment is sometimes used for other conditions and is not necessarily dangerous.

I've just read another post about buying pred online; that's an interesting alternative I might consider, given the guidance of other peoples' experiences. The Greek system is so exhausting to deal with when you're feeling a bit dodgy anyway.

Yup, cutting out sugar and salt is nightmarish, particularly as it's very hot here now and we're all sweating buckets. I do feel I have to replace the salt I'm losing, at least. Sugar just means I miss out on some treats; I can live with that as I feel so much better.

Best wishes to all.

[PMRpro Ambassador in reply to Hidden]

Google this paper: "our approach to the diagnosis and treatment of polymyalgia rheumatica and giant cell arteritis" by V Quick and J Kirwan

which gives a good outline of dose and reduction from experts aimed at GPs. You should be able to read much of it.

You will need pred for a couple of years not a couple of months so if you can't get your doctors to comply you will need to look for one who speaks enough English to read it. There are bound to be some in a big hospital - and often they can read and understand English even though they can't speak it. This is a problem with being an older ex-pat who doesn't speak the local language - and I doubt PMR is a common problem in Greece! I live in the German-speaking part of Italy - no problems for me, I speak fluent German but if I had to deal with an Italian-only speaker I would struggle too.

And this is my reduction scheme which seems to be working for a lot of people (there is another, just as good):

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.

The Bristol group start new patients with PMR with 6 weeks 15mg, 6 weeks at 12.5mg and then a year at 10mg before continuing the reduction and that achieves a far lower rate of flare (20% instead of 60%) and I suspect their flares then come below 10mg as they then do the 1mg at a time reduction. Just below 10mg is a common dose for people to get stuck at - and I (and others) believe it is because even 10% drops are too much for many patients. These patients are then labelled as "steroid resistant" or told they need methotrexate to help them reduce but we have seen this slow reduction work for those patients too. We believe that methotrexate (MTX) works for patients who have late onset rheumatoid arthritis (LORA) or LORA and PMR together. Very few patients get off pred altogether when taking the MTX - those who do are probably the mis-diagnosed LORA patients - or another arthritis that responds to MTX.

[Celtic PMRGCAuk volunteer]

Rory

I'm just wondering if Rheumatoid Arthritis has been ruled out in your case? You mention that your "little finger is starting to bend with arthritis" and this is often a symptom seen in RA. We have come across patients being diagnosed initially with PMR in the past and then having the diagnosis changed to RA.

[rory61 in reply to Celtic]

RA hasn't been mentioned as yet, I have symptoms of severe stiffness and pain in both buttocks,top of the thighs neck shoulders in the mornings, when i sit for too long my buttocks ache like hell. The pain is like I can feel muscle tearing if I stretch too far. So I hope the next visit can sort something out.

[PMRpro Ambassador in reply to rory61]

The bending finger could be a "trigger finger" - ask your doctor. Not really PMR-related but is found alongside it.

[rory61]

Thanks all, I am seeing my GP on Friday and hopefully up the dose. Thanks again, the past few years have been hard due to having a major op on my left foot, total knee replacements to both knees and I still have both shoulder that need surgery and I am trying to work 45 hours per week.

[rory61]

increased the dose to 25 mg and within 5 hrs some relief, hope I get a good sleep tonight.

[rory61]

Hi Again, One thing I have yet to workout is when is the best time to take pred. and can you split the dose morning and night, coz I wake up with mild symptoms??

[Trenny]

I take mine after breakfast in one lot. Before that I have to take lansoprazole on waking, half an hour later I have cereal or a piece of toast, then 75mg sol. aspirin, then one more piece of toast. It works OK for me.

Good Luck.

[poppetpain]

Hi Rory. I was diagnosed with PMR 2weeks ago and started on 15mg of pred. I was taking them at breakfast and I only had 60% relief. Then I read that by taking them in the middle of the night, they work better. I have set my alarm for 2am on the last 5 nights and taken them with water and a sandwich (1 slice of bread) which I take to bed with me. I have had 95% improvement and some days 100%! I see them as my little goal keepers keeping out the little beggars that want to invade my muscles etc at about 4am. Once they are kept out at that time they don't seem to try again through the day. I will be reducing to 12.5 in few weeks and if this routine still works, I feel I will have a truer picture of how much I need to keep the beggars out while the disease is still active. That's my hope anyway but there is so much information on the forums to chew on and try. Doctors haven't given me any advice! BTW my right thumb was affected badly. Shoulders, arms, buttocks, thighs and knees as per norm but why my thumb