Pmr

[DianeMills]

I have had Pmr for 5 1/2 years and can't get lower than 2.5 mg of preds. Has anybody been on longer. Wondering if I still have Pmr or is it the preds that's the problem ie stiffness I am 63 year old female.

[polkadotcom]

Hello Diane, welcome.

Been on Pred longer? Yes, I can claim 15+ years and I know I am not the only one. I know of lots of other patients at 5mg-7.5mg - that is a common plateau when the adrenal system is slow to wake up and take notice.

If 2.5mg is what you need to manage your symptoms, then that is what you need. It is a tiny little dose and there should be no discernible side effects. If you have a reasonably 'normal' life on that amount then stick with it. Forcing reductions is the main cause of flares and there is no point in taking less than needed if it means you struggle. You get no benefit from it at all. If you are having stiffness issues, perhaps it is a little too low for you?

Regards

[trish29 in reply to polkadotcom]

Hello polkadotcom, your words are very comforting to read as I have had PMR for 13years now and in the past you and other lovely people on the Forum have given me advice .including PMRpro and Celtic. I have recently had nasty flares to my legs caused by steroid reduction and the heat so it will be interesting to see what happens if we are into a Heatwave this weekend. I wish Diane well and i would love to be on that small amount of steroid. Due to the flares I have had to go up from 14.05steroid to 15.05 and maybe 16mg because I can't move my upper arms and shoulders , struggling to do my hair, slightly better after some relaxing Bowen Therapy this week. After all these years I can't understand why my body won't let me get down further and my Condition just causes problems with everyday life ..saying sorry because I am not coping and upsetting my partners life . I have a fantastic Rheumatologist and a very uncaring GP..i considered going to my Medical Practice this week but knew I would come out of there being told off for still being high on steroids. This journey is such a long one . What you say about forcing reductions is so true but in 1 ear I can hear the medical team saying ..tut tut come on you must get down further and in my mind I say to myself .. come on at 70 years old you need some quality of life to get out of the house and today through my pain I went with my Partner to Library and out to lunch and hence I am now on the bed resting . Absolutely Exhausted!! Twice in my 13years I have got down to 5mgs steroid and was told I might have to stay on this for life but it didn't last long before something came along and up I had to go again. Sorry to go on but I don't know what to do ..i think I will stay on this higher dose for another week and see if things settle down ..i believe my Rheumatologist is on Holiday..thank you for your patience..trish 29

[PMRpro Ambassador in reply to trish29]

Whilst doing some reading a week or two ago I found an article with the pharmacodynamics of pred. The bioavailabilty (the amount the body gets) varies from 50% to 90%. So I can take 10mg of pred and it is really 9mg, you can be taking it and it is only 5mg. And you can't know who is which. But I'll lay odds the majority of doctors aren't aware of that little gem...

[trish29 in reply to PMRpro]

Thank you for this information PMRpro and it is interesting reading..I've always felt that I knew when I had taken the right amount of steroid but just lately I can't seem to get the right balance since having the last flares. I know I have frequently read that weight could make a difference to the amount of steroid the body absorbs and as I'm now a plump lady watching my weight all the time and recently very pleased with myself because certain clothes fit me again. I wonder if the Medics would give any leeway for this when encouraging to decrease .My pain level is unbearable today so I'm going for the 16mg dose and hope my pain eases ..thank you for replying I don't feel such an Alien again Best wishes. trish 29

[PMRpro Ambassador in reply to trish29]

More weight equals needing more pred to some extent at least. The symptoms are the guide when reducing - they are always trumps. Not that you'd believe that listening to some ...

[trish29 in reply to PMRpro]

Good morning PMRpro ..i agree with you entirely re the symptoms are the guide ..I've always known in my mind what amount my body needs and my Rheumatologist leaves the amount I take up to me ..He always says "You know what to do " but at the moment I'm between the Devil and the Deep Blue sea..i went up to 16mg yesterday ,that was an extra half mg ..i had a better night and pain level just a fraction easier ..i would allow myself an extra mg if need be but no higher than that ..just hoping that things will settle down ..This condition just keeps us on our toes .Hope you have a nice relaxing Sunday ..trish29

[Celtic PMRGCAuk volunteer]

Diane, it took me 5-6 years to reach remission and get off Pred. It really depends on what you mean by "stiffness" at this stage and where you are experiencing it. At the time I came off Pred, although my pain had completely resolved, I was still experiencing stiffness in my knees and ankles and it took very many months post steroids to suddenly find they were back to normal. I remember thinking at the time, well I am quite a few years older than when this all started so perhaps it's all down to anno domini! However, in my case it was obviously steroid myopathy as it all returned to normal eventually

Having said this, you could try increasing the dose very slightly, say to 3.5 to say if it makes a difference and then you will probably have your answer.

[54jen]

I am 62 and have had PMR for seven years. I am currently on 3 1/2 mg prednisolone . Have tried three times to reduce to 3 mg using the dead slow method but no luck so far. Will keep trying but I I can't see the point of being in pain and then having a restricted lifestyle. Guessing it is my adrenal system that is 'stuck' at the moment. I try not to worry about it and I don't bother with blood tests or rheumatology referrals. At GP check ups they are quite happy for me to manage my own prednisolone reduction. I have found ( accidentally) that going gluten free has resolved the myofascial pains I was formerly suffering with. In all other respects I am fit for my age with no other medical issues so I just count my blessings and get on with things!

[DianeMills]

Thank you for replying its reasuring somebody in same boat. I have been managing my own levels as well all the doctors do is put your preds up anyway.

[Threeyearson]

I will have been diagnosed 6 years in October. Have never got below 7.1/2 plus Naproxen. Am currently up to 9.1/2. and still in pain. I also have arthritis which is getting worse but I am 78 and still reasonably active.

[Diga]

I was diagnosed 10 years ago at the age of 48 and am still on 5 mgs as a maintainance dose. Every time I tried to reduce any lower my symptoms came back. However, I am very well on it. Have just started a get fit plan which involves jogging and cycling. So life is good .

[Fracham]

I have been on preds for 6 years, luckily now down to 1mg per day, with C-rp of 2 hope to give up soon.

[maria40]

I've been taking pred for sixteen years now, initially for PMR alone and for the last six years also for GCA. I've never managed to get below 4mg. After several increases for flares, I'm currently on 10mg and will be happy if I can get back down to 5mg using a very slow plan of reduction. Unforunately, as I've reduced other pains -arthritis etc - which have been masked by the prednisolone are emerging and it's sometimes difficult to distinguish these from PMR. But I would say if you're feeling well on 2.5mg stay with it, otherwise a small increase to eliminate stiffness shouldn't hurt.

[PMRpro Ambassador]

I'm 64 (just) and I've had PMR for 12 years and been on pred for 7. I'm currently at 10mg on the way down after a flare in the early spring although I have been down to 4mg. 3.5mg is simply too low - the fatigue is unbelievable so probably adrenal laziness.

Figures quoted by US experts are 25% get off pred in under 2 years but are at a higher risk of relapse later, about half are off pred in up to 6 years and the rest take longer/are on pred for life though that could be due to poor adrenal function as well. The standard German rheumatology text book says an average of 5 years - so obviously some are longer than that.

[Marcy47]

I was diagnosed with PMR a year ago. Started on 15mg pred and felt much better, then gradually reduced dose to 12.5, 11, then 10mg. Then pain in thighs and shoulders started again, so went back up to 11mg. Gradually reduced to 10 again, still getting very stiff in the mornings. Every time I try to reduce to 9mg I have to give up after 2 weeks with the pain. I am taking paracetamol when it gets too bad. How many painkillers are other people taking every day?

[PMRpro Ambassador in reply to Marcy47]

For most of us other painkillers don't touch PMR pain. Pred is effectively the painkiller.

I may get boring pointing out this next fact: the amount of pred patients absorb varies from 50% to 90%. The patient who is on 10mg and absorbs 90% is effectively getting 9mg, the patient who is a 50%-er is only on 5mg. That is the reason I keep saying - you need what you need and it depends on how much you personally absorb.

It took me 4 years to get to a dose below 10mg without problems. By then I had had PMR for about 8 years. I'm lucky I know - my doctors also accept you need what you need and that there is no point being on too low a dose. It all depends on the activity of the underlying autoimmune problem as well - if yours is active, you will need more pred anyway. Combine the 2 factors and who knows what you require.

[Marcy47 in reply to PMRpro]

Thanks PMRpro,

I will try increasing my pred dose to 11mg and see how it goes. I have an appointment in October to see a specialist, to see if he can recommend any other medication.

[PMRpro Ambassador in reply to Marcy47]

He may suggest using a DMARD - usually used in RA - alongside the pred which may reduce the amount of pred you need. There is no guarantee and it may not work, merely adding in another selection of side effects. The recommendations suggest using methotrexate, the evidence is, however, sketchy. Other DMARDs that are used are azathioprine and leflunomide - neither of which get a mention in the latest recommendations but which have worked for one or two people on the forums.

But pred is the mainstay (as they put it) - and I think that when the DMARDs help it may well be because there is another element besides PMR hovering around. But for those who struggle to get into single figures perhaps that is the case - and then it will work. I've been down to 5mg successfully so I don't think that is the case for me and I wouldn't try it. However, there is only one way to find out...

[Jorobinson]

Hi Diane,

My Mum has been on prednisolone for about 7 years now. She has managed to get down to 4mg and 5mg but has had relapses. In May she had to increase to 20mg and was also started on methotrexate inj. but had to stop due to side effects. She has also tried oral Mtx and Azathioprine which she could not tolerate. She is now down to 10mg, but I feel she has been reduced a little too fast. She is also on Amitriptyline 10mg at night, Gabapentin 300mg TDS and cocodamol 30/500 as needed.

After a recent consultant appointment, she received a copy of the letter sent to her GP which states she needs to get of the steroids " come what may' and has been on them far too long and changes the dose of her own free will which is absolutely nonsense. He states that he thinks it is a musculoskeletal disorder not necessarily PMR and the GP should try Morphine. I can't understand his logic. Mum was admitted to hospital in May with a CRP of above 100. The GP although sympathetic does not like to go against the consultant. I am so concerned he will put her on morphine leaving her drowsy, still in pain and no quality of life.

Sorry Diane I have hijacked your post here but am so concerned. It is comforting to read others experiences and know mum is not alone in being unable to get off steroids but feel patients shoul be treated with dignity not made to feel like failures as they can't conform to text book ideals.

[PMRpro Ambassador in reply to Jorobinson]

I was at a support group meeting a few days ago where 3 of us sitting together have had PMR for 15, 13 and 12 years. Only pred works. Without pred we would have no llife - and we are all agreed: whether we lose a few years at the far end or not - for the moment, we do have a life.

Where is your mum?

[Jorobinson]

Mum is in Nuneaton Warwickshire, do not think there are any local support groups. Just spoken to her and as I dreaded the GP has given her MST and Oramorph and not even advised to stop other opiate i.e. Cocodamol I truly despair. I think if she tries for a day or so and feels no benefit or has chronic side effects surely the GP will see sense. Mum sees the consultant on 8th Sept, just praying he doesn't try reducing by 2.5mg again or we will end up with another hospital admission. To add to the stress she now has a creatinine of 120 and abnormal BNP test so ther is clearly something else going on too

[Tuppence55]

How can I find a group in the southeast?

[PMRpro Ambassador in reply to Tuppence55]

This is a link to the page on the charity website:

pmrgca.co.uk/groups/

You're lucky your question was seen as this is a 3 year old thread!

[Tuppence55 in reply to PMRpro]

Many thanks