welsh pensioner

[simfonia55]

I went to bed one night, feeling ok, next morning could not move without excruciating pain, left it a few days, then saw my doctor, blood test came back, diagnosis pmr, put on 20mg of pred, and told to wean off very slowly after 3 wks, but due to lack of monitoring, I suspect I came off to rapidly to fifteen, however after 3 yrs am down to 7mg, rheumatologist, tells me that my sleep is not deep enough, and has put me on 10mg of amitriptylene, I have a dodgy hip joint, which does not help, but the pain continues to be almost, as severe as when I was first diagnosed.

Tried to wean down to 6mg last week, but oh no, system was having none of it, now back to 7mg, pains everywhere, shoulders, arms, hip girdle, calves, feet.

mercifully, I can sleep, but getting up and moving is very painful.

I am to see my rheum in 3 mths time, hoping for answers.

[PMRpro Ambassador]

They seem to have omitted the basic caveat: wean slowly to THE LOWEST DOSE THAT MANAGES THE SYMPTOMS AS WELL AS THE STARTING DOSE.

If you are in as much pain as originally there are two possibilities: one is that it isn't PMR, and the other (more likely one) is that you are simply at too low a dose. Perhaps your rheumy would like to consider that, if you are left in the sort of pain PMR causes, you are very likely not to be able to sleep properly!

[simfonia55 in reply to PMRpro]

I had a new hip oct 2017, and of course was suffering with pmr at the time, came out, and was on 7mg preds, and stayed on this dose for 12mths. however my legs swelled, particularly the one operated on. 6 mths on my hip girdle is still sore, probably due to the healing process of the operation. then 3mths ago I had a flare up, and was advised by GP to go up to 15mg, no better, sent up to 20mg, the original dose. another GP says if I went to 20mg, and I was no better, he did not think I had pmr. however I have all the symptoms.

It looks as though I am being messed around by the meds, and am wondering whether the dose is too low, taken in the morning the 10mg I am now on, by the late afternoon the pain increases, bedtime I have to take paracetamol each night to get to sleep, if I don!t it means

I have to get up and take them. I am confused, anyone out there make sense of this?

[PMRpro Ambassador in reply to simfonia55]

Yes - you may well be a person for whom the antiinflammatory effect isn't lasting the full 24 hours. It isn't unusual. Many people split their dose, about 2/3 in the morning and the rest about 2 hours before they expect the pain to reappear. Try that and if it works, take it from there.

It is of course also perfectly possible that it is no longer PMR - about 1 in 5 patients who originally get a diagnosis of PMR have it revised at some later point, often to LORA, late onset RA, but there are other things that can cause the PMR symptoms and your GP should be in the process of ruling them out if he hasn't already done so.

[simfonia55 in reply to PMRpro]

went back to 15mg of prednisolone this morning, no change in fact feeling dreadful, makes me think I still need to go up. how long does it take for new dose to kick in?

my original 20mg 4 yrs ago was instant.

I am taking a Chinese med which treats pain, and kidneys-liver etc are presumed to benefit, only taken so far for a couple of days, has anyone found any benefit going down that road.?

[PMRpro Ambassador in reply to simfonia55]

Difficult to say - because things change, the flare may be different and many people find it hard to get a flare under control.

I would be extremely wary of taking Chinese meds - particularly if you didn't discuss it in detail with a pharmacist and your doctor. How did you get it? You have no guarantees what are in them - they are not subject to the same checks and monitoring "Big Pharma" drugs are and many have been found to either have nothing useful in them or to have high doses of very risky substances.

[simfonia55 in reply to PMRpro]

thanks for reply, I appreciate your comments, as regards the Chinese medicine.

JIAN BU ZHUANG GUO WAN was prescribed by a local qualified person who has a legitimate practice, and has been treating me for years before my hip-op, with periodical acupuncture, he is well aware of my history. I have googled this item, and it seems very supportive of bodily organs, perhaps you could investigate, and advise further with relation to pmr, I think he is attempting to boost my energy levels

[simfonia55 in reply to simfonia55]

I await your reply to the above

[HeronNS in reply to simfonia55]

Simfonia55, you could do the investigation. PMRpro is an expert, and a very kind and well informed person, but like the rest of us she is a PMR patient, not a professional hired to answer questions on this forum.

[PMRpro Ambassador in reply to simfonia55]

I'm afraid you will have to wait - I merely suggested that confirmation that the stuff, whatever it claims to be, is suitable for mixing with your prescription drugs. I would also say that for any supplement. As Heron says, I'm a patient too and currently on holiday but my field of interest is PMR, not Chinese medicine.

[simfonia55 in reply to PMRpro]

I am now just over 4 years, suffering PMR, and still as bad as when I started, rheumy suggesting taking co-codomol, amytripylene, but I do not take kindly to these drugs. I am on 7mg,and increasing the dose does not seem to Zap the pain, in fact when I get up in the morning, although pain and discomfort is there, after taking the steroids, things do not improve.

I have tried lowering the dose, and find that symptoms are worse, so the steroids do seemingly ,slightly help. paracetamol do help me with nightly pain. I am totally confused, my doctor says they cannot offer anything else. can you add any other suggestion. kind regards. simfonia 55

[PMRpro Ambassador in reply to simfonia55]

You would be much better posting this as a new thread, very few people will see it here.

However - did you get relief with your starting dose of pred? How much did you start on? Did that starting dose give you an improvement of at least 70% in the overall symptoms? How long were you left on that dose?

[Constance13 in reply to simfonia55]

Because PMRpro picked this old post up I have read your story. I should take her advice and follow up with a new post.

I just wanted to say I still suffer with a lot of PMR pain, partcularly shoulders, upper arms, hip girdle, after 6 1/2 years. However, I have not only taken pred but also cocodamol almost from the beginning, I have always had, as my doctor informs me, “something else” running along with PMR and I certainly couldn’t cope without these pain killers (I only take 3 per day - 2 in the night and 1 during the day) - so you see you are not alone.

[HeronNS in reply to simfonia55]

It's been shown that among other things there may be rather high levels of steroids in Chinese medicines.

sciencemag.org/news/2012/04...

[Hidden]

Hello simfonia55

I think like PMRpro says you may just be at too low a dose, sometimes it can just be 1mg more or even 0.5mg

I'm currently on 6.5mg & find I have a lot of other aches n pains plus really bad knees, so sometimes it's hard to differentiate what is PMR & what is something else. I've had my knees x-rayed so I'll be interested to see what, if anything shows up! And, I'm waiting to see an U.L.Surgeon re my shoulder!

Maybe try going up to 8mg & see if it makes any difference, it may take a day or two to kick in.

Best Wishes 💐

Hope you feel better soon

Mrs N

[simfonia55 in reply to Hidden]

Thank you, nice to hear from you, I have tried a extra 1mg, up to 8, I guess we need to monitor things ourselves carefully, and trust that one day the PMR will leave like it came, in my case overnight. Good luck. Alun.B