Newly diagnosed PMR: Having had bad hip pain since... - PMRGCAuk

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Newly diagnosed PMR

Barnaby2
Barnaby2

Having had bad hip pain since before Christmas I then developed bad pains down the backs of my arms and wrists so made an appointment with GP. I wanted to know what was causing it and if i was doing the right thing by working through the pain and still walking the dog or if it was making it worse. I am a normally fit person although I do have Scoliosis and pelvic tilt and I have been recovering from prolapse surgery. I am 71 and need to be fit as bringing up my nine year old grandson. GP was almost sure that from my symptoms I had PMR and gave me 15mg Prednisolone to take each morning. I had blood tests and was asked to return in a week.

After one week my symptoms had improved although hip pain still quite painful. The blood tests had come back normal-However the nurse had missed one that was quite important and would show if any infection so I need to have some more blood tests before next appointment which is in four weeks.

Having read on here about the importance of taking Vitamin D i asked GP and he advised I buy Vit D3 which I have but he felt my calcium levels would be ok if I had a good diet.

In my third week now on Prednisolone I am feeling a lot better but obviously still quite painful especially at night or if I try and rest. I stiffen up if I sit down. I also have terrible hot flushes but even though I take HRT this still happens-could this be part of PMR?

I am very lucky to have a supportive partner who even mucks out my horse's stable for me and carries heavy things like the hoover!

Is it usual to be referred at some stage to a rheumatologist or are most people just seeing a GP?

18 Replies
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PMRpro
PMRproAmbassador

Welcome!

It is fairly usual in the UK to be managed by your GP if your PMR is behaving as they expect - i.e. you aren't very young to have it, it responds to moderate dose pred well and there are no signs at all of possible GCA. The wait to see a rheumatologist for ?PMR may be long - in some areas of the UK as much as a year to 18 months and rarely less than 6 months.

If you are still having stiffening problems I would wonder if maybe 15mg is enough - it is the bottom end of the range for starting dose in PMR. The remaining hip pain is probably bursitis - mine took a few months to resolve starting at 15mg so there is time for that. And the night pain - when/where is it worst?

The daily dose of inflammatory substances that cause the inflammation in PMR are shed about 4am - the sooner after that you can take your pred the less it must do and the sooner it will take effect. The ideal time is 2am - then the inflammation never starts up in the first place. For some people the antiinflammatory effect doesn't last the full 24 hours and then splitting the dose may help to carry you over to the next dose without pain returning - 2/3 of the dose in the morning and the rest later is a common split but exactly when is best for you varies.

I had hot flushes due to PMR which improved on pred, a return is a sure sign the dose is too low and a flare is threatening but many people find that pred gives them sweats - and some can put the blame on both!

Barnaby2
Barnaby2 in reply to PMRpro

Thanks that is interesting

In UK you are not usually referred to a rheumatologist for PMR unless your doctor is unable to manage it

It is usual to be prescribed Adcal ( Vit D and Calcium) upon diagnosis of PMR, some of us take Vit K ( helps absorption) and Magnesium, which we buy. You will need to build in an afternoon nap or at least rest times. Perhaps your grandson could take over the leash duties, particularly if the dog pulls - walking on the flat is good exercise though. You need to be excused heavy duties for the duration. I agree that you could expect more relief from the initial dose of Pred. 20 mgs might just do the trick. The hot flushes and sweating seems to go with the territory I am afraid, both PMR and Pred seem to cause it. Some of us have found solutions to feel more comfortable. I use a bedside fan when needed. You’ve got a lot on, take great care of yourself.

Thank you for some good ideas. Luckily my dog does not pull so i am hopeful that a few short walks will be good for me but like the idea of some rests as I do seem to get tired and usually go to bed at same time as my grandson!

I was referred to rheumatologist really quickly - around 8

weeks. I was told by my gp that there is so much over diagnosis of pmr that they have to refer it on but seems different polices apply in different parts of the country

Barnaby2
Barnaby2 in reply to Arflane97G

It will be interesting to see if I get referred then

Thelmarina
Thelmarina in reply to Barnaby2

I was referred automatically. You can ask to be referred if you wish. Good luck!

Barnaby2
Barnaby2 in reply to Thelmarina

Thank you-did you have any change to your treatment after being referred?

Thelmarina
Thelmarina in reply to Barnaby2

The GP has left it up to the rheumatologist - and by and large she is pleasant but not as informed as this group, doesn't put pressure on me but indicates that she wants me to get off the steroids and that three years is quite enough. I'm on 8.5 now and taking my time at each lower dose. I'm old now so will not be ruffled!

Wondering why it's hard to diagnose when symptoms are achy/pain in shoulders, arms, hips and knees. Plus high inflammation in a blood test would confirm PMR. Wondering if GP's go on courses for the condition and particularly for the dreaded GCA !

I was told that pmr shares many symptoms with other conditions so they have to rule out what is is not hence I had a battery of tests. Was very relieved when I was eventually prescribed steroids!

To clarify Sheffieldjane's comment, it's Vitamin K2 you would want to take, not Vitamin K1.

As the others have said , you might find you need more than 15 mg prednisone . I needed 15 mg then 25 mg and then 30 mg to be pain free and at that point my GP referred me to a rheumatologist because he wondered if something else was going on because I needed such a high dose . I had all sorts of tests but he concluded that it was PMR .

Some people don’t absorb prednisone as well as others and you might be one of those .

Barnaby2
Barnaby2 in reply to katiemills

That is something that I wondered about. The Prednisolone seems to be working but during the night my pain returns

PMRpro
PMRproAmbassador in reply to Barnaby2

The antiinflammatory effect of pred lasts from 12 to 36 hours depending on the person. Every morning about 4am the body sheds another batch of the inflammatory substances that lead to PMR symptoms. If you are towards the 12 hour end of the range then you will experience a return of symptoms before the next dose is due. One way of reducing this effect is to split the dose into a morning dose and the rest late enough in the day to carry the effect over to the next daily dose.

katiemills
katiemills in reply to Barnaby2

From the pain you’re describing it sounds to me like you’re not getting enough pred to suppress the inflammation, but as PMR pro says , some people split the dose which might help you . As Sheffield Jane says sweating comes with PMR and pred , unfortunately . I’m sorry that you had to join our club , but we’re all here to help and support each other on our journey .

Hi there, I get very hot too since starting the Pred, even though at almost 73, I had hot spells now and again before the Pred, so not sure which to blame.

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