Help with medication advise please

[Derug]

Hi everyone I don't post very often but do read all the comments, I have been really struggling on my peds I carnt cope with the side affects above 15mg and my leaves are not coming down white blood cell are very high to, my doctor has sent me to a rumy I go on the 19th Jan after reading all the comments I a worried about what I am going to be given other than peds, I still have pain in my neck and shoulder lower back hips knees legs fingers it's better than it was when I'm not on anything, so advise would be helpful when I was on 30mg pads my leaves went right down but side affects where terrible worse than the pain. Don't like hospital, hope the rummy is understanding my doctor is amazing I am very lucky.

[PMRpro Ambassador]

What have you been diagnosed as having? If 15mg is not enough and you required 30mg either you have GCA with PMR symptoms or it is possibly not PMR. PMR is generally characterised by responding well to 15-20mg and then a lower dose maintains you reasonably pain-free (though I suppose it depends what you call reasonable). If you have GA you should have been referred to a rheumy right from the start. Requiring a dose of 30mg to manage the symptoms suggests something atypical and also should be referred so it is high time you saw a rheumatologist.

What the rheumatologist suggests will very much depend on what they think it is - if they feel it isn't PMR then there are a lot of approaches. You need to know what they think first - and really there is no point in speculating until you have a rheumy-approved diagnosis. They also have more drugs available to them than a GP - and if pred isn't acceptable for whatever reason they will want to try something else probably.

Is it possible that some of the pain is not PMR but something like myofascial pain syndrome which you will have seen my posts about - it is very common alongside PMR and has some common features. Higher doses of pred will often help but it returns as the dose falls. A good physiotherapist or sport physio/masseur who knows how to do manual mobilisation of the trigger points might be one thing to try - and, as you will remember I'm sure, I and several of my friends go to a Bowen therapist when ours plays up.

[Derug]

My doctor has tested bloods of RA which was negative, he does think it pmr I have so many side affects on the pens hot sweats head pain on and off when I was on the high dose my bloods where done and my levels went right down to normal in two weeks and I had no pain, I just couldn't cope with tho hot flushes I was soaking all the time, and the head pain I would have for a week or so and still do they are both dibilitating.

[PMRpro Ambassador in reply to Derug]

Having a negative rheumatoid factor does NOT mean it isn't RA.

I think we probably all have those side effects with pred - it is a question of deciding which is worse and for me the thought of going back to where I was with PMR never came into question - despite the sweats, beard, weight gain and whatever! However - 30mg is a very high a dose for starting with PMR, patience and 15-20mg is far better and usually associated with fewer side effects. You also have to do your bit to manage the PMR problems and then you can often manage with a lower dose of pred. Almost no-one is entirely pain-free even at their starting dose - but they are usually far far better physically and in less pain.

Your white cell levels often increase with pred so that isn't particularly indicative of anything. The ESR and CRP may be high for another reason - they just are in some people.

Anyway - see what the rheumy says.

[Derug in reply to PMRpro]

I don't no if you don't trust GP but I no there are good ones and bad ones in the world,but I have a good one who is understanding and likes to do all he can I have been through a lot in the last 3 years and have been through a lot worse than pmr, I do find the hot sweats debilitating and the pain I have on 15 mg is not getting any better as my levels are still to high, I carnt do Anything physical without the sweat pouring out of me my hair is constantly wet it is very embarising and unbearable to cope with constantly, I do have other problems to deal with as well as pmr, but I will see what the rummy says, I have learnt no to pre judge anyone and have a open mind

[PMRpro Ambassador in reply to Derug]

I trust GPs when they are good. I had a lovely GP in that he was understanding and kind and - all that you said. We were good friends - however, he didn't recognise what I had with symptoms very similar to those you describe and as a result I had 5 years of pain and disability because "the blood tests were negative". They are general practitioners - and are not experts in any specific field. That means that sometimes they are out of their depth - however kind and sympathetic they may be - and need to refer you to someone who specialises in the field. That is all I said.

[Derug in reply to PMRpro]

I don't mean to afend you, you just seam to be negative when you talked about GPS, I do realise they are not specialists and I do need to see a rumy I will be glad of some relief it is all really getting me down at the moment nothing I do seems to help

[PMRpro Ambassador in reply to Derug]

What I was saying is actually the guidelines. If a patient has typical PMR and it responds in the expected way to 15-20mg of pred and they are able to reduce well then there is no reason at all why the GP can't manage them all the way through. But if they don't respond well to that dose and need a lot more pred - as you seem to - or if there are any signs that it could be GCA then it belongs with a specialist. Who may also find it difficult - I won't deny that!

Constant pain is very debilitating - and when the treatment that is expected to provide relief is tried but it doesn't work you have to think outside the box. And know when to ask for advice. I don't expect my GP to have all the answers - I do expect them to know that and if I am still ill to look for another possibility. Your GP has done well by you so far - but the signs are that there is something else afoot.

[Derug in reply to PMRpro]

I agree I do hope to get some relief soon I do get head pain for days at a time with no or little releaf but no other symptoms of GCA

[elainemwh]

I have a sports massage once a week which really helps my muscles. I am also cutting down by taking the lower dose just once a week, then twice and so on. The problem is any change in your body is either blamed on the medication or the condition. I think you have to question what you are being given and why. If your doctor is good it must help a lot, you could always discuss with him what the hospital say.

[Derug in reply to elainemwh]

Thanks for your message I'm not working at the moment they don't think I will go back to work I do have other problems to, so my bug gets are limited at the moment, I'm hoping if the rummy changes the steroids I will feel a lot better I carnt lay on my front at all so it would be very difficult, I have been to a pain clinic but they didn't think they could do much to help, my shoulders are the worst I carnt bear the pain when I'm touched there at all, so I don't think I could cope with a shoulder massage but thank you for your surgesions.

[elainemwh]

I must admit I am lucky. A friend does it at a good rate. You can have a shoulder massage on a sit up type equipment. Can you get referred for hydrotherapy? Water movement is ofter easier than any other and if the water is nice and warm it is better

[Derug in reply to elainemwh]

I don't think I could cope with the pain it hurts me just to put cream on my shoulders, we have a hot tub but it's not on at the moment may be after Christmas I could think about putting it back on, I don't find a bath makes any difference and when I've gone swimming I hurt lots the next day, I'm sorry I have tried but not much seems to help I will be glad to see rumy and get some help thank you

[HeronNS in reply to Derug]

I do hope you find some relief soon. Constant pain is so very wearying and makes it so hard to enjoy anything. Please let us know how you get on. Hugs. ⛅