Per enquiry

[Barwind]

Can you recommend a rheumatologist who is not frightened of giving steroids in the uk?

[jinasc]

What a strange question...........I have yet to meet a Rheumatologist or GP who does not prescribe prednisolone when necessary.

What sort of problem have you encountered? Your location would be helpful.

[MrsMac03]

Dr Joshi at Fitzwilliam Hospital, Peterborough x

[PMRpro Ambassador]

If the diagnosis they make is PMR, all rheumies will give pred. They may then ACT as if they are scared of it by encouraging you to reduce faster than is good for you but for many patients their reductions have worked so it isn't always unreasonable. GPs are more scared and will often not want to give a patient pred without a specialist's say so.

As jinasc says - what a strange question.

[Maggielou]

I think my friend was acting on my behalf with the original question.. i was diagnosed with PMR at the end of April and was on 30 mg of prednisolone to start with. Which dramatically eliminated all my symptoms . My inflammation markers were up at the time before i started on the 30 mg. The consultant then reduced it to 20 mg in a short space of time then 10 mg of prednisolone. The pains and general unwell symptoms came back.. not as bad but they are there. When i saw the consultant a couple of weeks ago my blood results were normal and so he wanted me off the prednisolone as soon as possible so i am reducing. Problem is my blood results were normal... even though i have the symptoms back each morning ie stiff painful shoulders and headaches which seems to come from the neck and create pain behind my left eye so i feel a bit lost now and on my own with this. The consultant thinks that the headaches may be due to migraine but i am not so sure.... i feel it comes from the neck anyway i take a nasal spray called Zomig which i believe dilates the blood vessels so the pharmacist said. I am only allowed 12 of these each month.... and always run out before the due repeat prescription time....Added to this I am very tired most days having always been active and on the go. I am new to the forum and have found it extremely helpful reading the various posts as i had never heard of PMR before. I suppose i should be pleased and relieved that my blood results are normal and just hope the symptoms I have particularly in the mornings.. settles down. By the time i see the consultant in four months time he wants me down to 5 mg prednisolone each day. Anyway the original question was asked by a close , concerned friend.... thank you again for this supportive group.

[PMRpro Ambassador in reply to Maggielou]

Your blood markers are normal because you are on pred - some people while on pred do not "mount the acute phase response" (as it is called) and produce the raised protein levels that are measured as CRP and ESR. The reduction plan was unreasonable - as you will know from reading on this forum.

I agree with Jackoh on every single point - especially "I want you off pred asap". So do I - but 13 years into PMR it won't let me! Luckily I have doctors who don't have a fixation about rushing patients off pred - as long as you are at 8mg or less they are perfectly happy.

You will have the symptoms back each morning, that is the nature of the beast PMR - a lot of people take their pred very early and settle down for another couple of hours by which time the pred should have started to take effect. Others split the dose and take a small amount (up to a third) later in the day which then carries them overnight so the morning pain is less.

But either you have PMR or you don't - and if he thought you had PMR at first he should now be reducing you IN LINE WITH YOUR SYMPTOMS not the lab results. They are always trumps and a sign the PMR is too active for the dose he wants you to take at present. If he insists - discuss it with your GP - maybe they would be willing to take over your management.

[Maggielou in reply to PMRpro]

Thank you PMR pro. I will try splitting the dose as you suggested. The Gp diagnosed PMR and referred me. The consultant agreed on my first visit because of the blood test showing inflammation. He still dropped it to 20 mg there and then so the blood markers couldnt have been too bad...then instructed me to drop to 10 mg after two weeks. When I saw him last wednesday week.... because the latest results were normal he was pretty insistent on the fast reduction to get to 5mg by the time i see him again in four months. even though i said that i didnt feel well and was experiencing stiffness in the mornings with shoulder pain... nothing like it was when it first developed i must admit. I am definitely not as bad as some of the members here on the forum... the tiredness and lack of energy is very hard. I am 67 but feel i have suddenly got old.!! I will go back to the GP and hopefully get some support. My friend who has known me since I was 21 was not happy with the consultants plan. I told him about this forum.. hence the original question. He is a retired GP by the way. I am feeling perplexed and down by it all but thank you for replying. I dont feel entirely on my own.

[PMRpro Ambassador in reply to Maggielou]

You may not be as bad as some here - but left like that you will soon be. My PMR didn't start bad - but after 5 years undiagnosed I was probably in as bad a state as many here.

As for your comment "I feel I have suddenly got old", read this:

healthunlocked.com/pmrgcauk...

If your GP won't help, then you need another, more realistic rheumatologist who is clued up about PMR. Most of us need far more than 5mg for at least a year - and forcing it down won't work.

[Maggielou in reply to PMRpro]

Wow I can certainly identify with so much of that in the article. I am in Dorset. I would consider finding another rheumatologist and paying privately. I really don't want to ever feel as bad as I did end of April.. it seemed to be travelling around my body.. lower back left hip and even my hands as well as shoulders and neck. I am a musician.. retired teacher and I couldn't play piano or flute and clarinet. Apart from that I didn't have the energy. My energy levels are pretty low now but the stiffness and aching is mainly in shoulders now plus neck.. behind left eye and twinges in lower back. Anyway thank you for that article. It's awful having to fight to be heard from the specialists. I almost wish my blood results were up then I wouldn't have this hassle and feel so helpless. Thanks again PMRpro.

[PMRpro Ambassador in reply to Maggielou]

Put up a new thread asking for recommendations for a rheumy near you - DorsetLady may be able to help - or someone in their little informal support group depending on which end of Dorset you are.

[Maggielou in reply to PMRpro]

Thanks PMRpro. I have done that. I really need to be on top of this as i have to look after my hubby who hasnt been well and does rely on me.

[Jackoh]

I think I always feel annoyed when I read " the Consultant wants me off these steroids as quickly as possible" Do they not think we want to too! Also that a contributory factor being that the blood results are now normal and yes they would be if you were taking the steroids that control the inflammation! Also though like myself 20% of patients do not have high CRP or ESR , added to the fact that the blood results ,I believe lag behind symptoms: it's not always the best indicator of what's going on - as said so often on here - symptoms are king!

It does appear to me that he has reduced you far too quickly and wants to continue in that vein, risking a flare on your behalf and your inflammation not being fully controlled. Also out of interest I have headaches that radiate from the neck area and sometimes pain behind one eye and this has been diagnosed as cranial GCA. I'm not saying that this is what you have, it could just possibly be from neck problems due to the PMR or add ons but I think from what you've already said about your Consultant I would be looking at a second opinion. I feel you cannot willy Nilly continue reducing if it is not controlling the inflammation and at the rate he wants you to taper. I'm sure that others with more experience will be posting on here later.

[Maggielou in reply to Jackoh]

Thank you for your reply. I must admit , i sat in the hospital car park afterwards and thought where do I go from here? Blood results are good so i cant argue back so have to put up with the symptoms as i reduce the pred. I hope they dont get worse. When i was first diagnosed my lower back, left hip and hands hurt as well. . I dont have that at the moment which is something. I am 67 yrs by the way and had a worrying time with my hubby being in hospital with pneumonia. He came home from hospital last thursday. He was diagnosed with early onset vascular dementia just before last Christmas so I suspect all this hasnt helped me physically. Thank you for the support.

[Hidden in reply to Maggielou]

Under that amount of stress you are doing well. Like others I would just treat the symptoms. 🌻

[Jackoh]

So sorry to hear about your husband and I'm sure the worry about him has not helped at all as far as the PMR is concerned as it thrives on stress. Do let us know how you get on.