What to do next

[369yds]

I've been on Preds since April last year , my gp thought I had PMR although my blood levels where . He gave me a dose of 15mg and with in days I felt so much relief ,I released how ill id been . My one shoulder right hand was a nagging drawing kind of muscle pain my left knee was swollen and throbbing and my whole body felt like it was pulsating hot sweaty and as if there was a something invading my body. My hands and feet felt as if they where on fire aching and throbbing. I'd go off to sleep and awake to the above symptoms . Had my first appointment with RHYm doc who said I did not have PMR or RA blood test show nothing un towards. It was not bilateral and could raise my arm /shoulder. Now reducing PRED as soon as I was on it ,doc orders but found reducing brought back aches and pains . In the mean time breathlessness and palpitations in sent to cardiology . BP test echo cardio gramme all proved ok except my BP was very high on moment and very low the next(she thought I had (Pot and Stars ) and not PMR ? gave me Amtrpline to help me sleep and get rest at night not working so far! I've reduced down to 9mg almost on 8mg a day and my body's back to square on hurting aching and pulsating and terrible nights and if I do sleep it's not long before I'm sweaty and here we go again . Shattered most of the time but I do try and do things and generally after a bit feel normal through the day. I'm just very confused at what's wrong with me and different opinions by two medical people . All I know is I'm suffering and feel as if I'm back to square one . Any suggestions I'm 57 year old lady , very upbeat and not a depressive nature , trying to stay sane and not knowing what the hell I've got , do any of you knowledgable people think it could be Ostio Arthritis?

[PMRpro Ambassador]

First of all - no, osteoarthritis is a different thing altogether, it is wear and tear damage on a joint, it isn't systemic (all over the body symptoms). Your rheumy isn't considering rheumatoid arthritis which is possibly what you are thinking of.

However - you can have PMR without having raised blood tests, about 1 in 5 patients are like that, but some rheumies appear not to have read about that! I have no idea what you mean by (pot and stars) although both PMR and pred can cause the sort of heart symptoms you are describing but the cardiologist seems to have found nothing untoward at present.

Since your GP suspected PMR in the first place and you did respond to pred fairly typically I would suggest finding a PMR expert and asking for referral to them, if necessary go privately for one visit maybe to discuss with them what they think. Where do you live? It certainly isn't 100% typical PMR despite the response to pred - it needs some lateral thinking I think.

[369yds in reply to PMRpro]

Thank you for responding my rheumy was convinced it wasn't RA as it would have shown up in my bloods which all appear to be normal . He was sure it wasn't PMR , and said it maybe OStio , I am awaiting X-ray results as my hand are swollen and joints sore and staring to distort . I never like taking tablets of any description but on reducing steroids very slow methods I've got this far and now taking ibrphofine to get by. Rheumy and cardio want me off PRED . And I'm really am trying but at the moment my nights are really tough and dread going to bed knowing what's in store if that makes any sense. I am in Dorset . The Stars and Pits are to do with the nervous system that basically deal with the body's adrenaline , what we eat , blood pressure, having lots of fluids and need to have salt in the diet , very wired and I peronaly do think I have this?

I feel that know one understands how my body feels and feel very frustrated ,because I look ok and made to feel as if I'm making these things up , my pain threshold is high and I can tolerate Electorolise and waxing with just a little winse . Can you recommend a name for a consultant . Once again thanks .

[PMRpro Ambassador in reply to 369yds]

I have a physiology degree but I really can't think what is meant by "stars and pits", pituitary gland maybe but even so it doesn't really make sense.

I have always been under the impression one can have RA which is seronegative (no positive blood tests) and that late onset RA often presents in that way - but I'm not a rheumy who is supposed to be an expert.

If you responded very well initially to the 15mg pred it DOES suggest PMR of the sort we discuss.

I would ask your GP to find another rheumy to refer you to for a second opinion. Dorset is a bit of desert I suspect but I'll ask around.

[369yds in reply to PMRpro]

Hi thanks for getting back , cardiology says Stars and Pots spelling mistake on my behalf!! I was hypo thyroxis back in the 90's that was purity gland . My husband has RA and our symptoms are very similar but if the medical specialist says no then what chance do I have! One thing I know for sure is that by reducing PRED I'm back to where I was when first diagoned . Think I will do as you said to get a second opinion .

[PMRpro Ambassador in reply to 369yds]

Where in Dorset? Is Bristol too far?

Anyone in the Dorset area got a good and thoughtful rheumy?

[TimTooYoung]

Hi I'm 58 and diagnosed PMR. I do recognise most of your symptoms, I did not believe the diagnosis at first. I did get great relief from prednisolone but had difficulty changing dose. I think I would trust your body to do what you feel makes you better, but when reducing be patient for benefit. Good luck its a long haul

[369yds in reply to TimTooYoung]

Thanks Tim , I think I have got PMR , but who am I to disbelieve what we trust in doctors. I'm very agile and my body is very flexible dispute my aches and pains . I think stress is a very high infliunce in this kind of illness , I've had quite a bit if that lately but you think your dealing with ok but some days feel so low and just want to know what your doing is ok. I take my meds I the morning and wonder if I should change my timing to later in the day to see if that helps with my restless night .

[Hidden in reply to 369yds]

I am down to 10 mg and was getting little sleep. I have tried i week on 9 mg with breakfast and 1 mg in the evening which has enabled me to sleep much better. We are all different, so it won't work for everyone!

[369yds in reply to Hidden]

Thanks whisper , I will try this just got 9 mg and trying to reduce to 8 but this has caused to go back to square one, will defiantly try what your doing to see if it makes me sleep any better . Anything is worth a go .