Started 1st dose prednisolone today

[Granv1lle]

Ive now been unwell for a year with PMR like symptoms. Have had MRI, PET and temporal artery scans which have all been normal. Neck, shoulder and hip pain with fever at night. CRP about 75 and raised lymph glands. Have been seen by various hospital departments and nobody can come up with a diagnosis so rheum consultant is starting me with a 7 day trial of 15mg prednisolone. I think I have PMR but so far all the medics disagree because of my night fevers and they can’t see any inflammation on my body PET scan. Surely if that is a requirement for diagnosis then every slightly atypical case would have one? Don’t GPs still diagnose and treat many cases without requesting scans? My pain seems to have improved just 12 hours after my first dose today so if that continues will that be diagnostic of PMR? Soon I may have to decide whether to continue the steroids with a tapering plan or manage without and hope my symptoms burn out soon. I’d appreciate your thoughts and any advice, thank you.

[HeronNS]

Your rapid response to a moderate dose of pred is one of the diagnostic tools, and very frequently the decisive one after symptoms have been taken into account and other possibilities ruled out. If it works for you then your medical people should have no reason to keep on denying the diagnosis of PMR as everything else they could think of has been ruled out. Their investigations have certainly been exponentially more thorough than anything I ever experienced (which was symptoms and blood tests).

I hope your pred journey is left very much up to you, with your doctor only providing some initial advice and then leaving the rate of taper up to you. PMR cannot be cured, but it nearly always goes into remission and the intervening time between diagnosis and remission are spent in part trying to determine the lowest best dose to manage the symptoms. I got stuck at 2 mg for quite a long time for example, actually years, but am now in remission, and 2 mg was without any significant side effects but gave me full relief of symptoms. I hope your doctor understands this, that only the patient can determine the dosage and the rate of taper. We all do better if the taper isn't rushed. As we often say, "It isn't slow if it works."

Others will be along with links to lots of information. We have people living in time zones around the world so there's usually someone here if you have questions or need a bit of support, or even just want to have a bit of a grumble!

[Groggrim in reply to HeronNS]

I agree with your comment 'it isn't slow if it works'My initial taper was rushed and my initial relief of pain and discomfort was short lived. I ended up yo yoing up and down with my dose which did no good at all. I am now doing a much slower taper that I am in charge of and I feel quite a bit better.

[HeronNS in reply to Groggrim]

Do you think doctors will ever learn? Myself, I've been lucky that during the PMR time the two GPs I've had, plus briefly a locum, have all been very happy to let me taper in my own time. Indeed, if anything, they all at one time or another discouraged me from tapering too quickly! It has made all the difference.

[Granv1lle in reply to Groggrim]

I’ll def be wary of tapering too quickly if I stay on them. Thanks Groggrim and glad you feel a bit better now

[Granv1lle in reply to HeronNS]

Thank you so much, Heron for your detailed response. I already feel that I belong to this PMR family even if, eventually,it turns out to be something else. In any condition/disease there will be atypical /outliers so perhaps I am one of those. I am so glad to hear you eventually got remission.

[DorsetLady PMRGCAuk volunteer]

Sounds very PMR-ish to me..and not sure why they are querying fever -that’s mentioned as a potential symptom.

Maybe have a look at this so you know what to expect if they do decide it is PMR - and please keep us informed …

healthunlocked.com/pmrgcauk...

Just seen I linked it previously, but might be worth reading again..

PS does your name imply a fan of Open All Hours? Or something g more highbrow? 😊

[Granv1lle in reply to DorsetLady]

Thank you for your response, DorsetLady. I knew nothing about PMR until I found this site (despite a nursing background) but have learnt an enormous amount and appreciate the experience and wise counsel of those here such as yourself. Thank you

[DorsetLady PMRGCAuk volunteer in reply to Granv1lle]

You’re welcome… and we will continue to help when it’s decided what you have…but I think most of us would hazard a guess at it being PMR . Although we may be wrong of course… 😊

[PMRpro Ambassador]

Whatever it is would seem to be inflammatory if pred helps! I had night sweats with "just" PMR. As for the inflammation on the PET scan - don't know enough about that but it does seem unusual, However, at least you have a doctor who is prepared to treat the patient in front of him and not the lab results.

If the pred does work, my line would be that obviously you have a pred-responsive myalgia of some sort. And while they work out what it might be - please can you work on the assumption it is a strange form of PMR.

[Granv1lle]

Thanks, PMRpro. Are you saying that it seems unusual for inflammation NOT to show? One medic said that pretty much every joint pain would respond to pred so a steroid trial would tell me nothing! I was keen to try after a year of symptoms so they agreed. It would be good to have a name to put to my list of symptoms but ultimately I just want to feel better without putting myself at additional risk of steroids if I can manage without. Thank you for what you do on this site-it is a bit of a lifeline when the chips are down!

[PMRpro Ambassador in reply to Granv1lle]

Well I'd disagree there - I have joint pain that only MASSIVE doses of oral pred sort but a steroid injection does nicely thankyou. However - PMR isn't really JOINT pain, it affects the soft tissues around the joints. And the characteristic of PMR is a very speedy response, usually to a moderate dose, 15-20mg. Whereas most inflammatory arthritides are usually slower to respond.

Steroids aren't half the risk they are portrayed as being, There are people who react very badly, not denying that, but most of the run-of-the-mill adverse effects can be mitigated or avoided when you know how. But most doctors DON'T know how. Diet is important - really low carbs helps avoid weight gain and reduces the risk of steroid-induced diabetes. I've been on pred for 16 years - nothing out of the way to complain about except 16 years of a reasonable QOL.

[bronigel]

I definitely had awful night sweats before I started on treatment. My GP delayed giving me Prednisolone because of them, and therefore when I was prescribed 15mg initially it wasn’t enough and I had to go up to 20mg

[Granv1lle in reply to bronigel]

That’s interesting you had night sweats too, bronigel. Hopefully, you are feeling better now.