Diagnosed with pmr at 48

Me again dawn, it seems as if the drop in dose may be a bit soon and if you speak to your rheumi or Dr, and go up to 20 again.. I find i get up that bit earlier and plan my day, giving me time to rest as I m still working at 72, its been really hard at times and I 've had to rest and to learn to ask for help for things I find so difficult.....you have to learn to be kind to yourself and to learn as much as you can about all this... take care x

Thank you for reply

i have had back, neck problems on and off for a few years. 

In March last year my back " locked " and then had Mir that showed a lot of degeneration with a disc protrusion and a annular fissure. Had neck X-ray March 2014 and September 2015 which that one showed degeneration had increased in severity also said worsened arthritis.

My back kept playing me up from March which then led to my neck also aching. In October 2016 I noticed my right arm aching and feeling weak. By end November I had tingling and pins and needles with slight swelling. Doctor said it was a trapped nerve in my neck .  The Aching was because I was thence they said . I was back and forth to the doctors as aching was going all through my body , I was extremely tired, felt so ill and I was struggling to move my arms. In March I couldn't stick it anymore and the painkillers were not doing anything so I had blood tests which showed high inflammatory levels. That's when the diagnosed pmr. I was then started on pred and pain did improve but not go. Since dropping down to 15mg I've noticed aching more but not like it was before pred. My neck aching which is causing headaches seems worse and generally feel ill . I want to do things but can't and have never felt anything like this before . I just want my life back

I was told by an orthopaedic docotr that the back problems I have which I describe as "add-ons" were wear and tear and I'd have to live with them. So I did for another year or so. Then my entire back seized up and I developed horrendous sacroiliacitis. I crawled to the local emergency room - who diagnosed it and admitted me for infusions as the quick fix. Unfortunately I had a bad drug reaction so I was handed over to the pain clinic for the slow approach. 

They assessed me - and said myofascial pain syndrome. All the muscles in my back were as hard as floorboards, just touching them was painful. I had steroid injections into the trigger points, manual myofascial release therapy and wet needling. It took a few months but it worked. Previously I had had back problems years ago, was prescribed massage and manual myofascial release techniques were used then. The GP also used the needling technique.

If you can find therapists who can offer you those they may help a lot. Not much chance on the NHS I fear though.

However - the fact you say you feel generally ill and have headaches does make me wonder whether your PMR is a symptom of GCA. Do you have any other symptoms? Scalp pain, jaw pain when eating, tenderness on your temples? 

No nhs moving so slow on appointments. Did see the doctor 2 weeks ago about a bad headache and she said it was a migraine as blood pressure was fine . Headache more like normal headaches now if that makes sense but do have pain in my face , slightly above jaw and side of ear ( like earache type ) . Does the aching go with pmr or have you always got a certain level

Get yourself to A&e and get this checked out.. you could be starting with GCA. I was messed about by a hospital who , on the phone, after my Dr faxed them, said I had an appointment in three weeks..I lost so much sight the next day and a different hospital where I was rushed to were fantastic... so please get yourself checked out..

Which aching? The muscles should improve eventually but everyone is different so it is difficult to say.

But I do agree with Mary. I am concerned you are showing the beginnings of GCA. If you have ANY visual symptoms do please either get someone to take you to A&E or call 999 if you are on your own. 

Typically, the jaw pain in GCA starts when you are chewing, especially something hard/chewy, and then goes away when you stop. Although a lot of doctors don't know about it, earache and tinnitus are also symptoms of GCA.  Most people describe the headache of GCA as like nothing they have ever had - but that isn't always so and everything starts small. 

Have you had a history of migraines?

If your vet knows how to achieve that would she kindly start writing papers for humans!!!!

Try doing your current reduction 1mg at a time instead of 2.5mg. Or try the Dead Slow approach

https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439

Never mind the "spoilt western woman" - if you weren't you wouldn't be expected to do all this if you were ill.

PS - love the kidults term!

You never know, EileenH, the vet just might be right? 😀

I tried to go down to ten from twelve and a half, and had a flare up, went back up to fifteen that next day then back to twelve where I 've stayed for three weeks... feeling back to where I was before flare up, so have phoned rheumi nurse, who is fantastic, and asked if I can do one mg drop from now on, slowly, at a pace I feel comfortable with...she's just rung me to say that's fine.. I feel better about this as that drop to ten was dreadful... maybe that's what you could chat to your dr or rheumi about.. what works for one can be dreadful for another... take care x

Thank you . At least you have given me hope that I will ride again even just hacking I will be grateful for . I would never of coped through winter without good friends doing him for me . I find it so frustrating that I feel so ill , achy and tired all the time .