Pain an tenderness on top ofhead

[MaryA_]

I was diagnosed with PMR but doctor wasn’t sure about GCA , although he put me on a high dose of prednisone. I am now down to 5mg and having the tenderness on top of head again along with a lot of leg burning which has been constant the past 2 1/2 years. Just don’t know what to do at this point. They want me off the prednisone but not as badly as I want to be off I’ve been reducing 1/2 mg every 5-6weeks

[Hidden]

MaryA, I believe you may have gone past your required dose. At what dose you last without head pain and/ leg pain? You and the drs may want to get off pred but it sounds like it may not be finished with you.

You don't want to leave the inflammation tape dripping into the bucket of pain. My Rheumy says in his experience 5mg is the most difficult to stick. I am in 6mg having tried 4 times to go to 5mg using various methods. It's no good, the fizzing burning thighs come back. Would you drs do a quick increase of 5mg for a few days then come back down by 1mg every few days or so. I personally would do 1mg down per month just to see where my body stopped grumbling. If it was 6mg then see if you can stay there. Don't just sit on head symptom either. Any sight issues off the hospital.

Is there a particular reason you want off pred or is the part of the "myths" of pred that hang over?

[MaryA_ in reply to Hidden]

Thanks poopadoop

[MaryA_ in reply to Hidden]

It probably is the myth

[MaryA_]

Some of it is the pressure from doctor to get off the prednisone. I had a hard time at 7 1/2 , now at 5 but the head tenderness scares me , afraid of loosing my eyesight

[Hidden in reply to MaryA_]

That understandable. There was no sign of GCA before though? It's a pain in the bum as theres no way to tend to it that really confirms it after this length of time. I would definitely give myself a boost of pred to see what happens. One dose wouldnt hurt you. I am sorry it's my bedtime now so excuse inaccuracies.

[Yellowbluebell in reply to MaryA_]

Pred isnt the big baddie in all this. It stops the pain from pmr and if GCA is around it is the only thing that will protect your sight. I know its hard accepting that you are going to on pred for a while but as far as most of are concerned it really does give us a relatively normal life. You need to go to your gp and tell him you are having pmr symptoms again and possibly GCA symptoms as well. If you get any worse GCA symptoms before you can see/speak to gp then you need to go to a&e. Keep us up to date on how you get on please.

[MaryA_ in reply to Yellowbluebell]

Yes, I’ve had the symptoms of GCA before. I plan on calling my pc on Tuesday

[Yellowbluebell in reply to MaryA_]

Thats great. If things change before you can see him dont hesitate to go to the emergency room.

[PMRpro Ambassador]

What do you mean by "leg burning"? Otherwise I have little to add to what's been said. Except to say - pred isn't half as bad as painted, especially at these doses.

[MaryA_ in reply to PMRpro]

Not sure how to explain what’s going with the legs. It starts at back side, goes down to ankles. It sometimes feels like a vice squeezing the ankles It’s been constant for a year n half no one seem to have an answer. Still have some pain across shoulders but it’s nothing I can’t handle. However lower extremities are getting me down.

[PMRpro Ambassador in reply to MaryA_]

Has your blood flow in your legs been checked? Is it related to anything particular or is it just always there?

[MaryA_ in reply to PMRpro]

It’s always there, but I will ask doctor or nurse to check it. Thank you PRMpro.

[MaryA_ in reply to MaryA_]

I guess an ultrasound may be the way to go

[PMRpro Ambassador in reply to MaryA_]

I'd want a referral to someone - maybe vascular medicine?

[MaryA_ in reply to PMRpro]

Yes, good idea