CRP up again

[Akino]

Blood work today!

CRP up to 41.2 from 27. It explaines the headache and temple ache I feel almost every afternoon. (suspected GCA)

I'm so sad. It seems this will never get better. Why is it not getting any better with 60 mg every single day for such a long time.

I'm afraid I'll have to call my rheumi's office for an earlier appointment and talk about a different approach, meaning as PMRpro mentioned going to the hospital for a few days for a higher dosage of intravenous Prednisone. And I hate to do this.

i also developed upper back pain every day now. It's an aching, dull pain around my spine. Now I'm afraid I could get PMR as well.

Thank you for listening.

[PMRpro Ambassador]

It is possible you aren't absorbing the pred - in which case iv will get round that. I suggest it because at that dose you shouldn't have any PMR-type symptoms. But don't leave it too long before contacting your doctor - it is Friday tomorrow and then the weekend.

[Akino in reply to PMRpro]

I went to my Rheumy's office today. As you might remember I live in Kelowna, BC. Dr. McLeod goes to the North quite often to treat patients there. He'll be back on Monday and I got an appointment for Thursday next week, what makes me feel much better. I'd like to talk about my treatment and the options I have. I want to get off this Prednisone asap and I even would go to the hospital for a few days. I want to see improvement!!!!!!! CRP down and down and not down and up and down and up. I know I've to be patient.....

Thank you again, as always!

Much appreciated.

[PMRpro Ambassador in reply to Akino]

Going into hospital for high dose i.v. pred won't shorten the disease course - don't make the mistake of thinking that. Both GCA and PMR are long term, chronic illness due to an underlying autoimmune disorder causing our immune systems to attack our body tissues and causing damage and inflammation. It is only when that burns out that you are able to dispense with pred at some level.

[Akino in reply to PMRpro]

Oh man, my mistake. I thought it would speed things up, but of course you're right. To be so helpless is hard. Thank you!

[PMRpro Ambassador in reply to Akino]

Unfortunately not - there are some people who think that it DOES help the onward journey if the starting dose for PMR is a bit higher than the recently used 15mg and that is reflected in the latest recommendations. Same possibly with GCA at the very beginning - but the long term part is still long. Like a piece of string...

[Akino in reply to PMRpro]

You have this now for 8 years, if I remember right. How did you adjust? And how was it at the beginning?

[PMRpro Ambassador in reply to Akino]

13 years actually - 8 years on pred! The first 5 years were, um, interesting! I kept mobile by doing an aquafit class every morning Mon-Fri, the earlier it was in the day the better the day. I fell out of bed, struggled into a swimsuit and tracksuit and crawled to the car. I showered at the gym and did the class - then I could move. I repeatedly went to the GP - but my bloods were never raised and he couldn't see anything - my feet and hands were swollen but it wasn't obvious. I got the fairly usual response to a woman of a "certain age" - depression, menopausal, blah blah. Eventually I had a major flare, mostly of the myofascial pain syndrome part of my problems it has to be said and one of the other GPs handed over a script for Voltaren suppositories - how the hell he thought I could use them I have no idea! That was when I started on a long internet trawl and accidentally found a description on a blog by a GP of a patient with PMR. Lightbulb moment - but still had to wait to see a rheumy for x months. And he didn't agree, despite my miraculous response to 15mg pred in 6 hours. Wasn't interested. A different GP agreed with me though - and provided pred.

I had a nasty year about 5 years ago - a dodgy batch of pred let in a flare and I'd moved to Italy where the option is Medol, methylpred. Horrible stuff I decided, it didn't work except to give me awful side effects. But then I was switched another steroid - I lost 36lbs in weight and turned into a human again. And that's where I am now - another flare last year but now back to 6mg. That'll do me - and my doctors here don't argue. The new rheumy I had to see the other week to get physio tried to foist alendronic acid onto me - NO, NO, NO!!!!!! She seemed a bit bemused...

[Akino in reply to PMRpro]

What a journey! Thanks