If you think it’s a Flare

[EdithWales]

I have been happily slow tapering down to 4mgms and other than low magnesium , I have been fine.

We went Ona transatlantic cruise and 3 nights in Florida. I developed right shoulder pain which I thought was muscular and had my long suffering GP husband to massage it daily. I considered it was GCA another Flare but he thought not as it was only one side, I also I had mild headaches which I attributed to too much late night reading and overuse of of the I pad together with excessive Champagne. They were resolved with Paracetamol.

I was fine and swam in the sea in Florida.

When I came back last week, I developed hip pain and stiffness together what my children describe as the “funny walk”

I had my blood done yesterday and my CRP had leapt to 38 so in reading the Post and in consultation with the long suffering one I put myself up to 20 mgms

The moral of this tale is that if you think it’s a Flare it probably is

I have emailed the Rheumatologist and am seeing him next week, he is very laid back,I am terrified about my eyes, is that enough to protect them? I have been on Prednisone since April 2014

In the meantime 🥂

[PMRpro Ambassador]

Most doctors I have talked to think that 20mg is probably plenty to manage GCA without severe headache and visual symptoms. If the 20mgs doesn't cover all symptoms - back to the rheumy I suppose.

What a shame - but was the holiday good?

[EdithWales in reply to PMRpro]

Thank you. Modified rapture, it was a Celebrity Cruise and I am a Cunard girl. Very alcohol oriented and most people had the Drinks package which was £1000 for two so made use of it and I can’t stand the pace. It was also a reposition ing Cruise so was packed 8 nights to Boston was too long. Florida was great and we were on our own, I think I became allergic to too many people.

Still waiting for the Rheumatologist to ring me but as I said he is pretty laid back, I get more sense out of you. Had a very interesting conversation with the long suffering one last night who admits he doesn’t understand any of it. He is very clued up because of me but it’s worrying that the rest of them may not be🥂

[PMRpro Ambassador in reply to EdithWales]

I was astounded at the alcohol packed away by some!!! Ours was Celebrity too - did what it said on the tin but I'm not desperate to go again. Our food was good though!

I know exactly what you mean - scary comes to mind more than mere worrying...

[EdithWales in reply to PMRpro]

Take back all I said about him he rang me in the hairdressers when I was having my eye brows dyed and beard and moustache waxed. Said I could go up to 40 mgms until I see

him on Wednesday and then reduce quickly I was fine on 5 and he said I could just stay there. I suppose he thought that at 77 it didn’t matter. That suits me fine at least he isn’t threatening me with

Steroid sparers

🥂

[PMRpro Ambassador in reply to EdithWales]

Or he has read this:

practicalpainmanagement.com...

Someone said they handed this a copy of this to their rheumy and suddenly he was all relaxed about a long term low dose instead of pushing to reduce asap.

[DorsetLady PMRGCAuk volunteer]

Hi,

Ask your long suffering one if he thinks hip/leg could be trochanteric bursitis or myofascial pain syndrome as it’s only one sided!

Hope the increase in Pred works for you.

[EdithWales in reply to DorsetLady]

I think I did and he said he didn’t think so. It’s fine at the moment.

When are you off to New Zealand?

[DorsetLady PMRGCAuk volunteer in reply to EdithWales]

Next Tuesday, 28th.

[EdithWales]

Not long then, have a super time 🥂🍾