REPEATED FLARES

[Mickey39]

Was on 14, reduced to 13 after 5 weeks. After 2 weeks, big flare in past three days ad now trying 15 in hopes. Ache from head to toe and can hardly walk. Upper legs hurt. Hands now aching. Vision blurry on 15, and double focus on 13. I am not winning on any front! This is after 3 years , from 30 to 8 and back up again. Hope to settle at 14 again. This is self inflicted as perfectly good doctor told me not to rush it. No GCA so far. Feeling totally debilitated.

[PMRpro Ambassador]

Are you sure there is no sign of GCA? Because some of that could be relevant symptoms.

[Abbeynan82 in reply to PMRpro]

Thank you for reply. I have focus problems as residuals from another autoimmune illness years ago, but definitely getting worse. Blurry seems to be light sensitive above 14 mg! No other head symptoms and getting CRP tests monthly or so. Says “stable at 16”. That was on 14mg. Coming down to 13 seems to have been a mistake. Even after 6 weeks.

[SheffieldJane]

My immediate thought was GCA. I have had PMR (4 years) and got down to 3 mgs and felt awful, vaguely awful. An ultrasound scan showed large vessel Vasculitis in my armpit and I was treated with 40 mgs Pred. I have 3 monthly eye checks at my optician. My symptoms are unpleasant, painful they include malaise and fatigue but remain difficult to define. I believe this could have easily gone undetected with a less engaged Rheumatologist. I am now on 5 mgs.

[Abbeynan82 in reply to SheffieldJane]

That is so interesting. I did have vessels scanned and big ones ok. I’m on 15-14 until I see doctor.

[SnazzyD]

Have you reported this to anyone medical because it sounds like you should. GCA or large vessel vasculitis don’t always appear in a textbook fashion. What has been their input in all this so far? When you say self-inflicted, do you mean in terms of excitable reducing or lifestyle, or both? If you can bear it, can you say what the yo-yo looked like between 30mg and now?

[Abbeynan82 in reply to SnazzyD]

Thank you. I started at 30 and reduced by drs orders to 8. Husband died. Flare. Back up to 10, down to 8 again. 7 total collapse. Back up to 12, down to 10. Trouble again. Up to 15 and now trouble at 13. 15mg has always been a sticking point. This over full three years.

[PMRpro Ambassador in reply to Abbeynan82]

Once you start yoyoing you are in trouble - one way of improving things is to accept you aren't going to be able to reduce yet and stick at a good dose for a few months at least.

[autumnlass in reply to PMRpro]

So VERY true!

[DorsetLady PMRGCAuk volunteer]

Vision blurry and double vision doesn’t sound very good -so please get it checked out.

This link below gives advice on flares -and I would also say that 15mg may not be enough to -

A. Get the flare controlled, and

B. Certainly not enough if it is GCA

healthunlocked.com/pmrgcauk...

Plus as you are having repeated flares, your illnesses is not well controlled.

[Abbeynan82 in reply to DorsetLady]

Yes. Doctor coming to see me after next blood test. Very little face to face contact. Optometrist says eyes are just fine! Muscle problem. I’m very tired and fall asleep a lot. Also have delayed fatigue. I have no active life. I try to keep moving, but have weak legs too, uncoordinated. Feel quite conquered!

[DorsetLady PMRGCAuk volunteer in reply to Abbeynan82]

Think you definitely need to discuss with doctor....you can expect some fatigue with a/i illnesses, but you are obviously overwhelmed by the whole scenario.

[Mickey39 in reply to DorsetLady]

Much of the problem is that the residuals from Guillain Barre years ago are neurological and are confused with or made worse by PMR

[DorsetLady PMRGCAuk volunteer in reply to Mickey39]

Yes, that wouldn't help...sorry to hear that.

All the best.