IN PAIN AGAIN

[eyeBRing]

HI

I WAS DOING OK ON 10 MG OF PREDNISOLONE AND THE FLAIR UP HAS COME FROM OUT OF THE BLUE. STOMPIMG HEADACHE AND SHOULDER PAIN BACK AGAIN. I AM BACK TO 15MG TODAY. HAD PMR TWO YEARS NOW AND FED UP.

HELP

[DorsetLady PMRGCAuk volunteer]

You mentioned headaches in previous post - about a month ago - did you do anything them then?

If you’ve had them all the time since then, and now have shoulder pains perhaps you should be looking at whether GCA has now added itself into the mix….

Have you seen a GP? If so, what have they said other than increase to 15mg? If not, then please do….and state you are concerned about it being GCA and that it needs checking.

And please let us know the outcome.

[eyeBRing in reply to DorsetLady]

HI I HAVE HAD ULTRA SOUND ON NECK AND HEAD SCAN. BOTH ARE CLEAR,

[DorsetLady PMRGCAuk volunteer in reply to eyeBRing]

okay , well that’s good step, so what are the headaches being attributed to then?

Have your inflammation markers been checked recently?

..and are you saying that in 2years you’ve never been lower than 10mg even though you had a good response at the beginning with 15mg…

[eyeBRing in reply to DorsetLady]

YHE LOWEST DOSE GAS BEEN 8 MG AND MY GP THINKS THAT IS MY TIPPING POINT. HAD BLOOD TESTS REGULARY AND MARERS STILL SHOWING INFLAMATION BUT NOT AS HIGH AS TWO YEARS AGO. HE SAYS TO DROP DOWN BY I MG A MONTH BUT IT DOESNT WORK FOR ME , GOING TO DO IT MY OWN WAY AT A VERY SLOW PACE SO THAT MY BODY DOESNT KNOW WHAT DOSE TO EXPECT, CANT DO MUCH BECAUSE OF MUCLE WASTE BUT TRY TO KEEP ACTIVE,

[DorsetLady PMRGCAuk volunteer in reply to eyeBRing]

Many can’t manage 1mg a month -lot on here do 0.5mg a time. So long as tablets are plain white ones they can easily be cut.

8mg or thereabouts is level when adrenals need to think about working again -so for that and your PMR (which as you have discovered is very much alive at 2years) you do need a slower taper …see this if you haven’t already found it

healthunlocked.com/pmrgcauk...

And this re adrenals -healthunlocked.com/pmrgcauk...

Good luck…

[SheffieldJane]

Are you fed up because your doctors told you that your disease would last for 2 years? Some doctors persist in repeating this myth. I only wish it were true. It does make you feel cheated when you pass the deadline and quite rightly feel that you’ve had enough and you’ve done your time.

In my experience ( 7 years and counting but with the added complication of GCA on top of PMR) flares rarely come out of the blue. It may be that you have ignored niggles and minor symptoms until they develop into something more significant. Most usually you have been tapering too fast. You should never drop by more than 10% of your dose and after 10 mgs allow a good 4 weeks between drops. I was dropping by half a mg (buy a good pill cutter) after 10 mgs. I really needed to and it’s good for your Adrenal recovery and it tends to stick.

Also try to avoid over doing things, even if you feel quite well. Your symptoms are being masked by Pred. Pace activity and have a nap during the day. Try to avoid stress, PMR and GCA just feed off it.

Have a look at FAQs on here, these diseases need intricate and careful management. You’ll get there, good luck.

PS. Headaches can be a red flag for GCA and should always be investigated.

[eyeBRing]

HAD AN ULTRA SOUND ON NECK AND A HEAD ANF ORBITAL SCAN. ALL CAME BACK CLEAR

[eyeBRing in reply to eyeBRing]

HAD A LOT OF STRESS WITH MY MOTHER AND MY MOTHERI N LAW DYING WITHIN MONTHS OF EACH OTHER , HAD TWO HOUSES TO CLEAR ETC. IN MY LATE 70S SO EVERTHING IS HARDER THAN WHEN WE WERE YOUNGER.

[DorsetLady PMRGCAuk volunteer in reply to eyeBRing]

My condolences -but no wonder you flared with all that stress - hopefully the 15mg will get PMR back under control..and you can restart your tapering but as SheffieldJane says perhaps look through the FAQs and get a better handle on how to cope with your illness.

[eyeBRing in reply to DorsetLady]

THANKS FOR YOUR SUPPORT

[singingloud]

Stress certainly plays into my flares. Do your best to rest now after such an emotional time.

I went back to 15mg for a month then to 12.5mg for a month and now back to 10mg. I’ll start my dead slow descent by .5mg in another week.

Hopefully I can get back to 8mg of prednisone again in a few months. I may not be able to go lower than 8 for quite a while.

Listen to your body and do your best to eliminate stress where you can. Not easy but worth trying.

Well wishes to you.