A Hello and a thank you!

[justbreathing]

This site has been a true God send for me over the past year, since I was diagnosed with Giant Cell Arteritis. Thanks to all the helpful people on here, I've been able to find answers that my doctors merely shrugged off or couldn't answer. I was luck in that my diagnosis was quick because when I went to emergency, a year ago, the opthamologist that treated me 30 plus years ago for Iritis was in the hospital and recognized GCA right away. He did an temporal artery biopsy within a week and it was confirmed. I began on 50 mg. of prednisone and I am now down to 6 mg. My doctor wanted me to be down to 5 mg. by the end of October but I'm going to continue at 6 mg. for a while because I over did things, for the past few weeks, trying to help my kids give my husband a surprise 65th birthday party. So thanks to this group, I know that my adrenal glands probably aren't back yet and that is why I am back to feeling exhausted and as if my arms and legs weigh 200 pounds each. This usually didn't hit me until early afternoon. Oh well.... one day at a time.

[DorsetLady PMRGCAuk volunteer]

Well done is getting so low in such a short time - but you really need to ease up a bit now - despite what doctor may want!

Yes some of the fatigue may be due to adrenals needing to get going again, but the leaden legs could well be the beginning of a flare (hope not) due to overdoing things recently.

So don’t let the legs get any worse - and start thinking about reducing only 0.5 mg a time rather than 1mg if that’s what you’ve been doing. A slow taper like this might also help -

healthunlocked.com/pmrgcauk...

Despite what you’ve been told, and read, your GCA may well have some time to go! 4 years is about the average -sometimes longer, and sometimes shorter but don’t assume it will be.

For your GCA, your tapering and your adrenals - slowly from now on is the best way.

[justbreathing in reply to DorsetLady]

Thank you for your reply. I guess I'd missed the 4 years being the average amount of time it takes to get off pred. with GCA. My doctors told me it would take 18 months to 2 years so I hoped I was half way through this. I did read that some people are still on pred for GCA after ten years but I hoped that my quick diagnosis, before any major damage was done, might have helped. From the beginning, I've had the heavy arms and legs as well as exhaustion which set in by about 11 am. but as I've reduced the pred. I've been able to keep going, well into the afternoon. My doctors have implied that the heavy arms etc. is a grin and bare it, by product of the process, also the dizziness. I will stay at 6 mg. prednisone until I get some energy back. The plan was to reduce by .5 very slowly over the next year.

[DorsetLady PMRGCAuk volunteer in reply to justbreathing]

Unfortunately many doctors, including those that should know better, still persist with the 2 years scenario.

The consultant who diagnosed mine (Ophthamologist rather than Rheumatologist - for obvious reasons) told me -

At least 2 years on Pred, probably 4 years, maybe for life - he was much more realistic and almost spot on - just over 4 years. Plus I’d already had it for 18months before diagnosis.

[Blearyeyed]

Definitely , if the party is over its time for you to enjoy some R and R for a week or two , look after and treat yourself , don't plan anymore big adventures of chores , relax and continue on that 6 mg until you get rid of that dead legged feeling and feel you have the energy to reduce again.

If the GP complains sweetly tell him that you thought it was better to take things slowly now rather than feel worse for trying and then have to up your dose again instead.

Take care xxx

[SheffieldJane in reply to Blearyeyed]

With that determined glitter in your eye.

Nobody’s taper goes to a doctor’s plan without consequences.” Life is what happens while we make other plans”. J Lennon.

[justbreathing in reply to SheffieldJane]

You just used one of my favorite quotes! I've avoided making any plans for the past year, even stayed home when my husband went to New Brunswick to help my son do renovations on his house... twice, for fear of having a flare! Last year, I would have strapped on a tool belt and dived in to help. My kids decided to give my husband the surprise party at our house and I did end up taking on too much. They told me I didn't have to do anything but ... Thanks for the reply.

[justbreathing in reply to Blearyeyed]

Thanks for your kind words, Blearyeyed. I see you have been dealing with these things for a long time! It seems we have 'art' in common. I put my paint brushes away because the 'heavy arms' made my hands shake too much. Yes, I will take it easy for the next couple of weeks... Take care, too.

[PMRpro Ambassador]

To be fair - I know more people with a GCA diagnosis who got off pred in 2 years than people with PMR! PMR is definitely even sneakier ...