GCA, fibromyalgia, osteoporosis and Raynaud disease as anyone else had these

[Aleahsha]

Hi my name is Elaine I have GCA I started on preds in feb this year I started on 80 mgs I never slept properly for months and felt that I was going mad cutting down on my preds I would have flare ups so back up to high dosage I am now on 25 mils of preds the lowest I have been so fingers crossed 🤞, I also have fibromyalgia , Raynaud’s disease and osteoporosis have had a back X-ray had results today and I have two broken bones one in the middle of spine and one at bottom of back the doctor told me there is only two things I can do one is managed with painkillers and two have an operation I feel so deflated and low at moment no light at the end of the tunnel

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

I had GCA only, so can sympathise with the lack of sleep early days. Hope it’s improved or improving.

Now you are down to 25mg you need to slow down a bit on reducing - particularly as you seem to have had issues previously.

Not sure what your plan is, but my suggestion is only 2,5mg steps (preferably monthly) until you get to 15mg - if that’s possible. From there 1mg reductions until 10mg and then maybe even smaller.... but that’s some way yet. As you only diagnosed in Feb this year, you have a way to go with your GCA.

Sorry to hear about your back, hopefully it can be managed with painkillers, with all the other things you have going on.

There is light at the end of the tunnel - it’s just very distant at the moment....but things will improve, and we will help as best we can.

Can you put a bit of info on your profile please, when you feel able - particularly country - as meds and protocols are slightly different - and although charity is UK based, the forum is multinational.

[Maisiek]

So sorry to hear this: sounds very painful. I find an afternoon nap essential and blame brain fog on sleep deprivation ! Sending hugs 😘

[SnazzyD]

I can quite imagine that going up and down the Pred ladder would start to wear you down, especially when you’re dealing with other things too. It is not uncommon for people to get stuck in this loop because of reducing too fast and/or mistaking withdrawal for a flare. If you are stable on 25mg, do try to reduce steadily with each step being no more than 10% of your current dose. I used to make sure I was settled with no symptoms for at least a week before reducing again. As the dose got lower I increased that settle period got longer. I got told off by my Rheumy but I countered with asking which was better, a slow uncomplicated slide down or risking going back up to high doses with bad withdrawal symptoms thrown in.

I have had Fibro on and off for years. I noticed that it often flared up with withdrawal, particularly the lower I got.

[PMRpro Ambassador]

There is someone else on the forum who had surgery for fractured vertebrae.

How is the fibromyalgia? I take it that diagnosis was made because the pain didn't go with high dose pred?

[Ambientman]

Ive just relapsed from 25 back to 40 i couldn't take the pain anymore, but i was sleeping better on 25mg good luck, your doing well.

[PMRpro Ambassador in reply to Ambientman]

Did you really need to go back to 40mg? Very often adding 5mg to the dose where the flare started is enough, although some may need a few days of a higher dose to clear the inflammation. But note I say "the dose where the flare started" - although even 1mg can be the difference between enough and not, if you start to notice symptoms returning, stop reducing and if necessary, go back to the previous dose.

[Ambientman in reply to PMRpro]

yes,possibly i could have taken 5mg but i find that isnt enough to make any difference,its take 2 days to feel better so may drop straight to 35mg.Got a telephone appointment with GP today ,tbh im just fed up feeling like crap and wanted to feel ok..i do have back problems from failed spinal fusion and take morphine,so i just get overwhelmed by pain.if im repeating myself ,apologies,i cant remember much at mo.thanks for the advice