Almost 4 years in to GCA/PMR , down to 2.5mgs of steroids, I have had a flare - back up to 60, and now as per GP/Rheumy instructions down to 20 (in about 7 weeks).
Still fatigued, aching and feeling pretty rubbish. My head comes and goes and is worse at night, I cannot lay on one side, feeling my temple is resting on pebbles,just wondered if anyone else has had this feeling.....? Movement, tiredness, all seem to aggravate my head, GP would be happy for me to increase steroids, Rheumy wanted me to reduce to 20 quickly, and stay there until my appointment ...... so feel really confused. I have only spoken to Rheumy on phone and will see her on the 9th May.
I am depressed I am bloated faced again after struggling for so long ( yes I know, sound very shallow ), not sleeping and always hungry but so far managing to minimise weight gain.
I have had flares before but this one has really knocked me for six, both physically and emotionally.
Thanks as always for any that can offer advice
Written by
lesley2015
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I do know how you feel, every flare is problematic and to get so far along and then hit another is not very nice.
It is better that you hit them hard and fast and always remember, your sight is so so important to you. Yes, this is a setback, but you will get through it.
I could not lay on my 'temple side', not that I had a 'pebble feeling' and not all the time, looking back it always seemed to happen if I had overdid it. A mate brought me a 'v' shaped pillow and I found that most useful so I bought one and kept it handy by the bedside.
If you keep on feeling hungry, buy a cucumber and wrap it in foil and keep it in the fridge. Whenever the hunger pangs hit (even if it is every couple of hours) cut 1" slice and eat it. No calories to worry about just full of minerals and water. BTW they clean mirrors lovely as well.
Hang on in there you will get through this and 9 days away it not so bad.
Thank you so much jinasc, i will definitely use the cucumber method, not sure I want to clean my mirrors at the moment though, better they are blurred!
I will also invest in a V shape pillow - anything to help.
I think I am doing too much, I was doing so well and am trying to continue the same and I think that is part of my denial, that I dont have to slow down, but I shall - thanks again
You've answered your own question. Remember, you are a poorly bunny right now. Coddle yourself and allow your body to heal. I think celery is a good low calorie snack too, although some people say it's too high in salt. 🥬🥒🥗
It would be surprising if you weren't feeling a bit low about all this - four years is a long time to have to go another circle on the (un) 'merry-go-round'. But you WILL be OK in the end - and this flare will dissipate - hopefully sooner than some previous ones. BUT it doesn't seem very 'fair' and all of us are spouting some indignation on your behalf I am sure !! jinasc has already offered some excellent 'advice' and I am sure others will as well - all I can suggest is you remind yourself that you will soon be 'out of the woods' again ...
Some days it all does seem unfair and too much. I could hear a collective oh no as we read about your troubles. But on the other hand you now have experience and know what to expect and how to take care of yourself. Wishing better days ahead for you 🌞
Can just imagine how you must feel- so so hard. Here’s praying and hoping that your tapering will go well and that you will soon feel so much better. Xx
Don't say only PMR, that's more than enough! Yes it has been a fast taper but trying to do what the medics say and to be honest happy to get off the really high does when I can, makes me feel pretty awful.
Thanks for your kind reply , take care
I cant imagine how GCA makes you feel and what that much pred feels like. I only took 32mg by accidentally double dosing and whiz banged all day and into the night.
The disappointment must be tangible and no doubt there are some hurdles to go over. Let your body and mind get over the shock and take care. 🌻
I also have GCA/PMR and had problems reducing my Prednisone. When you meet with your Rheumy I would ask her about Actemra/Tocilizumab, it has helped me reduce my Prednisone. I am no medical expert but I hope this helps.
I have not had any side effects. I have been on Actemra for about two years, 162mg every two weeks. It is not a substitute for Prednisone but it did allow me to drop the amount of Pred I was taking. I was put on it because I would have terrible Flares when ever I would drop below 23mg of Prednisone, I am now at 3.5mg. I started at 60mg. My prayers go with you, I know how devastating GCA can be.
The problem is that lots of rheumys are not very expert at GCA, the sharp rise in steroids and a far too fast reduction are not the way to go. Ask how many cases of GCA he has seen. If you are anywhere near Southend Prof Dad Gupta is world expert. Take care
Last year, at 4 years GCA/PMR, I had a flare. Had been on 3mg and felt almost normal during that time - then had a procedure and flared slightly so went up to 5mg. When I tried to reduce by 1mg to 4mg I was literally poleaxed on the bed - the pain was raging for 2 hours before it started to subside to something more humane. I could have pulled all my teeth out if I was able to move - my eyes were on fire as if hot needles had been stuck in them, my hips felt as if all the nerves were jutting out of my body - so painful the bed hurt my body yet I couldn't move - I was whole body shaking. I couldn't call for help - think I must have been mentally frozen too. Looks like it can come to us at any point with no rhyme or reason. That was last April and can only reduce .5mgs now. Now on 4mg and struggling each reduction. Never felt as well as I did when on 3mg for 17 months.
Rheumie thinks I won't get off pred totally - am going for my next reduction to 3.5mg. Hope you feel better soon, it's frightening - b....y drugs! You're not on your own it happens to lots with varying degrees of severity and catches us when you think you're over the worst. Sorry you're suffering so - it will improve in time.
I told my Rheumie and he didn't flinch. I'm over it now aren't I?
So sorry to hear you have been through this too Telian, so difficult to explain to others that have not experienced it.
Yes the drugs are like a necessary evil, it seems for me, personally, under about 15mg preds I cope but over that they seem to control my life, health, moods etc ....... so looking forward to the time I can reduce again just soooooo frustrating.
I should never had dropped as low, I told my Rheumy in December I was feeling poorly but No, she said nothing to do with PMR just keep reducing and BAM! So in future to a degree I will listen to my body ......... sometimes its having the confidence to do that though.
They can be so adamant "it's nothing to do with PMR" without stopping to think they just may not have seen it before, they haven't seen too many cases usually whatever they think, or that it could well be something else that needs taking into consideration.
After 15 years of PMR and over 10 years on the forums - NOTHING surprises me now!!
My Rheumie Says that doctors can’t always know what’s wrong with us - but definitely it’s not the steroids or the illness and tells me I’m doing very well!..... helpful.
Dear Lesley 2015: You are NOT shallow. I cannot imagine this. It is horrible. Absolutely horrible. I am at 5.5 years since 2013 diagnosis (GCR/PMR) having been undiagnosed for 7 months before that. I truly understand the miseries you underwent to get to 2.5 mgs. If this happens to me (going back on 60 mgs.) I just might curl up and die. I am approaching 3.25 mgs. after incurring all of those things which I suspect that you incurred in getting to these low numbers. Please don't curl up and die. This forum has your back. I don't know what to tell you to do, but there is no alternative, except to carry on somehow. Go to bed with pillows everywhere if you can. Thank you for writing.
That is so tough for you - I have had GCA for 3 years now and have struggled down to 7.5 where I have been stuck at for 10 months now, but as yet luckily no flares.
Has your consultant suggested that you should be eligible for the new drug for GCA called Actemra - it, at present, is only being prescribed for certain cases one of them being 'flares'.
Don't ever think you are being 'shallow' saying you can't bear the thought of having a moon face again, I had it for two years and it just added to the misery of GCA with all the other side effects of steroids.
Thanks Sho-Sho, well I think if I got down to 2.5 reasonably ok, if I can at least get down to 5mg I would happily settle there for a while ....... (despite what Rheumy says) - very reluctant to take even more meds if I am being honest .... but time will tell I guess.
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