Advice please re a flare or worsening of PMR. Down to 6mg Pred after 4.5 years but feeling I was making progress. A flare in June (kid brother v sick) led me to follow flare rules successfully getting down to 6.5mg. However, he died at the beginning of Sept and the grief set in immediately. Felt v wobbly. Upped dose to 8.5mg and over five weeks to 6.5mg again. I now feel awful. Wobbly and heavy legs, tummy ache off and on, generally achy (unlike acute PMR) but the worst is an odd scalp sensation. Not exactly a headache as such but as though there’s pressure under the entire scalp (and itchy) and behind left eye. Though sight fine apart from cataracts that need treatment. No jaw ache. Very tired. Concentration low as all work writing projects v v slow., I upped to 9mg three days ago but no change. I’m worried that GCA might be lurking in the wings. Can that happen after all these years? Or another flare? It’s all so disappointing. Thanks for listening.
PMR unstable after four and a half years. - PMRGCAuk
PMR unstable after four and a half years.
From what I have learned about GCA on this site, why wait to have it checked out. I lost my son in Dec, a matter of weeks after being diagnosed w PMR. With your terrible recent loss, PMR, steroids, you would just have to be virtually psychologically and otherwise immobile. My advice is to accept what you are feeling as the natural result of all of the above. And get that tender scalp checked out!
I’m so sorry to hear about your son. I just can’t imagine how awful that must be. Sending condolences to you and your family.
And yes, it’s accepting that my body is reacting to such grief. It was silly of me to think otherwise. Take care
I agree with Merryfield. Anyone with PMR needs to be alert to symptoms like this. Better safe than sorry. And, yes, unfortunately I can speak from experience that it is possible for PMR to flare at any time. One year I was at zero for a few weeks. Then back on low dose. And approximately six months after the flirtation with zero I felt like I had at the beginning. If any consolation it didn't take years to taper back down (but not yet to zero) like it did the first time, but still a matter of months.
The disadvantages of having to take additional pred as are nothing compared with the disadvantages of untreated flare. 🍀
Thank you for your wise words. It’s so horribly annoying isn’t it thinking we are doing ok and doing all the ‘right’ things then it turns round and kicks you in the bum? !
Your experiences are so useful to us all. And the point about untreated flares is brilliant. Advice taken.,
Would say a combination of flare and adrenals struggling - and no wonder after all the stress you've encounter recently. - and my sincere condolences re your brother 🌸
Maybe follow the advice in this link re a flare - don't think you got the previous ones fully under control which probably didn't help -
healthunlocked.com/pmrgcauk...
.. I would use 7mg as the base dose, so up to 12mg - and then return to 7mg... either in one step.. or if you are a bit anxious about that in two steps, pausing at 9 or 10mg for about 5 days...
Then stay at 7mg for at least a month to let adrenals catch up, and to give the bereavement process a little more help.
Re adrenals... a very slow taper and small steps, time, resting when you need to, and patience are the only things that will get you through.
Obviously if the increase doesn't help the scalp issues you may need to address that, but hopefully it will.
PS -
My late hubby used to say bereavement is like dealing with an injury or operation ...
“It hurts like hell at the beginning, but it does heal over in time, leaving you with a scar that you can live with, but is always there to remind you of what happened”
Yes, I like your PS.
Thank you so much for your supportive reply packed with good advice. How many times have I read similar posts to mortals like me who find themselves well and truly stuck. I should KNOW by now the nature of flares. Yet walked right into it!
Is it that stoical side of our nature that just keeps coming round and round suggesting that it’ll be ‘better tomorrow’ if we can can get through another day. And surely after over four years I can cope….,
Taking all your advice as quoted. And report back. Your support to our community is invaluable. And much appreciated.
I think the flare walked into you rather than the other way around…and it happens to most when life has you on the ropes.. 😊
Take care,…
The crazy world we all share 😍
So sorry to hear about your brother. That will really have put the cat amongst the pigeons with regard to immune system, flaring and adrenal function.
I won't dissemble - yes, the appearance of GCA IS possible, even at this stage. Ask SheffieldJane However, not sure that all that may be going on - or even that it is happening. Grief may have set in immediately but that isn't the end. There is a lot of guff about "time is a healer" - it isn't always and a bare 3 months is nothing in the great scheme of things. It hit me like a ton of bricks after 6 months.
Thank you for your condolences and adding pertinent comments to those from DorsetLady.
The thought of GCA after such a lengthy PMR journey fills me with absolute dread. So I just hoping that treating this as a flare and acting on it will settle everything down
And yes I agree re the grief response. The effect on the body is massive. My ‘entry’ to PMR was through unrelenting grief on top of a very stressful working environment. Has there been much research on this particular aspect? Or just explored as a strong stressor? I have much enjoyed your research results in our posts.
I hope you are ok after such a challenging time with your husband’s long illness and demise. And still find pleasure living in such a beautiful part of the world.
I don't know there has been much research but my rheumy unit takes it as read that caring and being bereaved will have a massive effect on your immune system and almost certainly lead to a flare.
Oh yes - staying here as long as I can! There will inevitably come a point where I have to seriously consider a return to the UK but I will have to be looking at struggling with independent living. Given how the weather can make me feel, the thought of rain and wind everyday is a bit daunting! I can't really escape that in the northern half of the UK!
I lost my son a few years back. At the time someone told me “you never get over it, you learn to live with it”. I thought thanks a bunch, that’s not what I need to hear! But it’s true, you do learn live with it. I still cry at times, but then I’m ok. My sympathies to all of you for your losses xx
Of course you still cry at times…. I find it’s a song on the radio [particularly if it's one that hubby used to sing... he was always singing- fabulous tenor]., a throw-away comment from someone, a bird singing or a particular view… it’s what makes us human and shows we care. 🌸
I rarely cry - but get the pokes that could make me. I was waiting for a bus yesterday and a couple sat next to me - a wife and her very frail husband who looked so like OH.
🌸
Clare, so sorry for the loss of your son. It is unbearable but bear it we must. Add in a couple of chronic diseases and we are learning to be very tough. I weep as I type this.
I am so sorry. I lost my younger sister 7 years ago… I can understand how you must be feeling. Be kind to yourself and go gently. 💕🌺
Thank you for your supportive words. And Will remind myself to go more gently 😍
Grief is such a physical thing. I am so sorry. I think you should get your head symptoms checked out properly, esp as you are getting no improvement from upping your Pred. Probably nothing but good to be sure. Sending hugs and sympathy 😥
Hello and a huge hug from Shropshire.
I just wanted to say how much your reaching out has helped me today. The wonderfully supportive comments from everyone has truly calmed me down and given me hope that I can see this thing through.
From day one of the forum I was warned about the effects of stress on PMR. Five years later I still need reminding.
My thoughts and prayers are with all of you. Slowly, slowly wind the race. Much love.🦋💕
Which also shows how valuable reading the whole thread can be for others too.
Absolutely. Always so useful and covers so many aspects of our lives. It’s been my daily read all these five years. I really appreciate your time and effort on behalf of us all. The ongoing support is something that I have not found anywhere else. 🌸
Mmm - but loads of people don't read it all and post things that have already been linked or ask the same question themselves later ...
I know. That must be so frustrating for you. And I was a tad guilty of that as I should’ve have known what action to take having read similar posts re flares. But a mental ‘block’ pops up sometimes when we try and escape a particular reality.
How you and DorsetLady do this day in day out beats me. Our gratitude is immense. ❤️
As I've said on previous threads... keeps us out of mischief...well almost, but not entirely 😏
Thank you for this lovely reply and hugs to you too. Like you I read the posts everyday (well most days) and v v v v much appreciate the forum for its support and kindness, as well as advice from our experts. Every day they are there for us and every day I feel we are part of a special community. I bow deeply in appreciation.
I hope your PMR gradually fades away - you’re a year ahead of me so the very best of luck. I’m a tad further north than you in Cumbria. Stunning day today. How fortunate we are. Take care.
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