Does stress in your life - emotional and physical - exacerbate PMR ?
Posted , 7 users are following.
I had my first flare at age 61 have been off plaguinyl and pred. For at least two years. Was tapered off both very slowly , first pred. Then the plaquinyl. Had both hips replaced due to a vascular necrosis from prednisone. Relapsed last week during severe cold snap but had lab levels checked due to familiar symtoms. Take care of husband with Parkinson's - he uses walker and won't get glass of water for himself. His balance is not safe without walker.
2 likes, 38 replies
pat38625 pat73046
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Some of the more experienced on the forum will be able to answer your questions. I would be lost without this forum. Hang on in there in the meantime.
pat73046 pat38625
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EileenH pat73046
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Stress definitely makes PMR worse once it has developed - but so can bad weather, cold or wind are especially bad, and a lot of other things.
Sorry to hear about your problems - be careful with your balance too, lots of people found PMR affected theirs too.
paul45653 EileenH
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The point of this being, there are other maladies which come about from a chain of stresses, but which are treated and then are gone. It would seem that some concerted research could unlock the mystery of PMR/GCA's extended life. The attitude by medical community toward aged patients invades the whole spectrum of disease. "He's lived this long. We've done our best, let's move on". Or "That's the best we can find out about this problem, he'll have to live with it" These are my impressions of what the attitude is. Under the current systems, this may be the most difficult task.
Paul
tina-uk_cwall paul45653
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EileenH tina-uk_cwall
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pat73046 EileenH
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tina-uk_cwall pat73046
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pat73046 tina-uk_cwall
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tina-uk_cwall pat73046
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take care, christina
bob73443 pat73046
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I am convinced that, at least in my case, stress was the final straw. I feel bad about the kinds of things that stressed me out when all this started for me about a year ago,especially after reading about many of the poor souls here on this forum, but I had always thought it uncanny that my symptoms began exactly and precisely when my personal stress levels were higher than ever.
Hang in there and stay in touch here on the forum. These are a bunch of great people.
Padada pat73046
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But I would like to know more about the wisdom of taking plaquinel - which one doctor mentioned he MIGHT want me to try. It can cause los of sight i have read, which is not something I think should be risked. Also I don't think it is usually given for PMR. Any insight into plaquenil and PMR. I am not considering it at all at this time.
EileenH Padada
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Plaquenil is used in some autoimmune disorders as it suppresses the immune system. Maybe your doctor thinks it isn't simply PMR or maybe he has tried using it in PMR before and had some success. The bit about vision is that you need to be keep a close eye on (sorry ;-) ) to make sure it isn't doing any damage. You get warning signs.
tina-uk_cwall Padada
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Because drs are so keen to get us off the preds because of their side effects they don't get it that that prescribing a different drug that actually has even more, and even more extreme side effects is not the answer.
I read that some patients on this site are not even into their first year of this condition yet they are all ready being taken off or having their preds reduced and having another drug introduced. for gods sake, if they stuck to the guidelines I believe there would be fewer patients scared, anxious and sometimes suffering needlessly from the UnI recommended drugs.
I will fight tooth and nail to avoid change of preds because unlike a proper documented trail I believe many PMR/GCA patients are taking part in unofficial drugs trials, call me a conspiracy theory freak but that's how I feel. Regards christina
Padada tina-uk_cwall
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tina-uk_cwall Padada
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Well you come on a forum like this and you realise that PMR is not as straight forward as its made out to be and the duration is more likely much much longer than the duration you read about.
Then of course you read other sufferers experiences and the trouble they have just accessing a decent care plan and I pray that I never experience anything like that as I really don't know how I would cope.
i also think that PMR/GCA is a very lonely condition. sometimes when I get depressed or anxious I don't want to bore my husband stupid, although since I first started with the symtoms I cannot believe just how good he's been. He really has stepped up to the mark.
When the preds really kick in believe me you really will feel ok. I was doing grand until I attempted to reduce from 9 to 8 and then all hell let loose and although I'm now back up on 10 mgs I don't feel as confident as I did at 9 mgs and experiencing my first flare was a real disappointment but as I said for almost a year I felt great on the drugs and although I knew I was still ill, because the preds simply mask the inflamation, because I was doing so well I very often didn't think of myself as Ill I just took the preds and got on with my life. Now every time I will attempt to taper I'll be worrying that I'll experience another flare.
But you know Mary jane you will be fine because of all your friends here on the forum. I like most people have learnt so much about what to look for, what not to worry over, what additional medication to steer clear of if possible, eg, alendronic acid for my bones and what I can take as additional suppliments that will help keep me as fit as is possible, eg, calcium, magnesium, vit d, and vit c. But I think you are very new to this that everything seems scary right new. Well most of us will have this condition for at least 2 plus years and in the end we all just have to get on with it, but with all the support of our friends on this forum. All the best, christina
Padada tina-uk_cwall
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pat38625 Padada
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I get sick and tired of being sick and tired, there seems to be no end to it but I am still grateful I am breathing and there were times before diagnosis that I was disappointed I woke up. But I had to reach in deep and tell myself you have so much to live for and so much to be grateful for. Padada hang on in there, the people in this forum really do care, keep your chin up and believe me there is light, and maybe we just haven't reached it yet, but this I no for sure there if definately light at the end of the tunnel and some tunnels aren't really that long. Take it easy.
Pat
Padada pat38625
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tina-uk_cwall pat38625
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Your last paragraph was me also prior to diagnosis too, and now things have calmed down somewhat when i look back I can't believe that I thought that way. In cornwall we had the most fantastic summer last year and every morning when I got up and went downstairs to let Katie, our dog out in the garden I was 'smacked' in the face by the most beautiful smell from my honeysuckle. Yes I am so pleased to still be alive! Christina
tina-uk_cwall Padada
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Anyway, it's like having lots of pen pals only you have no idea where they live and they're Ill!!
christina
EileenH tina-uk_cwall
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One lady used to do outward bound type activities and in the space of weeks was almost in a wheelchair. She had plans of working a lot with a dog rescue charity on retirement, that went to the dogs literally. Big change - but she has found other hobbies and makes cards - which have raised large amounts of money for both a PMR charity and her dog charity.
Life may not be the same again for a long time, maybe never - but you will be surprised what can turn up in compensation.
EileenH tina-uk_cwall
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pat38625 tina-uk_cwall
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tina-uk_cwall pat38625
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pat38625 tina-uk_cwall
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Don't know where you live. I live in Belfast and there is a huge storm here, bad wind and rain. Not a day to go out. Enjoy the rest of your day.
tina-uk_cwall EileenH
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"oh you think it needs some sex do you?" I said.
"Yes definitely" he replied. "Do you think we should do abit of research now, so that when you come to write about it, you can write from experience"
"no, you're alright there" I replied, "I'm a former journalist, so I'm very good at making things up!"
christina
tina-uk_cwall pat38625
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pat38625 tina-uk_cwall
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Pat
EileenH pat38625
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pat73046 EileenH
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EileenH pat73046
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My grandchildren are teenagers, 2 blood, 1 step. I was late 20s before children but mid-40s as grandma. Nat started early. Shame she'd not met one of your boys as her soon-to-be-ex and the word fine aren't compatible I'm afraid! Lazy - except she thought he was laid-back. If he were any more laid-back he'd be dead.