Does stress in your life - emotional and physical - exacerbate PMR ?

Thank you. I never expected such great response to this question. Have god day

This stress discussion accents your answer to someone about the distribution of research based on age of patient category, possible profit to Big Pharma and current status quo of cheap med such as pred being able to do some kind of job keeping patients in a semi normal existence. 

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

Hello paul, I for one would love to see research into PMR/GCA. I was diagnosed in dec 13 at the age of 53 and I do not consider myself old although I appreciate that it is a condition that does effect the over 70's more. PMR/GCA is an auto immune condition and if research was to discover what causes it a realistic cure could possibly not be far behind. There are many other auto immune conditions that are truly cruel and life threatening, and if a cause and cure was found for PMR/GCA then wouldn't it be great if any research work could then help find and cause and cure for them too. Christina 

I think the other way round is more likely - but that said there was some research published last year that does have great promise for at least finding a way to monitor GCA better, possibly PMR, and also possibly work out better treatments if not causes.

Thank you.I guess I knew the answer but you all are so helpful. I had TKR Lt . knee in August, then fell in kitchen Oct. 23. Slipped on tray under catfood bowl. This just bruised my rt. Buttock but created muscle spasm. I was already in PT doing fine needed no can e this is what I think started the spiral.

Thank you. I don' t know how you are managing. Parents demise is such a sadness and as you say stress. My mother passed 2013 and we miss her., Thank you again for your words.They are appreciated.pat

Hi pat, presently I am doing very well with all of the past stresses dealt with. But as you say, one stress will never go away and that's losing my mum. 3 years on a I still think about her everyday, and yes I miss her so, so much.

take care, christina 

If you have had one autoimmune disorder you are at more risk of developing another - unfair but there it is. There's also no evidence that there are any real dietary factors. 

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. 

Hi padada, I am never ceased to be amazed at the additional drugs consultants attempt to prescribe for us. I'm sorry but I'm with Eileen, unless there's a medical reason for example, allergy to preds, then I am not interested in trying all these steriod sparing drugs or drugs that are not even being recommended for use as a medication for PMR. 

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 

 

Good comment Christina.  I will try to avoid taking any additional drugs if I am offered them especially the steroid sparing ones.  And the DMARDs seem exceptionally high side effect risks and are not part of normal treatment I know.  Well, I feel so sick at present, and do not see any light nor do I even see the tunnel, that I truly don't know how to cope or think about day after day of suffering.  Please forgive my whine.  I know that no one has it easy.  I am grateful for all your support.  Regards , Mary Jane

Mary Jane, believe you me when I read some of the members experiences I want to cry for them. When I was diagnosed with PMR, dec 2013, I looked the condition up online and although I didn't like what I read i thought 'oh well, it's not that nice but if I take the tablets all will be well and at least  my life will be back to normal in a couple of years time'. 

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 

Thank you Christina, you above reply to me was both generous and reassuring.  What a lovely angel you are.  Yes, it is new and scary - than you for acknowledging that - it helps to know that is probably how everyone here feels or felt at one time.  I don't know what else to say except to say feeling as sick as I do I just feel like giving up.  No need to answer me on that , I have taken up a lot of your time already.  I really do appreciate that so much.

Please please go easy on yourself, this is a nasty illness.  I have never experienced pain like it.  I told my gp and Consultant  at Endo that before pred (20mg) on a scale of 0 to 10 Ten being most painful I told them it was a 12.  I remember crying in the drs. reception and my son was with me (I was crying because I was i so much pain and locum dr wanted me to get bloods done and reception wanted to make an appointment for me.  I told her I could not come back another day, so she arranged for me to get bloods done while I was there.  My son helped me up the stairs to see the nurse.

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

Thank you Pat.  You are kind.

Pat, good morning, 'I get sick and tired of being sick and tired' that really is the best description for this bloody stupid infuriating frustrating condition. 

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 

Don't be silly padada, if I did't want to read and answer members queries I wouldn't log on! 

Anyway, it's like having lots of pen pals only you have no idea where they live and they're Ill!!

christina

For all of you - if you don't learn anything else with PMR you will (eventually) learn patience! Learning to accept that this is where you are, however unpleasant, will actually often empower you to deal with the PMR itself. Management is key - and managing can improve your quality of life a lot. And when your quality of life is better, so are you.

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.

I have made "penpal" friends on the forums who I have now met. Which is something fairly impressive since I live in Italy and am the only one here! 

Good afternoon Christina, I am glad that you are on the up and up.  It is good to be alive.  Also all the best things in life are free and that's the truth.  It's great to wake up and yes have a few twinges here and there but nothing like it was.  I am looking forward to spring and summer where I can sit outside in my patio, drinking in the fresh air.  Acceptance, tolerance and patience are the keys to peace.  Pat

Pat, I couldn't agree more. But it just shows you what pain can do to the mind! Have a good day, christina 

Yes Christina, the type of pain can bring us to a place in our minds which is not healthy, but thank goodness there is a forum like this and people like yourself.  

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.

Eileen, you are so right. I use to be very sporty and danced my way through many evening classes. Now as you say things are slightly more gentle. Being a former journalist I decided to write a book, I've got the skeleton worked out and on days when I've really not been up to much I sit in front of the fire or outside in the sun and speak into my iPad. (Wow, it's a great feature, I don't even have to use my fingers). It's a fictional drama and Bob my husband has had a peak read. He said that he thought it was actually thought inspiring but it won't amount to much as there's no sex, violence and very little swearing.

"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

Pat, I live in beautiful cornwall in a little village called stennack, near to camborne. We are about 5 miles away from Hayle beach which is simply beautiful. I now run 2 holiday cottages so in the summer months things can get very hectic. In the winter Bob, my husband, and I chill out and do lots of walking with our dog, Katie. Today there is plenty of sun but it's very very cold. Next week apparently the weather is to get much worse. So not a week for much walking. Christina 

Cornwall sounds like a lovely place and only 5 miles away from the beach.  I cannot wait to get out when the weather is better.  I haven't been for a walk in such a long time but sure it's something to look forward to.

Pat

I have just got back from our (almost) daily half hour walk. We bought our flat for the closeby skiing and moved here 5 years ago - I skied for a few years with PMR but at the tail end of one season I tore knee ligaments, skied again the following season which ended when the combo of pred and the wrong antibiotic caused achilles tendon inflammation and I couldn't walk even without crutches because of the risk of it tearing altogether and then I had a mega PMR flare. I fully intended skiing again this year - but the price of the ticket, parking or bus/train makes it silly. So I, like most of my neighbours, have decided not to bother since the snow has been rubbish anyway and we walk. It has been a beautiful winter - very little snow but also far less rain than through the summer and only hovering about freezing so sunny and pleasant to walk in the valley. We could sit on the balcony in the afternoons until the end of November - and it starts again in March. Wouldn't swop it for the world!

I am sorry to hear of your injuries. You are brave. I have never skied. not that athletic. I was in marching band and symphony in school.Then nursing ,marriage, raised 5 fine young men and now have three beautiful granddaughters and a year old grandson. I am very lucky.,just knew I was too chicken to ski. Giving anesthesia for open heart surgery didn' scare me like skiing. Now I knit it is relaxing. Learned from my Grannie when I was eleven. Hope your weather cleats up soon. Pat

Knitting was one of the things that fell to PMR - it simply hurt too much! I could knit arans with my eyes closed but turning the heel of socks defeated me!

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.