PMR treatment without steroids
Posted , 19 users are following.
Hello, I'm new. I'm pretty sure I have PMR and have a GP appointment today. I have all the symptoms and my blood results have come back abnormal.
I really do not want steroids! The side effects sound horrendous, but the main issues are: I spent the best part of last year losing weight and eventually lost over 20 pounds. This helped with my chronic mental health problems which I have struggled with for most of my life. I had a relapse over Christmas and new year, but have improved again. I fear that pred and weight gain will throw me into another vicious cycle of depression and weight gain.
I am also terrified of osteoporosis as my friend died from it a couple of years ago.
Would steroid shots avoid any of these problems or could I try to manage with strong NSAIDS? I'm already feeling 'delicate' and vulnerable and I've not even been prescribed anything. Can I refuse daily toxins (pred) in the hope of avoiding the misery that has plagued my life?
0 likes, 112 replies
Harrie4 pansy57
Posted
My PMR was triggered by a stressful career situation that overtaxed my adrenal system -- like living with medium level fight or flight for about 3 years. The predisposition -- Northern European and Viking ancestry -- was there but the catalyst was stress and a hyper-inflammatory response.
mary19068 Harrie4
Posted
Hi Harrie4
Yes, stress is very detrimental to our health and with your disposition you were a prime candidate for a hyper-inflammatory response. We haven't got any stress triggers on the graph yet your the first. I imagine there is many more out there. If i do get quite a few more various PMR triggers i will draw a graph see what it reveals and post it. I do hope you are managing the pain well....
Harrie4 mary19068
Posted
thx Mary, for your good work and analytical instincts!
mary19068 Harrie4
Posted
Hi Harrie4
I just thought it would be interesting to get an idea of how everyones PMR may have started and what contributed to it. The graph would show what was the most popular probable PMR trigger....
It would be ideal to have approx 100 people, but i doubt that many on forum so will make do with how many members we have, if they want to contribute..
.
Anhaga mary19068
Posted
I had a lot of stressors, plus a fracture, in the year leading up to PMR diagnosis. I don't think PMR arrives out of the blue. There may be a great many individual stressors as we all react differently to things, there may be different illnesses or other physical stress (like my broken leg) but there is a commonality: STRESS. This can be emotional, psychological, physical, financial, any one or several, but they are all causing stress on body systems, and our particular bodies decide they will react with PMR symptoms. We are somehow restricted in our lives and our bodies start to physically limit us as well.
mary19068 Anhaga
Posted
Hi Anhaga
Yes that's sooo true!...Various stressors as you say can contribute to stress being a contributor to PMR. Stress can wreak havoc on our bodies whether it be mental or physical stress.
BettyE Anhaga
Posted
I've been thinking back to when I was first diagnosed with PMR in 1999. I have recently said on here that it arrived " out of the blue" and it may well be so.
But then I began thinking about stress. At the time my mother was in her nineties and in pretty good nick. She lived in her own home just two miles away from us. She had lovely neighbours and we visited each day. The only help she needed was to change her duvet cover. She cooked and did most of her own housework She took her dog out each day. So was I feeling stressed? I'd have laughed at the suggestion. But who knows what my immune system was thinking? No wonder it's so hard to pinpoint triggers.
Anhaga BettyE
Posted
I think in my case there were several big things which had happened over previous years, one of which was my stepmother being scammed out of a very large amount of money while we did all we could to stop it but were unsuccessful. She never admitted she was wrong about anything in her whole life, so unlike a "normal" person once we knew what was going on she still wouldn't stop sending money away. That was a big thing, my broken leg was another, and also resulted in a cancelled trip and loss of most of what we'd spent on it, planning an addition to our house was another, retirement from a job I loved, the winter from hell which everyone who lived through it still remembers with pain, and with all these things building up even smaller things began to loom larger and in the end I think I just wore out, physically and mentally and emotionally, and then over a year to get a diagnosis. I thought I was dying. Not a happy time. When I read about people feeling suicidal I know what they are going through. Been there. But out the other side, although I feel I'm a different person now.
Anhaga BettyE
Posted
O damn, my long reply to you has been sent for moderation although I have absolutely no idea why, no links, only a description of things which stressed me. I wish I'd copied it before trying to post, it took ages to write.
BettyE Anhaga
Posted
Your immune system certainly had plenty to feel stressed about!
To come out the other side of all that shows great resolve and I hope will comfort those currently feeling persecuted by fate.
I know we are told " the greatest of these is charity" but I reckon Hope is up there,too.
mary19068 Anhaga
Posted
Hi Anhaga
Wow! you certainly went through a plethora of stress, it's no wonder your immune system took a dive. Hope life is treating you kinder these days and your everyday life is less stressful....best wishes your way...😍😊
Anhaga pansy57
Posted
I'm now at 2 mg pred, after close to four years, three of them below 5 mg. I'm also trying to keep the edge off pain and stiffness by using other analgesics but not every day. They do "take the edge off". Which is why I wonder if PMR is actually in remission. Thing is, I'd been somewhat stiff and achy for years (osteoarthritis) until after a year of increasing suffering I was quite disabled, and PMR was diagnosed and I started miracle pred. I had lost weight beforehand while I was ill, and have not regained any of it although I could use a bit more flesh on my bones. Had to give up nearly all carbs from grains because of my blood sugar going way up (not quite diabetes) early days on pred. That problem is sorted now, blood sugar perfectly normal, and in fact was in a safe zone within months of starting pred. Anyway I don't think I can expect to feel better than I did before succumbing to PMR, so trying to continue a very slow taper. But it was nice to have several years of feeling pretty well....
Tinapoly1 pansy57
Posted
I am up 55 lbs.in just 15 months from my PMR from the prednisone & hate it since I was thin my entire life. I eat like a bird so it is not from eating since I don't eat enough everyday. What is your C Reactive Protein number(CRP) since that chronic inflammation does damage to our blood vessels ,causing heart attacks & strokes. They said mine was off the charts & that should not be alive when it took 3 months to diagnose me. I was in so much pain I would scream when I was helped up or down from sitting & I could only walk a few steps with excruciating pain which was leading me to ending up in a wheel chair . Just last month I got up from the couch & took one step & felt a pop a. t the base of my calf muscle. I was limping & 3 hours later I was screaming from the same spot & the MRI showed that part of my calf muscle tore completely off & some of the rest of my calf muscle is shredding all from prednisone damage. Hate all this but I need to be able to walk & not have a heart attack or stroke. Best wishes !
mary19068 pansy57
Posted
Hi
Can' t post the graph as file size too big.
It shows out of seven patients 5 patients experienced stress before being diagnosed..1 experienced medication ill effects prior to diagnosis and 1 experienced disease prior to diagnosis. Would be very interesting to research a much larger group of patients.....doubt it will happen so will leave it there.....
Anhaga mary19068
Posted
Have you thought to post this as a new post? I only just read about reporting PMR trigger, so mine isn't on your graph (stress, btw).
Also on Healthunlocked forum there seems to be a way surveys can actually be posted as such, although they may have to go through administrator.
mary19068 Anhaga
Posted
Hi Anhaga
Thank you for that info., i may give it a whirl👍. If i add you Anhaga to the last survey, stress would come out as 6 out of 8 patients who experienced stress as a possible trigger before being diagnosed with PMR. Mmmmm...stress obviously high on the list so far as a possible trigger. .....Thank you again Anhaga hope all well with you after your move....More stress no doubt 🙄😣..