Does this misery ever end?
Is the chronic or acute? : Does this misery ever... - PMRGCAuk
Is the chronic or acute?
26 Replies
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PMRproAmbassador
I don't really know what you mean by that rather cryptic question but PMR is a chronic condition and some experts think the median duration of management with pred is just under 6 years - i.e. half of patients need pred for more than 6 years.
However - the vast majority of patients have their PMR well-managed with pred and a bulk of patients appear to be off pred in 4 or 5 years.
So - if that is the misery you mean, yes, it usually does end sooner or later.
in reply to PMRpro
Oh, I was told it could last from 6months to a year
I am at the one year point and wondered if not taking the prednisone was delaying my healing
You might like to read this link, hopefully it will give you a better understanding of your illness - healthunlocked.com/pmrgcauk...
Can I ask why you are not taking the Pred…have you ever taken it? If so, how much and how long
EDIT -have read profile and see you do take it but as a one off -that’s no good. The inflammation is produced daily, so needs to be controlled on a daily basis as well. Can understand your problem as a diabetic, but there are plenty of people on here who seem to manage theirs okay alongside Pred. Sure if you ask, they’ll give advice.
PMR is what is known as a self limiting disease, so for most people it’s does go into remission, but no-one can tell you exactly how long that will take….1year (if you’re extremely lucky], 2yrs, 4yrs, 6yrs or even longer (if you’re extremely unlucky).
However, not taking the medication can allow the inflammation caused by the underlying illness to damage your body…..severely in some instances.
..,and whoever told you it lasts 6months, has no understanding of the disease.
in reply to DorsetLady
Thanks for the link,
It COULD - but fewer than 1 in 5 patients is off pred in under a year and remain at a higher risk of relapse afterwards. That is usually because they stopped pred while there was still a very low level of disease activity - it lasts a long time, but a large number of patients manage on a low dose of pred and have a decent quality of life.
If PMR commonly only lasted a year then I'm sure more of us would try to manage without pred. However, quite a few of us weren't diagnosed in a timely manner and I for one had had PMR for 5 years before starting pred. I've been on pred for over 12 years - and as far as I can tell it has never gone away in that time. Several with similar stories feel that our extended duration of PMR symptoms could well be due to the time we were without pred. Even some expert doctors think that is a possibility.
Believe me, life with PMR but on pred is infinitely preferable to one without pred. I've had extensive experience of both and going back to no pred really doesn't appeal. It is very likely that what you describe as misery might end fairly speedily if you took pred.
in reply to PMRpro
I am so new to this under 12 months. Steroids seem to cause me to get bacterial infections easily. Is that a fallacy of mine alone?
I take 10mg prednisone only when I can’t go to work without it. Typing on a keyboard or turning a steering wheel to drive and breaking
When I first took it 20mg, it worked like magic but then it stopped working after a few days.
Supposed to head out of the country soon. I will have to take it for certain then, flying will be hell.
HeronNS in reply to
If the pred stopped working, did your doctor make sure to run all the tests to rule out other causes of the PMR symptoms? Differential diagnosis, partway down this page:
No - they do make you more prone to infections - but if it is urinary tract problems are they REALLY infections? PMR and pred can both contribute to irritable bladder syndromes and then infections may not get cleared out properly so it may appear you are getting more infections.
Did you try to go back to normal life once the 20mg pred kicked in? That isn't the idea - pred cures nothing, it is a management strategy that must be adapted for the individual patient and they have also to do their part, with lifestyle changes and pacing being crucial.
You also cannot use pred like a painkiller - it is a part of a longterm strategy to manage inflammation and pain to allow the best possible quality of life until the autoimmune part of PMR burns out. That may take months (very rare) or years. And taking it intermittently as you sound to be doing is probably not a good idea for all sorts of reasons.
in reply to PMRpro
You obviously know how painful PMR is, I can tell. Do you know how painful a diverticulitis infection is? Since I trust all of you more than my rheumatologist that said 6months to a year, I will try your way that works until I get another Bacteria infection in my lungs, always the first place, then into my colon. I am sick of getting infections but maybe a very low dose each day will work. Took 10mg last night and I can type easily this morning
Then you really need to get your rheumy and your GI team to talk to one another, I only know second hand how painful diverticulitis is but I am also aware of the problems with pred of the inflammation being masked and perforation developing. When it is that complex you MUST find competent medics.
Yes, 5 years of PMR without pred, not out of choice, isn't easily forgotten! Added to which I have a relapsing form of pMR so am reminded of it every so often!
in reply to PMRpro
Funny I trust you more than my worthless Rheumatologist. I fired her
KASHMIRI1 in reply to
Good morning l am sure l had undiagnosed PMR for several years. Unfortunately l now have GCA which was diagnosed in May 2020. Thankfully the steroids help. I think the time span for PMR of 6 months that you have been given is maybe from someone without much experience of PMR. maybe it would be worth trying to get a second opinion if possible. Two friends who have PMR took steroids for over two and a half years and seem ok now.
Are you saying you are not taking steroids? If I were not taking them I would be suicidal by now and would have a more aggressive word than misery! I would also be worried silly I might get GCA too not to mention building up inflammation in my body.
in reply to piglette
I am truly miserable but I also suffer diverticulitis
I had bronchitis and diverticulitis during Christmas and was on prednisone when I caught Covid again. That coupled with diabetes and PMR I was bed ridden for 10days.
I just can’t handle steroids because of infections but they seriously help with the misery but keep getting infections. Wife has no clue and think I am just a big 6’3” baby.
Nobody really understands how miserable you feel. Something does not change, I may have to quit my job. She can go to work which she has not done for over a decade.
Even pouring a cup of coffee is difficult if the pot is full. Getting dressed. Mostly in hands, arms and shoulders now.
I had two back surgeries, severe diverticulitis twice where you pass out from pain and wife is just sick of me whining about pain and I suspect she thinks it is all in my head.
What I am requesting is folks like you to share your discomfort so she believes PMR is no joke.
Thanks, your post may help
I think I am just screwed, not sure I can make it to 62 and retire. 6 freaking years is the norm?? Nobody told me that.
Worse these rheumatologist clowns can’t tell me what causes it.
I need to find a cure fast.
piglette in reply to
I am afraid no one yet knows exactly what causes PMR and if there were a cure we would all be on it. Currently one has PMR for life although it can go into remission which is good news. From what you say it does sound as if you are on not on a high enough dose of steroids. I think that would improve life for you.
in reply to piglette
Well it would help the PMR pain but diverticulitis infections are extremely painful. You pass out during contractions. Steroids are bad on my diabetes and seem to cause more infections. Sick of all the antibiotics
Looking for herbal remedies. Right now trying herbal supplements that treat livers. It is just a hunch but liver has more to do with the immune system than most realize. Fatty liver lack of enough bile may be contributing to my immune system failure. I am an electrical systems R&D engineer. I am also convinced Covid was the catalyst that initiated this mess.
If I am wrong, I will admit it. Just want to finish my legacy design before I retire or die.
HeronNS in reply to
I'm sure covid hasn't helped. But isn't diverticulitis inflammatory? Wouldn't pred help that? What dose of prednisone were you on when you were taking it? And have you received any expert dietary advice to help you with both digestive and diabetic issues? I'm harping on that a bit because my daughter is a registered dietitian and has recently started a new job where patients are referred by physicians to get advice re diet to help manage various conditions. So I know there are professionals out there who may be able to help. She is in Ontario, so the service she provides is covered by government insurance, but I expect even one session with a dietitian (a registered dietitian) could be useful for you. But perhaps you have already gone that route and are looking for other answers?
in reply to HeronNS
Diverticulitis is a bacteria infection from a hole in your colon
Diet is critical to prevent diverticulitis flare ups. Great career choice
HeronNS in reply to
One thing about the pandemic is you can protect yourself from at least respiratory illnesses by wearing a mask. My daughter-in-law was repeatedly ill with strep infections for about a year before the pandemic. As soon as she started wearing a mask when out of her home she didn't get sick again. Two years now! She, like many, many people in our community, have no intention of dropping our masks when the masking in public indoor spaces mandate is dropped in a couple of weeks, because we simply haven't even had common colds, let alone anything more serious.
Also, does prednisone harm diverticulitis, or would a PMR-level dose actually help you?
Would you be able to see a qualified dietitian who could offer advice about diet which could help with several of the issues you describe.
You will find us moaning here a bit, but mostly it's more constructive than that. We ask questions (as you just have) and the rest of the PMR tribe chips in with suggestions (as we just have, and others will). It's a great, supportive community.
I think it is hard for anyone, even a spouse, to understand exactly what PMR is like. Doctors don't know, and occasionally a medical person will join the community, having developed PMR, and they will admit that only now do they really understand what their patients had been going through. I was undiagnosed for over a year and by the time I finally got s diagnosis I thought I was dying. Pred was truly a miracle for me! The first year I did catch a couple of colds, and if I hurt myself or got a bug bite, things seem to take longer to get better, but they seemed a small price to pay for being able to move without agony. I was, apart from PMR, in pretty good health otherwise at the time. One adapts, including with activity levels. It is life changing. PMR doesn't kill us - although much to the concern of a doctor I was talking to, when I said "sometimes you wish it would" however prednisone at an appropriate dose, managed with a careful and slow taper to the lowest dose which manages the symptoms, is the next best thing to a cure. (Which, btw, does not exist. Whoever finds a genuine cure for PMR will probably become a very rich person!)
in reply to HeronNS
I definitely can relate to the death thing.
3yrs ago I was misdiagnosed with liver cancer. The pain was unbearable but by the time I got to the Cleveland Clinic I assumed instead of a transplant I was heading to hospice. Said goodbyes and was eager to get off this stupid rock. It was diverticulitis untreated for 6months. Not sure what happened to the 1.5cm tumor on my liver. It was gone.
I think it must be my calling to suffer. Maybe that’s how my family evolves into human beings. I definitely have empathy for those suffering….most medical personnel, not so much.
I know one thing that really helps and is legal here in Indiana, delta 8. My employer just does not want their R&D engineers doing THC. They test our hair samples. I had to, just to get off and on a toilet until they scheduled a appointment to see a rheumatologist and got me Prednisone two months later. Two months of that I could not take. Wife is a tiny 5’6” female , no way she could assist me off and on a toilet. I am a very tall, lean but twice her weight.
I have no need of any more money. I would give away the cure or buy it for those in need. If my most beloved pet had this, I would put the poor thing down myself.
Prednisone sometimes does not do squat. If I get where I can barely move out of bed not taking prednisone for couple weeks, then I take 10mg, the next day I am much better. If I take it daily, it stops working. Ever had that experience?
HeronNS in reply to
You're in Indiana? My parents lived in Indianpolis for years. My father died, unfortunately, after only about ten years, but my stepmother survived another twenty, remarried.
in reply to HeronNS
I love Indiana, lived all over the US and even outside the US. Moved 39 times.
Favorite place is Eastern TN
Worst, NY, Chicago IL, CA.
Southern IL was great.
Miss the ocean bad, ex-Navy
Nightingales in reply to
Hi, I live in the UK now but lived in Knoxville for 10 years, beautiful Smoky Mountains. Go vols!! My husband had severe diverticulitis and his gastroenterologist treated him with high doses of prednisolone, so maybe a second GI opinion is needed. What helped or he would say cured him is very counterintuitive, fibregel, recommended by his GP , a sachet every day, it’s been like a miracle. Try not to get too discouraged. I found I gradually sorted all these things out and have a fairly good quality of life now but I couldn’t do it without prednisolone.
in reply to Nightingales
That was a big help, now I need to buy some prednisone but fired my rheumotologist
2 month wait
Nightingales in reply to
I wouldn’t advocate buying prednisolone over the internet or wherever. You need a plan and dosage prescription from a dr.
Hi. I’m diabetic and am concerned about my blood sugar and steroids. My rheumatologist doesn’t shut up about it!! I started a low carb diet last year which was surprisingly easy. My protein portion comes from anything from a veggie burger to fillet steak. I have this with salad or veggies or stir fry. I often have chicken or prawns with some salad and cottage cheese as it’s high in calcium. Sometimes you don’t feel completely full but tell yourself you’re doing well and it’s all good. Oh and drink lots of water. I have two 2 litre bottles in my fridge that I fill from the tap and sip all day. It’s not easy and we didn’t ask for it but pred side effects do ease so please take them. Good luck.
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