This article posted on a Facebook group has scared the bejasus out of me. If PMR is a form of vascultis is it more likely for example I will get vascular dementia or heart problems?
Can inflammation cause other problems later on? - PMRGCAuk
Can inflammation cause other problems later on?
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tangocharlie
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Not allowed to watch this without signing up.
I got round it somehow, I didn't sign up but I had to disable ad blockers for that site. There was a button saying proceed to article or similar
Okay, I did pause the ad block. What I always find so discouraging about articles like this is I in fact don't have the risk factors, I don't smoke, I eat a healthy, well-balanced diet, avoiding junk and chemical additives, etc, I exercise. Never any problems with cholesterol and blood sugar easily controlled through diet. The only new thing I've learned since developing PMR in spite of a healthy lifestyle is to avoid stress. So I suppose we all have to die of something....
Found this:
ncbi.nlm.nih.gov/pmc/articl...
Thank you for that. Looks like I'm doomed, if the cumulative dose of Pred doesn't get me the inflammation will. 'The magnitude of risk was higher in early disease and in patients younger than 60 years at diagnosis'. So I might as well stay on steroids, at least they cure my brain fog and fatigue. And as I've said before I'm here for a good time not a long time!
“And as I've said before I'm here for a good time not a long time!”-
There’s a lot of truth in that - and enjoy today as if it’s your last day...because one day it will be!
No point worrying about tomorrow - live life with a sensible but enjoyable diet and lifestyle.
Even the healthiest person can get run over by a bus! Or in the case of deepest darkest Dorset - a stagecoach!
From that I found this link, you know how it is, one link leads to another and suddenly you've been on the internet all afternoon! Unfortunately for me you have to buy the paper to read it - I'm curious what it says, don't suppose you or anyone else interested in these technical articles know?
It's all about management of difficult PMR and GCA
ncbi.nlm.nih.gov/pubmed/314...
Slightly off at a tangent - but I’m going to have a bit of a rant -
“Systemic corticosteroids (CS) remain the mainstay of treatment for both PMR and GCA, yet both relapses and CS-related side effects are common”
If someone cleverer than us mere patients studied why relapses are common, they might come to the conclusion that so called “difficult cases of GCA and PMR” would be less difficult and relapses less common if the doctors let the patients take the correct level of Pred to control matters - instead of trying to rush things. Plus side effects are no more prevalent with Pred than any other powerful drug.
Totally agree. I think I'm in this mess partly because it took too long to get diagnosed, I was started on too low a dose of Pred (10), and weaned off it too quickly. But we are where we are, so now what? PMR does seem to be a different animal for us 'youngsters'. I'm just hoping the depo-medrone injections I'm now on, combined with holistic lifestyle changes like diet and minimising stress will work.
Let’s hope so....and stress is a factor... for me and GCA it was definitely the major contributor- in fact, the only contributor.
👏🏽👏🏽👏🏽👏🏽👏🏽👏🏽👏🏽👏🏽👏🏽 Yes! I applaud you! 💐💐
Why am I not surprised it was 9n FACEBOOK.
No fact checking, advising whacky cures, how pred is bad for you, when it is one of the most powerful medicines we have, all the side effects (83 of them and all able to be sorted out).
Posters and Patients confusing pred (because it comes under the 'steroid' group and the only one they know about is 'anabolic'.
Stick with us................and keep away from Facebook - less stress, which you do not want at all.
I'm on both, there are plenty of poor souls suffering with PMR on Facebook, and they tend to be the younger ones, given no information other than put on steroids and left to get on with it. I like Facebook, it's good for all sorts of group, you name it, there's a group on it. You're right though, that article is not evidence-based and just general, so not worth worrying about. I do agree with the article that inflammation is probably very common yet rarely diagnosed, it took me over a year to get a diagnosis.
tangocharlie, you wrote
" there are plenty of poor souls suffering with PMR on Facebook, and they tend to be the younger ones, given no information other than put on steroids and left to get on with it. "
So why not direct them either here or Patient.info. Hard information on both sites.
Oh I do, that's partly why I'm on there, to spread the word. I keep posting things like links to HU and pmrgcauk, and have told people about meet-up groups etc. There is a lot of good information in their files section too.
Even if there is, what can you do? No different from having any other disease and it coming back or a bad byproduct ; it might do, it might not. To my mind it is no different to anyone else but they are not worrying because they’ve not had a problem yet, but you have the seeds of worry. Without evidence that is what it is, just worry. Statistics also are no guide for the individual. They can be useful when having to make a decision but other than that you don’t know what camp you’re in, so make the most of it because we don’t have a crystal ball.
You can read it in a positive light; we got PMR, some other people are heading for heart attacks and dementia. We have all been enlightened by our condition and will be healthier for it. (Well, that's my take on it and I am sticking to it). 😉
Thank you for sharing. Vx
I'm inclined to believe you're right. As we are on meds to reduce inflammation and also more likely to be taking steps to improve our health, like eat well and cut stress, that's probably a good thing.
There is the saying "What can happen will happen". But not to everyone. Some may or may not get vascular dementia or heart problems. Theres too many variables to consider for each individual surely. If I new that PMR was this annoying to live with before I got it or that I might get it I would have wasted time worrying rather than living my life perhaps.
So true, worrying doesn't solve anything.
PMRproAmbassador
If it were left unmanaged, possibly. I haven't written it recently - but I often have a little sermon about it not being a simple equation of pred bad, no pred good. No pred means increased inflammation which is known to be a risk factor for a lot of things including cancers. There is no real evidence that having PMR leads to increased mortality but it possibly does lead to increased morbidity.
There are a few reasons for increased rates of nasties in the early stages of any chronic disease and they aren't all because (in our case at least) PMR caused them. We tend to be under increased medical supervision, the PMR may be due to the underlying disorder they find.
But I was 51 when it started, wasn't diagnosed for over 5 years, I haven't been off pred since (more then 10 years) and tend to need more than 10mg/day for comfort. And???? I am still in better general health than considerably younger members of my family and able to do most things I want to, I'll take quality over quantity any day.
Most certainly quality over quantity.
Can I ask?....... Why have you been on PRED for such a long time .10 years?
Because I need it. I have reduced to well under 10mg a couple of times but then later had a flare requiring more so never got to really low doses. I had had PMR for over 5 years with no remission of symptoms before I ever got offered pred - and even then it wasn't because the rheumy thought I had PMR. He wanted it to be an inflammatory arthritis - despite no signs of joint symptoms and a superb response to 15mg pred in under 6 hours. The doctors here are happy it is PMR - or, at the very least, something that responds particularly well to low dose pred. It is just one version - there are a few others with very similar stories on the forums: young at onset, normal range blood markers, good response to pred. But it doesn't want to go away.
OMG........i don't want 10years.
Neither did I - but 10 years of pred has been far preferable to another 10 years of PMR and no pred.
in reply to Stifffingers
I don't think anyone would want that. But if it's the case it's the case. I am just negotiating a 3 to 7 day increase back to 10mg from 7mg as symptoms have been poking me this past few days and my fatigue and achey legs could be fibro flare, ibs flare or pmr flare. Tried pain killers and buscopan no joy so it's pred test now. I am 4 years in and know pmr still active if I have diet, stress or other issues.
I'm going into my 9th year with it and PMRPro and I were the same age when diagnosed. I came off steroids in 2017 due to doctors nagging me and also wanting to be rid of Pred side-effects and lose the extra weight, but the PMR hadn't gone and now seems to be back with a vengeance and even harder to manage. As PMRPro has said, the battle is not to get off Pred it's to get rid of the inflammation.
Whatever this version is it does seem to dislike you flaring because of too low a dose of pred and gets its own back!
"I'll take quality over quantity any day" - I love that, a phrase I might need to use when talking to doctors telling me about the dangers of Pred ..... And thanks, I've just learned something new, the difference between morbitity and mortility!
I am also going to quote quality of life over suffering needlessly. I don’t want a long painful or miserable existence who does. I will ask the opposition what would they choose? It must be hard to consider ir imagine if you don’t have to.
in reply to Estellemac
I have this constant thing with Dr over pain klers and sleeping pills. I don't care if I my life is shorter. When I don't have sleep or pain relief (other, not pmr pain) then life is miserable. They also recommend that losing weight will help. The twice I have lost significant weight (after first loss I developed hypothyroidism) the pain hasn't decreased at all.
tangocharlie in reply to
I've battled to get sleeping tablets in the past because high doses of Pred caused insomnia, and doctors always refuse saying they're addictive. Yet they put people on meds like statins for life. And good sleep would be so restorative to the body. I know two women who have been taking long term sleeping tablets and they're the healthiest people I know. It's no wonder people resort to buying them from dodgy websites.
in reply to tangocharlie
I would be tempted to try and get some thing for sleep. Without pills I don't sleep more than an hour or two for 5 nights. Then sleep through exhaustion and then none for 5 nights again. I am then like the walking dead. 🤯
tangocharlie in reply to
My GP refuses point blank, no negotiation.
in reply to tangocharlie
Hoping they are going to prescribe nerve pain meds that are said to aid sleep. I will taper sleeping pills if that happens.
Umufu in reply to
That is me .... even sleeping tablets (Zopiclone) don’t make much difference. Getting through a lot of reading backlog.
I guess that's a good way to look at it, catching up on reading. I've changed my sleeping pattern to accommodate now I'm nearly retired. As I don't get to sleep until 2 or 4 am I sleep until 9.30 or even 10 if there is nothing I need to get up for. That's of course with about 3 times waking up and needing to wee in the night. Don't fight it, go with the flow is probably the right approach, or when life deals you lemons ......
in reply to Umufu
Yes zopiclone for me too. I have to take 11mg to get sleep. I have been on them for 15yrs or so but do detox when they stop giving me 5plus hours of sleep. And accept I won't sleep sometimes. I am lucky that I can't work so nothing to get up for. I have had a few does with different Dr's holding onto them.
Estellemac in reply to
Not sleeping is one of my main issues. I have recurrent nightmares/vivid dreams about the most stupid pointless things. I wake up angry and more tired most days. This causes me to overeat I believe. Comfort eat? I don’t know? Once I had sleeping pills my attitude mindset and outlook improved vastly. My sole focus was not what can I eat next. I was more active so could distract myself and not even think about food. I find it extremely difficult to sit about and not eat. Tele has food on it all the time. Books have food in and shopping is FOOD!! I’m a food addict. A sleeping pill or pain killer addict is restricted by GPS to stop them becoming a really good addict.
in reply to Estellemac
I eat more when I am up all night. I always say food is one of the worst addictions.... You can't live without it. I know the feeling of feeling like a food addict. All I need to do is watch man vs food or something with meat being butchered and cooked and these days my appetite goes down a bit. I have found low carb to be easy but had to eat carbs for 6 weeks and it's taken 3 weeks to almost get back. In the rhythm. I am at the hospital and have lost the 4 kgs I put on on eating carbs. I do detox with sleeping pills every few months and used to detox pain meds but since pmr didn't want to disturb the norm.
Estellemac in reply to
I know if I stop carbs mainly the simple ones I’d loose weight. I’ve got to try harder it can be done. Reading the responses to this stream gives me the support I need. Thanks.
in reply to Estellemac
I just dropped 25% of carbs in week1 and am probably at around 60g to 80g at the moment. I don't buy things in I bulk... I probably get2 days of food so the temptation not around. I like a bag of crisps and get frustrated cos a multipack is 25p more.... But i would just eat them if I got a pack. I put bread in the freezer and try and forget it's there. I understand the addiction.... I have lost 20kg and still nowhere near where I would like to be by my 60th in 2021.
The book mentioned in the other article I posted about sugar addiction might help you - The Blood Sugar Solution 10-Day Detox Diet: Activate Your Body's Natural Ability to Burn fat and Lose Up to 10lbs in 10 Days by Dr Mark Hyman. I looked at the preview and it talks about breaking the food addiction. He reckons it sorts out autoimmune problems and all kinds of hormonal and metablism inbalances.
Free preview: read.amazon.co.uk/kp/embed?...
I’ll give it a look. I enjoy reading it’s also a good distraction thanks.
I'd imagine the stress you're under with the home things probably affects things too
Purplecrow in reply to
Scoopitup, Ditto what you say!! I don’t want long life without sleep and with pain! Granted, some degree of both is tolerable, but I do have limits...therefore, pain pills, free use of prednisone (within reason), and all the comfort treatments, eg, acupuncture, massage, etc, are part of my self care.
I have no drive to get off prednisone, although I continue to conservatively taper. Any niggles that indicate possible flare, and the taper stops, till it’s time to try again.
Kind of like my new hobby in my 73rd year.🤪
regards, Jerri
PMR diagnosed 2013.
in reply to Purplecrow
A life of self care sounds perfect.
A positive outlook on life is a big protective factor. So I have a chronic illness. I still do what I want. Just a bit slower. I give a little bit of time to help those less well off and keep life in perspective.
A great philosophy and attitude x
I do the same shopping but have a tendency to go in a cafe for a brew then the temptation grabs me. But I don’t buy anything to snack on in the house. I’d eat it all in a few days.
Yep, me too..
Over Christmas we met our son’s fiancé’s grandmother aged 98.
This amazing woman had PMR for 10 years between the age of 70 and 80 and during that time was on Pred. She is extremely bright, young at heart and in good health for her age. She gave me hope for the future and I do hope that it will re-assure everyone that with the help of Lady Luck —- it is possible to live one’s life out in reasonable health.
Interestingly our future daughter -in-law’s Mum, daughter of the above lady has also had PMR and GCA for the last 5 years.
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