I was diagnosed 6 weeks ago with pmr, gp prescribed 30 mg daily pred, without further ado. Took the magic pills (once). The magic worked. Then i read the side effects brochure. Im a scientist and used to assessing medical research. What a mess pmr research is in. Almost no definitive answers to any of my questions. All studies low quality or anecdotal. I dont want to take steroids long term, so have stopped. How will i get on? There are forms of madness promised by steroids, adrenal malfunction for the rest of my life, double the risk of fragility fractures, 1.6 times the risk of cataracts. Why does anyone start? And lots of you seem to continue to suffer even on pred. Help?! Please. Is there anyone out there surviving without pred.
Just setting out: I was diagnosed 6 weeks ago with... - PMRGCAuk
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Hi TyeBach,
It’s all risk/benefit. I have GCA and the risk of side effects from prednisone was more acceptable to me than the risk of blindness. There is nothing like prednisone for getting the inflammation under control. Wishing you the best,
Fm
DorsetLadyPMRGCAuk volunteer
Hi,
And welcome,
The $64 million question that most new patients ask....wish I had a dollar or pound for how many times I’ve read that.
Many refuse steroids at the beginning of their journey, but find that after trying other methods of controlling the symptoms including diet, supplements, alternative therapies have to eventually admit defeat and go down the route of Pred
I appreciate you do not want to take Pred - who does? Who wants to take any medication? But sometimes you have to. You as a scientist must appreciate that
If you don't take Pred, then left untreated your PMR will probably get worse before it gets better. Most people go into remission when the underlying PMR goes away, but not always.
There have been posts about natural remedies before, and I guess some people may get through without steroids, maybe through choice or mis-diagnosis or maybe a milder form of PMR. However I doubt many are on this forum, they probably see no need for it.
However, there are people on here who were virtually bed bound before diagnosis for many months, even years, and Pred has turned their lives around, given them back the ability to enjoy it almost pain free.
I'm sure in days gone by many people got through PMR because it wasn't diagnosed, but what quality of life they had we'll never know.
If it doesn't go into remission quickly (unlikely) then your blood vessels are likely to become more compromised by the offending cells in their walls making it more difficult for the blood to flow around your body bringing the necessary oxygen, energy et al to your muscles. Also you may be more liable for it to morph into GCA (not a given, but certainly a possibility). The blood vessels affected then are the major ones in your torso, and those in your head. In your torso it can/may lead to aneurysms, strokes, heart attacks; in your head it may lead to partial or full blindness. Would you refuse a tried and tested medication that stopped you having a heart attack or stroke? Would you refuse a tablet that stopped the possibility of blindness?
As I had GCA maybe my views are slightly more biased towards Pred than others. Taking them can be scary, but they have given many people their lives back after being virtually bedridden at worst, extreme pain at best pre diagnosis, and for many others with the more serious partner in crime - GCA - have saved sight.
As I said, I am biased, but, unfortunately, I do have the t-shirt to back up my opinions!
I had undiagnosed PMR/GCA for 18 months, tried all the painkillers, both OTC and prescribed, physio exercises, steroid injections in shoulders to no effect, eventually after having a blurriness for 4 days and losing sight in right eye.
On diagnosis in hospital A&E was told that there was a 50/50 chance I could lose sight in remaining eye. I took that first dose of Pred as fast as I could! Plus I had to wait another 2 weeks before it could be confirmed that my other eye was okay. The longest and scariest 2 weeks of my life. I wouldn't want anyone to go through that!
I do not intend to scare, but I do say, think very carefully before you reject Pred. Yes there are plenty of unpleasant side effects, but most can be managed. I started at 80mg and it took me 4&half years to get to zero. I did have slightly raised eye pressures and blood sugars for a few months but no extra intervention required, both returned back to normal. I did have a cataract replaced, but who’s to say I wouldn’t have anyway. I’m no madder now than I was pre Pred (but that’s not saying a lot!). My adrenals were a bit sluggish to start with, but now after being off Pred for 2 years they are completely fine.
You are correct in saying the research and information is patchy - but until very recently it was thought of as an old person’s illness (70 years plus) - it’s not entirely, there are many who first got the disease in their 50s. Plus more females than males succomb. No ageism or sexism there then!
Take care, and think about this scientifically- no drug is all good...or all bad.
Hello DorsetLady - A very heartfelt, balanced and informed reply and, as you say, you have the T-shirt and all...hope that TyeBach gives due consideration to all that you say.
So well put!
I don’t know why anyone would risk their sight just to avoid pred. I was diagnosed 6 weeks ago and I have no intention of stopping pred until the right time. My biggest concern was whether my gp would start tapering too soon. Good luck with your search but reckon you will be back on pred before too long. Take note of Dorsetlady post and you might change your mind
in reply to Yellowbluebell
I have classic pmr. I have changed my mind thanks to useful, verifiable stats from pmrpro. My decision. Everyone makes decisions differently. For me, by the way, there are worse things than blindness. The side effects brochure offers me one such. A place i wish never to revisit. I am going to play the odds. Thanks for your good wishes....
Valnvaughan in reply to
Good luck. I am a scientist by training too. I took Pred on diagnosis because my legs would not move! I did read and worry about side effects ( there is a good review by French doctors on PMRGCAuK links page....worth a read). I’ve had a few too ....eyes, ears, nasal, pre- diabetic, weight gain, moon face, depression etc. In my 3&1/2 years. And the Pred dose masked the pain of a deterioration in my hips, that has resulted in two hip replacements this year, but this would have happened anyway the doc says. Would I make the same decision again? You bet! I’m on 2.5 mg per day reducing with no increase in symptoms.....there is light at the end of the tunnel. I have a lot of walking to do.
All the best. There is always someone here to answer any questions. Valerie
in reply to Valnvaughan
Thank you valerie. Travel well
Hi TyeBach. Some of us have absolutely no choice but to take the steroids, I have GCA and if I hadn't taken the high doses i.e. 60mgs of pred, I would be dead by now. I don't know how you would fair with PMR.
Some folk take a combination of drugs as "steroid sparing" but these drugs have significant unwanted side effects.
You are so right about the lack of information out there. It can take a long time just to even diagnose these diseases.
PMRPro will be able to help you with more information.
I think that reading all the issues en masse is hair raising and I think
Pred gets such a bad press compared to other drugs that are just as ‘bad’. I’m not sure any people here are blindly taking it because they’ve been told to do it without question. They take it because otherwise they’d be crippled with pain. Those with GCA have their eyesight to protect and enough of us have been inadvertent before and after examples that we know it did the trick and stopped the slide into blindness. Another consideration is the effect on the arteries due to unfettered inflammation causing ischaemia and aneurysms. Actual research may be “in a mess” but I think there is enough to know that for now Pred does the trick and the anecdotal evidence is enormous. Many of us have avoided some of the worst side effects with lifestyle and diet choices. I have to say I’m much happier taking Pred than some of the drugs I had to have for cancer, one of which was just an antibiotic that left me crippled for two years. I have to say this condition or any autoimmune condition really makes one feel out of control and when the external world is not offering concrete assurances on top of scary drugs it is hard to keep the toys in the pram. So, if you are lucky enough to keep a good quality of life without Pred, fantastic, but I’d be worried about the unseen potential damage that might be occurring, not least the development of GCA requiring much higher doses. Yes we all go a bit potty on it until the doses drop but we get through it, especially with forums like this to help.
Do tak care!
husband had the classic symptoms of PMR for two years and carried on thinking it was simply arthritic pains and limitation of movement then more pain in one side of neck and soeness over top of head plus dificulty in biting and chewing so he reluctantly agrred to see GP.
She sent off bloods.
Next morning a phonecall - come to the surgery for 10.30.
Arriving ther he was told to drive to the Rapid Assessment Unit in the Maelor as fast as he could without breaking the speed limit!
Diagnosis PMR and GCA (confirmed by biopsy).
So do some more serious thinking!!
Thank you all so much! I already had a shortlist of reasons i might take longterm steroids, and avoiding gca and blindness is on there, as is avoiding aneurysms, and being fit to help aged OH through his own journey should he need me. He seems pretty robust at the moment! Getting my left wrist back was another possible reason (anyone know about R3pse). Apart from wrist, nothing ive got now is bad enough to justify.
I really didnt mean to undermine your choices, which with gca or bed-boundness seem sensible. I guess i will end up in the same camp soon.. at least i have been referred to a rheumatologist, who might be able to answer my questions about incidence rates of various effects.
Keep chatting and thanks.
"who might be able to answer my questions about incidence rates of various effects."
I doubt it somehow and I wouldn't hold my breath!
Several of us on the forums have RS3PE syndrome - at least, I know of a few on the patient.info forum. But you mention "left wrist" - are you sure it might be RS3PE rather than carpal tunnel syndrome? Which is also associated with PMR.
Ten years ago there was next to nothing available in the way of support. Five ladies met on the patient.info forum and get together to found charities in England, there was already one in Scotland. Our close contacts with some of the top names in the field plus personal experience mean some of the patients know more about PMR/GCA and pred than a lot of doctors who haven't had it or used pred.
in reply to PMRpro
Pitting edema on back of hand and can’t make a fist... fingers like sausages, looks like all the pictures. Some papers say its sometimes not ‘symmetrical’ . When very swollen i also got carpal tunnel, an old adversary. The swelling went down straight away on taking 30mg and has scarcely come back despite no further doses with the benefit that carpal tunnel effects also gone. Still cant use wrist or make a fist. Apologies for all the medical details, everyone. ! You are all such a great help. GP understandably not into the nuances. Disappointing to hear the same may be true of rheumatologists. Good job you are out there.
This is one place no-one minds about medical details! My entire family has been/is NHS - dinner discussions can be technicolour...
piglette in reply to
As the others have said it is a toss up between blindness and also being totally housebound against steroids which are a wonder drug with side effects. It is unlikely anyone would get all the side effects and some people have none at all. I was told I had a virus by my doctor which went on for months, in the end I saw a rheumatologist privately who diagnosed me in about five seconds. The steroids worked in about fifteen hours like magic. From what you say it sounds like you may have PMR, personally I don’t know if I would be prepared to run the risk of not taking steroids. I do agree it is a bit of a catch 22.
in reply to piglette
I expect I’ll take them. just take six of these each day and I’ll see you in a week doesn’t work for me. I must be a nightmare to treat for someone who has less than ten minutes to talk me through a life changing condition. Sounds like i am very lucky to be diagnosed so clearly so soon. Thanks so much for your help.😀
piglette in reply to
I must admit 30mg is a pretty high starting dose for PMR, the normal starting dose is 15-20mg. (Fewer tablets too!)
PMRproAmbassador
You are unlikely to find many here doing the PMR journey without pred - but I can assure you that life with pred is not as bad as you seem to think it will be! Most people manage to get to below 10mg and then you are on a physiological dose - about the same as your body makes in the form of cortisol daily so you survive, without it you become very ill and possibly die. But long term pred use does not necessarily result inevitably in adrenal failure - most patients are able to reduce their dose and get off pred. And even if it does - replacement therapy works well.
Untreated PMR is more likely to progress to GCA with the attendant risks. Unmanaged inflammation in the body is also causing damage, predisposing you to other long term risks including peripheral vascular disease and cancers and GCA may increase the risk of stroke and aortic aneurysms.
I have had PMR for over 14 years, have been on pred for over 9 years. I have no identifiable adverse effects - even if I could do with losing a few kgs. I was still 51 when it first manifested. I lost most of my 50s to PMR. If PMR were to burn out in 2 years as is so often claimed then no pred might be worth thinking about. But I had had it for 5 years with no pain relief, only pred does that. I probably have the version that may last life-long. Pred gave me my life back - and still does so. I have atrial fibrillation, probably caused by damage to the cardiac electrical system that governs heart beat. When the PMR flares, as it does every few years the a/f gets worse, pred provides part of the management for that too. Without the right dose of pred, the a/f makes life miserable and there is nothing else the cardiologists can offer.
As DL touches on: of course PMR research has been in a mess. Research, as you must know, costs money. Lots of money. And until relatively recently the women who were the majority of sufferers of PMR were already retired, so were the men who may have developed it. No longer part of the economic equation and it was assumed for many years that "rheumaticks" were an inevitable part of aging. It isn't, it is part of the very broad spectrum of autoimmune disease. And like most a/i disease there is no cure, just management. And pred is the means of management. That is al it does
I'm sorry your GP was too lazy to check the most recent recommendations for the management of PMR. 30mg is a nothing dose - too little for GCA and too much for PMR - and one which was used years ago. You should have been started on 15-20mg - and that is often enough. Then you reduce the dose slowly to find the lowest dose that manages the inflammation as well as the starting dose did. The doses used for PMR are relatively low and many people live with such doses for many years for other things. Used properly pred is a good a reliable medication and after 65+ years there is not a lot to learn about it. Except, to be fair, how it works. But it does work.
in reply to PMRpro
Hi PMRpro,
I'm trying this PMR journey without pred and, although I don't want to worry myself, I would be keen to look-up any literature references regarding the common assertion that "untreated PMR is more likely to progress to GCA ". Do you have any reference for this?
Thanks in advance,
This paper:
academic.oup.com/rheumatolo...
quotes this reference with respect to the topic:
Dejaco C, Duftner C, Dasgupta B, Matteson EL, Schirmer M. Polymyalgia rheumatica and giant cell arteritis: management of two diseases of the elderly. Aging Health 2011;7:633–45.
I haven't read that as I can't get at it. If Christian says it - I'll trust him!
I did PMR without pred for 5 years - not out of choice I hasten to add. I'd poke my eyes out before trying it again.
I’m with you on that one , if we had a fire I would save my prednisolone ,not even the family photos, irreplaceable before PMR .
in reply to PMRpro
Thanks PMRpro, that's a useful hint. I'll get a copy of that paper and have a read-through.
You're on first-name terms with Dr Dejaco? 
I am - he is now my rheumy here in northern Italy. At my first visit we established all the people in the PMR/GCA scene in the UK we both knew and ended up speaking English together - so I always apologise to the nurses who say they love the practise!
As a scientist, you will have a lot in common with PMRPro and several others in this group who are extremely knowledgeable and keep up with the research. As someone coping with PMR, and likely having it come on suddenly and seemingly out of nowhere, you’ll have something in common with all of us. The prednisone was a necessary risk for me and despite having the classic side effects, now with PMR in remission and on the other side of the disease, I have no regrets. Perhaps you could think about discussing a lower starting dose with your physician? Perhaps you can start at 15, 20 or 25mg before beginning a slower taper. But there is much more to managing this disease than the prednisone alone. Your physician is unlikely to address all of these, but they are enormously important to healing: rest and stress management, exercise (gentle), diet (anti-inflammatory), supplements, discussions with family who may not understand your new lack of energy or alacrity, lifestyle and coping mechanisms, etc. and perhaps above all for me anyway, having patience with ine’s body in the face of no easy or sure fire fix. My best to you! Jenn
in reply to Rosedail
Credit where due, my lovely (but hugely overworked) gp was happy to re-start me on 12.5 mg according to a formula in a good paper from a group in genova (cimmino) that i found. Maybe I won’t go mad!! Or madder. Thanks for your reply. And a million thanks to kate gilbert for her excellent book.
Chihuahua1 in reply to
Just like you; when I was first diagnosed a few years ago, I took the first dose of pred but didn't want to carry on. However after the miracle relief with the one dose I didn't carry it on until about 2 weeks later when I was hit with a sudden crippling onset once again. I gave in and took the pred and once again relief within 24 hours. I continued for about 5 months and in the 6th month started to reduce rapidly from 30mg to zero over the next 5 weeks. I was lucky, I got away with it. But the PMR returned with a vengeance less than a year later. This time I was much more settled with the idea and having joined this group by then I read about others' experiences and took my lead from them. Everyone on here is so supportive and friendly and it makes such a difference. I had side effects. I had massive weight gain and regular migraine type headaches, but nothing that compared to the relief from the PMR pain and all the symptoms disappeared once I tapered down again, this time using the go slow method. I am in remission from the PMR for now, but if it comes back for a 3rd time I will not hesitate to start the steroids again; that is unless they come up with a suitable alternative between now and then.
Like you, when I was diagnosed (in July this year) I was reluctant to take prednisolone because of the side effects. In fact, I *wasn't* going to take it - I was going to find a more natural alternative! But thanks to lots of help and info on here, I quickly realised that there is nothing that can beat the almost instant relief you can get from pred.
I have been very fortunate - I'm now down to 7mg and I've got virtually no side effects (although still get pred-head & occasional tiredness). Having said that, I have recently been diagnosed with osteoporosis - the pred won't have helped, but I must have had it for some time without realising. (And my current dilemma is whether or not to take the meds for osteoporosis - but that's another story!)
A couple more thoughts about your worries:
Prednisone has been around for a long long time so even though we all seem to get a few of the side effects, there aren’t surprises or new things coming up like might happen if we were on a fairly new drug.
Somewhere on this site is a research paper published by the Mayo Clinic about their finding with PMR patients and the effects of long term prednisone use. I don’t have time to search for the location of it, and I don’t have my copy handy with the title so you could google it. Hopefully someone else will provide you with the link.
I have been on prednisone for 6 years with PMR, currently on 2 mg, and I can finally see the light at the end of the tunnel. I was in so much pain I didn’t pause for a second before starting prednisone!
My issue was that my doctor didn’t know how to treat me so I was on it, off it, then on it again. I think this messing around has caused me to have to be on prednisone way longer. Please ensure your doctor gives you good advice.....and utilize all the wonder forum advice to help ensure your treatment is done correctly!
See my reply further down page..
in reply to Mrs-CJ
Thank you as well, so much. I don’t have unbearable pain. I am just silly weak. Leg today will not climb stairs. Hey ho, here i come prednisolone..
Suffered agony and anguish during the 6 months I refused prednisone. Now I’m a convert and grateful! I have little to no pain and am down to such a low dose that side effects are hopefully, unlikely. Even so without meds life was intolerable.
I have also read that there is a higher incidence of developing GCA, if PMR is left untreated. Can anyone confirm this?
For me a diet without refined foods, white flour & sugar helps. Good luck.
Yes, see below -
UK figures
PMR is likely to affect 4 in 10,000 people (1 in 2,500, although some sites says 1 in 2,000)
About 1 in 20 (5%) of those on treatment for PMR [or 7 (35%) out of 20 people with untreated PMR] are likely to develop giant cell (or temporal) arteritis, a related condition causing inflammation of arteries.
GCA likely to affect 22 in 100,000 people (1 in 4545) Up to 50% of people with GCA also develop PMR.
Similar medications are used for both conditions. Women more commonly affected than men.
Useful stats to get one’s head round. Interestingly, my next door but one neighbour has PMR and we have same GP.....must be GPs full quota! Ha ha! Stats can mean anything you want as we know from politics. .....choose the right set of stats to prove your point......eg compare number of rabbits and sausage sales.....in an area in a statistical way......bet they are related.
Valerie
Very true! Never had a rabbit flavoured sausage though 🤨!
Above figures are from charity’s site so would hope they are reasonably accurate!
Hopefully between you and your neighbour you can educate your GP should it prove necessary.
Never heard of PMR until my diagnosis in January 2019. 3 of us Michigan ladies spent the winter at the beach 2017/18. We stayed in different locations but met for luncheons, etc. #1 diagnosed in May, 2018, with PMR, #2 (me) diagnosed in Jan. 2019, with PMR. #3 diagnosed with GCA this month. Weird! We are all in our 80s, but all were in excellent health. #1 is now off Prednisone. I start 8 mg. today from original 20 mg. #3 was put on 60mg then reduced to 20.
I think I replied to similar post on thread.,
Yes, my point was this....is PMR/GCA a new phenomena? I never heard of it before my diagnosis....and wham !!!...3 of us have it.
No it’s not new. - been about a long time. Back in Victorian times. I believe. But probably not been recognised as such. Because it affects the older population I think in past it was put down to just old age - and the normal aches and pains that comes with that. Sometimes it’s very difficult at the beginning to get a diagnosis, it replicates other illnesses.
Another factor, women are more affected than men - so many medical people weren’t very interested! And in days gone by perhaps women weren’t so assertive with doctors!
Now we are all living longer- and maybe not so willing to just “accept” what doctors say and demanding an answer to our health issues we are getting a correct diagnosis.
Many on here have said now they have the illness(s) themselves they realise older relatives had it as well - but were never diagnosed!
I wish I had a £ - or $ - for everyone who said I’d never heard of it before I got it (me included). Unfortunately it’s not very well known or publicised - which is why the PMRGCAuk charity was set up 10 or so years ago !
Slow going, but the word is getting out there!
This might be of interest -
academic.oup.com/rheumatolo...
Thank you. I had to insist on a Rheumatoid Blood test at my semi annual Dr visit. That is what got things moving.
It was first described in 1888 by a Scottish doctor who called it senile rheumatic gout. GCA was described a couple of years later but the link between the two was first made in 1964 and PMR established as a seperate disorder in 1966.
pdfs.semanticscholar.org/91...
It's been around a while, under different monikers though.
That’s what I was looking for - knew you’d have it squirrelled away somewhere!
DorsetLadyPMRGCAuk volunteer
Think this is the link Mrs-CJ refers to, if not it’s still extra info -
practicalpainmanagement.com...
Yes it is....thank you!!
You must feel pretty bombarded. You need to reach this decision on your own. We have great people on here with scientific backgrounds who share research that they find. The forum is a useful resource, comforting and often quite funny. We welcome your input! X
in reply to SheffieldJane
Happy to be bombarded! Information is power. Ive seen that pain management precis of a mayo clinic paper. Reading the abstract sets off my ‘overinterpreted data’ warning bells. Journalists are not the best at a. Reading the whole paper b. Correctly recording the shades of grey in the results. Here’s a cautionary tale. A few years ago the ‘times’ published an article on a miracle cure for advanced prostate cancer. 90% cure, no impotence caused. It was based on an abstract from a peer reviewed journal. Claims in the abstract were couched misleadingly. The data analysis proved nothing about ‘cure’ (the authors had invented their own indefensible test for ‘cure’) and there was only no impotence caused because most subjects were already impotent due to previous therapy. The authors declared ‘ no conflict of interest’ despite having shares in the promoted therapy. Etc etc. And people were cancelling their radiotherapy/chemo/hormone and signing up for the miracle ‘cure’.
Back to the mayo clinic, for whom i have a lot of respect but am not afraid to question: I would like to know who the comparators were.
And the meaning of this phrase ‘those on lengthy treatment do experience a high rate of steroid related complications, but these comorbidities are no more common in pmr patients than in non-pmr patients’
Hmmm. Thinks... why are you still calling them steroid related complications then? And in comparison with what is the ‘high rate’?? Presumably ‘ low rate’ is normal, were your comparators normal?
Ive sent for the full text. If it makes sense i will get back to you all...
SheffieldJane in reply to
I see what you mean. I just assumed that they were looking at an age cohort. Osteoporosis, Cataracts, and Diabetes 2 are relatively common in our age group. They are only looking at PMR doses not GCA long term.That would be useful. ( getting back, having analysed the full text)
Does Tye Bach mean little house in Welsh? Is that where you are from?
in reply to SheffieldJane
The mayo appears to have compared two abnormal groups (why?!) and found them to be equally abnormal(so?!).. then a journalist has added a bit of spin to make it appear they have proven steroid side effects are not as prevalent as expected ... still awaiting the full text. Watch this space.
Ty bach means small house in welsh. I was brought up in wales. Tye is an animal friend of mine - horsey-despatched to a new life last week. Can’t climb the stairs, definitely can’t get on a horse any more.
I’m so chuffedto have found you all. I have decided to join the pred club. Thanks especially to pmrpro for paper comparing 1 in 20 gca with 7 in 20 gca for us refusers. Wish me luck. And thanks!!
SheffieldJane in reply to
I do wish you luck and we will be with you every step of the way should you wish it. I hope your body is not in a huff because you stopped the steroids before! You see I don’t have a scientific background. 😃
It is a quandary. I have very ambivalent feelings towards pred. But as I deal with a stress-induced flare I'm reminded how very badly off I was before pred. Even the flare, as I creaked around and moaned a bit before my extra 5 mg kicked in, was absolutely nothing like the worst days pre-diagnosis.
As Sheffield Jane says you must be feeling bombarded. I have a massive love/hate thing with pred. It was so marvellous to be out of pain and to know I wasn't going to lose my sight that I blessed it. But due to being on waaaay too much at the start (75 mg) I had a rapid reduction and ended up with emotional/mental health problems (depression which has responded to anti depressants). I still am very grateful to pred, I see the miracles it works . I am however not blind to its downsides. I am gaining weight despite valiantly holding that side effect off for four months.
Ultimately you will make your own decision but I beg you to be very careful of not treating the inflammation. I have learned from the very well educated and generous experts on this forum how very dangerous that can be.
Please stay in touch. xx
My PMR was undiagnosed for nearly 10 months during which time it affected my heart & lungs & I became more & more decrepit. I couldn't turn over in bed, it took me 20 mins to get out bed, I was having to use sticks to walk & I had to use disabled toilets when out, as couldn't get up from the seat. The PMR was diagnosed when I got GCA symptoms. Prednisone gave me my life back & if I had been diagnosed earlier before the pain was so bad, & known what was ahead I would have gladly taken it. Yes there are side effects, but they are worth it to retain sight & get rid of the other symptoms. You do not want your life to become as bad as mine had.
Morning Tye, So you found us, that`s a start. "WE" need us. Generally, there are no experts as such. "WE" on here, are our best chat group. As you`ll have noticed, there are varying versions of PMR and GCA. Stick with us, you may find others who have your version of this damned problem.
Like you I wish I didn’t have to take steroids for a long period. I was struggling for a few months unable to turn over in bed, get up from bed, not able to dress myself as no strength in upper arms to put cloths on top half of body, and as it progressed was unable to lower myself onto the toilet. I had had enough! I was a 71 year old five foot two lady, who weighs less than nine stone and I am carer to my six foot three son who weights sixteen plus, he has a neurological condition and relies on me so much physically at times, and certainly mentally and emotionally so there was no choice really as he comes first. Pred was like a miracle drug for me, and although reducing is hard, i am trying. My son is scheduled for yet more surgery tomorrow so cannot think of reducing at the moment, but will try again at a less emotional time. Good luck on your PMR journey. It is different for all of us and I respect your decision, but take heed of the advice given above as there is a lot of experience and knowledge here. Take care.
I don't like the Pred, I have a good number of side effects but I also have GCA which is scary, I was so ill until I got the Pred. If it makes you feel better about it, all though my treatment I have worked and researched for my doctorate which is almost completed, it has been tough, I struggle in the mornings with Pred withdrawal (down to 5mg for third time) , but, because of the treatment for my GCA my life has hardly changed and I do everything I want, albeit with a bit of a struggle sometimes.
TyeBach, sorry you’ve had such a worrying time, but very glad you found this forum.
Dorset Lady, PMRPro and several others have given so many of us far more accurate, detailed information on PMR/GCA than most medical professionals have the time to detail (some of whom, depending on their experience, may not even have the in depth knowledge of the subject that you find here).
Working in medical research can put you at an advantage in some areas, but it can also be a drawback. The point of view of the patient is not necessarily a measured, academic viewpoint, and trying to adjust from academic research to the users perception isn’t simple.
For what it’s worth, I was straight PMR diagnosis, luckily never GCA, and through confusion between my GP and her trainee GP was also started on 30mgm. That was in December 2016, 6 months after onset. As with you, the effect was magic.
Having already found this board and ‘read it up’ I felt it was a high dose and reduced to 25mgm almost immediately with no ill effects. Since then, with an excellent GP so need for a rheumatologist, I’ve now reduced in sensible steps, sometimes just 0.5, down to 4mgm. Only once has a reduction been a step too far, in that I had to go back up to a previous dose. And that did feel like failure at the time, because everyone wants to get off steroids completely.
Yes, it’s scary when you read the potential side effects, particularly if you’re more used to being on the other side of the picture so to speak. But it works. Like so many, I have my life back to a great extent. From not being able to turn over in bed, struggling to get out, constant pain and a very real fear that I had somehow mysteriously become crippled for life, to relatively normal. I can do what I want in that if I knowingly choose to overdo things because it’s something I really want to do, I accept that there will be payback in terms of exhaustion afterwards. Swings and roundabouts. Bit like choosing to take, or not to take, the Pred,
Good luck with whatever road you choose to take.
in reply to Mai45
Really kind words. Thank you. Im joining up to the pred club! Thanks to this forum for reasoned, helpful and unpressured discussion. I will never be a fan. Steroids are not a 21st century remedy. Medicine can do better.
Welcome TyeBach! This truly is a wonderful forum filled with a wide variety of folks who "get it" having a lived experience with PMR/GCA. 7478 members strong, this group is very supportive, informative and compassionate.
I see from your latest post that you're going to (reluctantly) give pred a go. I can appreciate your concerns and the difficult decision of choosing to proceed with a medication that remains the only effective treatment for these conditions (shameful, agreed). We weigh symptoms and quality of life with potential side effects down the road. Not easy.
Beyond the science of it all, it was the acceptance of having PMR that presented the biggest challenge. Like the 5 stages of grief I felt a range of emotions/feelings from denial that I had been dealt these cards, anger that my vision of what my early retirement would look like (I'm 56), was shattered, bargaining that I'll change my diet and lifestyle in return for remission. Then it really began to sink in and I felt depressed, isolated myself for awhile and lived with feelings of helplessness and devastation. With the help of this forum, my husband, close friends, GP and therapist I finally came to accept my diagnosis, and with this came peace.
I am determined to avoid as many of the side effects of pred as possible, and utilize all of my resources. This has resulted in lifestyle changes (diet, balance of rest and activity, etc) that resulted in a weight loss of 30 pounds and reducing my blood pressure medication in half. Yes I still have stiffness and sometimes aches and pains, however I plan stick with my new regime to achieve my goals of lowering my pred dose (slowly) and my weight (as was suggested by my GP and Ortho surgeon who is addressing my chronic, mechanical knee issues). I can live with bruising easily, the occasional mood swing, even having dry, brittle hair that is just now starting to thin a bit. What I can't live with is the fear and chronic pain I felt in the 5 months I experienced symptoms prior to diagnosis and starting pred May 1/18.
One bit of advice I'd like to share (from another person who was petrified of pred), would be to ensure that you don't either start on too low of a dose that won't address the inflammation in the first place OR try and taper too fast in a rush to get to 0mg.
I'm so glad you've found us, your "critical eye" will be appreciated for sure. Please do keep us updated. We're here for you along the way, and I will say the humour of this bunch is certainly healing.
Couldn't agree more! I have felt all of the things you have mentioned.
I, too, was recently diagnosed and had serious misgivings about taking prednisone (I still DO). That said, I have both PMR and GCA. Knowing that the only thing that will protect my eyesight is prednisone, I'm taking it. That said, I'm also doing all the research I can on autoimmunity. I was also diagnosed with Lupus in 2006, so am at risk for even more autoimmune diseases, so am committed to making any lifestyle change necessary to help manage symptoms and prevent relapses or, worse yet, acquiring yet another disease. I was able to get my Lupus completely under control and have been in remission for over 8 years with diet, exercise, and stress reduction. I am hopeful that, while I may not be able to get off prednisone completely for some time, creating a condition in my body that helps stabilize my immune system, I may be able to reduce the dosage to a level that feels more sustainable. One wonderful resource I found is a series of online talks that is happening right now (Nov 5-11). I listened to 3 presenters yesterdays. They were all very knowledgeable and informative. Anyone interested in learning more about ways to help your body manage autoimmunity, and perhaps even prevent it, should check out this series. autoimmunerevolution.org/?u...
Having one or both of these diseases is life altering. I wish you well on your own journey as you navigate PMR. You have certainly found a great resource in this forum. There is so much knowledge, and wisdom, shared here every day.
I have PMR for 2 1/2 years now was on Pre’s last year for 3 months purely for confirming diagnosis. Have been off almost 1 year. It’s a hell ride but I have maintained my sanity. Most days are terrible but I have started taking ibuprofen 400mg at 4am when I awake in pain I think this takes the edge off when I get up by 6:30am had 3 great weeks doing this but have had bad set backs last week. I’m better this week no rhyme or reason to the pain or paralysis it comes as it pleases. I’m staying strong as I pray for the end may be near. I tell myself it won’t kill me do I grit my teeth bite on a piece of wood and carry on my day. Not brave just want to avoid more serious illness.
You want to avoid more serious illness but are taking ibuprofen? I hope for your sake the end may be near - but somehow I think that may be wishful thinking,
For a very unscientific take on an interpretation of my dependence on prednisone...it became for me much like the evil ring in The Lord of the Rings. And, alas, I found myself becoming Gollum. I very carefully guarded my little stash of the small white pills, stocking up when possible since so often the pharmacy was backlogged and would only give me 10 pills at a time. I even took to calling them “my precious” and would amuse myself with evil cackles before swallowing them down.
Haha early days for me. Maybe i will become a fan. For now I still hate the stuff. Someone should have developed something better in the sixty five years since invention. I guess i am frodo for now. Tempted but not
quite a convert
Why? How? You need to know the mechanism - only then can you find something better, If nothing else, there is nothing much to find out about pred. Which is more than can be said about the newer drugs which are still hiding their true colours...
I don’t want to rain on your parade, really. But to your two questions 1. Inexcusable side effects , permanent damage to adrenals, bones, eyes, life shortening adverse events and a complete lack of rct’s or placebo controlled trials. 2. Research and development to find something better. There are drugs prescribed in oncology where 1-2% of recipients get any significant benefit, that cost 20k per course. The nhs, by paying for them, is funding the development costs for these near useless drugs . Yet here we are at 2 pence per tablet taking a drug that improves our ‘qualy’s massively and for want of a bit of development funding, also damages us at the same time. Having shared all that, i hope my sense of injustice does not put anyone off. They are the best we have. If we had cancer, more and better efforts would be made. Sadly, we are ‘elderly’!! 59 in my case.
You may feel you are raining on my parade - far from it. However, maybe I am just realistic.
in reply to PMRpro
I’ll get to realistic later and i’m glad you are there already😁And i’m really grateful for your advice and experience. You changed my mind about taking them and i have been a useful human being for three days on 12.5 mg. Quite soon i shall be a grateful and sanguine human being too. For which, i hear, we give much thanks! I’ll fail to post any more moans! Thank you again very much.
piglette in reply to
Steroids are in fact a wonder drug and were hailed as that when they first went on the market, it was unfortunate that they had side effects particularly at high dosages. PMR does not require particularly high dosages and they really do work like magic when you first take them. I cannot imagine going back to that dreadful pain. There are not that many drugs around that seem to work like a miracle.
in reply to piglette
I have no more arguments to put forward!😀
in reply to
It's not about argument! It's your choice & pain! Hope you can resolve this for yourself. ATB
Nothing to do with arguments - just very experienced people putting forward their versions, Piglette has worked in the field most of her life, as have I. You say you are a scientist.
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