I have suffered a relapse of PMR, I could hardly move, difficulty getting out the car, getting off the sofa, dressing even eating. After months of worsening pain I threw in the towel and went to see my GP.
She prescribed Prednisolone and I'm much better.
My fault as I was diagnosed a couple years ago but only took the meds for a week.
You would think I would know better being a clinical supervisor, this time this GP explained I would need to take the meds for a year or 2.
Its all down to GP education and how they monitor their patients
I think its getting better but groups like this have a role in promoting awareness.
I couldn't believe how quick the recovery was just a few hours when I had been suffering for months, a year maybe, thank goodness for medicine.
Does anyone have any other advice
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Travs
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Hi welcome to the forum. I am glad you have decided to take the pred as prescribed this time. We all make some suspect decisions in our lives. Most dont come back to haunt us luckily. First a quick word of caution, gp are very good at telling patients they willl only be on pred for a couple of years or less!! Unfortunately this is not what most of the members of the forum ever experience and the course of pmr is more likely to be 4/5/6 years and longer from some. This doesnt mean yours WILL be just it MAY be.
There is lots of info on the forum and dont be afraid to ask any questions you have. There is usually someone around all the time even in the early hours when questions usually come to mind.
Good luck with your journey and make sure you keep us ip to date. YBB
It was more ignorance than choice last time, Once I felt better I thought I was cured but now I know differently. I was warned about the GCA red flags but not the treatment expectations.
In hindsight though I would have thought someone would have noticed that I had stopped ordering the Pred. I guess GPs are just too busy to monitor their patients.
The trouble with prescriptions is, they are signed by the duty GP, which is probably a different one each time, and not necessary the one that initially prescribed them!
Plus Pred is more likely to be prescribed for short term treatment in asthma or COPD etc rather than long term as in PMR or GCA.
Dorsetlady has provided you with a link for more info on the disease so have a read. Dont beat yourself up over not continuing last time, its hard getting your head around such a disease. YBB
Sorry to hear about relapse, but with only a week on Pred, I could say - no wonder!
As a paramedic we wouldn’t expect you know about PMR - it’s not an illness that normally requires emergency treatment - and you are certainly not the only one in the medical arena to know nothing about it.
Have a look at this, it’s a bit long, but should give you better idea of what’s ahead, and although men seem to get through PMR easier than ladies, you might need to revisited the 2 year timeframe!
hard to say really I guess the relapse was so slow and insipid I didn't notice until I was having trouble doing easy stuff, even then I didn't make the connection, I thought I had MS
I just don’t understand how that’s possible DL....?! I was literally disabled before Pred, plus the PMR seemed to come out of nowhere, I don’t know how I’d have coped for any time without meds!
You don't understand what's possible? To be undiagnosed for that length of time, or to live without medication?
I had GCA as you know, but it was treated as frozen shoulder, so I did have 3 cortisone injections into left shoulder joint over a period of 12 months - none of which did a lot of good - understandably. and was continually being told, "oh you'll wake up one day and its will be fine". Mad, naive fool me, believed that ---then!
I had stiffness and pain in both shoulders - took about 10 mins to turn over in bed, and the same time if not longer to actually get out of it! I took copious amounts of painkillers - so many I kept a diary so I didn't accidentally overdose.
I was fatigued all the time, and trying to act as a carer for my husband - which in itself was certainly a part-time job if not full-time job, and consequently worrying more about his health than mine.
Because it was GCA I had no problem walking etc, so that was a bonus!
Thinking back I was probably in a zombie-like state most of the time, - and can certainly remember the Christmas before diagnosis (and onset of head pains) 15 months into my journey when cooking lunch standing in front of the cooker crying my eyes out in pain and thinking "how the hell am I going to get this bl$$£y turkey out the oven without dropping it on the floor". I think that's probably when it finally dawned I really was not in a good place!
I know I was probably my own worst enemy, but if you're getting no answers from the doctors what's there to do, but carry on!
Plus of course I was Superwoman (and a Viking) so what's a few aches and pains!
Just think - if you’d known about the HU Forum on day one...
Yes - it was the lack of meds I was thinking of - I really can’t imagine being in that state for longer than a month, let alone having the caring responsibilities...
Apart from that, I consider myself fortunate on two fronts:
1) having my OH insist on doing something proactive(!),
2) seeing a private rheumy who diagnosed me straight away
Oh, and a couple more - having a pharma friend who put me onto this forum and: following a tapering plan put forward by a Norse goddess...!😉
Oh boy- I wish I had! So ignorant of GCA and PMR - like many 9 years ago.
Didn’t find it until about 6 months into GCA - after getting through shock of losing eye and eventually locating our fantastic charity and numerous emails with Kate. Bless her!
So no wonder I rabbit on endlessly about “looking after our eyes”.
My mission in life -and I’ve excepted it - to hopefully stop others taking my journey! Infortunately it still happens - but not so much.
Having said that - my life is still good, so it’s was a blip! As my dear old mum would say - “worse things happen at sea!” Not that she ever knew!
The HU forum probably didn't exist then, certainly not in the form it is now. Some 12 years ago there was only one forum, on the patient.info site. Five women met there and got together to start the work to form the PMRGCA charity in England, there was already one in Scotland. The first English charity was the NE of England one, based in Gateshead and it closed a year or so ago. It formed its own forum and then when the national PKRGCAuk charity was formed Kate Gilbert decided to set this one up. The patient.info forum is pretty active, not as much as this one though.
When the doctors don't/won't/can't help there is little choice! My grandfather had what was probably PMR for years - there was no treatment in the 1950s, pred had only just been invented! I had to adjust - wasn't nice and I often was in tears but I really didn't have an option.
Tears I can readily understand PMRPro - pain, frustration and exasperation...! It really is a sobering thought that, before the forum there was nowhere else to turn.
Without getting ‘off-topic’, do we know whether or not the average GP Surgery will point patients towards the forum? It certainly didn’t happen in my case - as I said to DL, I was fortunate that a friend of mine had the nous to research it, essentially because he was a bio-med scientist himself.
Some might, but most are totally oblivious. I spent weeks online here in Italy, skiing a bit in the morning and recovering in the afternoon in front of the computer. I had to find out what it was I had - though possibly had I gone to a doctor here I might have found out sooner!
It was a chance encounter with a GP blog I'd found where MrsX had come back almost dancing after a moderate dose of pred - and this GP made the PMR diagnosis, commented that it was one of the most rewarding dx's to make, the patient went from grey and ill, dragging them self in to the practice to recovery with a smile. I had a name!!!!! Then I found the patient.info forum, I read every single thread and post on the PMRGCA forum and then someone asked a question I knew the answer to, it was medical science.
Welcome to the forum Travs. I'm glad you found us as we will "get it" better than most who don't have a lived experience of PMR/GCA. Some of your words certainly resonate with me, as I was not diagnosed for 6 months, and as the pain and stiffness increased, and my mobility and abilities decreased, my mood darkened and I feared I had MS.
I've been diagnosed for a year and a half now, and I will say, for me, things got better as time marched on. In the beginning I had waves of feelings such as fear, denial, anger as I had just married, moved and retired 18 days prior and I felt cheated out of the retirement I dreamed of. Once I accepted my PMR diagnosis, and lessened my fear of prednisone, I began to focus on things I could change, rather than trying to fight this condition. I totally changed my eating habits and lifestyle, adopting a low carb/salt/sugar diet which resulted in a weight loss of 30 pounds that I've kept off for over a year. I also slowly incorporated more and more physical activity and this past summer enjoyed golf (with a cart, I've got bad knees), pickle ball, walking and deep water exercises. I no longer take medication for hypertension. I do take calcium, Vitamin D and K2, and Magnesium
I only experience a few, manageable side effect from pred including, thinning hair (I now take biotin), early morning sweats, skin that bruises easily and at higher doses I experienced mood swings (emotional dysregulation) which has for the most part subsided. Not everyone gets all the side effects. I get annual bone scans to check for osteoporosis, but so far, so good, You may want to get a baseline bone scan done now in the early months.
As far as "managing" the PMR, I have experienced a few flares along the way (one due to my former rheumy's tapering instructions - too much of a drop in one go), and one after dropping my daily dose below what my body needed (along with some stressful events). Despite this I'm feeling well and am currently at 9.5mg, tapering VERY slowly this time around. It's important to listen to your body as it's sometimes difficult to determine if what you're feeling is pred withdrawl, a flare, or overdoing physical activity resulting in DOMS (delayed onset muscle soreness). A good physician also really helps, my GP is brilliant. You need to advocate for your health, and this sometimes means saying "no" to doctors, or questioning their direction. I also got support from my therapist (in the more difficult early months), and from my husband who has been patient and open to making the necessary adjustments.
There are times now that I forget I have PMR, and I live a fulfilling life now that I can be active, social, and travel. That being said, there are times I am sad, especially when faced with limitations. I realize I have a chronic illness that hopefully will go into remission one day, and this means I need to balance rest and activity and continue to follow my eating plan. I don't focus on how long I'll be on pred.....the average is said to be 5 years and 9 months, although it also seems that some men do better than women with this condition.
Sorry for the length, I just try and fit in as much relevant info as possible. Sounds like the pred is working it's magic and you are on the road to awareness about PMR. The folks on here will help in that regard....they are brilliant.
So sorry your PMR has resurfaced and hope you can get it under control. I have been from 25mg working slowly towards 6mg over the last 15 months. This morning at exercise class a friend came over who has had PMR for years and she was so excited as she just got off pred. She started at 15mg and it has taken 9 years, so do not be in a rush. She is feeling great at 82. Good luck on your journey and welcome to the forum.
Sorry this happened, Give yourself time to recover this time, pace your activities, rest a lot. Take Calcium, Vit D and Vit K2. Have a healthy diet. Remember Pred helps the pain, stiffness and inflammation. I doesn’t cure PMR in any way. The disease will go in its own time. I am afraid even a year or two is optimistic. The forum supports and helps inform the journey. So pop in now and then. Normal duties have to be suspended, for the foreseeable. Good luck with it all. Glad you got the Pred miracle!
Here are my 2 top tips which have already been mentioned in previous replies but they really do bear repeating - be prepared for it to take much longer than "a year or two" (I am 4 years in and still on 10mg per day despite several attempts to reduce but I am feeling good on it) - and when you start tapering (advice to me was to only attempt this every 3 months) take it VERY slowly. Plenty of posts I have read here tried it too fast and ended up worse off that if they had done it slowly the first time. There are several DSNS (dead slow nearly stop) tapering methods if you search this site. And good luck! Enjoy feeling better and give yourself a 3 month break before trying to reduce.
Do your taper as advised and with luck, you’ll come out well, as I have.
My initial dose was 15 for three weeks, then a month each at 10,9,8,7,6,5,4,3,2,1, and done in less than a year.
I have lingering muscle weakness, and stiffness upon getting up from sitting, but so much better than when this all started.
If I relapse, I will go back on prednisone. Till then, Aleve (Naproxen) keeps things manageable. I’m 66, so can’t expect to function like my 36 year old self!
Well Travs - I think you’ll have got the message from other replies that we’re all in for the long haul on Pred...! It’s only really possible for each of us to relate our own experiences, notwithstanding there’s a common thread. In common with many, I’d never heard of PMR and naively thought a few weeks of tablets would see me over the worst...🤣 - at least you know what it’s all about. In March 2020, it will have been 4yrs for me (no flares - touching wood) and am down to 1.25mg/day. So - don’t be too concerned with taking the steroids over a prolonged term and follow DL’s tapering plan! All the best.
This forum has been a light bulb moment for me a neon light bulb. Reading through all of your comments and advice I have been saying OMG out loud. A LOT
For example, yesterday I cancelled a physio appointment for a hydrocortisone injection in my left shoulder. I have been carrying a rotator cuff tear for about a year, or so I thought. After starting the Pred it was 80% better so I thought the meds were coincidentally helping that too but after reading through here it seems I may have been mis diagnosed the whole time ? I have also been walking with a stick after being diagnosed with peripheral vascular disease but even the stick is gone now a bit late though I reduced my hours 14 months ago so I have been on half pay. I have been struggling even with part time so have had quite a bit of time off sick for one reason or another meaning that my managers are not keen to let me back full time ( I wanted to go out with a bang not fizzle out like a damp sparkler) so money has been a bit tight leaving me well short of the target to pay back my mortgage in 6 years BUT I'm not complaining Im almost pain free for the first time in years, I can put my own socks on and I don't need to use my arms to lift my legs out of the car, I can get in and out of the shower and not have it seem like a marine assault course so Im positively euphoric. or is that the pred too lol ?
One thing though, does anybody know about a genetic link ? My late mother used to constantly complain about her rheumatism, screwmatics she called it, I had assumed she meant rheumatoid arthritis but when I think about it she didn't have nobly joints so I wonder if she lived and died with the disease.
I discovered this forum all by myself using google I was not prompted by my GP so that's a bit disappointing. Im also a bit cross with my GP about my shoulder. when I eventually went to see him He directed me to physio no questions no examination just a 6 week wait for an appointment followed by very painful exercise that I couldn't do and I believe made things worse. After spending 38 years working for the NHS I often find myself defending it but Im struggling to do than this time. I have had over a year of pain and we all know its so much more than an ache ! My poor mobility has stopped me from doing so much and its also cost me around £20,000.00. in lost wages
I'm still smiling though, today I walked into town and back through the park and still had energy to do some chores. I thought those days were behind me.
Thanks to everyone here for your warm welcome, advice and support.
Just glad you found us. It can run in famiesi suspect my Mum had it and my friend mother in law and husband had gca. But nothing has been found apart from. The scandanvian connection. It is hard when illness makes you cut hours etc. at work. I probably have lost 30 to 40k a year having to give up work for a variety of issues yet somehow they think I am skiving. Until 2015 (from 2006) I wondered whether I could meet my mortgage. Then sadly my dad passed and fortunately I was able pay the mortgage off. I had got to the last 5 years.
Have your pain controlled wi make a difference. And after 31/2yeats I see things and think omg I had that and didn't realise it was probably pmr! 🌻
I wouldn't bother warning them - my maternal grandfather almost certainly had PMR that was made worse by war wounds and an aunt on mum's side also fitted the pattern of PMR. Nothing in mum's generation at all. Just me in this one.
It isn't a genetic link in the way cystic fibrosis is for example. It is thought to be the result of a lot of small insults to the immune system that eventually overload it and it goes haywire and attacks the body tissues in error. They may be stress-related, infections, trauma, chemical, anything that affects the immune system. But as a background there is your historical genetic scenery - and people with Scandinavians figuring in it were found to be more likely to develop PMR/GCA, it is very rare in people with Asian and African histories, rare is not "not seen". So it is likely to appear in families where that background is going to be common to many people. But I don't think the incidence is greater in twins (might be) which is the usual sign for genetic links and no gene has been identified that really links to it.
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