Doctor, newly diagnosed with presumed PMR, my experiences for interest.
Posted , 23 users are following.
Hi,
56 normally v fit consultant in NHS.
I noticed relatively rapid onset of very painful quads muscles at night on holiday after some intense exercise with a lot of stair climbing. Initially thought I'd just overdone things but there was no improvement after a few days as expected. Over next few days the symptoms became progressively worse causing waking in the middle of the night due to the pain. At its worst I simply had to get up for around an hour making tea and waiting for some relief with more NSAID's. It was very difficult to turn in bed and hard to get up in the morning due to the pain and stiffness such that I couldn't bend to pick things off the floor or tie laces without great difficulty. Symptoms were predominantly muscular and spread into the upper arms. Quite a lot of pain began in the gluteal muscles spreading into the hamstrings which made sitting uncomfortable first thing in the morning. Even walking was difficult in the mornings although things improved progressively throughout the day and with the help of NSAIAD's I was not too bad at all by the evening many days.
At around this time I also developed very sore left wrist on the opposite side to the thumb which stopped me playing golf as I could not grip the butt of the club due to the pain in my palm. As I had an old injury in this wrist which occasionally flared up I did not initially connect this with the other symptoms. I think I had also lost a little weight.
Initial thoughts were Lyme disease or Leptospirosis contracted on holiday as I had been in a prevalent area and swam in some lakes. I started Doxycycline whilst awaiting serologies at the advice of a colleague in view of the need to treat both of these diseases early.
I continued struggling into work for a couple of weeks until I finally realised I had a real problem which was causing significant sleep disturbance and consulted my GP for the first time in ages. He decided on urgent Rheumo referral although at that stage I thought it was a bit of overkill (what do I know!), still expecting things to somehow wear off spontaneously. I think he could see how ill I was more than I had realised myself.
The Rheumatologist sent the full battery of bloods but at this stage was not entirely convinced it could be PMR partly due to my age which is a little young in comparison to the majority of cases and initially prescribed stronger NSAID's together with an acid suppressing drug to help prevent gastric ulceration.
ESR and CRP were slightly raised which he felt was significant in view of my otherwise good health.
By the time of a review with the Rheumotologist 10 days later it was clear the Doxycycline had made no difference and the infectious causes of my symptoms were ruled out by the bloods. By this time both he and myself were considering PMR as the most likely diagnosis and I was ready to start steroids without further delay as the symptoms were causing such discomfort that I was really struggling to continue working.
The night after starting 15mg Prednisolone was the best night I had slept for over a month although the symptoms and morning stiffness were by no means gone.
I have now been taking Prednisolone for 9 days and am feeling a lot better. the nocturnal muscle pains have almost completely gone. Energy levels are improving, I have greatly reduced the amount of NSAID's needed to keep me going.
The painful left wrist is only improving slowly and I have had to buy some support splints to help with this.
During this illness I have tried to keep swimming which I think has helped me cope with some of the symptoms and maintain muscle muscle tone and flexibility.
In conclusion I think I have been suffering with PMR and have been fortunate to see a reasonably rapid response to steroids at not too high a dose. The diagnosis can be difficult and it can take quite a while for you to realise yourself that you are actually ill and not just suffering the effects of aging or OA flaring up.
I hope this perspective from a medically qualified patient may be of some help to fellow sufferers in making sense of their symptoms and getting diagnosed.
TheRadman
6 likes, 63 replies
BettyE TheRadman
Posted
We are all sorry to have to welcome you to this club that nobody chooses to join but very pleased to have a doctor who will be able, as Eileen says, to "educate" his colleagues.
My pain was at first diagnosed as OA and, as my GP said, that was forgiveable looking at my knobbly hands. Luckily I mentioned that I had recently lost weight and as I only weigh under 8.5 stone, that was not intentional. That was the clincher and, having taken blood for ESR and CRP ( both raised ), I was started on Prednisolone immediately and the symptoms disappeared as thought by magic in 4 hours. Getting down to zero Pred. took three years and I was lucky that My GP trusted me to adjust my own dose ( under supervision.... I kept a diary ) The slow reduction method recommended by Eileen worked for me.
The only downside is that after three years in remission PMR returned but again I eventually I recovered and that was five years ago. I stay on here in the hope of being able to offer encouragement.
TheRadman BettyE
Posted
Thank-you Betty, I hope you long remain an ex member of the club yourself. It helps the new members like me a lot to know we can expect to recover eventually.
patsy59716 TheRadman
Posted
Thank you Radman for your very helpful comments. My symptoms began in May this year, disguised by a frozen shoulder, and later an unsubstantiated diagnosis of calcific tendonitis - PMR wasn't considered by the osteopath I was seeing. Eventually I saw a rheumatologist privately, who confirmed by blood tests and my 'classic symptoms' that i had PMR, and since September I have been taking 10mg of prednisolone for 6 weeks, tapering to 9mg this month. It was amazing to go from crippling pain to as limber as I always used to be! However, he was quite vague about the possibility of developing GCA, the symptoms seem to be generalised. I'd be grateful for anyone's experiences or advice in this respect, so that I don't go running to my GP every time I feel a headache! I'm 65, and I live in London.
EileenH patsy59716
Posted
There is no simple answer to the symptoms of GCA - any single symptom listed only appears in about half of patients and you can choose any n symptoms from a list of umpteen!!! But increased systemic symptoms: feeling fluey, increased sweats and fatigue for example, together with other discomforts should prompt you to pay attention. You may have headache - temporal or occipital, i.e. areas of your forehead, especially at the sides, and at the back of your head,; or jaw pain when chewing; a sore scalp when combing your hair or laying your head on the pillow. Any loss of vision, however fleeting, or strange visual effects should send you to the doctor - A&E or a walk-in centre in the evening or at weekends - that is the cardinal sign of trouble. And since it can be a symptom of stroke, emergency medical advice is essential anyway.
But lots of GCA patients will say that if you have a headache that goes away with ordinary painkillers it almost certainly ISN'T GCA.
andre68439 patsy59716
Posted
Hi Patsy. I have posted here before so you may know my journey. However, now that we are on this discussion of misdiagnosis I will add a chapter of my horror story on that subject. When I deteriorated quickly in the middle of my eight months without PMR diagnosis and could not raise my arms, my GP fresh out off his residency program ( a University of Miami grad) sent me to an orthopedic doctor who at the time (2007) was the official orthopedic MD for the Miami Panthers, the professional hockey team. His glitsy office was full of tennis stars who he worked on. He looked at my Xray and said my joints were "lit up like a Christmas tree" and suspected torn rotator cuffs. Yes you read this right. He then had me do 6 weeks of therapy which was painful, then performed orthroscopic surgery on my right shoulder. By now I had become so anemic that he needed my GP to sign off before the surgery. When I was in recovery he told me it was NOT a torn rotator cuff after all, but he saw a bone spur that would have eventually been a problem so he removed it "while he was there". Gee thanks. It took me another 6 weeks to recover from the unnecessary surgery. Meanwhile my GP was pumping me full of narcotic pain killers. When I finally got to a Rheumy 4 months later he was beyond livid. I wont bother to tell you the condition I was in after the 8 months because I'd be preaching to the choir. I am in remission now after a recent relapse but stay on this forum to educate myself about my PMR because by first hand experience I have learned not all doctors have the level of experience we all need, and you must be well informed about your own condition and forceful as your own best advocate. If not, you could end up really suffering, or at the extreme on an operating table when all you needed was 20mg of Prednisone. My lesson....get second opinions.
TheRadman patsy59716
Posted
Hi Patsy,
The frozen shoulder just might have been related. I have been reading the literature on account of the tenosynovitis in my wrist which came on with the symptoms of PMR and I am finding papers which confirm this can be a common related issue
https://academic.oup.com/rheumatology/article/50/3/494/1791082
with synovitis and peripheral arthritis in up to 40% of patients although a smaller proportion will have clinical symptoms. MR imaging studies have shown fluid containing bursae (sacs communicating with the joint cavity) as the principle site of inflammation which suggest PMR is principally a disease of extra-articular structures which I take to mean the supporting tissue immediately surrounding the joint capsule which contains the articular fluid.
Harrie4 andre68439
Posted
I am so sorry to hear of your experience but also very grateful that you took the time to recount it. I can only assume that you received a hefty bill in addition to the unneccesary pain and anxiety, and truth be told: I cant seem to not feel anger on your behalf. That you have effectively repurposed your experience as a cautionary tale is a gift to all on this platform. I will certainly remind myself that I am my own best advocate and to never be afraid to actively seek out real answers to any and all queries and concerns. And also, in the final analysis, perhaps to then adopt as a guideline that I go with my gut when making any life altering decision.
Wishing you only the best going forward.
rich38490 TheRadman
Posted
This is a great thread. Rich, here from South Texas USA. My only new perspective is that of a type 1 diabetic. I spent two months pre-diagnosis which was terrible. When I was finally diagnosed, the RA would not put me on pred due to the high swings in glucose levels. More misery. Working with my endocrinologist, I was able to get on pred and began resuming a great quality of life.
I test 6-8 times a day and make corrections as needed using insulin pump therapy. I also started a ketogenic diet and that has helped greatly with keeping glucose levels in range.
Best wishes.
TheRadman
Posted
Update: Now into the 5th day since I increased pred to 20mg and the difference has been well worth it with the morning stiffness and soreness the least its been since the onset of the disease 6 weeks ago which allowed me to get in for a full days work without any significant problems. Saw my rheumatologist colleague yesterday for a quick review and he has recommended continuing at 20mg for 3 weeks which will ideally get me relatively symptom free before beginning tapering initially back to 15mg. We'll see how it goes. Went for a swim today in the pool and managed 1km without getting leg cramps which had been a problem the previous few times.
Thanks to all contributors to the thread, much appreciated.
EileenH TheRadman
Posted
Three weeks may be enough PROVIDING you don't overdo things in the meantime! The a/i part of PMR is still there in the background and attacking your muscles, making them intolerant of acute exercise. If you overdo things you run the risk of developing DOMS, probably more severely than is commensurate with the amount of exercise you did, and which will then take longer to resolve. Just beware. You may have to build up the amount and the intensity of the exercise you do as if you were training again post protracted illness. I skied with PMR - I had to start the beginning of season with just 3 very short runs and then build up by skiing not more than alternate days and adding an extra run about once every week. But after Christmas I was skiing most of the morning but still short runs - it took until February to be able to ski a long run, even though it was the same total distance as 4 short ones. The rest on the lift was essential!!
TheRadman EileenH
Posted
Spot on Eileen, I woke with recurrent myalgia this morning so clearly overdid it with the swimming yesterday, I was trying to push the distance a bit. Fortunately it eased reasonably quickly over the course of the morning. I will need to learn how to pace myself just as you describe. I'm certainly planning to do some skiing this winter myself but will be limited to one maybe two visits to the alps during the season so will be hoping to try and build some conditioning in the legs before I go.
Thanks for the advice.
TheRadman
Posted
Update day 6 on 20 mg pred (pushed up from 15mg starting dose due to residual morning symptoms)
So I'm still not great some, probably most mornings with stiffness and some soreness on getting up which is a bit disappointing as I'd hoped pushing up from 15mg which had really helped the nocturnal symptoms was going to make the difference.
Having said that I have been able to go back to work although not at the same intensity as before the illness. I have also started to regain some of the weight lost before starting treatment. Because of these residual morning symptoms I had reasoned that it was worth trying splitting the dose to take 25 - 33% in the evening although I had not found anything in the literature about this I stress, so it was very interesting to see the new thread in this forum covering exactly this issue.
Too late for today as I took the full 20mg this morning so I will start the new 15mg am, 5mg nocte regime tomorrow. I should probably advise anyone else thinking of playing around with dose regimes to consult with the prescribing doctor first particularly if you have been on steroids for a long time or have significant other conditions which could be upset by changing the timings and it is likely to be very important to take the greater dose in the morning when the body's physiological cortisol requirement is at its greatest. I will let you know how it goes in a few days.
Flutterbie57 TheRadman
Posted
As others have said, I am sad to welcome you on here, but being someone within the medical profession, it will be interesting to hear your views on the situation we all find ourselves in.
My path into PMR was similar to yours. One night I woke up in extreme pain in shoulder and hip/butt area every time I had to turn over. I didn't take painkillers, but went straight to the Osteo/Chiro thinking I had an injury. After 2 sessions with no improvement, or change what so ever, he sat me down and explained to me sympathetically, that he wanted me to go to my GP with a letter about PMR.
Doctor gave me steroids (20mgs) - said if these work, then it will be PMR - diagnosis done ! Within 12 hours I was about 50% better. Four days later I felt 40 years younger.
My blood tests have always been perfect tho. My diagnosis was based on - steroids worked !
Doctor Google diagnosed Lyme and Lepto for me. A year previous to that after returning from Europe I did have one positive test for Lepto, but next one was negative.
Take particular care in the early stage, not to overdo it. I did.......big mistake !.......but due to old age ignorance.....I felt so good......thought there was only 1 type of steroid and thought I would be able to move mountains if I was on it for a couple of years. When I crashed, I really crashed. I have never been that pain free again. And sadly I still boom and bust.....no common sense 😃
Take care
TheRadman Flutterbie57
Posted
Thanks for the comments, sounds like you had a pretty clued up osteo.
I've been on my self worked out split dose regime for nearly a week and I can now say that the improvement compared to morning only dosing has been excellent and to be honest although I am still pacing the exercise I am almost normal for the first time since it all started. No morning stiffness and almost no muscle pain. The tenosynovitis has also responded in tandem which convinces me that it is part of the disease as I suspected. I've even made plans to get in a game of golf for the first time.
Some of my medical colleagues who use steroids in treatment of inflammatory bowel disease warned that evening administration caused a lot of sleep disturbance issues in their patients but fortunately this has not really cause me any problems.
The next question is really going to be when I start to taper which element should I reduce first or should I incrementally reduce both the morning and evening doses?
Flutterbie57 TheRadman
Posted
It is all trial and error along the way, and thru this site it is obvious that we all react differently.
I have just been through a period of not being able to get to sleep, so I tried splitting the dose ...... 5mgs in the morning and 2mgs in the evening ..... it worked ! I didn't expect it too, but it did ....... it helped me drop off to sleep quickly again.
Just reduced to 6mgs. I thought it would make more sense to drop the morning dose, but taking 2 in the evening was helping me get to sleep, so I reduced the morning dose. I really thought I should do it the other way round, but it has worked for me.
It's like a magical mystery tour 😃
EileenH TheRadman
Posted
Reducing BOTH morning and evening dose at the same time will result in a proportionally fairly large step down - and that is something that almost inevitably leads to problems. Even the literature admits that a reduction of 1mg or more per month is a risk factor for flares. But like everything in PMR, everyone is different as Flutterbie says! If you start a new thread people who split their dose will be more likely to see the question and provide the benefit of their experience.
Ask your colleagues if that is their personal experience about evening dosing or what they have been told. There is very often a wide discrepancy between what doctors tell us and our own experiences and sometimes splitting the dose leads to fewer or weakened side effects overall.
And when you get to the golf course - consider just doing a couple of holes first and build up slowly. Other golfers have found that even using a buggy, going straight to a full round led to a PMR bite back.
BettyE TheRadman
Posted
Night time pred was ok for me, too. Day time hyped me up so you'd think night time dose would keep me awake but, no!
Incidentally, this post was notified and read by me yesterday or could have been earlier today but has appeared again in this evening's email notifications. Meanwhile others are not receiving any!
Emis_Moderator BettyE
Posted
Hi Betty,
Radman's post above was posted at 20:28 on 06/11/18 UK time. I have looked in our email sender site and the email was sent to you 5 minutes after the comment was posted, see image below. The "Delivered" entry means it was successfully received by your email provider at 8:33 pm on 06/11/18. This means that if you definitely did not have it in your inbox until the evening of 07/11 then it was delayed by your email provider and is beyond our control. All we can say is when our provider delivers the email.
BettyE Emis_Moderator
Posted
Thanks for the explanation.
All I can say is that it definitely appeared twice, once after I'd already read it. I certainly cannot vouch for my internet provider ( BT ) nor for my security ( AVG ) weird stuff happens .