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
frances80868 TheRadman
Posted
This sounds very familiar, although I was 71 when Polly came my way last January. I responded well to prednisone and am presently taking 10mg daily. Weight gain is a problem as are the psychological ups and, mostly, downs. Oh how I miss my energy. Good luck with your progress.
TheRadman
Posted
I couldn't possibly comment...
TheRadman
Posted
The last post I made above seems to have gone out of sequence, never mind.
So after nearly two weeks on 20mg daily split 15mg am and 5mg last thing at night I can say that I almost feel back to normal! I played golf for the first time since August with no issues and have returned fully to work with more energy and clearer thinking than in a long time. Definitely for me the final piece of the jigsaw leading to the full benefit of steroids was taking the smaller evening dose which pretty much abolished the aching and stiffness on waking. I had no sleep disturbance on this regime. I have noticed the occasional tendency to muscle cramps which from another thread are likely to be a sign of magnesium deficiency so I will be looking out for some supplements.With guidance from my rheumatologist I will soon begin the long, gradual tapering of the steroids and plan to do this via dropping the morning dose by 1 mg as the first step.
TheRadman
Posted
New Year update:
Firstly Happy New Year and best wishes to all in the PMR community who happen to find themselves here.
It is the first week of January and I am currently taking 14mg of pred split 12mg morning and 2 mg last thing at night. This represents a bit of a rapid drop from the 20mg I was on at peak I know and was a bit unplanned due to running short at one point. On this dose I have no stiffness or nocturnal symptoms but can feel an aching pain in the upper hamstrings, calves and gluteal muscles particularly in the mornings which reminds me the PMR hasn't gone away. The wrist problem I previously suffered with is barely noticeable at this level and I remain fully back at work. I can exercise pretty normally, mainly swimming at the moment.
I am mindful of the advice about not tapering too rapidly however and if the residual symptoms persist or show any sign of increasing I will have a low threshold for nudging back up to 15mg to hopefully avoid triggering a full on flare, in fact as I write this in the afternoon the leg ache is more noticeable than it has been for a while so I might well push up to 3mg this evening.
Other than that I have nothing to really complain about.
Once again thank-you to all contributing to this site, particularly the awesome Eileen who has been so helpful to so many.
TheRaven TheRadman
Posted
Radman,
And a Happy New Year to you as well! Sounds like things indeed have smoothed out rather well. There's always bumps in the road but I love a smooth section. And there's the mantra that Eileen teaches:
"You aren't reducing relentlessly to zero, you are looking for the lowest dose that manages your symptoms as well as the starting dose did."
Do let us know how things continue on your journey. I think many of us will reading and posting on this important forum for some time to come.
BettyE TheRaven
Posted
Happy New Year to you, too and everything crossed for a smooth reduction.
I smiled at the idea of a medic running short of his prescription; bit like a teacher running out of pens and paper.... but it happens!
TheRadman BettyE
Posted
In my defence due to having been fortunate with my health to date it is an unusual situation for me to have to remember to take daily pills particularly as when you are on effective dose its easy to almost forget you have a PMR problem at least in my case! The reluctance of the Rheumatologist or GP to prescribe more than a month at a time didn't help but I've accumulated a little stockpile now including plenty of 1mg tabs to make reducing easier.
Best wishes!
shannon76840 TheRadman
Posted
My FMD had a student that was not able to understand that I am an integral part of my health care team. When I talked with my FMD he seemed to understand and he has allowed me to taper as needed. I am an NP and finally my doc allowed me to manage this taper. I am 1 year in now, tapered too fast about 4-5 months ago and had flare that I could not manage for about 8 weeks. Now following reduction plan suggested here and doing ok. Just before Christmas diagnosed with Lyme Disease so it should be interesting to see how things go.
There is a big fear of prednisone and I was one of those as well, but I realize my quality of life is most important. I am on 8 mg and depending on how things go my pan will be to go to 7.5 sometime in Feb. The 7 mg of prednisone stage seemed to me to be a game changer as I was able to taper to that relatively easily. The challenge came at that level.
Exercise was not possible with delayed onset muscle soreness and fatigue. But now most days I do a 20-40 minute leisure walk as well as Yin type yoga for about 15 minutes a day. The intro to yoga is only 4 days in.
I was a runner, a triathalete , a cyclist, hiker to a home bound, sad, sore, scared female. I have found that listening to others and my body has been incredibly useful.
When I am doing ok 2-3 out of 10 pain I can manage well. I give myself permission to take care of me for the first time in 67 years.
I love to read others stories and learn but I also refuse to stop living and the prednisone has enabled me.
This site gives me hope, support and best of all the nitty gritty education.
May 2019 bring peace, joy and gratitude to do what we must do.
Shannon
BillyP TheRadman
Posted
GDay Radman, ........ Sorry you have been diagnosed with PMR , ......but it is interesting to see , how you (as a medic) cope with the situating.For me , as a long term PMR sufferer and pred taker, to hear some of the questions that people ask on this forum about info they have received from their medics, definitely leads me to believe that a lot of GPs and Rheumys are getting their patients totally confused.When i look back at the medication instructions i first received , i understand why patients are left wondering what to do next. I have no medical training, just what i have picked up along the way, and i reckon both my GP , my Rheumy and i, were all on a learning curve at the time . Some expect to get off pred in a couple of years, but mostly by that time , they will still be coming to terms with PMR, and still be sorting out the medication that suits them.I feel one of the main things (after sorting out the medication)
is being able to recognise an oncoming flare of sorts and how to handle it quickly to get back to their normal maintaince dose without tapering too quickly and not realising the pain that they are now getting may well not actually be PMR but withdrawl symptoms from too quick of tapering.For me , once i taper down to 10Mg, it is then one quarter Mg per month to get to my usual dose of 5Mg. For me, i always have morning doses only.Any way best of British Luck to you, ......................
patsy59716 TheRadman
Posted
I've just been updating myself on this thread, and realised I haven't thanked those kind people for their replies to my comments. I suppose there must be some way of getting notifications, but I haven't found it yet! I'm almost all days at 9mgs now, (from an initial 10mg dose) -- a bit of soreness and stiffness in the shoulders in the mornings, but not enough to bother me too much, and it usually recedes in an hour or two. I'm trying to decide whether to carry on for a month on 9mg and then start to reduce slowly to 8mg, or start introducing the 8mg when I've finished taking the last two 10mg doses.....I'll let you know how it goes --- and happy new year everyone!
EileenH patsy59716
Posted
On the line at the top of the page you will see your username at the extreme right. Click on it and it offers you a drop down menu. Click on Settings to get another page and on the left side you will see a menu box. Click on email and it bring up a page with all the options of when you will be sent an email about a new post.
TheRadman
Posted
So its been a few months now with not a lot to report other than a gradual tapering of the pred.I haven't been too scientific about this yet, just dropping by 1mg every few weeks depending on how I am feeling. At one point I got a recurrence of the wrist pain which I thought was a breakthrough of the PMR and went back to the previous dose for another week. Another time I got the pain in the hamstrings back and again I had to nudge the doe back up for a week. The other issue is every time I drop the dose I feel exhausted for the next day or two which I think is the general effect of being a bit short of cortisol until my adrenals realise and catch up again.
I still swim regularly and have started to play some golf so I count myself lucky that the PMR is not really impacting me much at all now.
Flutterbie57 TheRadman
Posted
Good to hear. What are you down to now ?
TheRadman Flutterbie57
Posted
Hi Flutterbie57,
Now down to 7.5mg, it was 7 mg but I ran out of 1mg tabs so until I get some more I have to split a 5mg tab to get 7.5mg.
It might be the time to start reducing in 0.5mg increments from now anyway.
BettyE TheRadman
Posted
Hope you won't mind but I shared your post with my sister who was diagnosed with PMR seventeen months ago and, like you, went along smoothly with her reductions until about three weeks ago when she hit a wall at 6.5 mgs. Although I'd shared my PMR experiences with her I think she couldn't quite believe that it isn't just a case of diagnosis, prescription and cure and so felt very fed up but said your post made her feel she wasn't alone.
Not only she and I but also our late mother were PMR patients. Another sister ok so far.
Best wishes for smooth progression and happy swimming and golfing.
TheRadman BettyE
Posted
2 years later and I am now down to 2mg if you see this.
I think I have been very fortunate but when I think back to how bad the symptoms were at onset I'm happy to be able to show that a sustained, almost complete reduction in steroids can be possible if you are lucky. When I hit the odd wall with reducing the dose it was a case of staying patient and accepting that it might even require a small increase for a few weeks before trying again.
Best wishes.
EileenH TheRadman
Posted
Good to hear - as you see, the forum is a bit depleted - many of us have defected to the HealthUnlocked PMRGCAuk forum after patient.info made this forum so hard to use. If I'm not told someone has posted it hardly encourages people, including me, to come here!