After 3 months of pain and no diagnosis from my very helpful GP who put me on prednisone which helped with the pain, finally saw a rheumatologist yesterday who reckons I have PMR. He has upped the prednisone and then is tapering it off through the upcoming weeks.
I am a 59 year old male.
I also have type 2 diabetes and the steroids have shot my blood glucose sky high.
I was a runner but haven't ran or been able to run since my first 'attack' on the 16th March. When my groin isn't too sore I walk, maybe 5 - 7 K .
So, not really happy to be in the PMR club, but glad to have found this forum as I am a member of the C25K on Health Unlocked.
Hello to you all from me
Written by
Theziggy
To view profiles and participate in discussions please or .
Greetings ziggy, welcome to the club that none of Us Lot wanted to join!
It's always good to have 'Newbies' posting here - especially the relatively few of us Lads with PMR or GCA. Your story sounds quite typical in terms of reduced exercise - I can relate as a former squash player. Yes, PMR does impact significantly on physical stamina, strength and agility due to the inflammatory process. So, it's sensible to pace your activity and not try to 'push through' the pain / stiffness etc - as some try to. You sound like you're doing the right thing.
As for tapering the steroids: only to say that some (many?) GPs and even Rheumies advise a standard tapering 'plan' that is arbitrary and involves periodic step-downs per week / month to zero (e.g. drop by 'x' mg each month). This works for some PMR patients but is often associated with nasty flare-ups and / or steroid withdrawal symptoms, where the rate of tapering is too fast / by too much for an individual patient - and so you go back to square one in terms of dosage to control the flare-up.
There are many useful Posts on the topic of Pred tapering here - I recommend that you take a look at the DSNS method or its equivalents. No guarantees, but these smoother / more gradual tapering methods often reduce the risks and consequences of abrupt reductions - even if it takes longer to approach the elusive (for some) Club Pred Zero. The 'old' wisdom is that PMR burns-out in 2 years - but more recent research suggests that this is optimistic - with 3+ years being more typical in the best case. Sorry to say it but, even for relatively fit and young patients, PMR is often a long haul in terms of going into remission. I am 3-ish years into PMR and 'getting there' currently at 2 mgpd Preds - not bad all considered.
I'm sure the forum 'Aunties' and others will be along soon with their thoughts too. Just to say, this is an excellent and trusted resource of support and wisdom around all things PMR and GCA. And.. we have a lot of fun in between talking about the 'tough bits'!
Best wishes and please keep us posted on your PMR Journey.
From reading some info about PMR I don't seem to quite fit the profile, it talks of stiffness/pain in the morning easing off during the day, my flare ups have all gotten worse during the day from just a localised little pain in the morning to full limb pain/disablement by the afternoon
A lot don’t “quite fit the profile” which makes it difficult for definitive diagnosis at times.
If your symptoms get worse rather than better during the day -
then maybe you are not on enough Pred,
you are trying to do too much,
or your body is not getting the full benefit of the dose (some people find their bodies don’t process the medication as well as others and therefore only get, say, 50% relief whereas others get 100%).
As I said in intro the inflammation is produce around 4am, and depending on whether you take plain or coated Pred they take a while to work, but you should get relief during the day. Think you need to discuss with GP or Rheumy.
It might be worth raising another post specifically relating to this aspect - more likely to get a response from other who have had same problem.
I had your problem, felt reasonably ok till I took my preds after breakfast then it was stiffness aches, pains and fog till around 3pm. I started splitting my dose, taking it before a sleep. Around 5am then back to bed, after lunch then afternoon snooze, have been able to reduce from 22.5 to 15 without problem but will go slower. When I'm awake I have energy now and gradually able to do more things. Can now cut up my own meat on the plate and can walk further though in yards rather than miles. Hope your journey is a short one, has taught me to be more sympathetic to others now I know what real pain is!!
There’s a search function, try that for discussions on low carb diets which is the way forward for controlling blood sugars and preventing weight gain on pred. (Also for reversing T2DM).
Your groin pains should ease on an adequate dose of pred, I remember those, quite common with PMR I think.
Yes Rose. But chatting to people (professionally?) and 'Active Listening' - although often rewarding - can involve a lot of mental and emotional energy and 'giving' , as I know in my work too!
I agree. It's a real economic challenge for many of Us Lot - regardless of PMR etc - and in the current economic conditions (uncertainties around Brexit included).
All I can say is: just try to keep Positive and focusing what matters most: e.g. keeping afloat financially - even if we have to find inventive ways to do so.
From experience: entering (or re-entering) the current 'proper' (i.e. full-time or part time) job marketplace is often so fraught with hurdles nowadays that it can sometimes be a better option to be self-employed using one's skills and experience from the past.
Of course, this is a scary and un-predictable employment territory for those of us who have previously enjoyed the benefits and security of 'Employed status'. On the other hand, there are many success stories out there about those who have broken free and started their own Enterprises.
Maybe time to review how you earn a livelihood, and do some creative thinking - as I have done in my PMR journey too!
Hi I have at 66 years of age ,got a job interview this afternoon , I have not worked for 16 months and the drop in income has been debilitating .Thanks Teresa May . I am not a Windrush victim but a Canadian who has been here over 60 years .Suddenly became stateless under the same immigration debacle .Short version of a long story .I now have the status I always did ?and can once more work since she changed things around . Wish me luck ,been off the steroids for 6 months now after 5/6 years of yoyo ing . I think I can manage a few more years to make up the short fall .
If battling a serious illness , making steroids your best friend , having the courage and strength to get to the end of the tunnel is the criteria for the position you deserve the job .
Hope it went well - I can't imagine going back to work at not quite 66! I'm disgusted at the gubmint who have made such a mess. They should be made to walk in your shoes for a few months.
Passed telephone interview today ,I have face to face tomorrow . Then if successful start Monday HA HA HA I am 67 in October . The government have cost me all my savings which were not vast but savings anyway , 15 Months full time wages and huge expense for solicitor and docs and stuff to stop them from deporting me . Stressful but all over now . I even had a citizenship ceremony when I got my British passport . I hope you have many years of happy travel she said . I felt like telling her I wouldn,t be able to afford to use it because of having all the cost of getting it . lol .
I will admit I am struggling some times only with the sitting (stiffness) and the actual work eurrghhh lol but I will stick with it as long as I can and it's good to get up and go to it .Pennies are welcome as well ! I don't think the ''and where do you see yourself in 5 years time '' interview question needs answering . I answered with mirth . I see myself in 5 years time looking for ward to promotion She scribbled it down bless she was young .its ok ,thanks for asking .
Before diagnosis I was on 15mg for a week, my GP then reduced this to 10mg (remember he didn't know what I had), flare ups returned so he upped it to 12.5mg with the proviso that I could take more if needed, and I remained on that for a month until I got my 'urgent' rheumatology appointment.
I have had days when I ate zero carbs and my blood sugars were still soaring, I am well versed in low carbing from being a member of a very good diabetes forum and have never had to take meds for my type 2 diabetes - all my HbA1c results have been in the normal range (until now)
"He has upped the prednisone and then is tapering it off through the upcoming weeks"
I do hope he means months!!!!! PMR is a chronic disorder - and as MB has already said the 2 year so many doctors quote is a myth for at least 80% of patients! The median duration of PMR is 5.9 years - which tells you that the taper is likely to need to be a slow one if you want to be successful and not have flares. Unfortunately a lot of doctors are very gung-ho about reducing the pred dose - it isn't their pain or problem so they try to get us off steroids asap and it ends in tears all too often.
A guy on the forum some years ago was a fire fighter and marathon runner/mountaineer when his PMR struck and forced him into a wheelchair. It was about 18 months until he got back to running - and now is back to his old habits! You will get there - but Skinnyjonny did it slowly, no rushing! Google "skinnyjonny pmrgcauk" and you will get links for him. This is a link to his "My story" page on the NE of England support group site:
Welcome to our special forum. You will be supported here and find valuable information from compassionate and knowledgeable PMR’ers-GCA club. I will not offer info as I am new as of March 5, however my eyes and ears are wide open for info as I travel this course ahead. Best wishes to you and this is not race I have learned. Darn it!
Rheumatologist on last appointment said he would see me one more time and if everything was going good would transfer my care over to my GP. Still on 10mg, have little bits of pain in my left groin (where it started) but mainly pain free (touch wood)
Even started running again, albeit very slowly, seems so tough now.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Differentiating PMR pain from Prednisone myalgia pain?
Just saying Hi~~
Severe pain for 5 months
Hi from the USA!
