Just saying hi

[Theziggy]

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

[markbenjamin57]

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.

'Uncle' MB

[Theziggy in reply to markbenjamin57]

Hi Mark

My tapering plan given to me is

15mg for 2 weeks

12.5 for one month

10mg for one month

and then reduce by 1mg per month

[DorsetLady PMRGCAuk volunteer]

Hi Theziggy and welcome,

Have a look at attached - may help with your PMR.

healthunlocked.com/pmrgcauk...

Fortunately for you, men seem to have an easier ride than ladies both with PMR and Pred.

[Theziggy in reply to DorsetLady]

Thank you DorsetLady

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

[DorsetLady PMRGCAuk volunteer in reply to Theziggy]

Hi,

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.

[Hidden in reply to Theziggy]

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!!

[Soraya_PMR]

Welcome to the forum Theziggy.

What dose pred are you on now?

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.

What is C25K?

[PMRpro Ambassador in reply to Soraya_PMR]

c25k.com/

healthunlocked.com/couchto5k

[Soraya_PMR in reply to PMRpro]

😳

Thanks

Just off for a lie down!

[PMRpro Ambassador in reply to Soraya_PMR]

You a member too? Makes me feel tired even thinking about it - never mind the potential hip pain...

[Soraya_PMR in reply to PMRpro]

Hip pain, back pain. My body would surely shatter into shards if I ran?

Walking is my limit, and that non too brisk.

[PMRpro Ambassador in reply to Soraya_PMR]

Sounds familiar...

[Rose54 in reply to PMRpro]

Me to

I sat trying to make myself believe I could do it

But had a vague image in my mind of me crawling home from work 2 hours ago

Don't want to call ambulance out today

[Soraya_PMR in reply to Rose54]

Anyone who works gets my admiration.

[Rose54 in reply to Soraya_PMR]

Only 5 hours a day and I get to do a lot of sitting chatting to people

[markbenjamin57 in reply to Rose54]

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!

[Rose54 in reply to markbenjamin57]

Hi Mark

Total agree however more of us are going to have to continue working with long term health conditions due to raise in retirement age .

Have cut hours as much as I am able to but need the income

State Benefits cut back so much imposable to get unless you are totally incapacitated.

Only option would be Job seeking which at my age would be more stressful than doing the job I am now .

Only 12 months to go

[markbenjamin57 in reply to Rose54]

Hi Rose

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!

MB

[Rose54 in reply to markbenjamin57]

Hi

Before PMR I planned to set up my own business as fully trained Alternative Therapist .

But PMR stuck and that idea was put on hold

Hopefully will be able to use skills to help others later down the line in a Charity Position.

At present am happy with my job and company are excellent with Support

I do switch of as soon as I finish work so in that respect I am very lucky

3 years ago I thought I would never return to work so to still be working now shows how far I have come with my PMR journey.

I am actually feel better days I work perhaps as my mind is occupied ?

[DianeA1 in reply to Rose54]

I bet that is it, Rose54: you are preoccupied. At least that is what I find to be the case. I think about my aches less if I have a distraction. : )

[patriciawhite in reply to Rose54]

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 .

[Hidden in reply to patriciawhite]

Hope you got the job, let us know.

[patriciawhite in reply to Hidden]

Passed interview today on phone next one is tomorrow for face to face ,Monday start if successful .

[patriciawhite in reply to Hidden]

Yeaaaaaaaaay I start work on Monday

[patriciawhite in reply to Hidden]

Start Monday Yeaaaaaaaaaaay .

[Rose54 in reply to patriciawhite]

Fingers crossed

Hope you get the job

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 .

I for one would give it to you

[patriciawhite in reply to Rose54]

Yeaaaaaaaay starting work on Monday

[Rose54 in reply to patriciawhite]

Make sure you rest and take things easy

Good Luck

[PMRpro Ambassador in reply to patriciawhite]

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.

[patriciawhite in reply to PMRpro]

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 .

[PMRpro Ambassador in reply to patriciawhite]

All the very best.

[patriciawhite in reply to PMRpro]

Yeayyyyyyy I start work on Monday .

[PMRpro Ambassador in reply to patriciawhite]

Wonderful - what is the job? Do hope you manage well.

[patriciawhite in reply to PMRpro]

Sorry just seen this ,Its call centre work ,I was a taxi driver in my last life but can't do that now it's too gruelling 12 hour nights .

[PMRpro Ambassador in reply to patriciawhite]

Is it going well? I do hope so.

[patriciawhite in reply to PMRpro]

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 .

[bunnymom in reply to Rose54]

Hang in there. You can do it.

[patriciawhite in reply to bunnymom]

Passed stage one got stage 2 tomorrow ,Thanks .

[patriciawhite in reply to bunnymom]

Yeaaaaaay I start work on Monday

[bunnymom in reply to patriciawhite]

Hurrah for you. On to new adventures 💟

[Theziggy in reply to Soraya_PMR]

Hi Soraya_PMR

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)

[Soraya_PMR in reply to Theziggy]

So if all your blood sugars were in normal range, did you reverse your DM?

Hmm, pred, insulin and BS’s, a sticky mess! Hope things settle for you as you reduce dosage.

[PMRpro Ambassador]

Hi and welcome!

"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.

practicalpainmanagement.com...

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:

ww.pmr-gca-northeast.org.uk/stories.php?id=18

[Theziggy in reply to PMRpro]

Thank you

[CT-5012]

Hi and welcome, the preceding comments have said it all. All good wishes.

[Hidden]

Welcome. You have found the right place Theziggy. Great information & understanding support. Take your time. ATB

[Leilagirl]

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!

[Theziggy in reply to Leilagirl]

Not a race anyone likes to run Leilagirl , and it looks like a marathon rather than a sprint so slow and steady as she goes.

[Theziggy]

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.