PMR for 4 years on 5 mg of prednisone a day, 64 male active still working but not hands on just office, love my motorcycle and walking but if I do anything IE walked around a country show today 4 hours, that’s it me done I fall asleep every day mid afternoon, I hate my body gerrrrr, is there anything anyone knows you can do to overcome this !! That’s legal 😆
Best
Martin
Remember you have an illness, which takes it out of you. Sadly you cannot expect to leap around as you did before. Fatigue is one of the symptoms.
Have a look at thins link for pacing yourself with a chronic illness . -
healthunlocked.com/pmrgcauk......
And this for adrenals, which at 5mg I suspect suspect is a large part of the issue - and if it is the only way is very small steps 0,5mg a time and one of the slower tapers we suggest - and patience -
healthunlocked.com/pmrgcauk...
Just one of the slower tapers - healthunlocked.com/pmrgcauk...
Hi Martin - l know - l see what my friends are doing & what they are achieving……
It’s very much about Pacing Yourself then choosing what’s important & what you really want to do. We all forget sometimes the burden of this disorder.
I was on a Cruise in January & kept eyeing up those Mobility Scooters, l’d had a bad Chest Infection & that on top of PMR that was impeding me, l did feel really sad about it.
These are the days when l have to look back & remember what is was like before l was diagnosed……..
I get one hours complimentary car parking at the Shopping Mall - it’s rare l have to pay as that’s me about beat - if l’m longer we’ve usually stopped for coffee ☕️ I also choose the car park that’s closest to where l want to shop.
My husband wants me on a Walking Plan to increase my stamina - l want a dog to walk with me!……
Martin is my favourite name - that’s what l called my eldest Son 😉
Named after the house Martin as my birthday was May 6th 😁 good old mum. Thanks for the response
Hello again , Michelle here , Absolutely I hear Martin’s Frustration ! At 62 I didn’t expect to be so limited in Energy and Mobility - I resent it ! Plus if I have to be chronically Poorly I want to look Thin and delicate 😂 Not Fat as a House and bright Pink ! I cannot work as don’t have Office Skills , I was Nursing , then Child minding - Both too physically challenging now - Starting a Prednisolone taper , this week from 15 mg daily to 10 mg and also a Methotrexate regime , Anxious about the possible side effects - Glad we have this Support site , Thanks Peeps 🙏 ❤️
It’s tough isn’t it Michelle? Frustrating & very disappointing…..
I’m a bit concerned about your drop from 15mg -> 10mg ~ has this been recommended by your Consultant ?
I’m on MTX & you can find My Story & Info on MTX in the FAQ Section.
MrsN
Thanks for your reply Mrs N , My Consultant has suggested reducing by 1 mg weekly , my GP by 5 mg - so I think a compromise is being decided this week .. after my Blood tests on Friday - I will read your Story , Thankyou , The other Problem I have is Recurrent Shingles / Herpes on my Lower Back - 4 Outbreaks this year ! So on repeat Antivirals - which upset my stomach 🥺 - I don’t think my Family and Friends understand how PMR feels - they think Meds should / have fixed me .. Well far from it ! Best wishes everyone coping with this weird Blight 🙏
The general consensus is to drop by no more than 10% - GP’s have more experience with Patients on a Short, Sharp Dose of Pred for Chest Infections, Asthma etc.
Because of our Inflammation Levels we need to reduce more slowly or we get a kick back ie a Flare which is what you don’t want.
How long have you been on MTX? When l was on it first l was able to reduce by 1mg per month until l reached 9mg & from there l went down in 0.5mg drops to 7.5mg……..
Antivirals are not pleasant, they do take it out of you.
There’s quite a bit of info again in FAQ’s on explaining it to your Family & Friends……
It isn’t easy 🤦🏻
Thanks , I haven’t started on the Methotrexate yet , but the Plan is 6 tablets once a Week if my GP agrees with the Taper , Trial plan - ❤️
I'm not impressed by the 15 to 10mg drop either - and even 1mg weekly is a bit much - 1mg every 2 weeks would be far better. Even 2mg and reassess after 2 weeks would be preferable.The GP is telling you to reduce the way he uses pred for everything else - but PMR isn't like a chest infection or asthma, it is a chronic, continuously ongoing condition and you are looking for the lowest effective dose not simply getting off pred. It has cured nothing - it is a management strategy. You MAY be able to drop faster when on MTX - but there is no guarantee and it doesn't kick in for months in some patients. You can't start MTX and reduce the pred immediately.
Thank you for your support PMRpro , My Consultant was reassuring in that he said he would be back in touch regularly to check how I was doing - but asked me how I wanted to manage Medication ? Well as someone without Experience I feel rather dependent on his 😊 - I predict I’m going to feel more Tired .. like 12 hours in Bed sometimes ! Best Wishes all 🙏
Have you read the section in FAQs about tapering pred? I'll give the chap a brownie point of being willing to discuss it with you. It means he's aware patients are all different.
Yes , he’s unusual for a Physical Health practitioner , in my Experience , He leaves Silences between us in in the Discussion too .. Something I’m used to having worked in Mental Health 30 years - But in Physical Health Drs are often rather Brief and keen to summarise and dispatch I’ve found till now - 🙏
As Pro says it takes 12weeks for MTX to be fully working, some people can start a 1mg Reduction after one month (l did the first time) but this time it’s not so easy however l have a lot more going on these days 😞Your Consultant is the Expert in PMR & MTX your GP won’t have any input over that other than to issue your prescriptions (it’s called Joint Care) my GP never interfere with my dose but always asks how l’m doing & is pleased l’m back to 9mg again….
You will get good support from the Rheumy Team Nurses once you start MTX in my experience they have always been excellent.
Good Lucky 🍀
MrsN
Methotrexate helped me a lot. i’d never been able to cope below 10 mg until i started methotrexate. i was unable to take it long enough before blood tests showed my immune system was too badly compromised. went back to pref but came down easily to 3mg. currently on 0 mg but very cautious. 6 weeks ago I got trampled by a hors and broke several vertebrae and have been worried that the PM R or GCS would kick off again , it’s been a long 5 years and i’ve only just turned 60. i’d lie some energy for the next decade!
A combination of the PMR still being there and adrenal function staggering along I'd say. Four hours walking around a country show would finish me off - even with stops every hour at the tea tent! And every country show I've ever been to is on uneven grass surfaces - and that is truly exhausting.
Yes -a very tiring day out event when you’re healthy!
🌞 Yes ! Uneven Surfaces - a lot more tiring , my Hips and Ankles find walking on Grass definitely more stressful on theMuscles - 20 minutes and I’m done - But Bravo for getting out there , take more little sit downs ,being outside in nice surroundings is good for our Mood 🙏
Yes - that was me last Thursday after visiting the Spring Garden Show at Malvern . The next day was a write off, but I was glad to have been there even if my bank balance took a bit of a hammering!Just par for the course with pmr I’m afraid.
Paddy
Aah Martin if only we knew the answer to this one! The best we can do is say we ALL suffer from fatigue to some extent and we stand with you in solidarity! The others have already said all that I would say. It really is about pacing yourself and accepting you are not what you were which is a grief in itself. I have a lovely brother also called Martin who also has PMR he is down to 2mgs. I am on four and treading very carefully to come down by half an mg. Patience is the name of the game....
This post brings me hope, sorry for jumping in 🌷
Note my diagnosis is Stills Disease which manifests as RA with extreme fatigue.I take an old hunting stick that opens into a little seat and sticks in the grass!
You obviously have a little bum 
They always struck me as too small!!!!
It is one of the pluses about a rollator - you always have a relatively comfortable seat and something to carry everything. Not sure what I was watching the other day - big lecture from a physio about getting one if you felt you needed a walking stick at all. Oh, I know, it was in Casualty 24/7, in A&E when one of an elderly couple were being assessed for being allowed home but both used walking sticks. And the physio pointed out that you walked much better with one so were less likely to trip.
Hi thereI've been on prednisone 7 years. A year ago I was at 5mg and was feeling exhausted just like you.
I knew fatigue would be an issue because your adrenal glands are trying to kick in and your not getting enough from prednisone but my fatigue seemed excessive.
I asked my rhumitologist to test my adrenal glands but she stuffed me off.
This year I'm down to 2mg and again I insisted strongly and was tested fir cortisol levels and sure enough mine are extremely low.
Now I wait to see an Endicronologist end of June.
What scares me the most is the 4 covid shots I've had and I don't feel like I have any antibodies which is scary with covid still around and being in adrenal insufficiency can be dangerous. You don't want to catch anything even a cold can be life threatening.
I pray they ate just supper slow because I don't want to go back on steroids.
Good luck and get tested if you can.
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