It,s All New To Me.

[teanosuger]

Good Morning Everyone

Thanks to the admin team for allowing me to join.

I was diagnosed as having PMR on November 6th 2024 and was prescribed 15mg Prednisolone

along with Codine and Paracetamol.

After a period of 3 weeks i had a blood test which confirmed the diagnosis and the Pred was reduced to 12.5mg.

Within 24 hrs my pains increased again and a phone call to my GP had my Pred increased back to the original 15mg for another 3 weeks.

All my normal activities have ceased, Cycling, Archery , Fly Fishing .

After initially struggling to walk / bend etc i can now manage around 5 miles so this is now my main activity.

I imagine most of you will remember being at the stage i am at, and from what i can gather some people recover relatively quickly but for others it takes longer. Just have to wait and see which category i fall into.

Plenty of reading for me to get stuck into here.

Thank you all.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Maybe have a wander through the FAQs at your leisure - not just bland responses but others experiences as well incorporated. Maybe start with this one [bit long], so please save it/bookmark it or whatever so you can come back to it as time goes by.

healthunlocked.com/pmrgcauk...

Were always open for questions, so please contact any time…

[teanosuger in reply to DorsetLady]

Thanks very much for the link.

[PMRpro Ambassador]

Hi and welcome - and being here is what we do

I'm a bit concerned by you saying you had a blood test after 3 weeks that confirmed PMR - was that blood sample taken after 3 weeks on pred? And the markers were still high?

First - there is NO test that "confirms" PMR, if only there were! It would save a lot of arguments and heartache.

And secondly - if the markers were still raised after 3 weeks on pred, you shouldn't have been told to reduce and there was a good case for INCREASING the dose to 20mg to improve the result before trying to taper the dose. It makes it much easier if all the accumulated inflammation has been cleared out and then you have a better buffer zone for a dose that is only just enough to deal with the daily dose of new inflammation - as you experienced. At least the GP put you back to 15mg but even that may not be enough - you will have to wait and see. And you probably know by now - 15mg to start and reductions of 2.5mg at a time are both pushing it a bit!! Most people would struggle - you are not alone.

[teanosuger in reply to PMRpro]

Hi thanks for the reply

To be more acurate, On first visit to GP i was booked in for a blood test and prescribed Naproxen,codine and paracetamol, after a couple of days the blood test showed high markers, so i was put on the Prednisolone 15mg ,Codine & Paracetamol (Naproxen stopped).

After 3 weeks another blood test showed the markers had dropped significantly but were still raised ,i felt much better but still far from normal, so my GP dropped the Prednisolone to 12.5mg ,this resulted in an increase in the symptoms again so the dose was increased back to 15mg. I have my next appointment at the end of December which is 3 weeks after the increase. Looking back i think i may have given my GP the impression that i was better than i actually was, so i will be more carefull in future.

[PMRpro Ambassador in reply to teanosuger]

Never let anyone think you are better than you are!!!!! Because they will try to rush you - and that really isn't worth it. It is a balance though - if you say something still hurts they may try to convince themselves it isn't PMR after all. Someone the other day was told it wasn't PMR because they weren't totally back to normal in 2 days!

The codeine and paracetamol is probably doing zilch - they have no antiinflammatory effect - and pred is your pain relief by combatting the inflammation. It can take a few months - I had a good 70% improvement in 6 hours but wasn't fully pain-free for about 3 or 4 months, the bursitis and synovitis in feet and hands took longer to go altogether. And really - it is best to stick at the starting dose until the markers have got back to normal range, especially if they started the dose at 15mg which really is towards the bottom end of the recommended range.

[SnazzyD]

Is the codeine and paracetamol for this PMR as well? If so, they will be inadequate because the pain is from inflammation that needs the correct (for you) dose of Pred. It isn’t usual to try to ‘top up’ a too low dose of steroid with pain killers for this reason, however doctors can be so paranoid about Pred that they err on the side of under-treating and fast reductions. All the info you have been given and be linked to will make this picture clearer. You may need to push for a higher dose, at least for a trial.

[teanosuger in reply to SnazzyD]

Thanks for the reply , i agree a higher dose may be reqd, in the first instance the relief from 15mg was significant, but since the first week or so the pain seems to have remaind pretty much the same. I will try halving the codine / Paracetamol and see how i feel.

[teanosuger in reply to teanosuger]

Forgot to mention, the Codine / Paracetamol was origonaly prescribed along with Naproxen before i was diagnosed with PMR as a stop gap while awaiting blood test results.

[SnazzyD in reply to teanosuger]

Normally with PMR they give not much joy. Just had a thought about your comment regards being barely able to walk but now being able to do 5 miles. You are very early days and your PMR activity is likely still very active even if the Pred helps. 5 miles may still be too much. The trouble for us previously very active people, what feels like a big step down is still quite high level by PMR standards. Make sure you leave a couple of days for muscle and ligament recovery. You can then find the difference between PMR pain and over activity pain. Just for good measure there is also withdrawal pain after reducing Pred. Generally, it kicks in a day or so after the reduction for a few days. However, if your inflammation is really not controlled to start with PMR pain can kick back in quite quickly and not the week or 2 that is common. After a while you learn what your body is telling you, it then becomes your job to listen and obey.

[teanosuger in reply to SnazzyD]

Thanks again, My body is doing a lot of talking just recently, I am not able to understand what it is telling me just yet but i will learn.

[PMRpro Ambassador in reply to teanosuger]

Yes, I totally forgot the amount of walking you are doing - I think a bit less and less intense for a bit would be a good idea and always ensure you have rest days to let your poor bashed -up muscles recover between walks. You can do arm things on the rest days if you are desperate!

[SnazzyD in reply to teanosuger]

The main thing is giving it time and space and not allow the head to insist on business as usual in all areas. It does get better but it can feel at the beginning that this is it forever.

[piglette]

The mantra is rest, rest, rest. Sadly you have an illness and the pred does not get rid of it, it just makes it a lot less painful. We have to treat PMR with respect.

[teanosuger in reply to piglette]

Hi, Thanks for the advice.

[S4ndy]

Hi and welcome! You have obviously been a very active person so I understand the need for business as usual. However, if you do a 5 mile walk one day then please take at least two rest days in between. You will find your muscles take longer to recover (repair technically as exercise is micro trauma).

I am a retired exercise professional who used to teach 10 classes a week and attend 2 for myself plus dance, cycle and swim. I can no longer cope with long exercise sessions. A short swim or cycle works best for me. Leaving a day in-between. I walk as best I can but am not good on the pins due to knee are spinal problems. Hence the non weight bearing exercises.

I went to a concert at the weekend, did a little standing and dancing (more a wriggle) about in my seat and the suffered for 3 days after as I felt like I had done a hill walk! So my message is be cautious about your exercise. Try to mix up weight bearing and non weight bearing and have rest days! PMR should be respected so listen to your body and treat yourself with kindness. It's not about how fast you can get off prednisolone as others have said. I find paracetamol helps my other issues but not PMR. Nothing touches that pain except the steroids. I have learnt to differentiate between what is PMR and what is my other issues. I will be entering my 9th year of treatment next year. Started on 30mg of Prednisolone and now on 4mg. Had several flare ups in the beginning but by using the recommended Dead Slow tapering plan I have now been able to reduce to my current dose. My rheumy has suggested I start my next slow reduction in Feb, 6 months after getting to 4mg! So really slow then allowing the body to adjust to the lower dose. This has worked well for me.

[teanosuger in reply to S4ndy]

Hello, Thanks for sharing your experience, I think the message is slowly getting thro to me after reading messages such as yours. I am starting to feel better about my situation. I have not been cycling since my aches and pains started (October 2024) but i do own an electric bike so i intend to have a short (assisted) ride and see how i feel.

Thanks again.

[PMRpro Ambassador in reply to teanosuger]

Just make sure it IS short to start with - electric assisted or not!!! Even the light pedalling required to trigger the motor on some bikes may make thighs protest!

[piglette in reply to teanosuger]

I think some form of exercise is a good idea, but don’t go for the burn!! Just stop at the first sign of any discomfort.

[Angelsmummy]

Five miles!.,😱Glad you have the WISE ONES on here to advise on the medical side of things but believe me,don’t think you are doing yourself any favours with that five miles,not yet anyway!I am out of action so to speak for 2 to 3 days when I have to do a long shopping trip,can just about do necessary jobs and feed OH and menagerie afterwards.The mantra on here is gentle exercise and rest as much as you can .Listen to your body and don’t push yourself,you are on a long journey and you need to let your body dictate what it needs,not tell it what to do.Acceptance of this disease is the hardest part,thinking that our old lives will just come back as normal,sorry but it doesn’t.Look after yourself now and think of the future later as hard as that sounds.we will all get there one day Sincere wishes to you teanosugar,xx🎁🤶🎄😜

[teanosuger]

Hi, Thanks very much for your advice, i was considering getting back on my bike to see how i felt but i have changed my plans after reading all the info and getting advice such as yours.

I am not free from pains in shoulders and thighs yet ( 6 weeks 15mg Pred ) my GP will not increase my dose. I am thinking i will be referred to a rheumatologist at my GP next appointment.