PMR pain continues

[Notimeforpain]

I am now nearly three months into my journey with PMR. At the beginning of July I started on 15mg Prednisolone, reducing to 12.5mg in mid-August. Blood tests at the beginning of September for erythrocyte sedimentation rate and Plasma C reactive protein came back as ‘normal’.

My question is this: If blood tests are normal (I understand this means that my inflammation levels are normal), why am I still experiencing PMR aches and stiffness, particularly in the morning? If it’s not inflammation causing the pain - what is it?

I’m due to go down to 10mg Prednisolone next week. What is the medication actually doing if everything is ‘normal’?

I just can’t get my head round this and feel pretty stupid.

Thank you to everyone on this forum for your support.

[DorsetLady PMRGCAuk volunteer]

Many people don’t have raised markers - even before diagnosis - and even if you did then, you don’t know how long for,the inflammation to build up enough for them to be raised.

Once on Pred they should be back in ‘normal’ range, but that’s the work of the Pred.. and as we say time and time again on here, they do have a habit of lagging behind symptoms.. so they aren’t the perfect reflection of the state of your PMR that some think.

My introductory post contains advice including on why you feel more pain in the morning - and how the Pred works on your PMR. Unfortunately the site is playing up at moment - but will link it as soon as I can.

healthunlocked.com/pmrgcauk...

.. No reducing whilst in pain…

[PMRpro Ambassador]

Probably because every morning the new dose of inflammatory substances is shed in the body and is starting to create inflammation - but when you take the pred, this sorts it out and your symptoms improve.

There must be enough inflammation present for long enough to trigger the liver to produce the proteins that make these blood markers rise. Some people take their pred at 2-3am - even less of the inflammatory effect can happen as the pred is there, ready and waiting, so it never gets hold. You can sometimes achieve a similar effect by splitting the dose, about 2/3 in the morning and the rest later enough to carry the antiinflammatory effect over to the next morning dose.

No need to feel stupid - your question is a perfectly natural "what's going on then" response. Even doctors don't "get" it quite often!!!

[piglette]

Steroids do not offer one hundred per cent reduction to a lot of people. Oh that they did. You should have at least 70% improvement though and your markers may show up as normal even though you do not feel one hundred per cent.

[Hidden]

It may be that you never had enough Pred to dampen things down sufficiently to initiate a reduction in dose.

[Zebedee44]

Sadly PMR will not respect your chosen name Notimeforpain and will be in your life for as long as it choses to, with the pred simply relieving most of the pain and inflammation. You cannot rush it, you just have to learn to manage it, and that includes adjusting your activities.

Personally I found splitting the daily dose worked well for me so that I started the day feeling well enough to manage my active life with my pony. Frustratingly an unrealistic tapering schedule from my doctor sent me right back to the start in about six months and I had to learn to take it much more slowly.

You certainly don’t need to be in pain if you manage your meds and your lifestyle well, but it’s is a steep learning curve to start with. Best wishes.

[PlymouthAndy]

I am on a similar journey to you - my PMR started late July and I was increased from 15 to 20 Pred after 3 weeks and even 20 didn’t provide full relief. I have found this Forum immensely helpful and suggested to my Doctor that I try splitting my dose (as others have successfully done) and the following morning I awoke for the first time in nearly two months with no symptoms! 4 weeks later I am still symptom free- I take 10mg in the morning at breakfast and the other 10mg around 7pm after my evening meal. I’m like you I wonder what the morning tablets do as I have no symptoms. Now comes the difficult part for me - reducing the dosage. I have agreed with my Doctor to “self regulate” so I am starting very slowly going down to 18.5 initially and working towards 15mg over the next 3-4 weeks. I am reducing the morning dose whilst keeping up the 10mg in the evening. Best wishes - hope you make good progress.

[DorsetLady PMRGCAuk volunteer in reply to PlymouthAndy]

Once you get into the swing of things and if first taper works, would suggest your next one is the evening one… and for info although you’ve gone for a 50/50 split, usual advice is 2/3rd am, and 1/3rd pm. But as we say, whatever works for you.

Do you mean 18.5mg or should it be 17.5mg? See how you get on reducing to 15mg , but then maybe only 1mg a time rather than 2.5mg especially as you had a bit of difficult start.

[PlymouthAndy in reply to DorsetLady]

Many thanks for your guidance- I am dosing 18.5 using 5, 2.5 & 1. My initial split was 15 & 5 but after several days it became obvious that I needed to up my evening dose. I have had no symptoms for around 2-3 weeks at 10 & 10. As you suggest I’ll move slowly reducing the dose

[DorsetLady PMRGCAuk volunteer in reply to PlymouthAndy]

Okay thanks for clarification…

[PMRpro Ambassador in reply to PlymouthAndy]

I'd say take longer than 3-4 weeks from 20 to 15 - at least double, if not more.

[AtopicGuy]

In addition to what's been said: are you being kind to the muscles that keep getting sore? Too much exercise can be a problem.

[ChrisBeeLoop]

The experts above have really said it all but it's perhaps worth re-emphasising not to taper too fast. If you started on 15mg, that is on the low side, and then as a rule of thumb don’t reduce by more than 10% in one go. Personally I only taper by 0.5mg at a time. And listen to your body as well, not just the doctor.