Pain is now unrelenting. About to rejig meds.

[IdasMum]

I've been taking 5mg Pred for 4+ weeks (plus the 30mg Hydrocortisone in divided dose). You'll recall my Dr said it was too low too quickly. I decided to carry on as I'd got here (unscathed so far) and didn't want to go back.

4 weeks on my CRP has gone up to 6.1 after months at or around 4.3. I am surprised it took so long to show the impact of the drop in Pred. My hands hurt constantly and Paracetamol is not really touching the pain. I have Arthritis in my forefingers and thumbs, my knuckles are swollen (have been for years) and I think the Hydrocortisone is not keeping on top of that. My activities of daily living are now much harder than they were on 8mg Pred back in August.

I'd hope to have been making progress and feeling more well and energetic. Instead I feel I've gone backwards and really want to have reached the level of wellness I felt in August before we head off to Canada next year.

I have decided today to go up to 6mg Pred from tomorrow and took an extra 10 mg's of Pred at lunchtime today. I will email my Dr and tell him what I am doing.

Your thoughts on my plan will be appreciated, thank you.

[PMRpro Ambassador]

If it were me, I'd insist on going back to 8mg pred and ditch the HC. His concept is flawed anyway - and the HC simply isn't managing the inflammation - proof now available. Carry on lie this and you will be back to the beginning.

[IdasMum in reply to PMRpro]

Okay. I need to see him rather than email him. Tempted to do it anyway whilst I wait for appt!

[PMRpro Ambassador in reply to IdasMum]

Think he needs to see you as you are - any hope of that?

[IdasMum in reply to PMRpro]

In 2 weeks time

[PMRpro Ambassador in reply to IdasMum]

I'd turn up at the practice and stage a sit-in ...

[jinasc]

PMRpro is correct. Fight your corner.

Re the arthritis in your hands, I assume Osteo - if correct then Flexiseq bio logical (no side effects. Rubbed all over your hands twice a day.

OK it is expensive - but A stocks it. Not available on prescription.

We found about the hands as when you have put it on - you have to sit for 10 minutes to give it time to disappear - so we just rubbed the leftover over our hands - bingo.

[IdasMum in reply to jinasc]

Thanks @jinsasc. I use Mg Oil for my hands and shoulders and it works well. I'll have a look at Flexiseq.

[PMRpro Ambassador in reply to IdasMum]

If Mg oil works does sound as if it might be muscles although apparently there are studies which found it helped inflammatory disorders and osteoarthritis.

[IdasMum]

Next available appt is 7th Nov. Tomorrow I'll take another higher dose and then go back to 7mg Pred, knock 10mg Hydro on the head until my appt and take it from there.

[borednow in reply to IdasMum]

Any possibility of a "sit-in" at the surgery? In desperation I did this some months ago and it worked. The Receptionists were wonderful and sorted out an appointment with one of the other GP's at the surgery the same afternoon. My Receptionists have always been very helpful - they have a very difficult job and can only do what the GP's tell them. I did deliver big boxes of biscuits and occasionally chocolates during covid as I felt so sorry for them. Note to self: another delivery due!! Good luck.

[IdasMum]

I rang for an earlier appt today, my Dr is on holiday until the 7th (which is when I have already booked). Doing the rejig and will talk ti through with him on the 7th.

2 weeks is too long to wait in pain and discomfort.