4th day of 15mg Pred. Update and request for your advice again please.

[Grannyasbo]

So pattern continues. Better sleep now and if wake up only getting pain at level 4-5 which is manageable and no more waking up in agony (phew). But on waking pain is more like 7 and general feeling of tiredness is around 4-5 (moderate on scale I found). Start to feel a bit better around 5.00-6.00pm when pain goes to around 4-5 and I feel I have a bit more energy. Am taking it easy though based on advice from all of you. Also have background v low level, what I would usually call a “tired headache” pre PMR quite a lot of the time. Have checked symptoms carefully and don’t think it’s at GCA levels.....?

Please may I appeal to wisdom of the group again (knowing you are expert patients not drs) with the following questions that I am contemplating discussing with my very supportive GP on Tuesday morning:

- is a small improvement on 15mg Pred indicative of PMR diagnosis or is it too early to say?

- If too early how long to test it for? Should I stop it and see what happens? Or

- Should we keep on same lowish level of 15mg or up it a bit? And related

- Is it better to zap the inflammation with higher dose and come down from that rather than have partial relief at lower dose.

- Am I right to think low level “tired” headaches aren’t GCA and should I push for further investigation?

Thank you very much indeed

[PMRpro Ambassador]

For the majority of people 4 days simply isn't enough.You will only get an improvement if the dose is high enough - but it may take a week or even more at a dose that is barely enough. Your doctor is using the early stages of pred to gain information so no, you shouldn't take it on yourself to experiment with the dose without asking them. You have had some improvement and increased pain in the mornings is normal.If you haven't got to 70% improvement in symptoms after a week then the doctor should try 20mg and not decide it can't be PMR because the response wasn't good enough.

A GCA headache is rarely very low level - have you tried ordinary painkillers for the headache? That is always the place to start.

[Grannyasbo in reply to PMRpro]

Thank you for your advice. And reassurance.

[Hidden]

I'm pleased that you're getting some relief, but I'm sorry that it's not been a massive improvement.

I stayed at 15mg, with significant improvement but not full relief, for 3 weeks before moving up to 20mg at which, over approx. 4 - 5 days, I achieved full relief for much of the daybut was still exhausted.

In my experience that overwhelming fatigue and low-grade headache are the last symptoms to go - they're also the canary in the coalmine for when I've been overdoing things.

Don't lose heart. It sounds as though your GP is sensible and responsive and the fact that you've had some relief with pred suggests that you are on the right track.

[Grannyasbo in reply to Hidden]

Thank you for sharing NorfolkEnchants. It’s so good to find others with similar experiences and more long term knowledge than me. Helps enormously when planning how to talk with my GP. Even though she is good I still feel better when I feel confident about EHT I think and feel before we talk.

[PMRpro Ambassador in reply to Grannyasbo]

But bear in mind that for many people the pred doesn't touch the fatigue - at any dose. It is part of the autoimmune part of PMR which also creates the inflammation. The pred only manages the inflammation, the autoimmune part chugs on in the background until it decides to burn out and go into remission. Often the fatigue DOES improve some with time but not always.

[Grannyasbo in reply to PMRpro]

That is v useful info to have. Am learning more every day about this. So hoping for best but prepared for not the best too. Thanks again.

[MrsNails]

Hi, Sorry to be late in replying, l had a frozen shoulder as well as PMR so was slightly worse on one side. I was started on 15mg - it was a gradual improvement, it certainly wasn’t an overnight miracle that some people talk of but by day three the difference was incredible but not perfect. It actually took 10days (l think the shoulder may have been a factor) but by Valentines Day, l was back in high healed shoes & could walk ‘normally’ & l was a bit of a whirling dervish to be honest!

It’s like the Pred had a lot to do especially with the shoulder & l was in the most terrible state so l think the 10Day Miracle was more realistic.

As PMRpro says you really need to follow your Doctors Instructions re the dose as they are looking for your Response to the Drug - so don’t be anxious for a higher dose. Are you really taking it easy or actually catching up on things you haven’t done in a while? It’s so easy to get a bit carried away! You wouldn’t walk in a broken bone & expect it to improve.

Keep Us Update & Good Luck

MrsN

[Grannyasbo in reply to MrsNails]

Please don’t apologise. You do so much on this forum already. Thanks for your experiences. Am heartened to hear I could still be heading for further improvement and am learning patience fast. I just did new post with latest update so won’t repeat here. Best wishes.