12 days since upping Pred . Now on 20mg and still hurting with PMR symptoms

[Marek1]

Hi Everyone . follow up on my post 12 days ago , (Thank you for all your advice and concern ).

After severe stress in my life ,I reached out on here to ask about boosting steroids from 12mg upwards . Assuming it was a flare I went up by 5mg to 17mg with the view to stay there for a week and drop down to say 13 ?

After a week I was still in a bad way with PMR typical pain ,shoulder, back of neck , radiating to arms , fluish like symptoms occasional evenings before bed.

I rang my GP asked for his permission to go to 20mg . He gave it, but had a hissy fit at the same time about me having been on an average of above 10mg of steroids for 2 years. and now I want to increase to 20MG!

He said to go to 20mg , drop down after 5 days back to 15mg. I`ve done 7 days now and symptoms are still strong with some sort of pain all the time together with fatigue .

Any advice please? do I just drop back to 15mg and be prepared that PMR is going to get worse possibly ?

He has made me an first appointment with RHeumy at last . And whats to discuss the drug that makes you less dependant on steroids if it works . is it Methatraxate?

Arrgghh what a mess !

I desperately want to reduce the steroids BUT forgot what PMR symptoms are like when they are bad !!

Thank you

[DorsetLady PMRGCAuk volunteer]

Sorry to hear this

He said to go to 20mg , drop down after 5 days back to 15mg. I`ve done 7 days now and symptoms are still strong with some sort of pain all the time together with fatigue .

In that case you need to get back to him and tell him so... and dropping down to 15mg whether in one go or tapering is likely to increase symptoms -if they are all down to PMR.

.. and yes Methotrexate, but that can take a few weeks to make a difference - and it sounds as if you need more Pred rather than less at this time...

"Difficult conversation with GP" alert I'm afraid..

[Marek1 in reply to DorsetLady]

Thank you, ringing him now

[DorsetLady PMRGCAuk volunteer in reply to Marek1]

Good luck…

[piglette]

Have you tried taking painkillers to see if they help?

[Marek1 in reply to piglette]

Hi Piglette , yes I`m on paracetemol daily

[piglette in reply to Marek1]

Does that help? I was just wondering if you had something else rather than just PMR.

[Sillydogsmum]

Fwiw, I have a big flare now after Covid, 14.5 to 20 for 10 days no better, now on 25mgs for 3 weeks,and am just decently improving since about 4 days. A decent flare takes a while to settle. All okayed by GP ie perfectly acceptable manoevre.

[Marek1 in reply to Sillydogsmum]

Thank you . how long have you been on pred in total ?

[Sillydogsmum in reply to Marek1]

End July 23

[PMRpro Ambassador]

MTX is a longterm hope for most - can take months before it makes a difference. DL was being optimistic with weeks. And the GP can discuss it all he wants - he doesn't get to initiate it, it requires a rheumatologist. The GP just monitors and prescribes,

A flare is always harder to get under control than at the start and the starting dose may need to be up to 25mg and even more. If the stress is ongoing you will struggle probably - and really the GP is between a rock and a hard place because even if he were to up the pred for you to a level that works, the rheumy may have a hissy fit when you get to see him, and want to see what you are like without pred,

When will you get to see a rheumy?

[Marek1 in reply to PMRpro]

Hi PMRpro Thank you , I am due to see RHeumy next week

[PMRpro Ambassador in reply to Marek1]

Good