Prednisolone Week 1 Completed

[Paulx222]

UPDATE:

So, my first week of Prednisolone is over....30mg goes down to 20mg today.

My symptoms are MASSIVELY improved. I would say I'm about at 85% full functionality in all areas. I still experience some pain in my right shoulder on waking and also in my right hip. My hand stiffness has virtually completely disappeared, I am not woken at night at all by pain and sleep through for about 6 or sometimes 7 hours.

Range of movement is still limited but that's mainly due to pain when I extend and lift my arms.

I don't have to stop when driving to stretch my hips anymore and things are so much different from seven days ago when I was up at 4am crawling up to the shower in tears.

All in all, I'm massively improved so would this further lend itself to PMR being a correct diagnosis or should I still be vigilant to other possibilities?

As this is still completely new to me, I still have plenty of other questions regarding this situation and so here they are if anyone has the answers:

1. I have noticed some leg twitching at times....is this normal?

2. In my mind I thought the Prednisolone would clear all symptoms.....is it normal to still be aware of/feel the condition and still have better and worse days even when on the meds and at the same dose?

3. Will range of movement pain ever go or is that kind of here to stay?

4.If I notice symptoms return after dropping from 30-20mg this week, should I contact the GP or just try to ride it out?

5. Would it be ok to up my dose to 30mg myself if I get bad symptoms back? I am aware that this is Christmas and I'm unlikely to get to see anyone during this period and I don't want to be suffering over Christmas

6. I have an NHS Rheumatology appt in February.....should I still keep that or ask my GP to lead on this now if it is PMR.

Many thanks again to everyone here.

Have a great Christmas!

I'll keep updating as I go along in case it's useful for younger male sufferers.

Cheers

Paul x

[PMRpro Ambassador]

That is great news - really does add weight to the diagnosis. To be that much better after a week is really good and it is likely that a lot of what is left will improve over time - some of my pain took a few months to really go but I was only on 15mg. Bursitis tends to take longer than the muscle problems. I don't have range of movement pain - I used to do Pilates and Iyengha yoga which helped a lot though only after having done an aquafit class first!

If you get increasing symptoms then yes, try to get advice from the GP. 20mg is a normal starting dose so you should be OK - PROVIDING you don't go mad and try to do things you shouldn't yet! Part of management is up to you with pacing and resting, YOur muscles are more delicate than they were, both due to PMR and to pred.

I'd suggest a discussion with your GP about the NHS appointment. I assume it is with a different specialist? Sometimes NHS doctors who don't do private work may get a bit snotty about "other diagnoses" and it would be an absolute pain if they got it into their head they need to do their own investigations and want you off pred to do so. It has happened. What is the situation with the Benenden consultant? A GP is often perfectly able to manage PMR and you have got a diagnosis from a specialist. Does he remain in the background for further consultation or is that now closed?

[Paulx222 in reply to PMRpro]

Hi!!

Many thanks, as always, for the response.

My Private Rheumatologist will see me one last time in Feb and there will be a gap between my last Prednisolone and that appointment

The plan as given to me by the Benenden specialist is 1 week 20/15/10/5mg until zero.....if that fails and symptoms return he will recommend a reset and longer term plan. He will relay all this in a letter to my GP but I haven't seen this letter as yet, so I'll chase up.

I will take the advice re. rest and activity. I was surprised yesterday, just how much relief I got from lounging on the sofa watching Liverpool v Man Utd .......rather than being dragged around Christmas shopping.......may be this thing does have the odd advantage!

[PMRpro Ambassador in reply to Paulx222]

Oh yes - I'd forgotten the slightly lunatic taper he claims works for one in three. I suppose that does provide some excellent documentation of the effect of pred - and one additional bit to go with the speedy response at the start is the return of symptoms in a similar timeframe on stopping pred. A week should allow plenty of time to see that in action if it IS PMR.

[Paulx222 in reply to PMRpro]

Looking forward to that.....not really.

[DorsetLady PMRGCAuk volunteer in reply to Paulx222]

Well the result looks boring, so perhaps it wasn’t too exciting to watch.. 🤦🏻‍♀️.. depends how fanatical you are about either team I guess.

My rugby watching was a bit stressful yesterday, TV decided to sulk and go off in a huff - so had to watch on iPad - not the same….

[Paulx222 in reply to DorsetLady]

Ha!

Who do you follow? I'm a Rugby League fan myself (the proper code), follow St Helens all over!

Was this the Quin's game?

[DorsetLady PMRGCAuk volunteer in reply to Paulx222]

Me -Exeter first choice, Bath second choice…

Do like Quins as well -but they were walloped yesterday.

Might have to disagree on the “proper code” -but then I’m a southerner😉

[DorsetLady PMRGCAuk volunteer]

Good news, and nothing to add to PMRpro's comments... except to say don't, in the excitement of it all, over exert yourself...

.. and a good GP is quite capable of managing PMR.

[Paulx222 in reply to DorsetLady]

Bit of bad blood between me and my GP......thinking of switching surgeries at this point......

[DorsetLady PMRGCAuk volunteer in reply to Paulx222]

Okay - well now might be an opportune moment - new eyes and all that!

[Hidden]

Hi Paul...good news...so far. I am going to make sure that I nail down the advice from my healthcare professionals so that I know exactly who to contact if I run into problems and exactly what the timeframe will be for getting them sorted. Standard practice from my GP surgery is for the receptionist to offer you a phone call with a GP (not necessarily one who knows you) in 3 weeks time. I seem to have a direct line to my rheumatologist who gets back to me within a few hours and who made me an appointment with him in just a few days time last time I had a problem. Keep well and good luck...write down the answers to your questions and quote them back if reality turns out differently!

[Paulx222 in reply to Hidden]

Yes, I mean, I can't even compare today to a week ago really.......I still focus on the pain as it occurs as I'm always looking to see what's happening but last week and this?

Like chalk and cheese.

Fingers crossed it continues!

[SheffieldJane]

This is almost definitive for PMR I would say. You are lucky to report 85% relief of symptoms so soon ( 70% is often what’s promised).

1 You are still ill and have to act accordingly. There are bad days, usually following exertion or stress.

Not sure about the leg twitching, but I have had so many weird symptoms that nothing surprises me. Get advice if it persists.

My range of movement did gradually improve. I was so happy to be able to raise my arms above my head eventually.

My Rheumatologist has given me my head with my dosing because “ I am a sensible patient”. In the absence of her advice I would return to 30 mgs until she became available to talk to, rather than my inflammation getting worse.

I would still take advantage of a Rheumatologist appointment especially a good one, although you are right, PMR can be treated at primary care level. You are at the young end of PMR sufferers and want to clear up alternative diagnoses. Wishing you a painfree Christmas. You are doing well in my view. X

[Paulx222 in reply to SheffieldJane]

Thanks Jane,

Hope you had a lovely Christmas

[SheffieldJane]

You too Paul! X