Update on post re Flare or Muscle Pain

[sewinggranny]

I followed the advice for dealing with a flare, ended up having to go back up to 16 Mg (I had got to 10mg, but adding just 1mg to the level before the flare didn't help). Eventually after a week the pain and stiffness improved so after 2weeks I dropped by 2mg for a week. then another 2 mg for a week. I saw a GP a week ago, she wants me to continue tapering with the comment that this will be gone in 18 months! I explained that back pain was affecting my mobility and was given Voltarol Emulgel. I've used it four times a day for the last week and I can't feel any improvement, also using paracetamol, which isn't helping either, if anything I'm worse than I was before the flare. The only thing that seems to help is heat from a wheat bag. I'm struggling to get out of bed, get dressed, move from sitting to standing and feel to have very little muscle strength and energy. I have had a quote for a stair lift, and a profiling bed has also been suggested which would make life easier but I keep hoping that the current problems are temporary.

At the moment I'm tempted to go back to 16mg, ask for blood tests to check for inflammation and stay on 16mg for 3 or 4 weeks, and then taper 1mg each month as I was doing before.

I've lost confidence in our surgery, because they rely on locums, it's always a different GP with different ideas. The one I saw last week suggested referring me to a Rheumatologist. I've heard our local Health board is in Special Measures and I know the waiting time for appointments is horrendous. Can anyone recommend a rheumatologist near Wrexham or Oswestry? I would be grateful for any advice.

[PMRpro Ambassador]

"she wants me to continue tapering with the comment that this will be gone in 18 months"

Is this a GP or a specialist? Either way - she doesn't know what she is talking about! Take the offer of the referral so you are at least in the system.

The rheumies at Oswestry are very good I believe - unfortunately you have probably just missed MrsNails who is in that area and knows the options, she's off on a cruise and may already have left. I don't know the rheumies at either hospital but different departments have different waiting times.

Would you consider a private appointment to start off? I do realise that isnt't an option for many.

In the meantime - my similar back problems are neatly sorted by good physiotherapy so does your practice have physio available?

[sewinggranny in reply to PMRpro]

Thank you for your reply, yes I would be willing to book a private appointment. We have a Spire Hospital in Wrexham and a Nuffield hospital in Chester. I will enquire whether there is physio available in our practice.

[PMRpro Ambassador in reply to sewinggranny]

What is important is to get the right rheumy, especially when you are paying! Let's see what names come up.

[sewinggranny in reply to PMRpro]

I've looked at the profiles of the rheumys who work at our private hospital, one stood out, PMR was listed as an area of interest and this person also works for the NHS at Oswestry. I will contact the surgery and ask for a referral letter.

[MrsNails in reply to sewinggranny]

If you PM his name l’ll let you know if l know them

[MrsNails in reply to PMRpro]

Greetings from Grand Canaria (in a Shopping Mall)

If you hope to be seen in Oswestry may l suggest The Nuffield in Shrewsbury as that’s where the Oswestry Guys tend to see PP’s

You can check them out on the Website.

MrsN 😎

[sewinggranny in reply to MrsNails]

Thank you Mrs Nails, I know where the Nuffield is in Shrewsbury, will have a look at the website.

[powerwalk]

You have my sympathy! My back is horrendous. Really depressing. Let us know how you get on, i hope you get some relief soon. Eighteen months!! I remember when i was told that by the rheumy!! If only i'd known!!! Hope you get sorted soon.

[sewinggranny in reply to powerwalk]

Thank you for your reply. The best one I had was the cardiologist I saw last October who said it would last 6 months! If only that were true!

[powerwalk in reply to sewinggranny]

Oh i know!!! And mine took me off the pred and left me in a shockin state so dont let anyone bully you into anything!! Best wishes.

[sewinggranny in reply to powerwalk]

Thank you powerwalk, went back to GP again yesterday as no improvement in the pain, if anything it's worse. GP thinks it's muscular rather than PMR. has now decided I can stay on 12mg pred for 4 weeks before reducing again by Img and has given me co-codamol for the back pain. Just hoping the co-codamol works!

[powerwalk in reply to sewinggranny]

I hope you get some relief. We dont need these extras!

[HelenDaisy]

I think a private rheumatologist would be good: I did that at the start of my PMR in April 2019 and now I’m managed by a GP and nhs rheumatologist.

[sewinggranny in reply to HelenDaisy]

Thank you for your reply. I will ask for a referral and book a private appointment.