Hit the wall again!

[Griggser]

so I’ve been trying to reduce from the 10mg I was sort of ok on. Well after tapering over a couple of months I’m down to 9mg again and once again I’m in a lot more pain. It’s especially bad at about 3:30am when it really is painful to move. I’m very stiff in the morning after getting up around 6-7am, sometimes 4am. I don’t really sleep between 3:30 and when I get out of bed and o don’t really feel human until around lunchtime. I’m pretty sure I should go up again but don’t think just going back to 10mg will cut it!

On another note I’ve decided to stop taking the statins I was encouraged to take. A visit to the doc recently about painful hands resulted in him saying try to stop taking them for a couple of weeks and see if that helps. So that was my cue to stop altogether.

I eventually got a date for the rheumatologist appointment which was duly cancelled then rearranged for when I’m away in Lanzarote. I’m so fed up with the whole thing I’ve told them to cancel the refferal. I don’t think they can offer me anything I haven’t tried or any better help than I get on here.

I did get an appointment with the pain clinic about PHN and the upshot is another drug to try!!!

[PMRpro Ambassador]

The 10mg might work providing you use the flare protocol first. And you know perfectly well that sticking with a dose that is too low has a rather dim outlook!

The timing of your night time pain seems not quite typical unless your pred isn't lasting the full 24 hours. Have you tried splitting the dose to extend the antiinflammatory effect to the full 24 hours? If you have and it hasn't made any difference, then I think a different view is called for.

I see that you have struggled to get a rheumy appointment and the state of the NHS just adds to that difficulty plus you never know who you will get - so is a single appointment with Rod Hughes an option? If that were - and it is Christmas soon - then I suspect he might have some very useful thoughts on the whole thing. He is very good at out of the box thinking.

[Griggser in reply to PMRpro]

Thanks PMRpro. All good stuff and I’ll investigate Rod Hughes.

[Tuppence55 in reply to PMRpro]

Who is Rod Hugh’s please

[Bridge31 in reply to Tuppence55]

Rod Hughes is a Rheumatologist in Surrey.

Unlike a lot of Rheumys he understands PMR. If you make an appointment to see him you will find him empathetic and knowledgeable about not only our condition but how we are actually feeling.

[PMRpro Ambassador in reply to Tuppence55]

topdoctors.co.uk/doctor/rod...

Contact via this site isn't recommended but it tells you who he is and there are some fairly good videos. If anyone wnats to contact him - ask on the forum.

[Griggser in reply to PMRpro]

Thanks. I took an extra 5mg last night and think it’s already made a difference.

[DorsetLady PMRGCAuk volunteer in reply to Griggser]

Good…

[DorsetLady PMRGCAuk volunteer]

Hi, hitting the wall isn’t good and they seem to get harder each time..

Agree with PMRpro- and link to flare procedure if you’re not sure -

healthunlocked.com/pmrgcauk...

Hope you can get things resolved …and probably a good move on the statins..

[Griggser in reply to DorsetLady]

Thanks DorsetLady. I was going to search for the link to the flare procedure.

[DorsetLady PMRGCAuk volunteer in reply to Griggser]

Thought it probably easier for me to do it… as it’s one of mine 😳

Hope you soon feel better.

[Grammy80]

You've gotten great advice, Giggser. I just want to say I do hope you pursue the rheumy...you never know; nothing to lose.💞

[Griggser in reply to Grammy80]

I did sort of throw my toys out of the pram!

[Myfoe]

I feel your pain and frustration I hit the wall once I go below 10mg even with 20mg of methotrexate but rheumy just started me on Kevzara waiting to see how it goes I have high hopes! Lack of a good nights rest is invaluable to anyone with PMR according to my sleep Dr a min of 8hrs is necessary but 9 would be ideal I don’t know about you but I cannot remember the last time I slept 8hrs even 6hrs!! I would pursue rheumy appointment I get frustrated with it all at times but decided I cannot get better without some help hang in there

[PMR_sufferer1]

Here is an idea. Take 5 mg in the morning and 4 mg around 9pm with a little food and a drink on each occasion. I know it's not the norm to do this but it's worth a try. It just keeps pred at a even level and helps especially in the night and early morning.I have always taken split daily doses and it worked for me.

Just try it your still getting 9mg per day and if it works taper the higher dose like 5 mg morning down to 4 mg.

Daily total then down to 8.