Trouble reducing Pred.

[Marcy47]

I have been reducing slowly, over 4 weeks, from 9.5mg to 9mg, but the pain in my left thigh came back with a vengeance.

Last night it was so bad I couldn't lay still in bed, so I got up and took another 1mg of Pred., then managed to get to sleep.

This morning the pain has almost gone, just left with a weakness in the thigh muscle.

This is the 2nd time I have had to go back up to 10mg, so I think that must be my level for the moment. I last saw the Rheumy, (for the 1st time) back in October. She was not convinced that I had PMR just because the pain was mostly in one leg. I was supposed to get a follow -up appt in Feb. Nothing happened so I phoned them and was told nothing doing till May, they would be in touch, I'm still waiting!!

Not sure whether to push for an appt or just carry on at 10mg for another month and then try reducing again. I am pacing myself to cope with this illness, not sure I want the Rhuemy adding more medication for me to try.

Marcia

[DorsetLady PMRGCAuk volunteer]

Hi Marcia,

If your Rheumy's not sure about PMR then who diagnosed it - GP? - and presumably had good reason to do so. So you must have had fairly classic symptoms. As Rheumy says, PMR is usually bilateral, so has she suggested anything else? Maybe MPS, sure PMRpro will be along with her advice on that very shortly.

Think you're very wise to stick with 10mg at the moment, hopefully you'll get some more advice from others on here that may have suffered same, and yes, keep pushing for Rheumy appointment.

You may find when you try reducing again it works, hope so. Sometimes, it's just not the "right" time - I found that a few times during my time with GCA. No point getting worked up about, just give it a week, or month, then try again. As we're always saying - not a race.

Take care.

[Marcy47 in reply to DorsetLady]

Thanks to DL and others who replied to my post. My leg has been a lot better today, even managed to vacuum the lounge. I will stick at 10mg for a month I think and then try again.

The 2nd Dr I went to recognised it as PMR and put me on Pred. with magical result. My appt with the Rheumy turned out to be with a locum who really wasn't interested, the letter she sent to my Dr was full of errors. I may get to see the resident Rheumy next time (with a bit of luck).

Enjoy the good weather while it lasts everyone. xx

[PMRpro Ambassador in reply to Marcy47]

Some people never learn

The position you adopt when vacuuming or sweeping is one of the worst for backs - it puts a lot of stress on it! And that isn't just my personal view - it was my orthopaedic doctor in Germany who told me. The other thing bad for backs if you already have problems is riding an ordinary bicycle. I'm forbidden to cycle.

[Marcy47 in reply to PMRpro]

Good excuse to get hubby to do it, except he's got a bad back too. Have to get a cleaner in!!

[PMRpro Ambassador in reply to Marcy47]

I like your thinking...

[Lin-lou in reply to Marcy47]

Joking aside, when PMR raised its ugly head with me back in 2014 I had no choice but to get a cleaner for the vacuuming, etc. Best move ever! It's such a relief when things start needing to be done, knowing "someone else" will be along to take care of it! I feel like a lady of the manor sometimes! If you do take this step, I would recommend Age UK, maybe slightly dearer than some private cleaners but they are excellent.

[PMRpro Ambassador]

It is the sort of thing that used to happen to me because of myofascial pain syndrome - spasmed back muscles pinched the sciatic nerve and OUCH! I doubt you would get a physio appointment through your GP but getting a private appointment might shed some light on it if you could afford it.

Whatever - back to 9.5mg at least and give it a month or so and try again. Not sure I'd push for a rheumy appointment - depends how you feel about the rheumy and whether it is PMR or not. Is your GP sensible and helpful?

[BirmLiz]

Hi Marcimay,

No-one ever questioned my diagnosis of PMR but my flare up was in one ankle only. It was so painful I couldn't even stand the weight of the duvet on it and like you I had a restless night until I got up and took an increased dose of pred.

I must admit that I didn't get in touch with my Rheumatologist but stayed on the higher dose for a month and then reduced using the dead slow method and told them at my next appointment what I'd done. There seems to be no one system to look after patients who have PMR. My NHS appointments were every 6 months (I live in the West Midlands) almost to the day but then again I saw 4 Rheumatologists in 3 years so couldn't build up a working relationship that lasted.

I think if you feel OK with managing your medication on your own you can wait until they contact you with an appointment but if you want the support of medical folk, keep bugging them and of course, there's loads of very knowledgeable people on site (like DorsetLady and PMRpro) plus people like me who have their own experience to share.

Wishing you a flare free future, take care.