Just saying hello

[EeneeBee]

Hi. I’ve just joined, hoping for a bit of support whilst I struggle to come off the steroids and methotrexate. I’ve been diagnosed 16 months and down to 6mg prednisolone and 15 mg methotrexate a week. I do wonder if I’ll ever be as fit as I was (now 66) walking every day, tennis 2x week etc etc. Now I can barely do 10,000 steps and wouldn’t be up to much the day after if I did! Does anyone know of anyone who’s come out the other side and resumed life as it was? Is there light at the end of the tunnel?

Thanks for reading

[SnazzyD]

Hello and welcome! What were you diagnosed with, PMR, GCA or both? What dose did you start with? How are your symptoms? It helps to know.

[EeneeBee in reply to SnazzyD]

Hi I started on 15 mg but struggled to get below 10 so that’s when they put me on Methotrexate.

Pain in back of legs, upper arm and general fatigue are my symptoms. Just PMR thankfully.

I’m a girl!

[MrsNails in reply to EeneeBee]

Thanks for that, so you’ve done pretty well to get to 6mg in such a short time, l’m pretty resistant to getting lower for one reason or another so can’t help or advise if/when you’ll ever be as fit as you were but there always hope.

See SkinnyJonnys Story, l’ll add the link to a recent Post.....

healthunlocked.com/pmrgcauk...

If you look at this link, you can then look at Jonny’s Profile, he is the Exception rather than the Rule but within his Profile/Posts you’ll see a lot of Positives.

[DorsetLady PMRGCAuk volunteer]

Yes there is light at the end of the tunnel - but at the moment it's a bit dim and distant! But hang in there.

As SnazzyD says a bit more info would be nice.

[MrsNails]

Hi EeneeBee

Welcome to Our Happy Band 🌺 l’m a Long Time Prednisolone & Methotrexate PMR’er.

Can l ask if your Male or Female as you’ve done pretty well to reduced to 6mg in 16months?

Once Again Welcome

MrsN

The Male/Female Question - Men tend to have a shorter lasting PMR

[PMRpro Ambassador]

I know quite a few - but very few of them stick around on these forums, they are back to living life as before. One lady in her later 80s had PMR twice but is now back to running her house and large garden herself though she has adjusted things a bit to make it more friendly to her age! Another in her 70s is back to her "lots of holidays" self (no children) - she did give up the horses though but as much because the horses were rather elderly but mucking out was getting a bit much. Another in her 70s is doing the gardening in the shared garden for her flats, cooks for her neighbours and sews sparkly things to go with her name. One friend who still has PMR, got off pred but it came back a few months later, started sailing dinghies last year - she is also over 70.

[EeneeBee in reply to PMRpro]

Thank you, that’s encouraging ☺️

[1Unknown12]

Hi.

I asked a similar question the other week. The response was very encouraging. Different people manage different exercises. From long walks, swimming, cycling to just being active again. Lots of the replies came from people in their 60 & 70 s . Preserve and do what you can, Day by Day. Take the good days and cherish them. Remember the deadly fatigue cannot be beaten. Work with it.

At 57 I struggle, but I am only eleven months in on the condition.

Take care.