My PMR Story

[salparadise127]

She still needs me and feeds me now that I'm 64. 19 months ago after a knee injury, an infected tooth and a pneumonia shot my stiff shoulders got frozen and my Orthopedist manipulated them under anestesia with cortizone and I felt better for weeks, then the stiffness came back. He referred me to a Rheumatologist when It became systematic; legs, hips, wrists, neck all painful. I was immediately diagnosed and prednisone did the trick pronto. From 20 to 15 to 10 mgs in 4 months I had much less stiffness; now I can function and sleep. CRP infection levels rose after another 6 months tapering down to 6mg. Stiffness increased, especially in hands, when I got down to 4 mgs along with Methotrexate 6mgs a week. Went back to 5 of pred and got less fatigued, so after a year I found my minimum level to carry on with less activity and more naps. Don't know if taking methotrexate, so far 4 months, helps cause I don't know how I would feel without it. Can't say if its helping tapering off the preds .Minimal side effects, no depression thank god I'm my usual charming self. So, I'm hoping the condition dissipates and as I feel better I'll lower my doses as I see fit. This on line forum is helping me get through it, so I thought I'd tell my story.

[HeronNS]

Good to hear your story. Sounds like you've had a very supportive rheumatologist, that helps a lot. I do wonder, however, now that you're down to 5 mg, whether the mtx is necessary any more? I think I read somewhere recently, on this forum or another, that once your pred dose is so low mtx doesn't contribute anything. But I can understand you wouldn't want to rock the boat, so to speak, if it may have been helping so far.

[Soraya_PMR]

Welcome!

Love your photo.

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome,

Agree with HeronNS not sure that MTX is doing a lot of good now that you are down to 5mg. It just a matter if going slowly from now on to assist the adrenal glands etc.

“I’m hoping the condition will dissipate” - yes it will, but in its own time. As we always remind people just because you're on Pred and feel better it doesn't mean the PMR is gone. All the Pred is doing is controlling the inflammation caused by the underlying PMR- and that's a serious illness. Pred is only like a plaster over a broken bone or a sticking plaster on a cut. It stops the original injury from getting any worse, but it doesn't actually mend it. Time mends, along with a bit, or lot of TLC.

Look at the attached re reducing and adrenal glands

healthunlocked.com/pmrgcauk...

[SheffieldJane]

Great picture! Which one's you salparadise127?

You both look pretty fit. I enjoyed reading your story, there were many points of recognition. A number of people have spoken about a frozen shoulder in the run up to PMR, or some sort of shoulder trouble. I wonder if it's significant? I broke my shoulder a couple of years before diagnosis and always thought that I never felt right since. Certainly the infection and illness you suffered seems to fit a pattern. It's like the whole show collapses.

I am glad that you seem to be doing so well now and that you seem to really comprehend what is happening to you - it's half the battle.

I am not really clear what value Methotrexate adds in terms of PMR. I've been diagnosed for about the same time as you and am struggling at 6 mgs, to the point of thinking I'd better increase. I think I'll be offered MXT. next time I see my Rheumatologist.

[salparadise127 in reply to SheffieldJane]

The one on the right is me and in the background is Jack Kerouac who I played Off Broadway in NYC and whose novel On The Road has Sal Paradise getting his kicks with Neil Cassady whose son John is on the left of me at a Beat Generation shindig. Best of luck with your struggle, Janie.

[SheffieldJane in reply to salparadise127]

How cool is that?

My son will be particularly impressed, he loves that period and that book!

Go well!

[MaryA_]

Thank you!

[Klah]

Love the duo-photo! Sounds like you had a helluva start of the PMR, but have come out the other side pretty well!

Keep us posted!

[PMRpro Ambassador]

Thankyou!

If methotrexate doesn't have any adverse effects I see no reason not to try it - but I wouldn't accept any detrimental effects. However, at 5mg there is felt to be not much point in mtx so introducing it then is a bit pointless. The question is: am I now at 5mg BECAUSE of the mtx.

[Jackoh]

Thanks for taking the time to tell us your story. Great picture! Can understand why you feel you wouldn't want to rock the boat. All the very best with your continued journey!