PMR

[Lroach]

Husband dx with pmr after 4 ambulance rides. Put on steroids helped right away. After a month, pain is in his groin, he then felt his left leg give out and he'd fall. Didn't know if it was his knee going out, his back, or weakness from pmr. Rheumatologist did extensive blood work but everything is negative/normal range.mof course it is, he's been on steroids for 6 months. So dr. Is like POOF it's gone. Been to the neurologist, orthopod, rheumatologist, meanwhile, my husbands health has declined. He's on a walker and using a knee brace to keep from hyper extending and falling. What do we do now? Who do I see? 15 mg prednisone a day going to 10 next week. Has only one kidney due to cancer last year

[paddyfields]

" Rheumatologist did extensive blood work but everything is negative/normal range.mof course it is,mof course it is, he's been on steroids for 6 months.mof course it is, he's been on steroids for 6 months."" Can't believe how often this scenario is played out!!!

Best wishes

[Celtic PMRGCAuk volunteer]

Hello Lroach, the symptoms you describe can very much be attributed to both the inflammation of PMR and the steroid treatment. However, having said that, groin pain was among the first of my symptoms with PMR - as long as investigations have ruled out anything untoward with his hip, then it is highly likely to be due to PMR/steroids. I spent almost a year undiagnosed and during that time the muscle weakness worsened to the extent that I was unable to put any weight on one leg without collapsing to the floor, so that to me is proof that it isn't only the steroids that cause muscle damage but also the inflammation, and if your hubby was suffering for some time before diagnosis then his muscles have probably already weakened even before succumbing to the side effects of steroids. I'm assuming your husband hasn't been on 15mg of steroids for 6 months? Perhaps he started on a higher dose of 20mgs? In any case, if he is contemplating going from 15mg straight down to 10mg that is too fast a drop - far better to try 12.5 in the first instance.

If your husband can find a good physiotherapist who understands PMR and is willing to do gentle massage and perhaps heat treatment, that may help to relieve his pain. However, it is important to avoid the manual techniques of physiotherapy at this stage of his treatment/symptoms.

As far as him having only one kidney is concerned, do let me reassure you that the steroid treatment should not affect his kidney function - in fact, some kidney problems are actually treated with steroids. I also have just one kidney and survived steroids starting at 40mgs for over 5 years.

Do hope that helps, and do give your husband our best wishes.

[Hidden]

"Rheumatologist did extensive blood work but everything is negative/normal range.mof course it is, he's been on steroids for 6 months. So dr. Is like POOF it's gone."

I agree with paddyfields, this is all too common. Rheumatologists are so confused themselves by not listening and not looking at the patient. Instead, they are looking at the numbers on the sheet of paper!!

[PMRpro Ambassador]

I can't think of another speciality to suggest! Only try another of neurologist and a physio.

There was some comment on another post somewhere about legs giving way, several people said it happens to them but nothing as bad as that.

On the other hand - is it REALLY PMR? Has the rheumy/neuro missed something?

[Lroach]

Thank you everyone. What a wonderful site! I have Ehlers/Danlos syndrome so I'm very used to finding people with the same illness and discussing treatments.

This is so helpful as I'm feeling over whelmed. I'm sure it's pmr. I've never seen such intense pain in his shoulders, neck, arms. He was virtually paralyzed. No one has tested him for Gca though. Should they? What other disorder would he have with these symptoms?

My big question now is wont bracing the knee so it does no longer hyperextendes , won't that weaken the muscle . It's a vicious circle. Brace so he can move without a walker then weaken it so he needs a walker. He's just 63.

[PMRpro Ambassador in reply to Lroach]

Ask for a physio appointment to get targeted exercises to maintain the muscle. And an assessment of the rest...

It occurs to me - you mention pain in his groin. Has he maybe got bursitis - trochanteric or iliopsoas? That made my leg feel very weak at times but I don't remember hyperextending.

[PMRandRA]

Trust us, it has not poof gone. my rheumy did the same to me!

Anyway, please don't let him drop 10 mg in one go. 1mg at a time to 10mg is still fast, but better than 10mg in one go.

I have been back to 15 3 times until I found this site.

Good luck