Rheumy Visit

[PamelAnneCT]

Rheumy is empathetic, and supportive. He’s not convinced, or more accurately doesn’t want to believe, that it‘s Temporal Arteritis or Polymyalgia Rheumatica because I’m only 53. BUT I respond to treatment with steroids so that’s what we’re going with. Plus the exhaustive bloodwork doesn’t really show anything else to pursue. I am meeting my new primary care on Friday and am supposed to ask her about a few things:

1.What is causing the (very small amount of) blood in my urine since my diagnosis in June?

2.Should I see an oncologist to be absolutely sure there’s no cancer hiding because of the steroids?

So tomorrow I start Methotrexate as a steroid sparing treatment. We are both concerned about the high dose of pred I seem to need to maintain any type of functionality. Really hoping this works, and I get some other answers on Friday.

I’m a get up and goer, but I’m letting myself just vegetate until I have more answers. Have to give up on being Wonder Woman sometime, and I guess it’s time.

Anyone have any information on recovering from being in the hospital? I’ve heard that there’s a recuperation period after being hospitalized, not to mention the pred dose has me weak and ditzy.

Thank you all again for your constant support!

[PMRpro Ambassador]

Some 30-odd years ago (or it may have been 40) a study was done in Scotland using Marines as subjects. They did a fitness assessment on Friday and then spent the weekend in a hospital ward. No treatment, not ill, just full bed-rest. Then they were assessed until they were back at the same level of fitness as on that Friday. It took 6 weeks. When you are confined to bed there is an immediate and considerable loss of muscle bulk and tone which takes some time to regain - particularly when you weren't fantastically fit to start with and unable to exercise afterwards. I should know the figures but I don't off the top of my head. And as you say, there is the pred to bear in mind.

WHY do they have this problem about PMR/GCA in your 50s when the British Society of Rheumatologists guidelines (I assume also the international versions since they are drawn up by the same people) say quite clearly over 50 and there is documented evidence that a 37 year old male who died of a stroke had undiagnosed GCA? Unusual maybe, impossible, by no means.

And yes - time for Wonder Woman to devote her efforts to herself!

[babssara in reply to PMRpro]

Great reply PMRpro. I only have to come down, or go upstairs for me to be out of breath, need to sit down and my leg muscles feel as though I have run a marathon. I wondered why. Now I know. Thanks. Babs x

[Nap1]

Newer drug out TCZ in trials for this disease. My Rheumy says methotrexate not good support drug. TCZ available but $3,000 a month. This is for GCA but PRM is more or less the same so I am reading.

[Sallyaches]

Hi, I also had my first attack of PMR in my early fifties but this was explained away as an inflammatory event. Then had more attacks none of which I totally recovered from until at 56 things got very bad with the whole set of symptoms including night sweats and anaemia.

I don't know where you are living but I am in England.

I had a PET scan to rule out any inflammation of the aorta or malignancy, I think my blood results were quite bad. It may be worth asking about this.

I am now on prednisilone and methiotrexate as a steroid sparer, I can't say I am doing very well in terms of exercise tolerance but do feel better most days.

My rheumatologist says PMR can be more resistant to treat in younger patients and more severe. Basically your life may be a lot different over the next few months.

Good luck, and it is all quite scary for all of us at first.