PMR and Parkinson's Disease: Background: I have... - PMRGCAuk

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PMR and Parkinson's Disease

JanetRosslyn profile image
17 Replies

Background: I have PMR diagnosed 2016 and GCA/extensive LVV diagnosed 2019. I have been on 5mg Prednisolone daily for the past year. I used to also take 25mg Methotrexate weekly but this was stopped in 2022 when I was hospitalised with Methotrexate-induced interstitial lung disease (now resolved).

Current situation: My GP suspects I now also have Parkinson’s Disease (PD). I saw the Neurologist on Friday. He is confident I have Parkinson’s tremor and has noted other PD symptoms but has said he cannot ‘officially’ diagnose PD unless I also show signs of either (a) slowness of movement or (b) rigidity. We agreed to monitor the situation and that I would see him again in six months. I guess that having a firm diagnosis will make no real difference to me, other than allowing me to accept the situation.

Query: Chatting with my husband last night, he queried whether the Prednisolone may be keeping the rigidity/stiffness of PD at bay? I’d never considered that, but now I’m overthinking it… if I reduce the Pred and get any stiffness how will I know if it’s PMR or Parkinson’s?

Any thoughts anyone?

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JanetRosslyn
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PMRpro profile image
PMRproAmbassador

Not so off the wall as you might think:

medicine.wustl.edu/news/dru...

ncbi.nlm.nih.gov/pmc/articl...

However - is it REALLY PD? This suggests that small vessel vasculitis could mimic PD symptoms:

pubmed.ncbi.nlm.nih.gov/788...

Does it matter? If your QOL suffers because of a reduction in dose - why reduce?

JanetRosslyn profile image
JanetRosslyn in reply toPMRpro

I replied, but the reply seems to have disappeared, so sorry if I'm repeating myself... Basically, thank you so much! Have had a quick look at the links and will read them again at a more leisurely pace x

Longtimer profile image
Longtimer in reply toPMRpro

Interesting reading......I have become worse lately, severe weakness, especially in my legs, balance issues, falling against walls! dizzy, severe fatigue, feel like persistent flu!........have a friend with MS convinced I possibly have it, but being tested for things is another matter! Last saw GP month ago after waiting 3 weeks!.. .she said lets wait for ACHT results, well they weren't too bad, but what now.......don't think Max is entirely sure that I have Fibro. Having xray on shoulder tomorrow, (severe pain) then next week ultrasound on it.....I know I'm a complicated mystery, but convinced something else is going on.....any suggestions where I go from here...... being housebound anywhere is ok!!.....

Merryfield profile image
Merryfield in reply toLongtimer

I hate to mention ALS but symptoms remind me of those of my ex-boyfriend.

Longtimer profile image
Longtimer in reply toMerryfield

Sorry to be ignorant but what does ALS stand for?

Longtimer profile image
Longtimer in reply toMerryfield

Just looked it up…. awful, have to say I don’t have twitching or speech slurring, thank goodness. Thank you

PMRpro profile image
PMRproAmbassador in reply toLongtimer

I don't think it is fibro - and there is definitely SOMETHING going on!

Longtimer profile image
Longtimer in reply toPMRpro

I would pay privately but to who?? Enjoy your break away, will be interesting what you think of the UK!

Bennijax profile image
Bennijax in reply toPMRpro

Very impressive research on your part, so interesting

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Found same article as PMRpro (first link) but she beat me to it…

JanetRosslyn profile image
JanetRosslyn in reply toDorsetLady

Thank you so much x

piglette profile image
piglette

That is interesting. Before I was diagnosed with PMR I had a tremor too. The GP said it was old age, I was in my early 60s. When I started the steroids it went away.

JanetRosslyn profile image
JanetRosslyn in reply topiglette

I'm told there are various types of tremor. Mine is a resting tremor on one side only, and can be very annoying, but if I put my arms out straight ahead I'm steady as a rock.

Bennijax profile image
Bennijax in reply topiglette

Old age in your 60s, the cheek!

piglette profile image
piglette in reply toBennijax

Exactly!!

piglette profile image
piglette

I noticed mine when I was using my mouse initially. My hand just shook. My GP did not check anything. I just mentioned it and he made his diagnosis immediately! It sounds like you are much more knowledgable than I am on tremors.

Pixix profile image
Pixix

My tremor started two years into PMR, guess I was on about 8mg. I was sent to an osteoarthritis specialist who noticed it in my hands almost before I did!! Its a bad hand & arm tremor on left side, & mild tremor on right side. It’s been diagnosed by phone as Essential Tremor. Then I had a brain scan, all clear. Waiting until next June to see a Neurologist. So I can only speak from my experience. My arms/hand do not twitch at rest on my lap. They only start when I’m active, eg carry a drink or plate of food…the jiggle starts almost immediately & I have about ten seconds to put it down before it all goes up the walls in a violent fling (again). I wake myself up smashing my nose with my fist, or bashing it against the bedside cabinet etc sometimes. This is fairly classic of ET, I think, there are videos on uTube of people drinking (trying to drink) soup!!!!! My doctor says it’s one of the most violent he’s seen! The specific question seems to be if there is tremor at rest, or just standing with arms hanging at side. Parkinson’s was ruled out in my case, but, as I say, it’s been 4 years & I haven’t seen anybody face to face. Looks like a brain MRI would show up anything ‘nasty’ perhaps?? Hope it’s not. S x

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