Has anyone experienced these symptoms ? - PMRGCAuk

PMRGCAuk

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Has anyone experienced these symptoms ?

moorfield profile image
11 Replies

Alongside the usual symptoms ( muscle /joint pains /fatigue) of ongoing ( 12 months) PMR - has anyone experienced the following symptoms? .

1 -Throbbing pulsatile tinnitus and high pitch ringing -( worse at night when trying to sleep)

2- Twitching and random rippling of muscles esp in legs - day and night

3 Vitiligo

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moorfield profile image
moorfield
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11 Replies

Hi moorfield, I have had periodic muscle rippling for years but due to other issues. It could be magnesium if it's your leg muscles. A lot of people take a supplement. The pulsatile tinnitus I have occasional if I lay in a quiet room, but I don't have long term ringing I have PMR. But you might want to check this research out. The ears can be effected in GCA so please read this and see what you think.

healthunlocked.com/pmrgcauk....

moorfield profile image
moorfield in reply to

Hello, thank-you for reply

I will try taking Magnesium supplements and will also read the info on GCA . I am a bit suspicious that some of my symptoms may have a GCA element.

At my last consultation my Rheumatologist has suggested we add in Leflunomide as I am struggling to taper down on prednisolone.. but that's another conversation.

Thank-you

in reply tomoorfield

No problem. There will be people around tomorrow who know the research better than I do and may be able to help further. 🌻

moorfield profile image
moorfield in reply to

That's great . Nice to talk. :)

in reply tomoorfield

By the way...did you mean vertigo rather than vitiligo?? Both can exist as part of pred as dizziness but also as changes to skin colour as well as thinning of the skin.

SheffieldJane profile image
SheffieldJane

The first one definitely. Thankfully it went almost completely once I got down below 5 mgs.

The second one not really. I do get restless legs though.

The third one Vitiligo not associated with this condition although I am pretty cautious in the sun. My sun worshipping daughters have a few little patches.

PMR 4 years.

Daffodilia profile image
Daffodilia

I have tinnitus - May be have hearing test once crisis over?

PMRpro profile image
PMRproAmbassador

Tinnitus and vertigo can be part of GCA.

Vitiligo isn't part of PMR/GCA but can be an autoimmune disorder in its own right.

What do you think might be GCA-like and what dose are you at?

jaycee444 profile image
jaycee444

The calf muscle twitching (fasiculations) I have had in the past and it was due to medication I was taking. Have had it occasions since Ive had PMR but not as bad. Have just googled and apparently there is a connection reported between Perednisolone and fasiculations.

Captainjonny profile image
Captainjonny

I had - and occasionally still have - the leg "rippling" .... I referred to is as "gurgling". As mentioned by others, I took a magnesium supplement though whether this the solution I don't really know. I also had leg cramping and this does return though I manage to control it fairly quickly now. The gurgling has subsided ... at least for now! All the best with your issues.

anutycrixp profile image
anutycrixp

Yes to tinnitus and muscle twitching but not vitiligo.2 out of 3 !I also seemed to generally "age" overnight..I will never know if this is disease related or would have happened anyway.Yes I do get vertigo as well.I absolutely try to ignore it all as I am sick and tired of it all.Just want to get on with whatever I can do!Oh ,can't ignore vertigo as sometimes fall over,have to be a bit careful!

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