PMR /GCA ? On going headache , droopy eyes

[Gaz227]

I posted a couple of weeks back about a temporal headache I was having on my base dose of 5mg pred , After a lot of is it or isn’t it GCA as I currently only had PMR , the Rhuemy increased my pred to 55mg for a few days didn’t really help my headache , I had a CT scan which was normal , started a fastish reduction on the pred as the Rhuemy is convinced due to bloods etc that thecheadache was not caused from GCA. I’m down to 15 mg and dropping 5 a week to get back to my 5mg ASAP . My headache has reduced but is still there picking away every now and then , I get some rest but from it when I preoccupy my mind but it’s difficult. I have noticed a considerable increase in the droopyness of my up eyelids especially in the morning plus I notice an aversion to light I find wearing my sunglasses gives me some relief. I’m not taking any pain killers for the headache , I had an eye test which was fine in terms of vision glycoma etc , anyone got any advise , I do feel a little better now I have got the pred down again and all the fatigue side effects have gone away , the Rhuemy has told me to see my GP as the symptoms i reported to him where nothing to do with his department . Would a opthmoligist (think that’s an eye specialist) be the thing to ask my GP for . Can’t get another appointment with him for a week thought you folks might be able to advise .

[PMRpro Ambassador]

Does anything here sound familiar - although usually MG gets worse through the day as the muscles tire?

nhs.uk/conditions/myastheni...

mayoclinic.org/diseases-con...

There was someone on one of the forums some time ago who developed drooping eyelids and it turned out to be myasthenia gravis. As it is an autoimmune disorder I would have though a rheumaotlogist would have been the right person to ask - but I never cease to be suprised at what rheumies appear NOT to want to think about.

I'm also surprised your rheumy made you reduce so slowly after only being on pred for a few days - up to a week it would be OK to drop very quickly.

[Gaz227 in reply to PMRpro]

Very interesting I will bring this condition up with my Rhuemy when I see him in 2 weeks . The Rhurmy’s Assistant phoned me and said my symptoms are not at all to do with Rheumatology you just have to take there word for it sometimes . I hope my GP who I see next week takes it a bit more seriously , I had an accident in my car yesterday first one in over 40 years I ran into the back of another car wondering if this condition is responsible for my poor judgement as it was completely my fault the other car had stopped . Could do without it at the moment . Thanks for the help 👍

[PMRpro Ambassador in reply to Gaz227]

Dunno - someone ran into the back of my car and as far as I know he didn't have PMR! Not judging by how he shot out of his car at least - I did!!

[Gaz227 in reply to PMRpro]

Lol , the chap I ran into was a vicar I felt aweful as it was completely my fault , just a complete lapse in consentration. Lesson learnt thankfully no serious injuries in either car .

[jinasc]

Try this (although I agree with PMRpro).

However, remember I did not have PMR (GCA only)

Every hair on your body is attached by a little muscle. Now PMR impairs the oxygen supply to muscles.

So, my hairdresser suggested this............it comes from Shiastu, they offer a Shiatsu hair wash in their saloon and I always had it as it is so relaxing.

Spread your fingers through your hair and tug gently, do this all over your head. Do this a couple of times and see what happens.

Other people, not all of them have PMR, I have passed this onto have found it relaxes them and they also use it before reaching for the headache tablets.

Worth a go?

[Gaz227 in reply to jinasc]

Thenkscwill try it 👍

[Nuff1]

A number of opticians can carry out eye care investigations without GP referral

Try

nhs.uk/service-search/optic...

for England or check your local optician. I've booked OH into my optician for a full check

[Telian]

Hi Gaz

Hope your GP is more help than Rheumy have been and you get an appropriate referral.

Sorry about the car - you must be so preoccupied. Best wishes and let us know how you get on.

[Gaz227 in reply to Telian]

Thank you

[Monkeymate]

Hmm I’m wondering! I had suffered your symptoms an a lot of pain . My rheumatologist did mri an I’m waiting to see neurologist in March as they have fond other things , one of which is Sjögren’s syndrome, the other being siAladenitis ,both auto immune diseases. Plus fusiformappearances raising the possibility of orbitopathy , ialrady have gca small vessel disease with white matter/on brain an possitive lupas aps ,all in my head , so I guess I’m trying to say you alone know your pain an if your not happy PUSH till they here you , I hear your angst so I do wish you well let us know ye ? 🐒

[Gaz227]

I’m still reducing after this bout of headaches, down to 9.5mg , Saw the Rhuemy yesterday and he said my symptoms are nothing to do with PMR or GCA and should get off the pred as quickly as I can 👀, or at least get to my base of 5mg before I see him next ( 6 months ) . My GP referred me to a Neuroloigist but the waiting time was months not weeks , so I have arranged for a private consultation at a BMI hospital in Birmingham in a weeks time . The strange thing about this reduction is i haven’t Had any muscular or joint pain like I normally get on reductions, just extreme fatigue and feel really chesty. Also my mood is poor no motivation and very Anxious , I am sleeping althoughits broken sleep about 9 hours a night . Does that sound strange ? . I am managing to do a little yoga every day, I am doing some meditation also sticking with the Wim Hof breathing method and a cold shower every morning . I’ll try anything if the traditional approach fails , oh and these methods are keeping the headache in check 👍

But my eyes are still droopy 😩

[PMRpro Ambassador in reply to Gaz227]

Getting to 5mg in 6 months sounds more realistic than "off"!!

[Gaz227]

I dropped from 10 to 9.5 mg pred a few days ago , I was fine the first day of the drop . 3 days on and getting more fatigued , headache niggling in again , all the symptoms I had when all this started seem to be showing up again. Not sure weather to go back to 10mg which seemed to hold everything at bay , at least till I see the Neurologist in a week time , or stick it out and see if it is merely withdrawal symptoms, anyone got thoughts folk . ?

[PMRpro Ambassador in reply to Gaz227]

If it is getting worse it isn't likely to be withdrawal, that tends to improve over time. Go back to 10mg, wait a bit and try again - sometimes it takes a few goes. And maybe try one of the slow approaches?

healthunlocked.com/pmrgcauk...

is just one

[Gaz227 in reply to PMRpro]

I will increase back to 10mg in the morning , I am still inclined to agree with the Rhuemy on this one that it is not PMR or GCA. I have been doing some research into the condition you mentioned Myhenious Gravis excuse spelling . The Rhuemy said although it’s not his department , no as it would be effecting speech and muscle strength , but there was a lesser version just referred to as Occuler MG . My eye balls are so sore , tired and top lids droopy, and I get really fatigued later in the day. I hate trying to diagnose myself but it seems to be starting me in the face. I just hope the Neurologist has got some answers. There is a blood test for MG but it’s another one of those that the results aren’t always black or white . Very frustrating .

[PMRpro Ambassador in reply to Gaz227]

Everything starts somewhere - and yes, you are right, there is an occular version. Good lucj with the neuro!