Tingling Scalp & Headache

[Mks9558]

On 60 mg of pred since september 21. diagnosed with PMR/GCA - 9/17- initial dose was 20 mg for 5 days - have seen rhuemy every two weeks - return 10/30- will headache, tingling scalp and tinnitus ever leave? waiting for results of MRI/MRA and carotid ultrasound. echo and dexa scheduled this week- ESR back to 18 from 95 and C-protein .5 from 3.1. - PMR symptoms gone. it is just the head that is killing me...

[fmkkm]

Hey,

First thing, don’t panic. Believe me I know that feeling! I was put on 40mg then kicked to the curb. Here I am slowly getting better. The “powers that be “ will be along when the UK wakes up and set you to rights “😎

[Monkeymate]

Morning ,it’s 3 55 am please try an stay calm or it’ll make your b p go up an cause you more pain , forward motion is right the “aunties will be up soon an I know will help you , I’m no expert but you said your initial dose was 20 preds ? Seems to of been very low .i started at 60 an had problems at 40so returned to 60 until things settled , so I hope you get sorted an soon feel a little better , wishing you well

[Mks9558 in reply to Monkeymate]

I am calm - and on west coast of USA where it is 9:30 pm. Was on 5 days at 20 mg by gp then put on 60 mg 4 weeks ago by Rheumatol. Really just wondering about the tingly scalp tinnitus and headache and as I said go back in two weeks and have been to dr every two weeks. Just still new to this.

[DorsetLady PMRGCAuk volunteer in reply to Mks9558]

Hi,

Really the 60mg should have taken control of the tingly scalp and headaches if you’ve been on it for 4 weeks. It is working as can be seen by the reduction in ESR and CRP readings, but maybe it’s not quite enough to clear out all the built up inflammation, or maybe you just need to stay at 60mg for a bit longer.

When I was initially diagnosed I was put on 80mg (already lost sight in right eye), but after 2 weeks when docs sure sight was ok in left eye was reduced to 60mg - stayed there for 8 weeks.

I did still have headaches for the first few weeks, but I was never sure whether that was from the GCA or from my brain trying to adjust to mono-sightedness.

Can’t help with the tinnitus sorry, never had a problem with it.

This might help with the overall PMR/GCA journey - plus if you tap on my avatar you will find my other posts relating to GCA if they help -

healthunlocked.com/pmrgcauk...

Auntie and t-shirt holder😉

[Mks9558 in reply to DorsetLady]

Thank you!

[jinasc in reply to Mks9558]

This might just help you.

Spread your fingers through your hair and gently tug all over.

Every hair on your body has a little muscle at then root and sometimes it needs help in relaxing. So gently tug all over.

It is a bit like Shiatsu and when I started with GCA, my hairdresser, who always offered a Shiatsu hair wash, told me to try this out. It helped and although I have been in remission for coming up to 8th year.

One thing, the NHS Research Dept in the North East have been running a programme and questions on 'Your Ears' in relation to GCA and/or PMR. Many people on this site, who live in the UK (as it was UK residents only) have taken part.

Whilst the final results of this initial research are not ready yet, it is looking as though GCA does involve our ears. Which does explain to me, why I lost 25% of hearing in one ear (left side) around the time I was diagnosed with GCA.

10 years later when a Consultant Rheumatologist had three people whom were diagnosed with GCA, each on of them had said they had a problem with their hearing . (Highly unusual three people within a few weeks). That Consultant was a guest speaker at a support group meeting and he asked the question.

I nearly fell off my chair and so did two others. The third person, was one of the people who had seen that Consultant and had been diagnosed with GCA about a month previously and had had hearing problems. Serendipity does work sometimes.

It is a start.

[CT-5012]

Hi and welcome as forwardmotion says the “aunties “ will be here as soon as the rest of Europe wakes up. Some of us sleep better than others. You are in the right place for help and information, some sympathy and understanding and the occasional laugh along the bumpy road to recovery. I’m two and a half years with PMR/GCA things will get better, there is light at the end of the tunnel and it’s not dark all the way. All good wishes. Sleep well 😴

[Mks9558]

Thank you, getting to bed now- have decided to take medical leave to focus on getting well as I am just recently turned 60 and still need to work when I get through this . I think I just really need my expectations set. Thank you again!

[CT-5012]

A very good idea to have some time off work and also to talk to your occupational health people before you start work again. PMR/GCA are not life threatening both are life changing, you will need to pace your activities once the pred euphoria has worn off. Sitting in the garden watching it grow is now my favourite hobby, 😁 if you have any other questions just ask, no such thing as a silly question, you will most probably find that someone else has a similar experience and is happy to share “tips and wrinkles” support at its best from those who have got the t-shirt. Best wishes.

[SheffieldJane]

It is perhaps early days for the head pain to go completely. Certainly members here have had to go even higher than 60 to get on top of GCA entirely. The tinnitus may well be Pred related. I only have PMR but I get very mild intermittent tinnitus now and then. I am hoping that it will disappear with all the rest of Pred’s horrible friends.