GCA- fuzzy, prickly feeling in my scalp

[Janeval]

I have tapered down to 20mg of Pred (this is the second time around- had to go back up to 30mg & have now gone much slower down to this level). I've been ok for the last 2 weeks but the past few days I have been getting an increasingly fuzzy, prickly feeling in my scalp on the side which has been my problem side- not painful apart from the odd random pain - (nothing of any significance- I've not needed painkillers atall) & am wondering why? I was going to reduce again this week by 1mg but not sure now as I don't feel that things are 'quite right'! Any ideas or suggestions?

[DorsetLady PMRGCAuk volunteer]

First thought, no reduction..

Second thoughts, 2 weeks or so after a reduction is just about the time for a reaction, if it’s not quite enough [i.e. a flare]. So to that end I might be inclined to try 22.5mg for a few days to see if that makes a difference.

You say you have reduced more slowly this time around, but how exactly?

[Janeval in reply to DorsetLady]

I reduced from 30 to 27.5 to 25 to 22.5 then to 20mg. This was after being told by my Rheumy to reduce by 5mg at a time- which is what I did first time around & I ended up going back to 30! So, I'll go up by 2.5 tomorrow for a few days & see what happens.

Thanks for the advice - I really don't want to have to go right back up again.

[DorsetLady PMRGCAuk volunteer in reply to Janeval]

Hopefully you shouldn’t need to, if you catch it quickly enough. Usual advice for a flare is up by 5mg above dose you last felt okay - so in your case that would be 27.5mg - stay there 7-10 days [14 at most] and then drop back down again to just above where issue started.

Hope it works.

[Janeval in reply to DorsetLady]

I have just had the last 2 days on 22.5mg but am going to increase again tomorrow as you suggested as the fuzziness/tingling is still there- not as bad but something's going on & I am extremely tired. I see my Rheumy in 2 weeks time & I know he is not going to be happy that I've increased without talking to him or the Specialist nurses. Problem is they just say as my blood markers are normal then it's not the GCA & I should not 'self medicate'! When this happened last time (at the same dose) they were adamant that the fuzziness etc was not the GCA, so they're obviously just going by what my markers are & nothing else.I also have a lot of stress/worry (ongoing family problem) which comes & goes each week according to what's happening. I know that this is not helping me atall but it's how it is unfortunately.

[DorsetLady PMRGCAuk volunteer in reply to Janeval]

Hope the extra works -and stress obviously isn’t helping but sometimes we can’t avoid it. Just wish don’t doctors would realise that…

[PMRpro Ambassador]

If you "don't feel quite right" - don't reduce! It doesn't matter WHY you don't feel right, wait a week or two until you see which way it goes,

[Janeval in reply to PMRpro]

That's what I thought- not quite right, but what do I do?! Unfortunately my Rheumy is expecting me to be down to 15 in 2 weeks time & is keen to put me on Methotrexate which I have decided I am not going to go on. After being on this forum for a few months now I have learnt a lot about the medical advice we are given by our Consultants & the reality of what we feel like, but they just seem to go by the book & not reality!

[PMRpro Ambassador in reply to Janeval]

Some of them are not even by the book!

MTX is worth a trial - if you feel too unwell on it and stop they can't force you, I tried it for a month before stopping, primarily to travel to the Far East for a meeting, and by the time I get back I realised just HOW awful I had felt, it was the deathly fatigue usually reserved for lazy adrenals! But it DOES work very well for a small cohort of patients but you have to try to know.

[Missus835 in reply to Janeval]

I'm having similar issues with a GCA thing. Things don't feel quite right. I still have referred pain in my right forehead, some scalpy issues and shooting pain where my biopsy scar is located. I'm at 32 mg. at this time because I seem to have had a flare of "something" (including diverticular)and CRP went from 3 to 42 week before last. I put myself up to 40 mg. because there was no reaching my rheumy. Now trying 32 mg. for a week and see how that goes. BUT I have an appointment with her on May 23 and I know the taper will not meet her recommendations (5 mg. weekly). To this I say, "too bad, so sad, I tried to reach regarding this" and I hope she explores the GCA aspects again as in our phone consult she said we would "monitor it". Just getting the appointment was an epic stressor, but my former Neurologist must have gotten to her on my behalf. All the best with yours.

[PMRpro Ambassador in reply to Missus835]

If you have pains over the scar that is almost certainly nerves coming back to life and although uncomfortable nothing to worry about. And remember, a single raised marker is not a sign to have an kneejerk raise of the pred dose - they can be raised for a whole range of other things. Check it a week later and see if it is still raised,

[Missus835 in reply to PMRpro]

Thank you. I went for bloodwork Thursday gone by. A week later..So we shall see on Tuesday next. Good to know about the pains around the scar.

[Grammy80]

How frequently do you reduce? or did I miss it. You've gotten the best advice. As an active GCAer I would hold tight until my body felt like it was on an even keel. I finally got to single digits after three years of pred and Actemra and I reduce .5mg every three to four weeks. I've been planning a trip to see my granddaughter graduate from high school so I'm holding at three until I return. For me slow is safe....no sorry. I want to grow up to be just like Dorset Lady~!!! 💞

[potterylady in reply to Grammy80]

Amen Grammy! So do I !

[DorsetLady PMRGCAuk volunteer in reply to Grammy80]

Who said I was grown up 😳…

[PMRpro Ambassador in reply to DorsetLady]

You don't know Grammy80 - these things are all relative ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

..true! 🤣😂

[Grammy80 in reply to PMRpro]

True...all things are relative! I'm fabulous compared to many! ❤️

[Grammy80 in reply to DorsetLady]

I always said I hope I never grow up...... But I sure do admire the way you have carried on.❤️

[DorsetLady PMRGCAuk volunteer in reply to Grammy80]

Not the only one - you only have to look in mirror..,,😊

[Grammy80 in reply to DorsetLady]

💞💞

[Janeval in reply to Grammy80]

I've cut right down on reducing- my Rheumy told me to reduce by 5mg every 2 weeks but I am doing 2.5mg. As I was down to 20 mg I was going to go to reducing 2.5mg every month but I'm now going back up again because of this flare. This is the 3rd time I've got down to 20mg so it's very frustrating. However, as far as I'm concerned I am going to go to DL's slow approach but I'm sure when I see my Rheumy at the hospital in 2 weeks that he will not agree with it. He's very keen for me to reduce quickly & very keen to put me on Methotrexate.

[Grammy80]

Hi..I'm so glad you are going to DL's slow taper...so glad. Has your Doctor ever mentioned Actemra weekly injections? My rheumatologist in the States is NOT keen on metho for GCA. I know it is harder to get approval in the UK, but it may be worth asking about.

We have to understand the disease is the boss and works on its own timetable...not mine, not yours, and not your doctors. I know pred has side effects just as you do.....but not taking it when it is needed has a lifetime side effect. You are right to slow down!!.....💞

[Janeval]

No, he's not mentioned Actmera yet, but I'll see what he says in a few weeks time & from what I've read about it it seems to be much better than the Metho.. I'm just loathe to start taking anything else at the moment & I'm sure that the stress & worry I have at the moment (family matter)is a big factor in all of this, but I can't avoid it.

[PMRpro Ambassador in reply to Janeval]

Pretty unlikely you would get Actemra in the UK at this stage

[Janeval in reply to PMRpro]

Yes, from what I've read that does seem to be the case. I doubt the NHS would fund it!

[PMRpro Ambassador in reply to Janeval]

Not until you have relapsed a time or two

[Janeval]

Well I've phoned the Rheumy 'Specialist nurses' today - who are supposed to help with any problems which may arise & for the second time I've been told to go & have my bloods taken which will be in 2 days time ( earliest appointment). So that will be 5 days since my flare with no advice from them apart from- do not increase the Pred ( they say if my blood markers are normal then it's not a flare). They've told me that I must not increase as they want to get the Pred dose down. So, as so many of you have said- from so many doctors etc. they go entirely by the blood markers & not the symptoms we're are experiencing. I didn't dare tell her I had already increased my doseage- I see my Rheumy in 2 weeks time but I do feel in going round in circles again.