GCA/muzziness

[lennysmummy]

Now 7 months in. Can anyone please tell me if this heady feeling is just going to last through the whole of this process? It just feels like my head is too heavy. I don’t understand that if this steroid is supposed to be helping that after 7 months I’m still feeling this. Bloods are still all ok. Had a few tender places on scalp but just upped by another 1mg and seems to have stopped again. I get the tiredness but this feeling is the worst. Anyone else? 🙈

[SnazzyD]

What dose are you on? Did you have this before or after Pred? Any other symptoms?

Pred made me feel heavy headed and strange all the time until I got to about 10mg. Worse on higher doses.

[lennysmummy in reply to SnazzyD]

I’ve had this from the beginning. I’m now on 8 and half, been on them for 6 weeks. I thought it would get easier once I got to 10 but still the same. I’m not dropping again until I get no more twinges or scalp sensitivity for a while. Just cancelled our holiday in August as I know I just can’t cope with it. 😏

[PMRpro Ambassador in reply to lennysmummy]

To be that low after only 7 months is VERY fast. GCA has a nasty habit of flaring in the first 18 months so do be aware.

[lennysmummy in reply to PMRpro]

Yes I read this forum all the time. I told her it was too quick but because of side effects she is adamant. 🤷‍♀️

[PMRpro Ambassador in reply to lennysmummy]

The side effects of pred are peanuts compared with the potential side effects of unmanaged GCA ...

[DorsetLady PMRGCAuk volunteer]

What dose did you start on -can’t see in your previous posts only that you were on 20mg in January time…

I’m wondering -albeit bloods are okay-whether you have ever got your GCA under full control. You seem to have had a lot of issues -and have you had the opportunity to discuss with doctors?

[lennysmummy in reply to DorsetLady]

yes I started on 60mg before Xmas. My bloods have all been fine since end January, tested every 4 weeks. Had mri that was fine in May. They had to get me down to 20mg quickly as blood pressure was through the roof. The higher the dose the worse it was. I see the consultant every 12.weeks, she’s bought it forward from September to August 14th. I’ve had adverse reactions from day 1… I have no PMR that was tested in June. I’ve had chest X-ray 3 weeks ago and also ct with contrast on pelvis and abdomen. Not had a call so imagine both were ok. She wanted me to taper 1mg every 3 months but took advice from here and been doing half every 4 weeks since I got to 10mg. I’m not getting headaches but just the weighty feeling. I get stressed very easily so I know I can bring temple tenderness on quite easily. I’m having a gastroscope done 4/08 as the steroids have caused either my ulcer to come back or something else gastric. I’ve accepted I can’t do what I did before this so I’ve come to terms with riding it out. Just the unsteady feeling and faintness I can’t be doing with. 😏

[PMRpro Ambassador in reply to lennysmummy]

"I have no PMR that was tested in June."

How?

[lennysmummy in reply to PMRpro]

I had a blood test separate for I think dimer or something.

[PMRpro Ambassador in reply to lennysmummy]

D-dimer has nothing to do with PMR, it is a sign of clots. To my knowledge there is no test that can confirm PMR specifically.

[lennysmummy in reply to PMRpro]

my mistake then, I thought it was for PMR… so how would I know then if I have that as well? Only my shoulders and back and neck with problems but have had that for years. Mri said cervical spondylosis and bulging discs in lumbar region.

[PMRpro Ambassador in reply to lennysmummy]

By symptoms really. It is the GCA that worries me more for obvious reasons, Not all people develop PMR symptoms with their GCA and 8.5mg is often enough to manage it. anyway.

Everyone at 60mg would have pred side effects from day 1 - doubt anyone didn't. SO far your speedy taper has worked, I do hope it lasts.

[lennysmummy in reply to PMRpro]

Trouble is maybe it hasn’t…. As I’ve read before, a lot of people dismiss the blood results and go more on symptoms. It seems different consultants have different opinions on the treatment course.

[PMRpro Ambassador in reply to lennysmummy]

The blood results can lag behind the symptoms - there has to be enough inflammation for long enough to trigger the liver to produce the proteins that raise the markers and that sometimes doesn't happen early on.

[lennysmummy in reply to PMRpro]

wouldn’t that then show in the next bloods if they are being repeated every 4th week. It’s so confusing.

[PMRpro Ambassador in reply to lennysmummy]

It might but sometimes it can be months before it shows up when you are on nearly enough pred.

[DorsetLady PMRGCAuk volunteer in reply to lennysmummy]

Symptoms are the main key - or lack of them when reducing - and usually (but not always) substantiated by blood results -but as you say some Rheumies seem to take more notice of one or the other -when both should be taken into account.

As a past GCA patient, I worry that you have reduced too quickly and as I said previously your illness is not well controlled.

[Viveka in reply to lennysmummy]

I had the sore spots and twinges regularly with GCA. The muzzines and wobblyness came and went and were better under 12.5 but make an appearance if I ever have to go up again, even a bit . The thing is, are your twinges and sore spots bad and getting worse as a taper goes on or just chugging along intermittently? I'm not sure how tweaking up the pred will help if you're not getting clear symptoms. You have come down quickly so its good to slow down now and let things settle. (I was an eager beaver and flared.) Half a mg every four weeks seems reasonable provided symptoms are not worsening. Did you mean to say your rheumy is allowing you to reduce 1mg per 3 weeks rather than 3 months? 3 months is generous, 3 weeks, I would say, is pushing it unless you are feeling tip top which you aren't.

7 months in is still early days and to my mind you are doing well. I wonder if feeling anxious is having an impact on how you feel. If you could find some stress reduction techniques that would help. Good luck.

[lennysmummy in reply to Viveka]

Thank you so much for your reply. Yes my consultant has tapered me every 3 weeks by 1 mg. I have gone back up to 10 mg and to be honest it’s made no difference. The twinges are still there and now I’ve increased the headache are back as a side effect. Yes I do believe I came down too quickly but she is concerned that the steroids are causing more gastric problems for me. I have a gastroscope booked for 4/08. The tender spots went again before I reduced and they have been on and off even with the higher doses. I had just started to get a bit more energy back but now going up again I’m weaker again by mid pm. I’m seeing the consult again on the 14/08 and know she will bring me down again… it’s so hard as you are supposed to listen and do what is expected but we are all different and unfortunately I don’t do well on a lot of meds that I’ve had. 😏❤️

[Viveka in reply to lennysmummy]

In my experience a flare is pretty clear - things are bad or getting noticeably worse. Weird low level stuff around the head can come and go regularly with GCA. Pred can cause the muzzy wobbly feelings, though personally I don't think it causes sore spots and twinges. Best to avoid tweaking the dose, it just confuses things. You are describing feeling worse, eg less energy and more headaches, when you increase the pred, so not sure why you are doing this without clear GCA symtoms.

Can you kee a symptom diary over the next couple of weeks and describe what you are experiencing to the rheumy?

If she doesn't think you are flaring perhaps you can negotiate 1mg a month which is pretty standard between 10 and 5. Rheuymys can be right.😀

Presume you are taking them in dollops of yogurt and using coated pred.

[lennysmummy in reply to Viveka]

Yes I always take them with food and they are now finally gastro resistant…. Surgery kept sending scripts for ordinary. Are you saying you wouldn’t have upped from 8 and a half to 10mg? Maybe just ride it out. 🙏

[Viveka in reply to lennysmummy]

But also each tablet in a spoon of yogurt - shouldn't be neccessary for coated, but belt and braces for senitive tums.

So, the people who tweak their levels or use the flare 'plus 5 technique' tend to be PMRers who have an understanding with their prescriber that they can manage their pred within parameters.

7 months of GCA is still new into the illness. It's difficult to have the body awareness to understand what's going on and to be able to feel what should be a concern and what can be ridden out. That's why it is good to keep a journal as a more objective measure and to see the direction of travel. My experience was that symptoms could be all over the place for the first year so it was good to keep an oversight of them.

Also, hopefully there is a helpline at your rheumy department you can contact if you are unsure about symptoms - mine was very good at responding, but perhaps not all.

Going up by 1.5 should give you information, and hopefully your rheumy is understanding. However yo-yoing would make things worse. Steady is best.

In answer to your first point, as everyone has said, feeling generally yukky is part of this and makes us feel very low at times, but it will definitely get better. X

[lennysmummy in reply to DorsetLady]

sorry that should have read every 3 weeks.. 🙈

[Temoral]

GCA since 2021...hoped to have tapered by now, but several holdups. Very slow taper for last year...now on 4.75. Still get headach days, possibly tension when not pacing myself. Just have to resign ourselves to a quieter life than before.....

[Frewen1]

Nearly three years with GCA, down from 60mgs twice, once to 17mgs then back up, have taken it much more slowly ( my choice ) and now at 3mgs … not once in that time have I not felt “weird” in some way… heavy limbed, muzzy headed, wobbly. Have also been on TCZ for nearly a year, but that will stop in three weeks. Now being checked for low cortisol, had to do a retest just this morning. I don’t remember when I last felt “ like myself”, whatever that was… so you have my sympathy. But yes, you do seem to have tapered very quickly… good luck

[lennysmummy in reply to Frewen1]

Thank you. The heaviness is horrible. I’m glad I’m not the only one that feels this… 🙏

[Frewen1 in reply to lennysmummy]

you’re really not! X

[Arnhem]

Had GCA bad in 2020, 60mg a day for a year then another year to get off completely... Literally just having a flare up and been on 30mg a day for 2 weeks. Forgot how awful you feel...numb at side of right temple, pins and needles etc..heavy right eye....ended up in A&E as felt so rough....had all tests and head CT scan to rule out anything sinister....consultant reckoned GCA and I have pinched nerve in neck....awful...staying on 30mg for another 2 weeks and in addition painkillers for neck......awful heavy feeling back and numbness as before...you really aren't alone...GCA is horrible and now I know does return....you have my sympathy, but don't taper too quickly.

[DorsetLady PMRGCAuk volunteer in reply to Arnhem]

Had GCA bad in 2020, 60mg a day for a year then another year to get off completely.

60mg for a year? why for heaven’s sake?

[Arnhem in reply to DorsetLady]

Rheumatologist and Opthalmic Consultant working together prescribed it...wasn't for me to question at the time I felt so ill.....but no way was I going down that route with this flare up...30mg is bad enough. Also during lockdowns most was telephone appointments so not a face to face discussion...I felt they just kept it going until they could see you personally.

[PMRpro Ambassador in reply to Arnhem]

Appalling, Life didn't just stop here - you were seen if it was necessary. And in GCA, it IS necessary.

[DorsetLady PMRGCAuk volunteer in reply to Arnhem]

Not good enough, I had lost sight in one eye before diagnosed and spent 2 weeks on 80mg until ophthalmologist consultant was happy second eye was okay, then 8 weeks at 60mg - which when compared to others I have replied to over the years since was a long time…

My diagnosis/treatment was pre Covid lockdown, [2012-2016], but even with lockdown thrown in the mix, a year at that dose was bonkers… and we weren’t locked down for a complete year, there were times when you could - and should - have been offered an appointment.

Just as a matter of interest, why didn’t you ask for advice from this forum rather than the Pain Concern one at the time?

[Hrblock57 in reply to DorsetLady]

Glad to hear you are off the prednisone. My GCA has been 2 years sadly seems like I still need the prednisone ..

[Hrblock57]

I feel the heady issues too. My head is always heavy and tightness in my jaw is on and off also . It is not a headache but it feels like something is wrong and I have been on Pred for 2 years now for GCA and I am on 1mg for the past 3 months. Two days ago my CRP was elevated from 3.4 last month to current 6.4 and I am concerned about it. I thought I was going to end the Pred but sadly not yet. My rheumy does not want to increase the dosage yet concerned about stomach and liver effects.

The heady stuff you are feeling be patient follow dr orders and hopefully in time will go away Each person is different

Good luck to you and all of us

[DorsetLady PMRGCAuk volunteer in reply to Hrblock57]

Two days ago my CRP was elevated from 3.4 last month to current 6.4 and I am concerned about it.

And rightly so, increasing blood markers could be a cause for action, and your Rheumy should be more concerned about returning GCA rather than stomach and liver issues…

[Hrblock57 in reply to DorsetLady]

I agree 100% but my rheumy classifies the increase a hair above normal and ESR is normal, so no increase on the dose until another test done in 30 days.

[DorsetLady PMRGCAuk volunteer in reply to Hrblock57]

That’s as may be, but even a small increase in numbers indicates inflammation is building…. align that to symptoms you describe- and I still think another month is too long for action.

[Hrblock57 in reply to DorsetLady]

Thank you I just sent my rheumy a message hopefully she will answer me being weekend

[PMRpro Ambassador in reply to Hrblock57]

That's as maybe - but the normal range isn't the range of levels that is OK in an individual. It is the range of readings found in 95% of a large population of nominally healthy subjects, 10,000 is a common number. YOUR normal is the lowest level you can get to and once it starts to rise she should be looking for a trend. In a week or so - not a month.

[Kittymom7]

I’m only a couple of months diagnosed and taking prednisone. I get that “heavy head” feeling too and pressure. My neuro opthamologist has me on 10mg but my symptoms are still with me. I’m there where you are but I don’t know when it will stop. Best to you.

[Bramble2000]

could it be the meds making you feel this way? I couldn’t tolerate the steroids. X

[lennysmummy in reply to Bramble2000]

There are no other options are there? They definitely don’t agree with me. 🤷‍♀️