Update on GCA ‘flare’

[Plantmad]

I posted about 2 weeks ago to ask if it was usual to experience GCA symptoms while on treatment. Received good advice as usual and spoke to my GP who arranged a face to face appointment with my Rheumy and said to continue on 20 mgms of Pred. Rheumy had said to reduce to 17.5 IF FEELING WELL after Christmas. As I did not feel well I didn’t reduce.

The appointment was yesterday and I was surprised, to say the least, when the Rheumy said she thought that I may have been misdiagnosed and may not have GCA or even PMR. She based this on the fact that 20 mgms of Pred was not helping with my present symptoms of stabbing temple pains and almost daily migraines and general malaise. She felt Prednisolone was probably not the correct drug and wants me to reduce to 10 mgms before I see her in 2 months. I have always understood that if the dose of Prednisolone isn’t helping with symptoms it needs to be raised. She also pointed out that my ESR and CRP have never been very raised.

When first diagnosed with GCA last August I was told a biopsy would be done but this was then cancelled because of COVID. The Rheumy suggested an MRI was needed yesterday but didn’t want to do this either because of COVID. She then asked if I was worried about having GCA to which I answered I obviously am not happy about it but don’t pointlessly worry either. She ignored this answer and suggested that my symptoms were a result of anxiety, especially during the pandemic and that I should ask my GP for antidepressants! I was then sent for an x-ray of my neck as she thought possibly cervical neuropathy was responsible for the headaches. I have had neck problems and migraines all my adult life, but the pain and tenderness in my temples plus aching jaw are new symptoms.

I left feeling frustrated and confused. She may be right and if I don’t have GCA/PMR then that’s wonderful, although I do seem to have symptoms that go against that. I have reduced to 17.5 mgs this morning and will see what happens. I don’t know what to think and would appreciate your thoughts and opinions.

[DorsetLady PMRGCAuk volunteer]

Hi,

Firstly not being pedantic but if you could put some Info on your profile - particularly from GCA diagnosis last year - ie what led to that diagnosis and treatment since, it would help us to give a better answer.

As stated in reply to previous post up to 20% of patients don’t have raised markers - but some Rheumy’s don’t seem aware.....so symptoms are the key!

Very doubtful that 20mg will address GCA symptoms - minimum starting dose as per guidelines is 40mg.

Not sure why MRI dismissed because of COVID - most hospital are managing to continue investigations unless they are completely overwhelmed and it’s an executive decision to cancel all.

No wonder you are frustrated and confused....I guess you have to follow her instructions...but obviously if your headache/jaw gets any worse or you should get any sight issues then you must go to A&E - no matter what! Let’s hope that’s not necessary.

[Plantmad in reply to DorsetLady]

Thank you for your reply. I thought I had already completed my profile but must have done something wrong - I will blame my foggy brain! Hopefully I have now done it.

[DorsetLady PMRGCAuk volunteer in reply to Plantmad]

That’s great thank you, makes it easier to remind ourselves before we answer.

[PMRpro Ambassador]

It would help to have the grounds behind her original reasoning for it being GCA last summer - must have been good enough then. I don't agree with her that 20mg not achieving much is a sign it isn't GCA - if 20mg were enough for GCA then surely they would use it anyway? Whatever the dose it doesn't always relieve the malaise of GCA - whatever they may think. That is due to the underlying a/i condition and the pred doesn't touch that.

I AM a bit concerned she has jumped onto the mental health waggon ...

If you do go to an A&E - is there an option of one where she doesn't work?

[Plantmad in reply to PMRpro]

Yes I agree about the 20 mgms of Pred but am doing as she advised and will see what happens. Unfortunately, there isn’t another local A&E. There was, but it closed last year - more cut backs I imagine.Hope your daughters are both staying well PMRPro and thank you for your reply.

[PMRpro Ambassador in reply to Plantmad]

One is shielding again - and spending her time doing all her uni work The other is back in her own department catching up on routine NHS work instead of being in CVICU - not sure if it is safer or not!!!!

[Grammy80]

I'm so sorry to read that...but thankful you have heard from Dorset Lady and PMRPro~!!!I have GCA and went through a period where 80+ mg of prednisone per day didn't touch my symptoms and was then put onIV methylprednisolone (1000 mg for three days) then tablets plus Actemra. Three times in attempting to taper once I get below 10 I have problems. Will start to reduce again next month.

Please listen to what your body is saying. It seems quite a leap from the low dosage you are on, considering all factors, to thinking tranquilizers are the cure.

I'm thankful you are reaching out and you will be in my thoughts. This forum gave me the courage to diplomatically stand up to my doctor. We know our bodies...and we can be our best advocates. Tell her the forum is coming....👩🏽‍🤝‍👩🏼👩🏾‍🤝‍👩🏻👩🏽‍🤝‍👩🏽👨🏼‍🤝‍👨🏼 💖💖

[Plantmad in reply to Grammy80]

I can’t imagine how you must have felt on such a high dose of Prednisolone plus all the other drugs! I wish you well with your taper and appreciate your kind thoughts. Yes, I was offended when the Rheumy suggested antidepressants and also surprised. Of course, I thought of all the things I should have said after I left her consulting room! Hopefully I will be better prepared next time. Thank you for replying.

[HeronNS]

Don't know under current circumstances whether you could get a prompt appointment with an eye specialist - not just the person who prescribes glasses, but the one who can do surgery and knows as much as there is to know about eyes. Here that would be an ophthalmologist, but maybe different title in UK. My ophthalmologist was much more alert to possible GCA and the effects of prednisone (like raised ocular pressure) than my GP. (I have never seen a rheumatologist.) but at least you could get your eyes properly examined for whatever they look for concerning threats to the optic nerve which at best could put your mind at rest while you struggle with following doctor's orders, or at worst alert you to the need for a higher dose of pred to prevent possible damage.

[Plantmad in reply to HeronNS]

Thanks for replying. I was referred to an Opthalmologist when diagnosed with GCA last August and was reassured that there was no damage to the optic nerve. Things change of course and I will consider asking my GP to refer me to the Opthalmologist again. I appreciate the advice.

[HeronNS in reply to Plantmad]

No, that's great you were checked. As I had to be pretty proactive with my own treatment, especially having my eyes checked, having at the time a rather too laid-back GP, I always have to have a little worry about other people maybe being in a similar position.

[Grammy80 in reply to Plantmad]

My very best to you in staying on top of this. You aren't alone with this forum!!💖

[Grammy80 in reply to HeronNS]

That is awesome advice to my way of thinking. I had one ophthalmologist say, well....you have GCA and there is nothing I can do for you when my rheumy wanted me monitored while I try to taper again. After that character, the rheumy referred me to a retina specialist who just today, referred me to a neuro-opthalmologist. When I live in Maine went below 10 bothered my right eye, the ophthalmologist I saw there was great. I feel she saved my right eye the last time with a quick uptick in the amount of methylpred. Just more info to feed into the brain. Take good care 💖