GCA -conflicting advice

[Hazeleyes48]

Hi

I am new to this group and being treated for GCA since April after headaches, jaw pain, blurred vision and abnormal blood tests.

I was on 60 mg of steroids until 2 weeks ago when I had a black out and collapsed,.

The next morning I had weakness and numbness in my left hand side and my speech was slurred, so was taken to hospital where I was transferred to a stroke ward. Fortunately after numerous tests I was told I hadn’t had a stroke but had a bad reaction to the steroids and has migraine with function. I was also told that there was no evidence of GCA and was told to come off the steroids. They told me to drop to 40mg for a week then last week to 20mg.

This has made me really ill, all the symptoms have returned worse than before and I can’t sleep and have lost my appetite. I spoke to my rheumatologist today and she said I need to increase my dose to 50mg. I’m just very confused as the rheumatologist and my GP think I have got GCA but the neurologist was insistent I haven’t got it despite all my symptoms and raised inflammatory markers in my blood.

Has anyone else been given conflicting advice? Also was it normal to have my steroids reduced from 60mg to 20mg in two weeks. I have never felt so ill!

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Sorry to hear about your episode - can’t explain that I’m afraid , but your symptoms do sound very GCA like to me. Not sure where the neurologist is getting his information re GCA from. . and telling you to reduce as he did is asking for trouble.

Would agree with Rheumy and your GP.

Reducing from 60mg to 20mg is a definite no-no, no wonder you felt so rotten.

Hopefully back on 50mg you will stabilise, and begin to feel a bit better.

If you haven’t already, please have a look through this post and then at the FAQs -in particular the posts of GCA patients experiences -

healthunlocked.com/pmrgcauk...

Take care, and please keep us informed.

[Hazeleyes48 in reply to DorsetLady]

Thank you for your reply. I will definitely look through the posts. When I was on 60mg I felt great, I had far more energy, no headaches and no blurred vision it’s just the lack of sleep that was the problem. I don’t want to be on steroids but I have accepted that I do need to be for now.

[DorsetLady PMRGCAuk volunteer in reply to Hazeleyes48]

Know exactly where you are coming from -I was started on 80mg having already lost sight in one eye -and with the possibility of losing the other initially. Once that was “saved” was on 60mg for 8 weeks..

Noticed in a reply to further down you gave already lost sight in one eye, so I do fully understand your worry -which makes the neurologist’s actions even more bizarre, if not foolhardy.

..and yes, irrespective of the side effects you do need the Pred.

Please keep us informed -and I wish you the very best.

[Hazeleyes48 in reply to DorsetLady]

I am so sorry to hear that you have lost your sight, that must have been hard.

I think he must have been having a bad day but he really talked down to me as if I was making it up. I was too weak and confused to challenge him. But now I know better I am going to speak to PALS at the hospital to complain. I have always been soft but he was so dismissive of my symptoms and it could have caused me to lose my eyesight in my right eye.

I spoke to a lovely lady at PMRGCA UK yesterday and she said it is important that doctors now look at me as a person not just someone who has a condition. What he did was reckless and I am cross that he wanted to cut the steroids down so much and so quickly! He also dismissed my Rheumatologist as well!

[DorsetLady PMRGCAuk volunteer in reply to Hazeleyes48]

He definitely needs reporting - he may have been “having a bad day”, but with his advice you could be faced with a ‘bad life”…..

As you (and many others on here) know life with one eye goes on, doesn’t stop me doing most things - but losing both is a different thing altogether.

And I agree with your comments, you need to concentrate on your own health, that is your number one priority, and you don’t need added stress, in whatever form that may come.

Take care 🌸

[SheffieldJane]

Oh you poor thing it is horrible to have conflicting advice from two consultants from different specialisms with different priorities. That reduction was savage. Your symptoms do sound very like GCA as we know it. If it was me I would follow my Rheumatologist and GP’s advice. I would be most worried about sight loss. When my symptoms settle I would taper down the dose gently, not more than 10% at a time. Let us know how you get on. My first thought was that your symptoms could actually have been related to GCA which is like a stroke, with large cells in your arteries. Good luck! So glad it wasn’t a stroke and everybody moved fast. It will be very hard to diagnose GCA definitively whilst on Pred. this is the problem.My conflicting advice was Rheumatologist and Endocrinologist. I followed my Rheumatologist, PMR, GCA and LVV were just not his specialism but Adrenal function was. Totally contradictory treatment plans.

[Hazeleyes48 in reply to SheffieldJane]

Thanks so much for the reply. I think the neurologist just wanted me out of hospital and because I have suffered from migraines he was adamant that it was that. He says I was far too young to have GCA …. Im 52. He basically made me feel that I was making it up. But as someone from the RNIB pointed out to me I couldn’t have made the 2 blood tests that showed raised levels of ESR and C Reactive protein up.

He also said when I came off the steroids that if the symptoms returned that I had to wait 3 weeks before going back to my GP.

My biggest concern throughout this has been losing my sight. I am already blind in my left eye due to an eye injury I sustained over 20 years ago. So the thought of losing my vision in my right eye would be too hard to bear.

I will follow my GP and Rheumatologist’s advice.

Thank you so much for responding, no one has really understand how much pain and scared I have been. My partner has been useless because he doesn’t really understand and told me yesterday he doesn’t want to be my carer… all I want is to feel better and get back to normal.

[Hidden in reply to Hazeleyes48]

Ah, that's sad you're not getting the support from your partner.....I'd have a think about that if I were you , if you know what I mean. Take care and we're all here for you X

[Hazeleyes48 in reply to Hidden]

I spoke to him yesterday, things haven’t been great between us for a while, so I have said my priority now is my health and getting better then I will move out. He says he doesn’t want to split up but I feel life is too short to be unhappy.

My dream is to live by the sea and travel. Travel may not be possible at the moment but once I feel better I’m going to look into relocating. My children are all grown up and have relocated to different parts of the country and now I feel it is my time to follow my dreams.

Thank you everyone for all your support it means so much. I have always put everyone else first but now I feel its time to be selfish and live the life I want 😀

[SheffieldJane in reply to Hazeleyes48]

Oh Hazeleyes48! The Neurologist’s advice about waiting 3 weeks before acting upon potential GCA symptoms sounds positively irresponsible and contrary to everything I have read. That alone would decide me that he is not the one I should follow.I am so sorry that your partner is compounding your anxiety with his personal panic. You need understanding support at the moment, not that. Managed correctly, GCA doesn’t need a carer as such. Many of us manage alone. We do need understanding and kind support. I am glad that you are in touch with the RNIB. You’ve got us and depending on where you live, we have support groups. Let us know your area and we can let you know, or contact the Charity via an Admin person like Fran, listed along the side of your screen. Wishing you well! Stay in touch!

[Hidden]

Yes, I too took myself off to the hospital. I was diagnosed with PMR in Dec 2019 and by Mar 2020 I had symptoms of GCA. Jaw claudication was my worst symptom and tender head. Hospital doc said no it isn't....I knew it was. so contacted my rheumy who increased the steriods to 40mg. It went but did reappear a few months ago. I only had to increase a little that time though. All seems good at the moment and currently taking 6mg and only reducing by 0.5mg per month, If you had a reaction from the steroids why did they say stay on them, although definitely the safest bet due to potential vision loss.

[Hazeleyes48 in reply to Hidden]

The neurologist in the hospital said I had a reaction to the steroids and told me to come off them, he basically said there was no evidence that I had GCA. The thing is I had two falls in a week, the second one I just collapsed without even knowing and hit my head the following morning is when I woke up with stroke symptoms.

I think the 60 mg dose of steroids was too much for me. I’m only 5ft but I was given that dose because I was getting blurred vision.

The high dose of steroids gave me increased energy, but the downside was severe insomnia … I have been getting only about 4 hours sleep , so have been exhausted and still been working full time . I have also lost weight, but my face and body is all puffy.

When I went on the steroids I made the decision to cut out salt and sugar. Although I do eat a big bowl of fruit and natural yoghurt in the morning. I think I collapsed because I had been exercising too much and was just exhausted… but the neurologist said it was the steroids that were making me ill. So insisted I came off them even though they had stopped the headaches, jaw pain and my vision had retuned to normal.

[Hidden in reply to Hazeleyes48]

You just listen to your body. You seem to be doing the right thing by continuing with the steroids. We all suffer isomnia while on Pred, but it does ease as you taper. I have had all sorts of symptoms in the two and a half years I've been taking them. What are you currently taking in steroid mg?

[Hazeleyes48 in reply to Hidden]

Well until yesterday after following the advice of the Neurologist I was cut down to 20mg from last Wednesday. I spoke to my rheumatologist yesterday because I was feeling shocking as all my previous symptoms returned but even worse.

She has told me to go back up to 50mg and have a blood test to check my inflammatory markers. It’s the lack of sleep that has affected me most. The pain in my jaw and headaches have been so severe that I couldn’t get comfortable.

[Hidden in reply to Hazeleyes48]

That is so awful for you, and I'd defo say you've got GCA. Like has already been said. some peoples inflammation markers are normal so one just has to go by symptoms. My marker were 515, so extrememy high. The pain I was in at that time from PMR was shocking. I know how you feel about not sleeping. You're obviously a lot younger than many of us on the forum as you've mentioned you work. You must feel absolutely exhausted from lack of sleep.

My very best wishes to you

Anne

[Hazeleyes48 in reply to Hidden]

I’m 52… I think that was why the neurologist was convinced I hadn’t got it. My understanding was it can happen from 50 years onwards but is more common in the 60’s and 70’s.

I also have Crohn’s disease.

I have always worked so I definitely don’t need a carer. I’m independent…. I have recently had to sign off sick buy only since going into hospital. I’m hoping that now I’m back on 50mg that I can return to with next week.

The last few weeks have just been confusing with the conflicting advice. My partner told me to stop googling the symptoms when I hadn’t I just told him what my Gp and Rheumy had said.

I normally manage everything really well but my partners lack of understanding has made me reevaluate our relationship.

When I woke up with the stroke symptoms I took myself off to hospital after ringing 111. I was then transferred to another hospital. I arrived at 7am. He didn’t visit me until 6.15 pm that night then left after 30 minutes to go out for a drink with his family. I didn’t say anything at the time but I was shocked. I had already been told earlier that day by a junior doctor that it was likely I had suffered a mild stroke. Maybe I’m old fashioned but I wouldn’t have left my partner like that!

He really does not understand how hurt his lack of care made me feel.

I didn’t tell my grown up children I was in hospital as I didn’t want to worry them.

[Hidden in reply to Hazeleyes48]

Oh my goodness you poor thing. I would definitely take a good look at your relationship. Do you live together? It's these times we need comfort and understanding. I know men of different species to us ladies, we are the nurturers. We all Google symptoms, as we get little advice from our GP's these days and are encouraged to go via our pharmacies instead (they didn't help me when I recently had an accident with my leg) minor I know, but even so. All I would advise being an older person is try hard not to get stressed, as hard as it is....stress it the known culprit for many diseases. Pretty sure that's what was the cause of me getting PMR.

We're here for you to let off steam. If you prefer to do it privately, use private messages. Happy to chat with you that way.

Anne

[Hazeleyes48 in reply to Hidden]

Thank you, I feel bad moaning .

We have been together 8 years and lived together 6 years.

I am used to him never taking me out. I have got great friends who I socialise with but I thought he cared more than he has shown.

Sometimes things happen in life that make you see things differently.

I will take this as an opportunity to live the life I want to 😊

[Hidden in reply to Hazeleyes48]

Absolutely, and maybe find someone that appreciates you more...remembe life is short, so don't waste it X

[Hazeleyes48 in reply to Hidden]

I think I just need to be on my own. It’s going to take time to process it all.

I told my children once I got out of hospital. I didn’t want to worry them for nothing . They are adults and have their own lives but my daughter has been amazing and very supportive.

I am so grateful for all the lovely responses. It has really helped.

[DorsetLady PMRGCAuk volunteer in reply to Hazeleyes48]

“They are adults and have their own lives”… yes they are and yes they do, but that doesn’t mean they don’t care or worry about you.

You can keep them informed (with as much info as you think they can handle or need to know -that varies from family to family, person to person) - but they need to have an idea of what you are going through mentally and physically… for their peace of mind as well as yours. 🌸

[Hazeleyes48 in reply to DorsetLady]

I know you are right, my daughter understands more and has been extremely supportive.

I just hate worrying them, I lost my partner, their dad 11 years ago and that was very difficult for all of us. I’m very protective.

[DorsetLady PMRGCAuk volunteer in reply to Hazeleyes48]

I know, I lost my hubby in 2013 after a long illness and because they both had youngish children then I perhaps didn’t keep them as well informed as I should have.

I regularly get a “grilling” from son wanting to know I’m alright…. but then his dad did tell him on the day he passed to “look after your mother!”

Must say, he does,,😊

[PMRpro Ambassador in reply to Hazeleyes48]

My husband was like that - we had been together for over 50 years when he died last autumn, but now I realise how much I missed out on because he was like that for the last half of our life together after he had cancer and all the little traits became much more obvious. He didn't want to make friends or join in events - and as people move it gets harder. I've lived here longer than anywhere else in my life except before I went to uni. I have many friends all over the world - but that is different when you get older and stop working.

Would I change it? Probably not - but all those years without a common social life and his lack of interest in me and my life was difficult. He took little obvious interest in his daughters or grandchildren - I don't remember him playing with any of them or telling them he loved them. Little things like that do make me sad.

[PMRpro Ambassador in reply to Hazeleyes48]

I think you are very right to reevaluate that relationship - and don't feel afraid of seeking some help in doing so, you will need support for some time with GCA, especially if you are continuing to work - more power to your elbow!!! Thanks to google you found us, we can do a lot but a physical presence is sometimes needed.

And do tell the children - they need to know. Edit it if you need to - but tell them

[Hidden in reply to PMRpro]

Agree, I was going to say the same. They should know

[PMRpro Ambassador]

I'd side with the rheumy and GP - migraine wouldn't cause inflammation. You may not have had a stroke - but it may have been a TIA, a transient ischaemic attack, a mini stroke, which resolves quickly (within 24 hours) and leaves no traces. The loss of vision in GCA is the same as a stroke though for some reason it rarely gets compared with it and the risk of stroke is raised for a year or so after a GCA diagnosis.

The neurologist is poorly informed, the youngest confirmed case of GCA I know was was 37 - and the diagnosis was missed because of age, confirmed by the pathologist at the post mortem after the guy died of a massive stroke. No arguing with them!

[Hazeleyes48 in reply to PMRpro]

I thought it was a TIA too, but he said no because the symptoms lasted more than a few minutes, my symptoms went after 16 hours.

I have suffered from migraines on and off for years. These headaches that I have been getting are totally different. Like no other headache I have experienced.

I have been getting jaw pain too, even stroking my cheek feels like I am being stabbed by a knife.

When I have migraine, I get an aura, then I am sick then I have to lie down in a dark room until the headache subsided.

[PMRpro Ambassador in reply to Hazeleyes48]

Ho-hum - I know he is a neurologist but the definition of a TIA is that the symptoms respolve entirely in under 24 hours - FROM a few minutes up, not IN a few minutes.

nhs.uk/conditions/transient....

I've come across a lot of people over the years where doctors insist it is a migraine - even when they have never had a history of migraine. And your description of "Like no other headache I have experienced." is absolutely typical.

Ignore your neuro - stick with the rheumy and your GP.

[Hidden]

I totally agree with you re the GCA headaches, they certainly are different even from a bad migraine. Mine started on one side of my head and always around 2am. It felt like a whirling feeling then the pain would start....so blnking frigtening as I had no idea about GCA, come to that never heard of PMR either.

[Viveka]

Agree with what everyone has said (neurologist, sheesh!) but thought I would chip in and suggest you limit your activity levels while on high doses of pred. It is a false kind of energy. Of course stay active but now is the time to do more gentle exercise, and take a lot of time for relaxation and re-energising, particularly as you are working as well. It's fantastic you have already made a good start with diet - a lot of us struggle with comfort eating, I'm afraid, but I can report that when I was disciplined enough to change diet to reduce my pred related prediabetes, I felt great!

As you taper the pred things will get better - sleep will return and you will feel more centred, though sometimes other challenges come along. Suggest you keep a symptom diary which is very helpful over the long term.

As you'll know, illness often brings life changes and challenges, but the good thing about GCA is that eventually it burns itself out (when this happens depends on the person) so your hopes and dreams are well within reach.

[Hazeleyes48 in reply to Viveka]

Hi VivekaThanks for your lovely response.

I agree I was doing far too much before. It just felt great being pain free and having so much energy.

I think the best approach now is to take each day as it comes.