Another diagnosis - GCA confirmed: Hello everyone... - LUPUS UK

LUPUS UK

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Another diagnosis - GCA confirmed

Horsewhisper profile image

Hello everyone

I hope you are all ok during this very difficult time. I just thought I would update you on this and ask this lovely community a couple of questions. About 5 months ago I posted about a severe, left sided headache and received some very helpful replies.

Last week, I was diagnosed with GCA further to temporal ultrasound scan. I will be 53 in July, and symptoms include left sided permanent headache for past 6 months, scalp sensitivity, unintended weight loss, night sweats, low grade fever and increased fatigue. GCA was originally ruled out in December as I had normal ESR and CRP levels and was considered "too young". Recently, I had recent elevated CRP but normal ESR. The scan was conclusive. So now on steroids and in the high risk shielding category. I will of course need to be even more careful, washing the delivery parcels, not go off the premises etc. I still have the tremor and am waiting for Neuro appt in June for this to be investigated.

A couple of questions for you - does anyone on here or from the PMRGCA site have other autoimmune conditions such as Lupus, MCTD, UCTD, Raynaud’s, Sjogrens etc? I am UCTD and wondered how common it was to have other AI conditions in conjunction with GCA? I might nip over to PMR/GCA and take a look there.

Are there any other complications I should be aware of? I have calcium deposits in my left breast and wondered about atherosclerosis as the GCA is on the left side of my head? Or am I being over cautious/getting concerned about the 2 being related or not? You know what it’s like...getting a diagnosis and then the shock of it and then working out what it all means...then all of this in the midst of Covid19. Thanks for reading, take care wherever you are xx

18 Replies

Hi,

Have they ruled out other large vessel involvement such as your aorta etc? There is a rare type of Vasculitis called Takayasu’s arteritis which, like GCA, involves the large vessels. Given your age and constitutional symptoms might be worthwhile asking for it to be ruled out.

Hi Brussels, thanks for getting back to me. Rheumy hasn’t mentioned this so will raise it next time, probably by phone I should think. I don’t have any eye involvement either, have had 2 very recent comprehensive eye checks at eye casualty and ophthalmologist. I have had left sided mild chest pain today and last night, I put that down to overall stress though!! Will keep you posted x

Have you asked over on PMRGCAuk? There are lots over there with at least one other condition. We really are quite a friendly lot :) Once you have one a/i disorder the chances of developing another are raised. However, I don't think that it necessarily 2 (or more) different a/i disorders: it is a very wide spectrum and the label you get is still based on the older medical descriptions of which "set" of symptoms is most obvious. I think that each of us has our personal syndrome with as few or as many manifestations as you like. You have Horsewhisperer syndrome!

You are perfectly in the age range for GCA - over 50 and we have loads of people in early 50s and even in their 40s. One in 5 patients have blood markers "in normal range" - but that doesn't mean they aren't raised for YOU, just that many doctors don't actually understand what noraml range means. If anything you are too old for Takayasu's - and some doctors will even change your diagnosis if you are dx'd with Takayasu's when in your 40s (much more likely) and it continues past your 50th! Histologically they are the same - but given the choice, GCA really is preferable. However, you can have GCA and LVV (large vessel vasculitis) that isn't as complex as Takayasu's.

Horsewhisper profile image
Horsewhisper in reply to PMRpro

Thanks @PMRpro, most helpful, I’ll post on PMRGCA also and see what people come back with. I hope everything is ok with you at the moment x

happytulip profile image
happytulip in reply to PMRpro

I hoped you had seen this post. You're the expert for the job with GCA Pro.

Hope you are doing ok over there.

PMRpro profile image
PMRpro in reply to happytulip

I see them all - but only follow ones that are relevant/know I can help with.

Always poke me if you think I can ...

Hey J - so sorry to read this. I remember you were being tested for it. I know it's awful, but I'm hoping you feel some kind of better knowing the reasons for your symptoms and getting the right support.What does this change in your meds/care etc? Steroids - not great :( - and anything else? Are you keeping a daily chart of your symptoms? Are you feeling fully supported? It does sound like you are getting excellent care - do you agree? I will read up about it. The whole shielding thing is quite a big thing, I know. And, of course, living with your family is great, but complicates things as presume they are still going out - but only alone or with each other. Lots of "hosing down", as my rheumy put it, whey they come home! What we need is that vaccine! I've not seen anyone face to face other than on Facetime etc for 3.5weeks. It's not great, nope! Anyhoooo, this is how it is for so many of us and what will be will be. I'm thinking of you. Hugs Dx

Horsewhisper profile image
Horsewhisper in reply to DJK99

Hi D, lovely to hear from you. On Prednisolone and to taper steadily until the end of the year. Great support from the NHS, quick and attentive which has been very re-assuring. Got a letter from GP stating that I’m in the extremely vulnerable category, like so many of us on here, so the whole family is under the shield. Rheumy nurse mentioned about the hosing down regime and made very clear how things should be on the de-bugging front. No one at home has been out in public in the past 3 weeks anyway (apart from my hospital scan) and deliveries get dropped off at the gate and get sanitised before coming into the house etc. Full on cleanliness routines all round! Thank goodness for all the video apps and online gaming for the kids to keep in touch with their mates and for hubby and I with ours. Our remote location enables us to get outside around the farm without seeing anyone, so fresh air and gentle exercise is plentiful, fortunately! Lots of baking and poker playing is keeping us amused, plus a bit of work here and there to keep the grey matter ticking over. Have become quite philosophical about the whole thing and just need to get on with it and get through it. Feel a bit vulnerable and helpless at times, but I suppose that’s just normal I suppose! Hope the jackdaws are keeping you entertained and not pooping too much on your balcony! Take care too and keep in touch xx

xxx

Sorry I have no advice but just wanted to give you my best wishes yes it’s all very hard and must be a lot to handleand at a time like this it must be even more so. Just wanted to give a reply of support. Take care be safe and best wishes 🙏🤗

Horsewhisper profile image
Horsewhisper in reply to stiff19

Thank you so much stiff, really appreciate your kind thoughts. Just getting used to the steroids waking me up in the dead of night. So nice to browse HU and read everyone’s posts, loved yours about Cornelius! What a charming bird! Hope you are doing ok, all the best back to you too 🥰😘

stiff19 profile image
stiff19 in reply to Horsewhisper

Thankyou 🙏 glad you see Cornelius , 😍 sorry to hear your new dx but pleased to hear you’re getting great nhs support🙌🏻

I just see ‘ you’re boy’ he’s so handsome 😍 🐎 , I miss my horsey days 😞 but many fond memories 👍

Best wishes 🙏 to you your family and animals 🐎🐎🐎😍 🤗x

Horsewhisper profile image
Horsewhisper in reply to stiff19

Yeah, great support from the Rheumy Dept at the moment, even with all the C19 going on in the rest of the hospital, much relieved. So sorry you miss your horsey days, at least you have the memories with you for ever. I can share pics and stories with you! Lucky to have my boys living at home, so the kids can ride round the fields at the moment and not see anyone, very fortunate. Best of wishes to you too stiff! 🤗😃🌞

stiff19 profile image
stiff19 in reply to Horsewhisper

So glad and must be a great relief 👍🙏 yes that’s a great idea I’d love to 👍🙌🏻 Yes boys are very lucky but the I guess they know that and I hope they’re enjoying it 👍🙌🏻😂 best place to be 😂😂

🤗🙏

Hi, my doctors thought I had GCA a few years ago, my Esr was extremely high and I had to urgently go on high dose steroids. They told me the gold standard of diagnosing this was to take a biopsy from the temporal artery, after three weeks on the steroids they managed to fit me in to get it done. After phoning many times they cudnt tell me the results because they lost them 🙄. 4 months calling them the rheumatologist found them, they had been sent to the vascular dept and were sitting there. I was most annoyed but they told me the treatment was the same whether it was positive or negative which mine was. Then the rheumatologist again called me to say she didn’t think I had GCA and to come off the steroids. I now had been on them 9 months. I have been diagnosed with MCTD, I’ve had so many serious but odd illnesses happening to me for 7 years. I had every symptom of GCA and it was really scary but I didn’t realise how serious it is. Have they done a biopsy on you?

Hi Lizard, sorry to hear that you went through all that messing about and to have been on steroids for that long. Interesting to hear that you have MCTD. I had an ultrasound scan of the temple area (as well as the armpit) and it was diagnosed from that. They showed me the halo effect in the arterial wall which was was interesting, if a little weird to see. Luckily I don’t have any eye involvement but need to be aware of that from now on. So on steroids and taking it easy under the shield. I hope you are ok? Do you still have symptoms? X

The steroids certainly worked as much as I hate them, my consultant told me take them or go blind. Havnt had any symptoms again but would I certainly know what it’s like. I cudnt even put my head on a pillow it was so painful, I had sweats I’ve never experienced before, I cudnt have the shower on my head it was so painful. They did say that they could have taken a bit of artery that wasn’t diseased so they keep treating you with steroids, I was told it is the only way to diagnose it but your scan looks good if it avoids the biopsy. It was scary. I’ve had many strange illnesses all inflammation related, I have Raynaud and have been tested for Sjögrens but that was negative. My blood test showed that my rheumatoid factor was high sky they said. My recent illness was lymphoma but had treatment and now just living with it but I’m really well at the moment. (Touch wood) hoping the horrible steroids work for you, it took months for my ESR to come down but did in the end. Take care

I have lupus along with raynods syndrome and acid reflux! Also a loss of taste buds and something went wrong inside my right ear nd can hardly hear anything but my own heart beat! I dont like life rite now nd im losing my part time job 4 awhile with my good friend nd im having trouble paying my bills along with trying 2 get food stamps and that office is closed! Soo everyone is going thru alot of stressful time rite now. It sux!

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