GCA presentation

[Jsaoughs]

Mine started Oct 18, 2021. It started suddenly with a left temporal headache which i had never experienced before. I also noticed left jaw tightness/pain associated with movement of my mouth. Took ibuprofen with little relief. This was on a Friday and continued all weekend. Over the weekend the left temporal artery started swelling and became tender to touch. I went to my primary provider Monday a.m. and they sent me directly to the ER where they performed a CT arteriogram of my brain and lab tests. My ESR and CRP were not elevated but the CTA was consistent with GCA. I was admitted to the hospital and started on Prednisone 85mg. A left temporal artery biopsy was performed and showed GCA.

I’ve been on a prednisone taper since, methotrexate and now abatacept.

[fmkkm]

Thanks for posting! You are a great example of normal ESR/CRP but still positive for GCA shown on the biopsy. A lot of docs have a hard time sorting out the normal blood test but still GCA. Sounds like you received great medical care because they got to the biopsy fast enough to catch GCA.

[Jsaoughs in reply to fmkkm]

Yes they did jump on my symptoms fast and even though I was showing elevation of my inflammatory markers they still considered the diagnosis in their workup. My questions and reasoning for joining this group is to find out long term quality of life with a diagnosis of GCA. Mine hasn’t been so great thus far- I’ve had to quit work as a nurse due to GCA symptoms and medication side effects. Has anyone else experienced long term quality of life issues? Continued headaches? Fatigue? Weakness? How long did these issues last? 1-2 years? I’d appreciate any information. I’m still fairly young - 59 years old.

[Jsaoughs in reply to Jsaoughs]

Sorry I meant to say I wasn’t showing elevation of my inflammatory markers

[DorsetLady PMRGCAuk volunteer in reply to Jsaoughs]

Have to say once my GCA was diagnosed (but that it itself was a marathon) my journey from then on (apart from the usual side effects of Pred) was fairly plain sailing.

I had retired from work so that helped, but I was caring for chronically ill husband and coming to terms with loss of sight in one eye -so maybe not exactly sailing on a millpond!

Two weeks at 80mg, then 8 weeks at 60mg before tapering proper….and that length of time really did get a grip of the built up inflammation (18 months worth!)

Never had any GCA symptoms after the first 2-4 weeks - and never sure the headaches during that time was GCA related or from brain getting used to mono sightedness- probably a combination of both.

[SnazzyD in reply to Jsaoughs]

Hello, I was 54 and a part time practice nurse and manager of a cancer help centre when I got GCA in 2017. My inflammatory markers were normal too but I had negative biopsy. I was started on 60mg on the basis of symptom history and rapid resolution of symptoms on the first day of Pred. I too had to give up work due to being clobbered by the high doses of Pred. No idea which of it was the GCA and which the Pred but I did get a lot of muscle wasting. I kept my weight and blood sugar steady with a super low carb diet. I’ve been off Pred since Aug 2020 but can still be caught out with adrenal insufficiency if I do something for hours on end that is extraordinarily demanding physically or emotionally. I won’t work again I’m pretty sure though I do have another condition I’ve had all my life which is cyclical neutropaenia. Every three weeks my neutrophils drop to give me low grade infections like mild UTI. What I’ve noticed is that it hits me extra hard in terms of fatigue since GCA, so in my good week I could almost think about work but not for the rest of the time. I also know I’ve not been the same since Covid in March 2020, especially my memory. Muscle wasting has been an issue and I find it difficult not to get muscle strain though I am definitely getting stronger but painfully slow. It’s a case of trying to get stronger faster than I am ageing!

BUT! We are all different and as you know with all disease there are good and bad experiences across the spectrum so you need to know about them but then plough your own furrow.

[Jsaoughs in reply to SnazzyD]

Thank you for the information- sounds a bit like what I am experiencing. I had a 30 lbs weight loss at beginning- mainly muscle mass. I’ve now gained 10 lbs back with some improvement on strength but still not nearly at my pre diagnosis baseline. I have concentration issues and have to rest at least once a day on a good day due to fatigue. I, too, don’t know what is GCA and what is medication side effects.

[SnazzyD in reply to Jsaoughs]

What dose are you on?

[Jsaoughs in reply to SnazzyD]

Presently I am down to prednisone 25 mg daily. It’s taken me almost 6 months to get to this dose. I am having to taper 2.5 mg weekly to be able to tolerate the taper.

[SnazzyD in reply to Jsaoughs]

25mg was still plenty to make me feel ‘preddy’ and horrible - wired but weak, pulsing head, congested face and nose, emotional, foggy headed and not much of an attention span. Every reduction meant a few days feeling fluey, headache and very tired. I reduced 2.5mg every 2 weeks and from 20mg I did 1mg and fro. 18mg (stayed there for 5 weeks due to a holiday) I did 0.5mg a week until 10mg. If I wasn’t right I stayed a bit longer on the old dose. I was told off by the Rheumy but I said that a) I needed to be able to function, b) I hadn’t flared to date and c) Why risk going back up because of a flare if I was still reducing steadily? All they could do was allow me on my way. I can’t imagine going faster than I did.

[Jsaoughs in reply to SnazzyD]

It’s nice to know my symptoms are ‘normal’. I also have a few days of ‘flu’ feeling after each dose reduction- followed by better days. Thank you so much.

[DorsetLady PMRGCAuk volunteer in reply to Jsaoughs]

That’s steroid withdrawal. There is a post in FAQs penned by me re SW versus a flare

[SnazzyD in reply to Jsaoughs]

My withdrawal usually kicked in somewhere day 1-4 and lasted a few days or a bad one might have been a week. Once you get the know the pattern and symptoms you know if anything is different. I was always careful not to overdo it because I’d get the tell tale buzzing in my head and weird feeling with a bit of tenderness in the temple. One day when I was in the teens mg I felt like something had eased and I wasn’t at risk of a flare like I was. By 10mg I felt much less Preddy but less in need of a solid 2 hour sleep every afternoon. 10mg to 8mg was not bad at all, then at 7mg is was hit hard by adrenal insufficiency until that sorted itself out a bit more around 3mg. By that time I was dropping by 0.5mg introducing the new dose slowly over anything from 4-14 weeks. I had a Synacthen test at 4mg which wasn’t very special but by 1.5mg it was much better. I also felt a lot better. It took me a year to go from 1mg to zero. That’s a quick run down to give you guide to my journey that is similar to many but not all.

[Viveka in reply to Jsaoughs]

It feels like a long time in the early days but the important thing to remember is that it will feel much better as you taper the pred and before you know it you will be feeling much more like yourself. By 10 I was feeling almost normal in terms of strength and activity - but I was ok before that, back to exercise classes at 17.5. Still needed an afternoon nap, but I always have done. By 7 I felt terrific, though I was yet to get to adrenal territory.

From 20 it is generally a slower taper of 2.5mg per 4 weeks, although rheumys differ. It's generally not a good idea to rush things. I would suggest, if you have not done so already, compiling a symptom diary so you can understand your symptoms and better understand what is pred withdrawal, whether there may be residual GCA popping up. I have found this information invaluable since I flared after my third vaccine and an over-optimistic taper. I am now back down to 9 again. Understanding your body can help decide the length of the taper - if you have a rheumy who is open to such things. Good luck!

[Broseley in reply to Viveka]

Hi Viveka, "the important thing to remember is that it will feel much better as you taper the pred and before you know it you will be feeling much more like yourself." - this hasn't happened with me. I started at 40mg, and all my aches, pains, stiffness, headache etc disappeared and I felt better than I had done in years. I also had endless energy. Now I'm down to 10mg, which has taken 6 months, the aches and pains (e.g. back ache, hip pain, tennis elbow) I had before PMR/GCA are all back (but not the stiffness or GCA headache/jaw pain etc). However I am sleeping better!

[PMRpro Ambassador in reply to Broseley]

To be at 10mg in 6 months is pretty fast - and PMR is a symptoms of GCA for many. I;d say you have overshot - you shouldn't have the PMR symptoms back.

[Broseley in reply to PMRpro]

I haven't, I don't think, as I have had all these tendonitis problems for at least the last ten years, and back trouble since my 20s. It's these that have come back, not the PMR.

[DorsetLady PMRGCAuk volunteer in reply to Broseley]

I found my osteoarthritis pains came back when I got down to low teens -at that dose Pred not high enough to mask them… 😊

[Bcol in reply to DorsetLady]

Can go with that one as well.

[PMRpro Ambassador in reply to Broseley]

I've had back problems since my 20s too - and they are due to myofascial pain syndrome aggravated by a scoliosis and now PMR. If any one of them is playing up, the whole thing goes totally pear-shaped now if the pred dose isn't enough. In the absence of any other way of managing the MPS, I need more pred. It's not ideal - but it is the alternative to being immobile and in severe pain which ordinary pain-killers really don't touch. Covid stopped the Pain Clinic that was doing a sterling job - and it all conspired over time to flatten me some weeks ago. Just starting to get there - I think. But it has meant more pred again.

[Broseley in reply to PMRpro]

Mine was various accidents, I think. GPs not interested at the time. Now, after an MRI scan I've been told I have spondylitis in my back and a crushed disc. It's fine as long as I keep to my limitations, as I learned a long time ago, and sleep on a soft (but not saggy) mattress. Yours sounds a lot worse than mine!

[PMRpro Ambassador in reply to Broseley]

I don't know - I tend not to think of it as bad as long as it is managed OK. But it is getting worse with the a/i part of the PMR I think. Now listed on my diagnoses - never a good sign! It's degenerative inflammatory arthritis to be technical.

[DorsetLady PMRGCAuk volunteer in reply to Broseley]

Ditto to PMRpro’s comments

[Viveka in reply to Broseley]

Sorry to hear that, I didn't realise people could thrive on 40mg - although I do remember the euphoria with fondness. I was organising a big party until I got down to 30 and thought wft. How different we all are. Well, perhaps these are general aches and pains resurfacing or perhaps PMR signs as others have suggested. Sounds worth checking out. But really good that the GCA symptoms not back. It does seem quite a quick taper, maybe worth considering pausing at ten for a while rather than ploughing on? For interest, this is my latest taper plan approved by Dr Rod eg taper as normal 1mg a month from 10 but pause at 5 for longer. I have learned the value of stabilising...

[Broseley in reply to Viveka]

Yes, after tapering 2.5mg a month I've been told by rheumy to now taper by 1mg every 6 weeks.

[DorsetLady PMRGCAuk volunteer in reply to Broseley]

That’s sound much more sensible. 🌸

[DorsetLady PMRGCAuk volunteer in reply to Jsaoughs]

Maybe have a read through the FAQs, starting with this one -

healthunlocked.com/pmrgcauk...

Rest of FAQs -

healthunlocked.com/pmrgcauk...

Then you may be able work out what is GCA and what side effects….or tell us what they are…

[Cobalt2sister in reply to SnazzyD]

Hi. Thank you for sharing, and I wish you continued strength. I was interested that you were diagnosed based on symptoms and reaction to prednisone. What were your symptoms if you feel like sharing. They are still trying to access that with ne. See rheumatologist in may, seeing neuroopthamologist now. Negative biopsy, normal C-protein, somewhat elevated esr but temporal headache and scalp tenderness which resolved with prednisone. Feel in limbo now. I did have transient visual symptoms and put on 80 prednisone. But they're still little skeptical of GCA because negative biopsy so I'm always interested in peoples stories of diagnosing on symptoms. Ill know more in may and will report back. Best wishes and steady strength and healing to all. So appreciate this forum.

[PMRpro Ambassador in reply to Cobalt2sister]

Anyone who knows anything about GCA should be aware that a negative biopsy only means they didn't find what they were looking for: giant mutinucleated cells in the artery wall. And this all it means if the patient has symptoms of any sort - and even if they don't. Gold standard doesn't mean it is perfect or incontrovertible evidence. In this case - it was all they had,

There are all sorts of reasons - for one thing, visual symptoms and occipital headache indicate the inflammation is very probebly in the area of the optic nerve and the visual centre. But even if it is in the temporal artery - which it very often isn't, it just happens to be a handy, superficial artery that can be done without so offers itself for biopsy - then the lesion form what are called skip lesions, alternating with normal tissue in between. Then add in poor surgical technique and/or not a large enough sample being obtained - it has been known for a piece of vein to arrive at the histology lab - or an inexperienced pathologist or even a good one who didn't happen to see the tissue that shows the cells.

[Cobalt2sister in reply to PMRpro]

Thank you, helpful

[SnazzyD in reply to Cobalt2sister]

In the run up week I had tingling in my temples but mainly my right which went from intermittent to constant to a burning sensation under the skin. This spread over my scalp especially in the last 48 hours. Two days before a blood vessel stood out above my right eyebrow. In the weeks before I was waking with pain in the back of my head/neck that wore off once I got up and no amount of pillow changes or massages helped. I also had a slightly husky voice and a dry cough. When I was exercising hard I got black spots in my vision that went when I stopped pushing hard and at night I occasionally could only see grey out of my eye when I was staggering to the loo half asleep. I also had flashes of light at night occasionally. I had an increase in sweats even though I was years after a surgically induced menopause, kept losing my thread in conversations and was very tired but also feeling on the go. Glasses became uncomfortable to wear and by the time it kicked off, even the cold wind on my face was irritating. In the last 24 hours the burning in my scalp was intense but not like a normal headache. In the last two hours my peripheral vision started to narrow down. In A&E I got 60mg Pred within half an hour and two hours later I felt 90% better. None of my investigations were abnormal. I’m sure there’s more but that’s the gist of it.

[Cobalt2sister in reply to SnazzyD]

Yeah, some ordeal. Thank you for sharing. Enlightening...

[fmkkm]

Hi, you definitely came to the right place. There are wonderful people on here sharing experiences that will help you. There have been a few recent posts by new members detailing how the disease has altered their lives. For me, prednisone took care of the headaches, but fatigue does play a big role. I was 64 and have been dealing with GCA for 6 years. It is on a low rumble now and I only take 3.5 mg of pred but I am now 6 years older too.

Best to you!

[Susan1705]

Really great to be able to read your story with GCA, I was diagnosed with GCA in June 2021, already had PMR and left temporal headaches and thought I had a gum infection so went to dentist and nothing found. I also had blurry vision in left eye and so 1000mg of pred intravenous for 3 days and then 60 x 2weeks down to 20 and then 2.5 reduction every 4 weeks. 2nd Covid vaccine gave me CCA and 4th gave me flair of PMR and GCA. Currently on 20mg. It is hard to know what are symptoms of GCA/PMR/steroid reduction or not related. Just keep an eye, I can distinguish reduction of pred as I tingle. The fatigue is something I experienced before being diagnosed with PMR and then mostly went once on pred. I think this is also because I pace myself and nap for 30 minutes in the afternoon. I manage to work as a teacher and really rest in the holidays.

[GML19 in reply to Susan1705]

I was diagnosed with GCA in April 2021. It started with huge night sweats, rapid weight loss, jaw claudication and enlarged temporal artery. Despite these classical symptoms, the rheumatologist was unconvinced that I had GCA because my inflammatory levels, although raised, were not very high. I was put on high dose of steroids and my symptoms resolved immediately. My rheumatologist was only convinced of a GCA diagnosis when I started having double vision: fortunately so far temporarily. Mostly I have been fine and all problems have been and are steroid related. After several failed attempts to reduce the steroids, I am now on methotrexate to help me taper and am now down to 6mg steroid, so wish me luck! I found methotrexate made my life miserable. I could tolerate the hair loss, but the extreme tiredness was unbearable. I read about fasting and its effects on patients undergoing chemotherapy and I thought I would give it a try and to my greatest surprise it worked! I fast one day a week and now do not notice any ill effects of the methotrexate. I now taper my steroid dose 1mg per month, so hopefully, by the end of the year, I may be off steroids. During my course of treatment, I developed ischaemic colitis, discovered because of my low iron transfer levels and bowel changes. { I assumed the changes were due to medication.) This is now resolved with medication. Good luck everyone.

[PMRpro Ambassador in reply to GML19]

Ohhhh - now that's interesting. How do you relate the MTX dose and the fasting? Same day? Different days?

[GML19 in reply to PMRpro]

I fast on a Monday and take Methotrexate on Tuesday. I do take steroids on Monday without food with so far no consequence; however, I was reluctant to take Methotrexate and steroids on an empty stomach. During fasting, I take copious drinks of water, green tea etc and make a watery soup with Spinach flavoured with vegetable stock cube. Believe it or not, it isn’t difficult. I didn’t expect it to work and my husband, a very sceptical retired doctor, is astonished at the change in me. I really don’t notice any problems with Methotrexate at all. Well my hair isn’t great! I now have a healthy approach to the effects of diet on health.

[Strelitzia]

You were lucky to have such quick educated action. I went through months of dithering and denial before being diagnosed with GCA. Good luck !

[GML19]

Yes you are right; however, I didn’t realise the fact at the time. In fact, I was perplexed by the strange things that were happening to me. Thank you for your best wishes. I hope things will work out for you and for all auto-immune sufferers.