GCA hospital diagnoses

[Den73]

Morning, I went to the Horton yesterday morning, soecial unit where they were thorough in the exam, its like a day ward. They treated me with such care and understanding which was much appreciated.But after all thr blood tests and other, except they dudnt do a scan because the inflammation level was not raised enough they felt despite my temples feeling very tender and this headache that is still present, does not hurt when I chew in tge jaw area I am very light headed just does not feel normal, Iam very shaky from the inside , just rely do not feel well....could it be extreme fatigue I wonder?

The doctor I saw said I could drop to 40mg pred, so I will do that from today may its that too the side effect of the pred only been taking the 60mg dose for 2 days?

So still a little worried about the symptoms which I have not felt before.

So maybe just sit it out and see what happens? Today will just be a bed day, just feel so weak.

Sorry for the unburdening, but maybe someone has had similar symptoms? Comments would be most welcome.

Thank you all in advance. Xxxx

[DorsetLady PMRGCAuk volunteer]

Hi,

Thanks for update…

To be honest, not really sure what it is, the lightheadedness and shaky feeling could be due to the 60mg dose, and probably a bit of stress from what you’ve been through the last few days. Quite understandable.

As you say a few days of rest and a lower dose of Pred may settle things - I do hope so.

Best wishes. 🌸

[Den73 in reply to DorsetLady]

Thanks DorsetL thats is what my thinking is, as the 'feelings' are so different, so going to just go with the resting and hope that sorts it out. And that I get results quickly from changing rheumatologist, which this doctor at the hospital yesterday discussed with me as he had read my notes with regard to previous rheumatologist, he is woeking with my GP to get the new rheumatologist on board because he too agrees I am not getting the support I need from the present one so if one good thing comes out of the visit yesterday will be that.Thank you for ypur comment, much appreciated xx

[SnazzyD]

When GCA blew up, yes I didn’t feel great and my head hurt but when I started 60mg I felt debatably worse. I recognise your inner shaking and feeling oh so weak. On the Friday aged 54 I had cycled home 8 miles from a busy job and on Monday I was doing things in slow motion, couldn’t think straight and I felt like I was on a different planet to everyone else. On the plus side, my GCA symptoms were gone but at without a definitive diagnosis I did wonder at times if this was worth it. So, I wouldn’t say it is an extreme effect of high dose Pred but rather a normal effect of high dose Pred. The annoying thing is that nobody can see what you are experiencing in this lonely and disconcerting head and body space you’re in. The good thing is, it won’t last forever, merely longer than you want.

[Den73 in reply to SnazzyD]

Oh my goodness SnazzyD just how I am feeling!Thank you, I feel so totally unsettled, back to the old story of everyone is diferent and you right no one 'sees' how you shaking inside, feel totally derailed,

Thank you for the encouragement of it wont last long, just going to rest up today have only taken 40mg today as per doctors instruction, will see how it goes. Xx

[SnazzyD in reply to Den73]

40mg is still plenty to discombobulate you so don’t be disheartened if it isn’t a miracle. However, every drop in dose helps. Rest is key even though you can feel like you are exhausted but permanently wired up to the mains.

[Bcol in reply to SnazzyD]

Nothing to do with GCA etc but just love that word "discombobulate" first heard it from my late father when I was young and have always thought it was a brilliant word.

[Fatsiajaponica]

Hi Den, I had the same symptoms on 60mgs accompanied by exhaustion, could have slept at any time in the day. The shakiness was not only internal, balance off and dizzy. It appears that the high dose was affecting my potassium levels and magnesium and had awful cramping. It was strange as when on 20mgs was hyper and felt fine. So, as I reduced down 30 mgs was the noticable improvement and even better back on 20mgs. I hope that it will be the same for you and that you stabilise and feel better soon. Sending my best wishes x

[Den73 in reply to Fatsiajaponica]

Thank you so much for the reassurance. I too am so dizzy and light headed.... I certainly dont want to stay here on 40mg for too long either, going to take DorsetLady advice on the tapering ss all this up and down was only in the past 2 to 3 weeks so hopefully I soon will feel better, headache and tender temple still a bit of a mystery?

Thank you everyone for the advice and reassurance xxx

[Predderman2020]

I had similar symptoms over the summer. I thought it was Covid with an extra weird headache that stayed for 2 months, and only responded to Sumatryptan for about a day and half. There is always the GCA worry with iidiopathic temple pain, ('trigeminal' area). Nb: I had a Biopsy in the trigeminal area about 8 months ago, which was negative. It was that weird pain in my temple (when I touched it) that had really frightened me, of course. Pmrpro advised this summer that I check out my head to eliminate other sinister possibilities, which I did. Living in Greece this is possible for patients to book their own tests, cheaply and then call a specialist and see them the next day. Blood tests (infection/inflammation) and MRI were both OK. I saw the Neurologist yesterday. He (and the radiologist's report) said the Trigeminal area was normal and undamaged/unstressed. The brain is normal with no sign of stroke, etc. The Neurologist said that he had seen several people with unsteadiness, shakiness, fatigue and headache over the summer, which eventually resolved for them. His cautious opinion was that this was a virus causing 'cephalalgia' brain pain, and that we all tend to jump to conclusions after our experiences with Covid, when that is just one of many viruses. I am a lot better now, no headache, and fatigue much reduced, and planning to start some exercise again today. What a horrible and worrying two months, though.

Good luck for a speedy improvement!

ps: I am on 10 mgs. (I am normally on 8 mgs, but I went up to 12 mgs for about 6 days to see if that would help. Maybe it did. I will be creeping down to 8 again in a week or 2).

[Den73 in reply to Predderman2020]

Thank you Predderman2020 my word your experience is so similar to my experience! My head still feels so strange have had this headache shakey feeling for about 4 weeks now I even did a covid test yesterday, which was negative, temples are still very tender, a different feeling to a normal headache, really odd.

But because the tests in the hospital proved to be Ok I am less stresed thinking that surely something woukd have shown up. So I am doing he resting bit, do feel slightly better this morning when I am at rest.

Thank you so much for the telling if your experience, I will keep an eye on it all, keep telling myself that it has not got worse if it does then I will follow it up. X

[Viveka]

"I am very light headed just does not feel normal, I am very shaky from the inside , just rely do not feel well.." Sounds like a classic description of being on a high dose of pred. You were on 40mg last year, did you experience something similar? Are you keeping a symptom diary? This can be very helpful for tracing the illness over time. Sounds like it is a good idea to get a second opinion because my understanding is that for GCA they put people on 60mg if there are jaw or eye concerns, and 40 if bloods etc are raised at start of illness or in a major flare.

[Den73 in reply to Viveka]

Hi Viveka no not the same symptoms as now, definitely different especially the headache, I am down to 40mg but will drop from next week to slowly get back to whete i was. The symptoms came on while I was on 12.5mg

Dont like being on 60mg headache is still there just keeping an eye on it if it worsens or affects my vision. Paracetamol doesnt seem to help.

But at the moment its not getting worse its just there🤷

Thank you for your comment about a symptom diary will do that! Den x

[Den73 in reply to Viveka]

Hi Viveka no not the same symptoms as now, definitely different especially the headache, I am down to 40mg but will drop from next week to slowly get back to whete i was. The symptoms came on while I was on 12.5mg

Dont like being on 60mg headache is still there just keeping an eye on it if it worsens or affects my vision. Paracetamol doesnt seem to help.

But at the moment its not getting worse its just there🤷

Thank you for your comment about a symptom diary will do that! Den x

[Zappata in reply to Den73]

I know it sounds weird but high doses of pred actually gave me a headache

[Den73 in reply to Zappata]

Oh yes pred definitely has its unpleasant side effects, but sadly as the doc said its your best friend and your worse friend! But the only treatment for GCA to decrease the inflammation is pred..but as soon as it calms down I will decrease...my aim is to get to 5mg but slowly...and I was doing so well...from 60mg to 12.5mg and then a flare

But we all all suffer these ups and downs and so very encouraging that we have each other to bounce off each other, as it were, such an encouragement so calming when someone comes back with a reply, so thank you. Den x

[Camelian in reply to Den73]

Hi den73. I started to suffer daily headaches when I got down to 6.5ng , starting dose was 15mg for PMR. I've queried GCA since starting with PMR as all the way through I've had intermittent all over headaches- felt in temple area as well, ear aches, tender scalp and sensitive teeth., but when I got down to 6.5mg the symptoms increased in severity and were daily, the headaches never stopped at all but paracetamol did help if took 4 hourly. I've seen a rheumatologist, neurologist, ent specialist and endocrinologist and had a pet CT scan and the general consensus is it's not GCA but no one can tell me what's going on. I went back up to 10mg and that settled everything down, 3 weeks later i dropped to 9.5mg which is where I'm at now, I did have a return of symptoms with the drop but it settled after a couple of weeks. I have TMJ , apparently, so this is said to be the cause of some of the symptoms but tbh I don't think it is. I personally think if it's not not GCA 🤞 then maybe it's steroids withdrawal or adrenal insufficiency, which I was told I had after having the test but I was on 7mg at the time they tested me so 🤷

I'm currently waiting to see the rheumatologist, to discuss the plan with regards reducing pred, the endocrinologist doesn't want to start a reduction until the symptoms I'm experiencing are investigated further. As for the symptoms your getting I got a lot of them symptoms when I was on 15mg - and it actually gave me headache's tbh I felt awful and much better as I reduced. It's so hard to figure out what's what's with regards symptoms 🤦

I do hope you start to feel better soon. Take care.

[Den73 in reply to Camelian]

Hi Camelian tgat was very interesting reading!I know the advice is reducing pred very slowly which I was doing, but your symptoms sound suspiciously like mine and I too am worried about GCA if it is, as I sit here now my temples still very tender, scalp as well. Must admit I have not been taking paracetamols every 4 hrs, will try that.

Due to see a new rheumatologist during October for a new plan forward....think i will go back to the reduction plan and slowly get to where I was and duscuss with him when I see him, but certainly will ask the questions about withdrawal, because its just in these past few weeks that the headaches have started.

Thanks for the advice Den x

[Camelian in reply to Den73]

Hi Den73I'm hoping to get an appointment with rheumatology soon so I will let you know the outcome. As I said paracetamol did help me but obviously I only took them during the day 4-6 hourly to stay within the recommended dose :-tbh i didn't have the headache during the night and didn't wake with a headache it came on gradually throughout the morning so more often than not i didn't take paracetamol till 12pm or later so only had to take them twice through the whole day which I was happy with as I'm not keen on taking medication. Once I increased my pred dose to 10mg the headache stopped altogether and only came back when I reduced to 9.5mg but as I said it didn't last and subsided after a couple of weeks so I'm planning to go down to 9mg in a week or two so I'll see how I go on with that. There is a lot of information in frequently asked questions about the symptoms associated with steroids withdrawal and Adrenal insufficiency so it might be worth you having a read. Good luck and I hope you get some answers from your rheumatologist and a plan moving forward. Take care

[Den73 in reply to Camelian]

Thank you, yes I dont seem to have it at night but wake up with one.Today I have only taken 2 paracetamols but need 2 now, the headache now seems to moving away from the temples so maybr ut is a virus or something?

This is the problem though its a guesding game too my GP is very supportive I may just contact him after the weekend if its still like this because my appointment with the rheumy is only in October.

Nuy I would be very inyrtrsted to hear what your rheumatologist says so thank you for offering to share. Den x

[Camelian in reply to Den73]

No worries at all. My GP is good too in fact she's been a lot more help than the rheumatologist. Mine is not a virus I get it with every drop in pred dose but it usually settles after a couple of weeks but as I've lower in dose the longer it take to go and when I dropped to 6.5mg the headache was permanent. My GP sent me for a neck scan as part of the elimination process but nothing major was identified. Hopefully eventually we'll get to the bottom of it 🤞and hopefully sooner rather than later because I really want to get off prednisolone as soon as possible my last dexa scan showed osteopenia 🤦

[Den73 in reply to Camelian]

Oh yes for sure I want to get off if I can as well, I had a dexa scan a month ago after I had a compound fracture in the 7th vertebrae in my spine.....so so painful, I didnt even fall, suspected just turning over in bed! I have been diagnosed with osteoporosis going to have the injection every 6 months starting next month...never seems to stop. But grateful to my GP for instigating the dexa scan so at least I know the issue.

So yes wishing us both well on this rocky road🫣 take care. Den xx

[Camelian in reply to Den73]

Hi Den73Hope you don't mind me asking but Just for clarity were you originally diagnosed with GCA ? Your previous posts indicate you were but this post suggests the tests at Horton indicate it's not GCA? Did you mean Horton don't think your current symptoms are a flare of GCA or they don't think it ever was GCA?

Many thanks

[Den73 in reply to Camelian]

No I dont mind the question

Yes initially when I was diagnosed with polymyalgia in July 2023 the bank holiday in August 23 GCA was diagnosed and I was put on 60mg prednisolone, havent had a flare.

Think I worded my description re the doctors comments about GCA .at Horton...on this occasion it was not a flare up of GCA not that it had not been diagnosed. I had a scan back in August 23 which showed 'activity' but the rheumatologist is not one to discuss much but my records show its a diagnosed condition.

If tgatcall makes sense?

Den xx

[Camelian in reply to Den73]

Thanks, that makes sense now.I haven't been diagnosed with GCA I have questioned my symptoms throughout as like I said I've had intermittent headaches, scalp pain,ear ache and face pain and sensitive teeth but none of the professionals I've seen think my symptoms are GCA related. When I was first diagnosed headache wasn't a feature it was pain in my bottom, thighs, neck arms and shoulders. I was put on 15mg prednisolone and I was pain free within 24 hours ISH. I've always suffered with headaches though Migrain and tension headaches and I've suffered from sinus issues as well. When I first started on 15mg predesalone I felt like my head was going to explode and I had a G,force type feeling in my face theses symptoms reduced as I reduced the dose. The symptoms I described in my original reply have been present throughout this journey but intermittently and at varying degrees but when I got down to 6.5mg the symptoms increased in severity and was more often -the headache was continuous so obviously my concern was GCA.

I've never had jaw pain when I eat but my jaw ached at times but this was often when not eating and sometimes chewing gum would relieve the ache. So as you can see there's been no rhyme or reason to the symptoms. Thanks again for your reply. I really hope you start feeling better soon and let's hope we both get some answers when we see the rheumatologist, but I won't hold my breath.

Take care.💐

[Den73 in reply to Camelian]

At times its all quite scary because we just dont know for sure.The matter is made worse when we have a tight lipped rheumatologist who seems to think we dont really need to know answers to our questions to a disease that is very new and sometimes frightening to us, mine kept on telling me how I need to be aware that blindness is a very real possibility with GCA but then he himself didnt seem too concerned about symptoms I was having, thats why this site we all share is invaluable to me! So many times I have been put at ease over concerns., without all this very educated advice I would have really been lost.

So good to speak to people who have the experience through actual happenings to them.

Thats why I am really hoping I come right with the new rheumatologist.

Because i refused Methatrexate, as I suffered toxicity to it, he bullied me into taking it one more time , against pharmacist advice and GP's, I was so sick even on half the dose, so refused to take it again and asked for something else instead, he was not open to discussion at all , so at the next visit, which was just before the headaches started , he ended it by saying well I wont see you for 6 months and we will have a telephone call around January.

No mention of something else as treatment, even although I was having lots if symptoms of Sjorgens, even in his follow up letter, no mention of toxicity to Methatrexate or a possible alternative, so I have had no one to turn to now through this worrying time in the past 3 weeks except this lovely trusted site.

I had a very good night last night, my head is feeling so much better., so now I wait to see if the new rheumy will accept me.

Take care and hope we bith enjoy a measure of being a bit more settled in the coming weeks. Den x

[PMRpro Ambassador in reply to Camelian]

"my last dexa scan showed osteopenia"

So did mine after about a month of pred - it changed hardly any in the next 11 years I was on pred! It depends WHERE on the osteopenia range you are. At our age almost everyone will be told they have osteopenia - it is a comparison with the average bone density of a 30 year old which is when our bone density is highest and not a pathological state. You can be almost normal levels or you might be almost osteoporosis levels and there is a VERY wide range in between!

[Camelian in reply to PMRpro]

Yes that is my understanding. I can't remember my numbers but the the GP gave me the impression they were significant? My last dexa scan 18 months prior was fine.

[PMRpro Ambassador in reply to Camelian]

Find out what they are. Always useful to have your own facts to hand. And when you know - contact the ROS helpline for advice.

theros.org.uk/

There are several options - not just AA.

[Camelian in reply to PMRpro]

I will, thanks. At the moment I'm just trying to eat more calcium rich foods and increasing my exercise to include some weight resistance. I read the post written by Heron who managed to improve her bone health without meds just diet and exercise so I'm hoping to achieve a similar level of success 🤞🤞🤞

[PMRpro Ambassador in reply to Camelian]

There is a point at which that isn't enough - and it is important to know where you are. But dexascans don't tell the whole story - the quality of bone is also important.

[Camelian in reply to PMRpro]

How is the bone quality assessed?

[PMRpro Ambassador in reply to Camelian]

There is no way really as far as I know. Have you read all tangocharlie's posts about bones?

[Camelian]

No but I'll have a look.