Arthritis

[Breavheart]

does any one have Giant Cell arthritis. I am very poorly at the moment. I’m having test for it. I’ve been to my local hospital a few days now I’ve got to have a brain scan and maxillofacial appointment. Thanks

[Oshgosh]

it’s awful when stuff like this happens.I hope things improve for you.

[DorsetLady]

Actually it’s Giant Cell Arteritis (not arthritis) - and there is a forum dealing with it - PMRGCAuk-plenty of info there…. And you get loads of answers.

healthunlocked.com/search/c...

This is charity site -

pmrgca.org.uk/information-a...

I had it - now been in remission for 8 years.

What symptoms do you have?

[Lizard28]

I had to have a biopsy done on my temporal artery and had to take steriods for the best part of a year. It was during the night when it hit me and at the time I was stupid and did not go to A & E. I went to my doctor the next day who thought it was flu but did a blood test anyway. I told her I would not come it was just flu and said something is not right in my head, I couldn’t touch my head, even lying on a pillow was painful. The drenching night sweat was something I’ve never experienced before and even a shower was like needles going through my head. My ESR was through the roof and she sent me urgently to see a rheumatologist. At least you are in hospital and will get the tests done quickly and be on steriods. Best wishes

[Breavheart in reply to Lizard28]

i’m not in hospital I had to go there two days running to the daycare centre for all the tests because my doctor took a blood test and instead of it’s been around 10 mine was 27 so he rang me at home and said leave what you’re doing and go straight to this unit the bypass is the A&E and I had attend that for two days while they did some test but what your description is is exactly the same as mine I hate water touching my body. I can’t use my voice and I can’t open my mouth much. I’m waiting a brain scan and this , operation that you had on the artery in the head, did you find anything to ease it? I’m just taking ibetween 6 to 8 paracetamol a day because I can’t take anti-inflammatories as I have had brain operations thank you so much for replying. It’s made me realise there are a lot of people in the same position. We just think when it happens to us that we’re on our own did it cure yours or are you in a kind of remission?xx

[DorsetLady in reply to Breavheart]

The only thing that will ease GCA pains if that’s what they are is steroids…paracetamol will not touch it. Plus if GCA is suspected it sound be treated as an emergency as suggested by your initial doctor ..

[Lizard28 in reply to Breavheart]

I was put on steroids urgently, that is the only thing that helps get the inflammation down, my Esr was over 100, can’t remember the exact number but it was enough to send alarm bells to my GP, after her telling me it was prob just flu, think she panicked when bloods came back. I had 3 missed calls when I checked my phone, I had to get steriods immediately. I was on them for 3 weeks before the biopsy was done. I had never heard of GCA before so didn’t realise the urgency of it. I didn’t take any other medication, only the steriods which I hate but it was either that or I could go blind said the consultant. I really didn’t have a choice.

[Breavheart in reply to Lizard28]

No neither had I that was how it worked with my doctor. He took a blood sample on the Monday and on the Tuesday afternoon I had five missed calls because I was talking to my neighbour and he said drop everything at once and go over to sdec bypass the A&E and they’ll be waiting for you by sat there for six hours and all they did was take my blood and they said come back tomorrow morning because the test we want to do the people have gone home. I didn’t get home until 9 o’clock that night and I only live 12 miles away from the hospital when I went there the following morning at 9:30 they did the test eyes ear and throat as to what they could do and I had to wait again until 4 o’clock in the afternoon just sitting waiting in the end she said she didn’t think it was that , but all my symptoms say that it could be all the other arthritis and I can’t remember what that one is i’m just trying to save all my energy. I’m just eating soup and soft foods the bit that I can eat.xxx

[Broseley]

You shouldn't have to wait any longer. They should give you an emergency high dose of steroids - prednisalone - for at least a few days. It should wipe out your symptoms completely. If it works, it's GCA. You'll then be referred to a rheumatologist and given a tapering programme for the steroids with regular blood tests and appointments to check your progress.

If you haven't yet been offered this, go to A&E as its a medical emergency.

[Breavheart in reply to Broseley]

I know I’m very confused. I went to the emergency for two days running to a small room called sdec it bypasses a and E they did my blood test they did my ENT and at the end of the two days the doctor was in charge said she wasn’t convinced it was that so I’ve been booked with other appointments but they won’t give me the steroids until they said conclusively it’s that I’m 76 and I guess I’m not a emergency case for them if you know what I mean they said my eyes were good I have received an advisory appointment this morning to attend an oral surgery service, but when the appointment will be they don’t know. in Herefordshire, they’re pretty slow my next appointment with a doctor is August 8th thank you for replying xxx

[Broseley in reply to Breavheart]

OMG that's not good enough. I was diagnosed over the phone during covid. As soon as I said I had the headache (for 3 weeks), scalp tenderness and jaw stiffness the GP sent me to the Urgent Assessment Centre at our local hospital in Wirral where they gave me 60mg prednisalone as a precaution. I spent the whole day having tests and I was prescribed 40mg prednisalone because my eyes were OK. I had a biopsy a few days later which was negative but I'm still diagnosed with GCA. My ESR and CRP were in the 90s.

You really must push this before your eyes are affected. Don't wait until 8th August! All your symptoms point to GCA. But I'm no expert. Try posting on the PMRGCA forum on Health Unlocked where you'll find more help, or go on their website pmrgca.org.uk/

[Breavheart in reply to Broseley]

Thank you. I rang the doctor again this week and they said they’re going to push forward my MRI scan. I think the problem is with my brain operations. They’ve gotta be sure what they’re doing or giving me. I’ve no idea really I’m just keeping myself quiet and trying not to get over emotionally if you know what I mean This morning was the first day in about a month and this has been going on a month if not more I was able to open my mouth a little bit again thank you for replying. It makes me realise that in the Midlands we are desperate for doctors and appointments I know up in Cheshire yours is really good because my friend lives in NorthwichXx

[Broseley in reply to Breavheart]

I think it varies. I tried 4 days on the trot to get a Drs appointment but by the time I got to the head of the telephone queue they were booked up. I've given up.

[Breavheart in reply to Broseley]

I know it’s a big problem for a lot of people I see they’ve done a big report today on hospitals and care homes and it’s very damaging whether they’ll be able to improve things in the future. I don’t know thank you x

[Lizard28 in reply to Broseley]

I was also negative with my biopsy but they did say that could happen if they didn’t take the correct bit of artery but I would still have to be treated for GCA, it took months before my ESR started going down. After starting steriods my face also started swelling up and going red at the side of the temporal artery which worried me. After calling 111 they told me to go back to the hospital, they were going to give more intravenous steriods. They said it was definitely vascular. It’s a worrying illness but touch wood I’ve not had it since.

[Breavheart in reply to Lizard28]

That sounds really horrible but I did read that it could disappear. There was a woman on Channel 4 news. She was 50 something and she had GCA and the other arthritis but she said if they’ve treated her sooner with the steroids she would’ve been better quickly. It took her about two years, but she hasn’t had any relapse as yet, so it’s possible, if they start you off with the right amount of treatment to start with I just wish they would’ve given me some. I know I’m a funny person to treat as I said but they could’ve tried something even if it was just two weeks prescription instead of just leaving me in pain every day , anyway I can’t do anything till Monday and the doctor said to me if I feel worse ring 111 but I’m really trying to calm my pressures down you know within my head and rest more and not speak so much over the phone and the pain in my ears are subsiding a little bit xx

[Lizard28 in reply to Breavheart]

I really hope they treat you soon, your GP should have started you on steriods, you can always come back off them quickly if they decide it’s not. But better to be safe than sorry. Take care x

[Broseley]

I would read up all you can about GCA. Go fully armed to your GP and explain how urgent it is. Not all GPs know much about it.

[Breavheart in reply to Broseley]

that’s the thing he did and I was really surprised. He just told me to leave everything and go to this hospital ward because I might lose my sight is only a young doctor and I thought he acted so quickly that I was very impressed with him. He knew what he was talking about. I’ve read as much as I can read off the Internet. I’m pretty good at all the sites you know and looking up things because of my past history that’s why I came onto this site to see if any of you had it or heard about it because like I said it was a mystery to me and although I’ve got arthritis of the spine, I’ve had that for years. , as I’ve had two brain operations and several lumber punctures. I am very grateful for everybody that replied the symptoms fit exactly today was my first day I felt like smiling thank you all very much

[DorsetLady in reply to Breavheart]

As I said yesterday, and Broseley has said again today you need to be on the PMRGCAuk forum - I gave you a link. Almost everyone on there would say you need steroids if there is any possibility of GCA.. and if it’s not, they can be tapered off quite quickly. I appreciate you have other health issues, so the last thing you need is to add sight loss to that.. I have lost sight in right eye because GCA wasn’t - and I wouldn’t want you to suffer same, or worse still, total sight loss… and believe me it can happen very quickly.

[Breavheart in reply to DorsetLady]

Thank you I had a very bad night last night probably about three hours sleep. I was contemplating ringing 111. I couldn’t find anywhere to put my head wasn’t in any pain. I must’ve had about four trips for peers to the bathroom all very long ones I will try today could you send me the link again, please? Sorry, I had a few letters and I must’ve missed the link xxx

[DorsetLady in reply to Breavheart]

This is link to PMRGCAuk forum -

healthunlocked.com/search/c...

.. and would say you need to ring 111 at least -or if things get worse 999

This is link to charity’s website -

pmrgca.org.uk/information-a...

[Breavheart in reply to DorsetLady]

Thanks I have logged on to the link very interesting x

[PMRpro in reply to Breavheart]

I'm here to lend my voice to DorsetLady's comments. You need to speak to a doctor - even if that means using 111 or 999. This is urgent because if it IS GCA, then you are at risk of losing your sight. None of us can help you any further than advising you - YOU must take the next step.

[Breavheart in reply to PMRpro]

Yes I have had the sight test on the 15 the hospital says it’s ok I have had the ENT tests also. I definitely will ring 111 I looked at the online doctors blood test the one test was 39 instead of it being 0-5 but the hospital said they were not convinced that it was GCA thank you all for your advice I know what to do now I have read loads about it. I have just read where all the support groups are and I will check my nearest which is 40 miles away thank you x

[DorsetLady in reply to Breavheart]

Well I think hospital need to reconsider - and I doubt your local group will tell you anything different from what we are saying..

[Breavheart in reply to DorsetLady]

Yes I am sure it’s links for the future, you have all been very helpful helping me to understand the condition that I have not heard of until 12 days ago it’s a lot to take in, now I am more knowledgeable , I will use it .

[PMRpro in reply to Breavheart]

They may not be convinced it is GCA - but they need to bear in mind that the ultimate worst scenario in GCA is total and irreversible loss of sight so you maybe use steroids just in case, not dismiss the problem. High dose steroids have nothing in the way of adverse effects on that.

[Betty909090]

Careful!

Arthritis ≠ Arteritis!👆

Different terms, different medical conditions!

Here’s a useful link:

mayoclinic.org/diseases-con...