4th vaccine

[Rottsuzi]

Hi all , I got my 4th vaccine on Monday afternoon and ended up in hospital Tuesday night massive headache violently sick and once again pain more on right side of my head but comes from the neck so they kept me in and gave me 50mg of preds co codomal done bloods which said inflammation was slightly high at 23 but I’m convinced I have giant cell but they are sure I haven’t because they said my markers would be a lot higher .

I have had jaw pain for months and finally have a ct scan in two weeks , it very frustrating I asked them before they gave me the 50mg if they would do a biopsy as I was down to 5mg and they said no because my markers would be a lot higher I’m going in circles honestly.

you will laugh at this one I took a terrible pain in my right foot so they thought it was gout so gave me meds for gout then my rheumatologist nurse sent me for a X-ray they said it was a fractured toe and then got sent to podiatrist at the hospital who said I have neither that it’s inflammation in the joint so now a ultrasound and injection in the foot it’s a bloody joke 🤦‍♀️

so my question is the 50mg was just a one time and dropped right back down to my 5 and I feel totally wiped out and a bit shaky is that quite normal?

So for the rant this morning and thank god I have all of you who totally understand what we go through xx

[Seacat30]

Oh lord! I have no helpful advice to offer but that all sounds extremely distressing ... and monstrously confusing!

[PMRpro Ambassador]

No, you can have GCA with normal markers - up to 1 in 5 have them and anyway the increase in markers can lag weeks behind the inflammation.

Now call me stupid - but exactly what did the podiatrist mean saying it wasn't gout but inflammation in the joint? Gout IS inflammation in the joint. Whether it is gout or psuedogout depends on which crystals have formed to cause the inflammation - but inflammation it is, it is an inflammatory arthritis.

cdc.gov/arthritis/basics/go....

You've had a vaccination and a one-off dose of 50mg - that's all enough to make you feel pretty shaky when on just 5mg pred, your adrenal function will be a bit wobbly. Give it a day or two - and see what happens with the ?GCA.

What is the jaw pain like? When does it happen?

[Rottsuzi in reply to PMRpro]

Hi , is that why he’s doing a ultrasound on the foot 🤷‍♀️ I’ve never had gout but I’ve have never had such pain it was horrific .

When I drop the preds to 5mg the jaw is very stiff and sore and tired when chewing I couldn’t possibly eat hard chews also pain in the ear on 50mg took it all away but not surprised they think it’s TMJ so see if the ct says anything .

I’m thinking of going to a private rheumatologist and maybe getting a second opinion.

Thank you for replying x

[PMRpro Ambassador in reply to Rottsuzi]

Judging by OH when he had a couple of gout attacks - it fits the bill!

Have you tried the chewing gum test?

sydney.edu.au/news-opinion/...

If the pain is only with chewing then that would support the fear of GCA - TMJ is all the time and as far as i know less the aching while chewing that goes when you stop than a sharp stabbing pain. That it went with pred is also a clue. Are they saying it isn;t PURELY because of the lack of high ESR?

What hospital A&E was it? Is there another? What does your GP think/say?

[Rottsuzi in reply to PMRpro]

I hope it’s not gout because you can get it again . I definitely can’t chew gum and it’s not there all the time , yes because they are saying with gca the ESR should be alot higher , my own go actually said he thinks it’s rubbish that I have TMJ he’s convinced I have GCA .

I went to Queen Elizabeth in Glasgow I always feel they just do what they need to and never go above to get to the root problem.

Thanks so much for keeping me right x

[PMRpro Ambassador in reply to Rottsuzi]

It is probably a common complaint at present - and I don't know enough about the Scottish hospitals these days to suggest one whose rheumy department is any better. Have you tried the Scottish helpline to see if they have any suggestions since I know it is really difficult to get around the system in Scotland and they dictate who you see. About the only thing that makes me hesitant about returning to Scotland if I leave here. Lorna Neill might have some ideas to help out what sounds to be an on-the-ball GP.

[Pixix in reply to Rottsuzi]

My husband had gout three times…toe, then knee. He takes a tablet daily, as many do for gout, & will have to do for life, but 15 years have passed & no more gout or trouble with toes or knees! S x

[Sophiestree in reply to Rottsuzi]

I have LVV (like GCA) and my symptoms were mainly down the right side of my face and neck, which I still get but milder. I had severe pain in my head which felt like a vice was trying to crack my skull (also still get it now actually but much milder).I was diagnosed by PET CT but this was before any treatment

[softekcom in reply to PMRpro]

I have GCA with normal markers, though this is yet to be confirmed by a biopsy. (No appointment yet.)

[DorsetLady PMRGCAuk volunteer]

Jaw and ear pain sounds very GCA ish to me ….and might be worth getting a second opinion.

[Rottsuzi in reply to DorsetLady]

Yes that’s what I’m thinking because they are not doing enough I know it a hard diagnosis but still can’t take the chances . Thank you x

[DorsetLady PMRGCAuk volunteer in reply to Rottsuzi]

Do you mean hard to diagnose or hard to deal with…If former, not really if they take notice of all the symptoms and rule out less serious options; as for latter, then yes it’s certainly not easy, but we get through!

[Rottsuzi in reply to DorsetLady]

I feel for me no doctor wants to diagnose GCA and I’ve been having these symptoms for a long time even the headache is different I feel it comes from neck round to front all right side then the doctor said they see you had shingles before I said definitely not shingles it was a horrific headache. Thanks for replying x

[DorsetLady PMRGCAuk volunteer in reply to Rottsuzi]

Maybe they are uncertain by the fact it’s one-sided…..hope you can second opinion, and a correct diagnosis

[Susan1705]

I had a reaction to the 2nd vaccine last June, not as immediate as you. Headaches got worse over 2 weeks and then vision in one eye went blurry so admitted to hospital. I was given 1000mg of methylpred for 3 days and then 60mg for 2 weeks going down 10mg every 2 weeks to 20mg. Now on 9mg. I had PMR before and all bloods normal for both conditions. They diagnosed GCA on the basis that I already have PMR and about 20% with PMR will go onto develop GCA. Hope you get sorted

[Darkchocolate1]

Another thing to consider for jaw pain is Trigeminal Neuralgia. I had an attack of it a few years back and Dr and dentist all thought it was TMJ until it wasn't. I even paid for an appliance to sleep in it was so painful which was NO help at all. It was worst when I chewed and I ended up drinking my meals for a while. After a few weeks, it magically and wonderfully disappeared and so far has not come back. It was a pain that would not be helped with any amount of pain killer pills.