Super Doc

[Rosbud]

Well had my check in call with ser doc this afternoon and he’s asked me to reduce my Pred from 30mg to 25 as I have no jaw pain and no headache, he’s told me if I have any pain etc to go straight back to 30 and he will call me again next week, I did tell him I was concerned at only being on 30mg for 2 weeks want enough to counteract all the inflammation it he’s asked me to try , any advice would be appreciated at this time, thank you all for being A listening ear xx

[DorsetLady PMRGCAuk volunteer]

From personal experience I reduced monthly even at high doses. Many suggested tapers do say every 2 weeks, but I always think that’s a bit risky - it can take that long for a flare to materialise in some people.

You could try 2.5mg first week and see how you feel - if okay then same again next week - but obviously if a problem at any time contact GP.

[Rosbud in reply to DorsetLady]

Thank you , I’ll try this , when it was just PMR , I was using dsns to reduce , so will follow your advice x

[Hidden in reply to Rosbud]

Hi there, hope you're feeling ok. Did you actually have GCA.? Wondering what percentage of people get gca on the forum...supposed to be one in five people, seems higher than that to me

[Rosbud in reply to Hidden]

Hi , I’m feeling ok thanks, slept for 10 hours last night, unbelievable for me , my GP is sure I’ve got GCA and as the steroids have r seem to be working I think he’s right, I’m not sure of the figures but as you say it would be interesting if someone did A proper project on the subject, I hope you are keeping as well as possible, virtual hugs x

[Hidden in reply to Rosbud]

Hi again, I've been suffering jaw ache for some time now. A bit painful when I open my mouth wide. Also when I bite down on top back left tooth it's painful. Not sure whether I could be clenching my teeth during my sleep that's causing the discomfort. I 'phoned my dentist yesterday, to have a mouth guard made would cost £200. £25 in Boots ! It's weird as if GCA was suspected the NHS just don't seem to move themselves in doing anything about it. I spent from 10:30 am till 7:30 pm at the hospital last week. Had I had it I'd have been in trouble. Registrar seemed to think I didn't. However, I have made an appt (privately yet again) to see rheumatologist next Friday. Wont be worth anyone getting themselves to any hospital with any complaint with the virus taking over now for the foreseeable future too.

Stay safe and well

Anne

[Rosbud in reply to Hidden]

So sorry you can't get an answer , fingers crossed Friday will bring A solution x

[PMRpro Ambassador in reply to Hidden]

Have you seen the dentist about the sore tooth? I had that experience and it was a bit of inflamed gum - a couple of excavations by the hygienist sorted it out.

[Hidden in reply to Hidden]

Once you have had the tooth fully checked then if you have enough money I highly recommend a custom guard. I used boots ones and other bruxism guards and did the whole boiling water fitting. I thought they were OK until the dental hospital made one for me. I get it free as part of being there and students working on me as I couldn't get NHS dentist. The difference is absolutely amazing. The custom made one is an exact copy of my lower teeth. It clicks into place and doesn't move. In fact it's a bugger to get out if my hands hurt! But I have noticed my teeth feel more stable. I haven't bitten through this one... Yet...about 18mths I think. And you can barely tell I have it in. The ones I bought from shops and online fitted like rugby players guards. Long term I don't know how long they last.or whether buying a couple might be cheaper once the impressions are taken. Believe me my teeth don't walk about any more!

[Hidden in reply to Hidden]

Thanks for that. I'll probably cough up the £150 that he actually said he'd do it for me for, instead of £200. Ya get what ya pay for I guess. I feel I have jaw tension. I've been massaging my top and bottom jaw. why do all these different things happen to us as we age. Life goes a long quite nicely then bang. I thought 2020 would be a good year and now the bloody Virus is here to scare us all witless. Not that I live in Germany but it's just been told that they have 700 cases and now more in the UK. I think it's peaked in China where it started through the way they eat weird animals particularly bats !!

[Hidden in reply to Hidden]

I hope its as good as it has been for me. If there are any pokey bits the hygienists adjusted mine. 😁

[Hidden in reply to Hidden]

Poopadoopy. I've messaged you to speak about the teeth guard privately

[Hidden in reply to Hidden]

OK. It hasn't arrived yet but will respond when it does.

[PMRpro Ambassador in reply to Hidden]

It is also possible that Germany and not Italy was the source of the European wave. But I see no point in being scared witless by something that kills similar numbers to what the Asian flu did back in 1969. Even if I am in a risk group - and my husband even more so. You don't catch it by passing someone in the street - even Covid takes a bit more effort than that.

[PMRpro Ambassador in reply to Hidden]

I doubt it - we have 3,000 active members at present - I'm assuming your 1 in 5 figure is restricted to PMR and GCA patients? I haven't "met" 1500 GCA patients.

[Luciejc in reply to PMRpro]

I'm in this forum and have GCA. So far, no signs of PMR!