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Been Diagnosed With Temporal Arteritis - Someone Up There Give Me A Break ! : (

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Smowball | 10:54 Sun 21st Apr 2024 | Body & Soul
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Trying to stay cheery and hope I do in most of my comments, but feeling bit down. After weeks and weeks of blinding headaches(and other symptoms) and bloods etc I've now been diagnosed with the above. In one way I'm glad of an answer as the pain was/is excruciating & I couldn't explain it. Have been put straight on steroids for the mo, and need to see doctor again in a few days - each headache is literally leaving me bedbound for 48 hrs at a time. On the plus side it's a distraction from my spine!! ; )



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Smowball, that is such a painful condition . 

There is good news on the horizon however, as  you are being treated (Prednisoline ?) and the general  prognosis is encouraging. There are also other treatments available,  so I wish you all the best getting rid of the pain very soon.

Oh lordy Smow! I can't offer advice...I've never even heard of your condition. But I'll send a big ((((HUG)))) instead. 

Hi Smow. It is indeed excruciating but Clementino is spot on. I have had it and was treated very successfully - it took a while mind you. Prednisolone + painkillers sorted me out. I had a huge daily dose of Pred (equivalent to those patients who say are trying to avoid rejection of transplanted organs - 60 mg a day) and it took some time to come off them.

I laugh now when I recollect all the side effects I had to deal with! Spasms of the hands was one of the worst and if you had seen me trying to put food in my mouth with a fork you would have been rolling in the aisles :D It took ages to eat and the food had always gone cold before being devoured.
Washing up had its own problems and I became nervous of washing glassware. I should have bought catering packs of plastic cups!

Hopefully you won't have these problems to a great degree. Just so long as the pain goes away - and it will - you will manage fine. xx

My understanding its inflammation of the arteries? Sounds awful. I'm sure the steroids will help temporarily. I hope you can get treatment to sort it out for good. I don't know hiw you stay so cheery, Smow. Bless your heart. I hope you get relief very soon x

Deep sympathy Smow. Wish I/we could do more. At least you now know what you're up against and it's better the devil you know than the devil you don't know.

Sending a hug. Hope things start to improve very quickly for you. 

Let's hope temporal becomes temporary very soon.  Prognosis sounds promising, I wish you all the best for a speedy recovery x

I was diagnosed with temporal arteritis .Had blinding headaches and could hardly see out one eye .Was put on high dose of steroids reduced gradually .Had a biopsy which came back negative .Had been on pregabalin tablets which gave me terrible side effects and a friend who was watching This morning on TV  saw a discussion between 2 woman and a doctor who had same symptoms as me discovered it was the tablets I was on .Had CT scans etc negative .Steroids have just finished and the headaches have gone . Has it been diagnosed that you have temporal arteritis and not medication as it is horrible was never told to reduce Pregabalin gradually as you do in steroids . Couldn't even drink water . 
I sympathise with you. 

Question Author

Sorry for delay guys - have been laying down. Yes am on huge doses of Prednisolone at the monwhich I've been told I may have to take for up to 18 months. Headaches I cannot explain the pain, just that I end up vomiting with them. Jaw also in excruciating pain as tho I have chewed and chewed something for hours, which I didn't even know was part of it until Friday.  What can I can, sometimes you've just got to laugh or else you'd cry....

On the  plus side I've just been watching a bit of the London Marathon and marvelling at how on earth they really do manage to run that distance x

Unsure what to say. You have my sympathy and hopes that the symptoms depart soonest.

Poor you Smow, it does seem to be one thing after another.  I hope you feel better soon.  

Choux I am shocked at your 60mg of Prednisolone a day. I am on 5mg for exacerbation of my COPD.

Question Author

Thanku everyone - ur all so lovely, as always. On a lighter note - hope everyone is having a relaxing day?? Anything exciting? 

In order for Prednisone to become effective the amount of steroid normally circulating in the blood needs to be increased rapidly and then, after treatment, to be decreased slowly so that the body can return to its normal self production. 
You might find you become angry quickly and gain some weight on the high dose. This will return to normal when you start lowering the dose. 
Wishing you a speedy resolution

Question Author

Thanku everyone x

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