Taking two and a half mgs pred, increased by Dr to 20mgs for 5days. Has not helped . How do I go down again ?

[Flutterbies57]

I had other health issues a few days ago. I was in pain all over , but pain in typical PMR zones was different and just like a PMR (big) flare. I had pains in different parts of head for a few weeks . Different areas of teeth aching on different days (dentist says teeth ok ) . A weirdly electrical shock type pain when left temple and a spot on left neck were pressed. A weird frontal headache unlike usual sinus . I was worried about GCA possibility. Hospital Dr put me on 20mgs for 5 days . Unfortunately flare type pain did not go down for a few days . When I was first diagnosed years ago , pred began to work within half a day . I am so confused . Head problems have gradually settled. Dr didn’t think it was GCA. If it isn’t a flare or GCA , can I go straight back down to 3mgs maybe ? I can’t get an appointment for GP for further advice before 5 days are up , and my memory and head have gone into confusion this time.

Some easy online advice please admins ?

[DorsetLady PMRGCAuk volunteer]

As you’ve only been on 20mg for such a short time, you can just drop back down to previous dose or as you suggest just above without a problem. Maybe try 5mg though for now.

But not totally convinced it’s isn’t GCA, so do monitor things. Hope it’s not, but obviously does require further investigation. Please keep us informed.

[Flutterbies57 in reply to DorsetLady]

Will do. Thanks for your reply. 😊

[PMRpro Ambassador]

You just stop the 20mg and take your previous dose. It is exactly the same as a short course for anyone but with a higher baseline.

[Flutterbies57 in reply to PMRpro]

Thankyou so much 😊

[piglette]

If the doctor at the hospital did not think it was GCA what did they think it was? Did they give you any advice when they put you up to 20mg as to how long you should stay on them? I do hope they did not just say ‘here is a box of pills, take 20mg a day, Goodbye’.

[Flutterbies57 in reply to piglette]

Dr gave me no idea at all what else the problem could possibly be. He said I had to see my GP and discuss it with her and decide what next . Of course there is no way I was ever going to get an appointment here before the 5 days of 20mgs came to an end . I am soooooo pleased we have this site to reply upon for advice .

[piglette in reply to Flutterbies57]

That is really appalling, he was giving you powerful drugs, not knowing why he was giving them to you and hoping your GP would sort it out without even ensuring that you could be able to communicate with your GP or am I maligning him?

[DorsetLady PMRGCAuk volunteer in reply to piglette]

I think he was hedging his bets just in case it was GCA…and it was only for 5 days.

[Flutterbies57 in reply to DorsetLady]

Yes , he was not sure , but just in case. I did trust him .

[piglette in reply to Flutterbies57]

Oh sorry, I was maligning him!

[Grammy80]

Have you had recent bloodwork done? I wonder where inflammation markers are? I know it isn't a sure thing....but worth a try. My GCA, and I hope it is not, went undiagnosed for almost a year with some of the same complaints you are voicing. So much better to be safe.💞

[Flutterbies57 in reply to Grammy80]

Oh Grammy80, you had similar symptoms? I havnt had GCA before so not sure what to expect. Head has had unusual events for a few months now . Not major, but tender spots coming and going. Dr did do a blood test , but didn’t mention the results . My markers have never been up previously tho .

How is your GCA going ? Do you still have good site? And what were all your symptoms ?

I hope you are doing ok 🌹

[Grammy80]

Dear Flutterbies57~~The UK and New Zeland seem far better informed and have done much more research than the States. I had symptoms including jaw pain and jaw claudication (couldn't chew) and was told by Dr. after Dr. that I had flu, sinus infection, TMJ etc. for almost a year. Because of the constant misdiagnosis I did suffer some loss but I have ample sight. DorsetLady is truly the Queen on GCA and I've been taking 'full advantage of her' since 2019~!! There are so many supportive and educated folks on here...I would have been lost without them and they guide me still.

You are aware of GCA which gives you a head start. I still trust the advice of the people on the forum more than a few of my doctors. Be vigilant is the best advice. Roam the forum links for symptoms. I still encounter medical personnel in the USA that have never heard of it. You have! Please let us know how you are doing...my best💞

[Flutterbies57 in reply to Grammy80]

Thanks . I will research on here now my head and pain have resettled. I was, I think, anxiety ridden , couldn’t remember things , confused and in pain , so it was quicker to post on here.

We are no different here. Original Dr here didn’t know about PMR , neither did Chemist. My Chiropractor suspected I had it and told them to look into it . That is when I found the Brit med site and have always followed advice on here .

[Grammy80]

I have found this forum is the BEST place to come and just pour out what we are feeling....because they understand what we saying...and give us a direction.💞