WOW!!

[JanboC]

Just realised, after dropping from 15mg to 14.5mg two days ago, that my pulsile tinnitus has gone. My eyelashes are going straight again and my eyebrows aren't wiry anymore! Things are looking up!!! GCA diagnosed April 2018. Feeling good good good! Just hoping that I'm not being too optimistic, lol.

[scats]

Always best to say these things with fingers crossed! Nice to hear something positive, good luck to you.

[JanboC in reply to scats]

Thanks Scats, it's been a real rolled coaster ride, but I actually feel better than I have done for ages.

[scats in reply to JanboC]

I'm so glad. I have never had more than 15 gm pred I can't imagine how the high doses needed for GCA must make you feel.

[JanboC in reply to scats]

Oh, I was manic sometimes, then sad and depressed, tired, lethargic, and bloody nasty. I really hope I am getting better at last.

[DorsetLady PMRGCAuk volunteer]

👍...🤞!

[JanboC in reply to DorsetLady]

Thanks Dorset lady.

[Blearyeyed]

Nice to hear that things are getting better and you are feeling good.

Fingers crossed that it continues

[JanboC]

Thanks, hope so.

[Hidden]

Great News, always good to get a bit of a boost! x

[JanboC]

Thanks Angela

[Hidden in reply to JanboC]

When my eyebrows grew back after Chemo they grew out straight & what a struggle l had trying to tame them but once they got a bit more length they started to grow back correctly.

[JanboC in reply to Hidden]

My eyebrows

had just grown very hard and wiry, my eyelashes all turned inwards . I bought clear mascara to try and tame them but it didn't work!! But they seem to be looking straighter now.

[Hidden in reply to JanboC]

I bought the Benefit ‘Give Me Brows’ & still use it all the time to keep them in shape. 😌

[Yellowbluebell in reply to Hidden]

Doesnt hair in general change after chemo. A friend had straight hair before her chemo but its come back curly.

[Hidden in reply to Yellowbluebell]

Often but then it can return to it ‘normal’ my eyelashes were the first thing to grow back, was l pleased to see them! xx

[Yellowbluebell in reply to Hidden]

I bet!!xx

[PMRpro Ambassador in reply to Yellowbluebell]

OH didn't give it a chance to find out - he'd had a No 1 cut as it was about to all fall out and didn't like the feel when it grew again. No 1 cut for the last 25 years!

[JanboC]

Absolutely, I know exactly where you are coming from.

[Yellowbluebell]

I want that nights sleep please. That would be my celebratory point.x

[Yellowbluebell]

Its amazing the little things people really appreciate after fighting for so long. Well done and good luckxx

[SheffieldJane]

Glad you are happy!! Wonderful that the pulsing ( auto correct again) pulsile tinnitus has gone. I had that awful buzzing pulse in my ears on the higher doses. Gone now.

I think my Pred curls are dropping which is sad. I enjoyed having wavy hair.

How sweet to say that Sue, but let’s not get carried away. 😂

[Suet3942 in reply to SheffieldJane]

I really admired your hair when we met last year Jane, x

[Yellowbluebell]

I only started on 15mg and as soon as i started i havnt slept more than 4 hours a night other than half a dozen times when my body has bsdicslly shut down i think!! Sketp tightx

[Whitner in reply to Yellowbluebell]

I can’t imagine how you must feel Yellow bluebell with such a little sleep. Taking calcium in the evening has helped me sleep. Hope sleep will happen for you soon!

[Yellowbluebell in reply to Whitner]

Thanks. My gp has been great trying stuff to help but so far my body is being stubborn. Nightxx

[Joanbill13 in reply to Yellowbluebell]

Me too. Writing st 2.30am

[Gotthecall_123]

Hi my name is Dave ive had Tinnitus for close to 6 years it started when i was on dialyse and had to do new drugs for Hep c now i habe no medical proof this any how how long did you have it ? Was it 24/7 how bad was it ? I still have it but ive learnt to manage it thank you

[JanboC in reply to Gotthecall_123]

I got it within days of starting pred in April 2018. It was really bad, and very annoying but I learnt to cope with it. it was 24/7. I just hope it never comes back.

[Gotthecall_123 in reply to JanboC]

Well in my case prednisone was not the culprit you said you learnt how to manage it what did you do? Ive also learnt to manage it somewhat but its allways there

[JanboC in reply to Gotthecall_123]

I didn't "manage" it, I just coped by trying to ignore it and having a few beers every night to help me sleep lol.

[Gotthecall_123 in reply to JanboC]

I dont drink but i used cannabis to help distract me 😂😂😂

[Gotthecall_123 in reply to JanboC]

Hey JanboC how you doing these days😝

[stiff19]

So pleased for you let’s hope this remains, 👍🙌🏻

[scrambledegg]

You have given me such a positive start to my day reading this. Congrats. and long may it continue😊😊

[LemonZest11]

Great to hear ... gives us all hope! Xx

[Hidden]

Late to the party but great news. It must be a brain gnawing problem. 🎉👍🌻

[Gotthecall_123]

Amen to that your wright about we end up considering normal compared to the norm😬😬

[Jackoh]

Really good news- long may it continue!

[Mikb]

I’m at 4 mgs and still have it. Argh,

[GerriMc]

Wow indeed, good for you! I’m down to 2mg and apart from loosing weight, all the other side effects are still there. Eyebrows, sideburns, hamster cheeks... my buffalo hump is a bit smaller thought! 😁

[cool4bob]

JanboC, good to hear that my 7 week constant tinnitus may go back to occasional irritation on reducing my pred.

[JanboC in reply to cool4bob]

Hope so, I am convinced mine was pred induced!

[Rimmy]

I had tinnitus at higher doses as well and thought tapering would improve it - but it didn't for me - then I found out my ears were very waxy and had them syringed. That worked and the volume on everything suddenly turned up - great !! But I have found it returns about annually since I got the GCA dx as well and I sometimes wonder if there is a relationship as this was never a problem in my pre-PMR/GCA days. But I hope you continue to improve whatever the reason.

[JanboC in reply to Rimmy]

Thanks, Rimmy. It's lovely not to hear the pulsating constantly. I am convinced it was pred induced, so hopefully won't come back!

[PMRpro Ambassador in reply to Rimmy]

I certainly had a lot of wax and related problems in the early days of PMR - which improved no end on pred but do seem to reappear briefly during a flare.

[Hidden]

It’s good when the eyebrows & eyelashes start to behave again!