Good morning everyone

[Lili18]

I just wanted to tell you how grateful I am to be a part of this forum. God knows it is not easy. But you amazing and wonderful people are what keeps me going every day.

I am sending you my love and wishing you an easy and pleasant rest of the day

[EOLHPC]

Wishing the same back dear lili: am so glad you’re here...so glad we’re ALL here...

🍀❤️🍀❤️🍀 Coco

[eekt]

That's just how I feel too Lili18...cyber group hug XOX

[whisperit]

Hello Lili18

Group hug!

How are you managing with your pred dosing just now?

X

[Lili18 in reply to whisperit]

Hi whisperit,

Thanks for asking. I’ve been reduced to 7.5 mg, which was great. After a few days, i guess i should’ve expected something bad to happen, i developed tinnitus. So i was taken off plaquenil. My doctor said the ringing will stop and prescribed ginkgo biloba and vit b complex. Am still waiting for the ringing to stop. Its been two weeks now. This disease is stealing all the things i love, like the quiet in the morning.

I actually wanted to ask here what your experiences were with tinnitus, but was too scared of the replies. Please tell me it’ll stop.

[whisperit in reply to Lili18]

Yes, I get that, but when I am on higher doses of steroids rather than HCQ. It does go away. You have done well to get your pred dose down. I'm tapering too atm, but have only just managed to reach 8mg this week. Just the tapering itself throws up new issues as your body adjusts to the new dose. There's always something new to worry about, isn't there? And yet we still get described as hypochondriacs. Grrr.....x

[Lili18 in reply to whisperit]

Thanks for your fast reply and for putting me at ease. Yes, there’s always a new thing to worry about. Good luck tapering further, my doc said that the lower the dose the slower it should happen.

Hugs

[Melba1 in reply to Lili18]

Hi Lili, I also get tinnitus with higher steroids but it has always gone away at lower doses. I can ignore it a lot of the time now but at first thought it was some electrical device stuck on (in a house with 3 teenage boys so was likely!) and went round unplugging everything - until it slowly dawned on me the noise was in my head...

You've done well with steroids I'm aiming for 7.5mg as my maintenance dose but only got down to 25mg recently so will be a while. Are you going lower than 7.5mg? I have re-flared every time in the last 2 years somewhere between 7.5 and 12.5 so I suppose it's just a case of all finding our own optimal dose.

x

[Krazykat26]

Hi Lili18

I totally agree with u!!! This forum is informative and supportive for all of us!! It gives me more confidence to talk to doctors as if I have understanding of what's going on in this weird body of mine...which has been fine for the first fifty years..no medical problems whatsoever!! Big hug to u and I hope u have a pleasant day Kat xx