Another disappointment..😥

[GivenUp24]

Thought I was on the right track, besides rapid hair loss. I was at 12.5 with a CRP of 2, reduced to 10. Now my CRP is 31.3 second highest reading since starting this nightmare 3 years ago!

[PMRpro Ambassador]

Is this the repeated pattern? Have you tried tapering in smaller steps?

[GivenUp24 in reply to PMRpro]

I could never get below 20 before without symptoms returning. I tried 3 times. Now I feel pretty darn good at 10. My moon face is down. No pain, less weak?? 🤷‍♀️

[PMRpro Ambassador in reply to GivenUp24]

Sounds as if you may be one of the people where the bioavailability of pred is only 50% - noone would turn a hair if you hadn't been able to get under 10mg for years would they?

[GivenUp24 in reply to PMRpro]

Not sure what that means… lol

[PMRpro Ambassador in reply to GivenUp24]

That you only get half the benefit of the dose you are at - either you don't absorb it all or you have fewer receptors - the bits on the surface of the cell that pred has to attach to to be able to have an effect. The bioavailability can vary from 50 to 90% - the lower it is, the more pred you tend to need to get an effect.

[Rotsky in reply to PMRpro]

Learned something new, thank you.

[sidra1968 in reply to GivenUp24]

How did you get there? I haven't gotten below 13 mg (late last summer), now at 17 mg after having to go to 23 mg and then 20 mg months ago during flares. I will say my last ESR a month ago was the lowest it's ever been since this started - at 15 now. Was as high as 33 and held in the low 30s and high 20s for a long time, even on high dosages of Pred..

and my moon face is terrible!!

[GivenUp24 in reply to sidra1968]

My ESR has always been normal, I don’t know what my body is doing. I just haven’t had any returning symptoms so far this reduction.

[Nextoneplease]

Hello GivenUp 😊

Are you in pain as well as your CRP having gone up? I’m just wondering whether the CRP rise could be caused by something else, eg an infection? Also have you tried reducing in smaller steps? There’s no way I could have reduced by 2.5 once below 15mg.

Hugs x

[GivenUp24 in reply to Nextoneplease]

No pain….

[piglette]

How do you feel? Your symptoms are more important than the inflammation readings. I occasionally had horrendously high readings, but felt fine.

[GivenUp24 in reply to piglette]

I feel better on the lower dose, I have more energy and less weakness. Just don’t want GCA to be a problem! 🫤

[piglette in reply to GivenUp24]

You are aware of GCA so you will know the symptoms if they occur. It is people who do not know about it who tend to not get the right treatment or no treatment even.

[GivenUp24 in reply to piglette]

I suppose….

[piglette in reply to GivenUp24]

I am glad you are feeling better on the lower doses.

[GivenUp24 in reply to piglette]

Ty! 😀

[Grammy80]

I just wanted to say.....don't give up. I have GCA and lost sight in one eye in 2019. I've been working at reducing since. Over the years the number at which I would flare did get lower and lower but after finally hitting zero last May, I had a bad flare and my dosage was on the rise since.

I see a neuro-opthalmologist and rheumatologist, and finally, last summer, these boys decided I should not go for zero again. Believe me, it is with great peace of mind that I accept that. You may be one of those people, too. I'm presently at 10mg, and next week will start DL's plan to slowly get down to 5mg and stay there.....at 84 years of age, that should hold me for the duration. Haha.....when I reduce I stay on that lower dose for as long as six weeks. I am enjoying feeling well and not worrying when the 'other shoe is going to drop.' You are young and should value your quality of life, and rightly so. By the way, I've been on Actemra since 2019 also, which the rheumy will continue.

Maybe go slower...though I don't know your pace....but listen to your body....it is usually right. My best to you....there is no shame in staying on a dose....who wants to be a zero champ but feel like ________ (poorly). 🤗💞

[Groggrim in reply to Grammy80]

Grammy80 thank you for your final comment to Givenup24. I have taken it on board for myself and find it to be a great relief.

[GivenUp24 in reply to Grammy80]

I feel better at 10 that I did at 20… this disease is beyond decipherable!

[Missus835 in reply to Grammy80]

Hi Grammy. I'm so glad to hear you're feeling well and you're right. What's 5 mg in the big scheme of things!🌻

[Grammy80 in reply to Missus835]

I had a cardiac ablation a few weeks ago which has made a positive difference. I don't have tons of energy, but at 84 I think I'll be thankful and broaden my backside beam getting back to my painting. Although, I'm now on Ozempic for diabetes...so who knows, maybe I'll look like Twiggy. (Hope not) 😉 💞💞

[Missus835 in reply to Grammy80]

Twiggy was a thing when I was in my teens. I used to draw on the bottom lashes and had her hairstyle. If I looked like that now, they'd say I was sick. Lol.

[DorsetLady PMRGCAuk volunteer in reply to Grammy80]

Actually she looks pretty good…😊

Twiggy