Inflammation dampening??

[diana1998]

Good evening everyone, it has taken me nearly 5 years to get to 5mg for the 2nd time. First time I've dropped without any side effects 2 weeks ago. Then 3 nights ago I suddenly found I can get up easily from an armchair during the evening whereas I've always been very stiff (no pain though). I'm trying to work out how this can be.. I'm certainly not complaining. Is the pmr inflammation beginning to subside, is it the Joe Wickes squats I'm doing, is it because I couldn't get Adcal for last 3 nights or is it because I'm actually feeling better on 5mg? I certainly couldn't manage 5mg in 2019. I intend to stay here for 3 months. Has this suddenly happened to any of my forum friends? I don't take any other meds. It seems so strange and just hoping it lasts!

[PMRpro Ambassador]

I have known a few people who said they suddenly felt different and then proceeded to be able to taper steadily to zero. But you can't take short cuts - the next hurdle is adrenal function returning!

[diana1998 in reply to PMRpro]

No short cuts for me.. no fear. I'm too sensitive. I had a synacthen test last year when I reached 5mg and results were OK re adrenals said the expert!

[SheffieldJane]

Exciting! Why wait 3 months? 3 weeks might be enough then down to 4.5 mgs. Mind you, winter can make it tougher. If you can do those squats you must be doing well. Good luck!

[diana1998 in reply to SheffieldJane]

Don't tempt me!! Having taken so long to reach the magic 5mg I am as nervous as a cat, so will take no chances. As PMRPro always says, one rheumie keeps his patients on 5 for 9 months so what's a mere 3! 😜 Don't want a flare. 🙄

[AncientMariner]

Congratulations. I have found my experience of GCA Labyrinthine, getting the diagnosis in the first place was enough as I just kept getting told I was too young at 53 but younger cases are known. Finally it now seems some in medical science and it's swerving between certainty then vagaries have concluded it is GCA and I can at last contextualise what has been happening to me. Managing the steroid reduction has been quite a yo-yo as so many things can lead to inflammation and set backs and trying to find the "smoking guns" whether it is diet, a cold, something you drank, an oral/dental issue or just your immune system being what it is drives you up the wall so well done and I certainly hope it stays this way for you.

[diana1998 in reply to AncientMariner]

Thank you. Has been up and down over time. It's a wait and see game!

[PMRnewbie2017]

I have had failed attempts with flares and adrenal insufficiency symptoms at 2.5mg. From experience I now know I went too fast from 5mg downwards, even using DL's DSNS taper. I went from 5 to 4.5 to 4 to 3.5 then 3.0 then 2.5mg. We often recommend the maximum of 10% reduction and the doses above are in keeping with that. However, because I have found that every failed attempt makes it harder to reduce in the future, I am reducing the dose by smaller amounts and will still be using the DSNS which takes 5 weeks for the cycle. So, currently I take 5mg/4.75mg. I then plan to do 4.75/4.5mg. I strongly suspect I have poor adrenal function having had symptoms in the past. Hence slowly slowly, remembering that at the same time unless the PMR has burned out we cannot reduce to zero anyway.From 5mg onwards is a real balancing act and does require a good understanding of how our PMR affect us individually.

[PMRpro Ambassador in reply to PMRnewbie2017]

But above all you have to remember that however slowly you choose to do the DSNS approach - until the disease burns out nothing will get you below the dose you are looking for: the lowest dose that gives the same result as the starting dose. If you are lucky that will get lower as time goes on but at some point you will hit the buffers!!

[diana1998 in reply to PMRpro]

Agreed