Can't get below 8mg PMR

[ah7690]

No matter what I try tapering wise I cannot get my Prednisolone below 8mg, even dropping to 7mg gives me a lot of pain and stiffness.

[SnazzyD]

Hello there. It would be really helpful for those replying to be more help if they have some perspective of your PMR/GCA journey and steroid reduction plan and your symptom relief along the way. It’s a common problem but each person has their own story.

[ah7690 in reply to SnazzyD]

Hi Was diagnosed with PMR in early 2017 after getting stiffness and pain in my neck, upper arms/shoulders and hips. Started on 20mg got down to 3mg by later 2019 but then had a large flare and went up to 10mg which stopped it but tried to taper back down and got to 8mg but no matter how I try I can't get below that as the pain returns even on 7mg . Have to say since late 2020 it's been stressful, Covid, family issues, which maybe is not helping

[Macadoo in reply to ah7690]

I couldn't get below 6.5mg prednisone. Then started methotrexate about 4 months ago and have reduced to 5mg without flares.

[DorsetLady PMRGCAuk volunteer]

Not sure how long you have been treated for PMR, but sounds as if 8mg is your level - for now. Won't always be, but you aren't reducing come what may to zero, you are trying to find the LOWEST dose that controls your pain.

You might like to look at these links-

a. one for new/newish patients -

healthunlocked.com/pmrgcauk...

b. one on tapering plans - which may help you get below 8mg [when ready] - and I suggest you try only 0.5mg per taper in future

healthunlocked.com/pmrgcauk...

c. one on adrenals glands which will be coming into play at this level of Pred -

healthunlocked.com/pmrgcauk...

[ah7690 in reply to DorsetLady]

Thanks for the reply been on Pred since Dec 2017

[DorsetLady PMRGCAuk volunteer]

Just seen your reply to  SnazzyD - and no, stress certainly won't have helped things, and unfortunately once you get into the flaring pattern it seems to become more difficult each time to get things back under control - so much slower tapering regime...

[SnazzyD]

DL has given you information. 0.5mg drops were far better for my body to adjust to at this level. What is happening in life and how much you push yourself will make a difference too and may require a slower taper. Low adrenal function once you’re under 8mg can add further complication which is why she has put in a link for that too. I certainly can attest to that playing a big part in general well-being until the adrenal glands start working better.

[PMRpro Ambassador]

You are never reducing relentlessly to zero - you are tapering to find the lowest effect dose for YOU at this moment in time. It took me over 4 years to get reliably below 10mg and in the last 13 years I only got to 5mg once for about 18 months before having a flare and having to return to 15mg. Covid coincided with my husband being ill and a slow decline to his final illness and death - during that time, caring for him alone and coping with avoiding Covid as that would have finished him off, I needed even more pred to be able to function. Don't underestimate what stress can do in PMR.

[Alan7690]

Hi all thanks for all the replies and info. Now stupid me somehow managed to kill my ah7690 account so had to create this new one 😞

[SheffieldJane]

7 mgs is a tricky stage due to the Adrenal function beginning to sense a coming drought. This can give rise to PMR symptoms as well. I got stuck at 7 mgs for a year, I would try periodically to taper, but like you I became very symptomatic. Eventually something shifted and I made a slow taper to 3 mgs. I felt pretty unwell though and following a specialist ultrasound scan I was found to have GCA/ LVV. This was extra cranial GCA and therefore the common Temporal Arteritis symptoms were absent. I was immediately put up to 40 mgs. I am currently trying to taper to 4.5 mgs. My symptoms tend to be PMR-like. I am now in my 8th year of the diseases.

[Dochaz in reply to SheffieldJane]

Hello SheffieldJane! I also have GCA/LVV along with PMR symptoms which are under control at the moment, on my 3rd day at 6.5 mg. I know when the PMR flares because I get stiffness and pain in my neck and shoulders, BUT how do you tell if the LVV is flaring or under control when (for me anyway) there were never any cranial symptoms? Are high ESR and CRP the only signs? Mine are normal. I do feel fatigued, but that's probably just adrenals waking up (and a good old-fashioned cold winding down).

I will be "celebrating" my first Prednisone birthday next week 😉

[SheffieldJane in reply to Dochaz]

That is a good question. It may be that the PMR symptoms are speaking for all the autoimmune diseases - ie PMR GCA/LVV. Do you ever feel generally unwell with viral symptoms. I have tended to assume that this is a flare warning.

[PMRpro Ambassador in reply to Dochaz]

LVV rarely gives rise to cranial symptoms - but I suspect they haven't really thought about LVV as it is a relatively new concept really and too many doctors probably don't even know it exists.

[Merryfield in reply to SheffieldJane]

Sheff, you are one tough lady.

[Louisa1840]

Hi there, you sound very similar to me. I was diagnosed in May 2017 and managed to get down to 3 mgs by July last year. Then, I had massive stress due to several deaths in the family including a beloved grandson who took his own life. I flared like mad and had to go back up to 15 mgs. Now I am strugggling to get below 10.

It is what it is as they say.

Good Luck and keep posting because we are all here for you.

[Merryfield in reply to Louisa1840]

God bless, Louisa. So, so sorry for your loss. Sounds like 10 mg is helping you right now.

[Thelmarina in reply to Louisa1840]

❤️

[SheffieldJane in reply to Louisa1840]

♥️

[Zebedee44]

If it is any comfort I was stuck at 8mg for three years after my GP had wrongly advised me on the treatment plan for PMR and I tapered too fast. I wonder if that is what is happening to you. I found 8mg was my happy place from which I could manage life and all its ups and downs. Now tapering to 6.5mg in my sixth year and finding it hard. Hand on in there and don’t beat yourself up for needing more help to get through the tough parts, Chrissie

[Pippah45]

I got stuck at 7 for ages about 2 years patience is the name of the game. I am now being patient at 5.5 pred and got there from 7 by reducing at .25. Half didn't work for me.

[Sophiestree]

This is so interesting as I have found 8mg to be perfect. I feel good on 8 and will start a super slow reduction when I'm ready.

[Balletomane]

I have LVV GCA, and couldn't get below 10mg until I went on methotrexate as well. That worked for me, and am now on 3 1/2 and going veeery slowly down.