I’m having tapering issues.: I’ve been working at... - PMRGCAuk

PMRGCAuk

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I’m having tapering issues.

singingloud profile image
16 Replies

I’ve been working at tapering to get below 10mg of prednisone. I’m working on the dead slow method going from 11mg to 10mg. I recently stopped Cymbalta which I believe was helping with pain in my shoulders.

So my question is what to do with the pain returning now that I’m half way to 10mg. Do I continue to go down to 10mg or stop and stay at 11mg for a while?

I’m also dealing with a tear in my bulging disc at L4-L5 which causes increased pain and stress. I meet with a neurosurgeon next week.

Thanks for any advice. You are all the best.

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singingloud
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16 Replies
PMRpro profile image
PMRproAmbassador

I'd go back to the 11mg dose - you are dealing with other pain and that is causing stress too. Force things and you will end up going back even further.

Why did you stop the Cymbalta?

singingloud profile image
singingloud in reply toPMRpro

I was having other side effects. GI issues, disturbed sleep, my mood had improved. Stress with my elderly dementia mother had decreased. I was only on 30mg of Cymbalta which is the lowest amount prescribed.

When I first went on Cymbalta in February, several of you thought I should not use Cymbalta but go for personal counseling.

I return to 11mg and stop the taper now. Thanks for the advice.

PMRpro profile image
PMRproAmbassador in reply tosingingloud

Depends why they wanted to use the Cymbalta - it sounds as if there was a pain issue it could help with. Like it all - it a question of balance ...

SheffieldJane profile image
SheffieldJane

I totally agree with PMRPro now is not a good time to be tapering. Wait until the issue with your bulging disc and consultation with the neurosurgeon is taken care of. I can empathise with caring for a loved one with dementia it is stressful, frustrating and ultimately heartbreaking. I looked after my mum for 7 years until she died in 2013.

Pondweed profile image
Pondweed in reply toSheffieldJane

Good morning SheffieldJaneI can totally empathise with your heartbreaking time with your mum. I feel sure that caring for my mother in law with dementia at the start of the Corona Carnage Lock down, and her dying of bowel cancer was ONE of the Stress triggers (there have been many over the last 12 months) kicked off my PMR. Thank goodness that the wonderful Practice Nurse (KB) immediately recognised my symptoms in March and put me on the Miracle Pred Journey. Also, thank goodness for this brilliant Forum and all you experts. I have started to look forward to the 7.10am HealthUnlocked email that pops into my inbox each morning 😄😄💪💪👍👍

singingloud profile image
singingloud in reply toSheffieldJane

My mom has lived with us for 21 years. Her memory and attitude towards me has been difficult for ten of those years. She now can’t hold a detail in her brain even after asking a question. It’s sad and frustrating all in one. Her condition certainly puts stress on me. When she visits with other family for a week or so my pain goes way down.

My heart goes out to you and for the loss of your mum, Sheffield Jane.

SheffieldJane profile image
SheffieldJane in reply tosingingloud

Thank you. As you know we lose them steadily over the years so when they finally slip away completely it can be a relief. The person they used to be reasserts itself back in your memory. It was a major trigger for my PMR too. It’s so insoluble.

GOOD_GRIEF profile image
GOOD_GRIEF in reply tosingingloud

My Mom had a mild stroke that shot her short term memory. She could remember details like what everyone got for Christmas two weeks before, including how the presents were wrapped and who gave what to whom, but couldn't remember she has just put butter in the black frying pan to make her eggs for breakfast, and had gone off to the dining room window to look outside at the blue jay. Nearly burned down the house that time. She could remember all the places where she had hidden several set of cars keys decades before (because her teenagers never remembered to return them), but couldn't remember where she parked the car when she went shopping. She would hold long, intricate conversations about what she had just read in the NY Times or saw on the news, but couldn't remember she'd just had that conversation with the same person moments before. I can't tell you how many times she called the police because she didn't know who her home health care workers were, or why they were in her house. (My nephew would send a car over from the precinct to make sure all was OK.)

She did remember a few things that happened after the stroke, especially if they were associated with strong emotions. Early on, she told the doctors on rounds at the hospital that she was fine, except she had "CRS -Can't Remember Sh*t", which got a major laugh. She also remembered the shock of 9/11, losing her beloved cat, and getting a new kitten.

We didn't want to send her off to long term care, because we were afraid she wouldn't remember where she was or why she was there. She always told us she was happy to be in her own home with her own kitty sitting on her own couch. She had lots of visitors among friends and family, and greeted everyone as though she hadn't seen them for years, with hugs and kisses, even if they had just been there yesterday. And she'd tell them she had CRS.

We lost her one night as she slipped away in her sleep, on the couch in her living room surrounded by roses and lilies gathered from her garden, with her kitty curled up at her feet. I like to think she was dreaming of swimming in the ocean with my father. Besides swimming with their kids, it was their favorite thing to do.

singingloud profile image
singingloud

Thank you for your kind advise.

MrsNails profile image
MrsNails

I’m only just catching up & agree with Pro you should hold steady at 11mg especially until you see the Neurosurgeon. It’s difficult sometimes to differentiate the pain from two conditions. If the Cymbalta didn’t suit there are alternatives & some which work on nerve pain as well, which may help ease the pain from your disc issues.

Maybe discuss with your GP &/or Neurosurgeon re an alternative.

Good Luck 🍀

Let us know how you get on.

MrsN

singingloud profile image
singingloud in reply toMrsNails

Thanks I will keep in touch. I will also check into other alternatives. At least now that I’m off Cymbalta I’m not waking in the night drenched in sweat.

Hi I am no expert but went from 15 to zero pred in 10 months. If you reduce and have pain stop the reduction. It was crucial to my progress to only reduce when your body tells you. I never reduced even 1 mg at a time.I would for example be taking 5 mgs I would then reduce to 4 mgs for two days out of the 7 if there were no reaction then do 3 days and so on I went from 15 to zero in 10 months by this method. It seems to me even 1 mg a day reduction is too much at any one time. I stress I am only one individual and might not be typical but it worked for me. Good luck

singingloud profile image
singingloud in reply to

In ten months you are off prednisone? That is amazing. I’ve had issues of flaring in the past two years when I go down too fast to 10mg for the past rheumatologist. I’ve been using the dsns method since going to Mayo Clinic last October 2020. It was working well until now. I’ll stay at 11mg for the time being. Stay well Billhill.

TURQ8 profile image
TURQ8

I am not an expert and about to start, this sounds like a rapid tapering and successful which is encouraging.

Dambusters profile image
Dambusters

I can emphasise. I am down to 8.5 but getting shoulder pain and arm pain on left side. (I sleep on right side)I have done nothing permanent to increase the dose yet because I go for a pain clinic appointment for other problems, later this month. I have taken an extra 5 mg this morning (I take 8.5 with evening meal because it works for me) because I am under a lot of stress with a house move that has gone sour. I'm hoping it might give me a boost.

Boss302Fan profile image
Boss302Fan

Also, like PMRpro indicated going back to 11mg…if you still have pain after a few days I’d increase it another 0.5mg and hold for a few days. Once you find the dose that’s keeping PMR at bay I’d stay there for 2 weeks before attempting a reduction and even then probably just try 0.5mg instead of 1mg drops.

I keep reading things like this. If you start having pain don’t keep trying to go lower. It’s one thing preached on this site since I came on 1.5 years ago. The goal is to find the minimum dose necessary to manage PMR at current condition. If ya start hurting then it’s not a high enough dosage.

This is not a race. No one is going to win a lottery if they get to zero or get to zero faster than someone else. No bragging rights here!😁

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