Tapering...like standing on a basketball

[DianeA1]

In Jan, 2018, within hours of taking my first 15 mg of Prednisone I felt relief from the PMR pain. I was a believer!! Armed with research from my dear sister away went the sugar, flour, gluten, processed foods and dairy. On came the vitamins, supplements, fruits and vegetables, water and 2am wakeup alarms. Where I used to say ‘don’t get between me and my chocolate’ now I said ‘don’t get between me and my Prednisone’! Off came the pounds, and with research from this site, on came the DS method and 10,000 steps.

I am an optimist. Even my blood type is B+. But the thought of going from 15 mg to 12.5 terrified me. I knew it was necessary, yet I dreaded it. What if…. I am so optimistic I cannot finish the sentence. But I did it. I took only 12.5 mgs. YIKES!

I love spreadsheets and lists. I have lists for everything. I have lists of my lists! So I have all the data for this story. Going from 15 to 12.5, I noted that I had pain, fatigue and even tripped. But each lasted only one day. That’s because I learned from this site to stop when I don’t feel good. And I am richly blessed to be able to take care when something goes wrong. So most of my spreadsheet entries for those 30 days are only “Woke up at 2am and took 12.5 mg with applesauce”.

My Rheumy instructed me to go from 12.5 to 10 mg. But I wasn’t going to fall for that one. I had DL’s dead slow method already mapping out the .5 mg reductions on my calendar for the next three months. But I really wasn’t ready psychologically to reduce, no matter how slow. Again, I knew it was necessary, but I dreaded it. What if….. you can fill in the blank, what if I felt bad like before. It is like stepping into the unknown.

My notes only say “Woke up at 2am and took [dose] with apple sauce.” When I was able to take the higher of the two doses, I felt like 'oh yay! I get to take this higher dose again'. Back on familiar ground! When I have to take the lower dose, I feel dread. But, nothing immensely terrible happens. And as the month goes on, I begin to feel like 'Yay I am doing it! I get to take a lower dose!' And the formerly lower, dreaded dose becomes the higher, familiar, safe dose.

Now, in Sept 2018, as thrilling as it has been to go from 15 to 7.5, now I am in really terrifying territory. Wake up adrenal glands!!! Let’s have an uneventful trip!!

Thank you

[DorsetLady PMRGCAuk volunteer]

Hopefully carrying on as you have will stand you in good stead.But just be aware of the random bouts of fatigue that may hit (Adrenals) - so just accept them - annoying and frustrating as they may be - it’s par for the course- and don’t get in a panic thinking it’s more than that.

Good luck.

[DianeA1 in reply to DorsetLady]

Thank you for everything!!

[MhairiP]

I laughed when I read about your spreadsheet! You are not alone - I too am a spreadsheet fanatic, and have been documenting everything from when I first became ill in June (dosage, time I wake up, how I slept, how I feel, what I've eaten) .

I have just gone from 12.5mg to 10mg - so far, so good. I know I'm going to have to take it much slower below 10mg, but I've got nearly 4 weeks to plan that on my spreadsheet!

[DorsetLady PMRGCAuk volunteer in reply to MhairiP]

You can't beat a good spreadsheet!

[PMRpro Ambassador in reply to MhairiP]

Sort of thing OH would do - not my thing I fear...

[DianeA1 in reply to MhairiP]

Wow you are brave!!

[piglette]

I am a spreadsheet nerd too, updated every day in glorious Technicolor!

[Rose54]

Well done

Know that feeling so well will be on 7.5 from next week DSS

[DianeA1 in reply to Rose54]

Rose54, When were you diagnosed with PMR?

[Rose54 in reply to DianeA1]

August 2915 but for a long time thay said I had CFS so had it for longer then that

[Omanain]

Hi Diane, Reading your post I could have been reading my own experience!!! The lists, the dreaded reductions, the fear of a return of the awful pain. I am on 9mg reducing to 8.5mg so I am in a similar position to you. Hope you are having a good day.

Kate x

[DianeA1 in reply to Omanain]

Kate, when were you diagnosed with PMR? I am just curious.

[Omanain]

April this year.

[DianeA1 in reply to Omanain]

Gee, I guess I took the long route to get to the around the same mgs as you. I was dxd in Jan 2018.

[Omanain in reply to DianeA1]

I think it was because my GP didn't know what he was dealing with. Because I have problem with my back I was being treated for chronic pain. I thought the pain in my hips was part of that, but they were so stiff that for a couple of hours in the morning I could hardly walk. I thought the pains in my shoulders was frozen shoulders and was constantly doing arm swing exercises to try and relieve them! I told the doctor I was in a lot of pain and he kept upping the pain relief. I was taking 8 Tramadol a day and they barely took the edges off!! Then, luckily I suppose, my hands seized up, he did a blood test and told me to take 30mg pred for 7 days and then stop!! This worked like magic. But of course at the time I had never heard of PMR and just assumed this would cure me!! Obviously after stopping the pred all the pain and stiffness came back. By this time I had an appointment with a rheumatologist, so my GP prescribed 5days at30mg reducing by 5mg every 5 days which would see me through to the rheumatolgist appointment. He gave me a pred injection and a brooklet on PMR. The injection wore off after 4 weeks so I phoned the clinic and they sent me a prescription for 10mg a day, so I have never had to taper from 15mg!!!

Actually it is a real shame I have this problem with my back. It is really holding me back. I am buzzing with energy!!

I am going to taper as slowly as I can. Although I still have to go to the rheumatolgy clinic occasionally my GP is now responsible for my pred prescriptions and he is in favour of a slow reduction. Thank Heaven for small mercies as my Mother used to say!!!

I am not looking forward to being on 7.5 so please let me know how you are getting on.

Kate

[BonnyQuine in reply to Omanain]

I've just gone back up to 7.5. It's where I feel ok.

Tapering v slowly, had managed to get down to 7mg, and then 6.5, but going to 6mg felt like a flare - much pain incl head, face and jaw, plus nausea and total exhaustion. Worst I've felt for months.

Will stay at 7.5 - 7mg for a while and then try again. Just have to keep trying until I manage it?

Dx GCA Nov 2016. Been tapering v slowly ever since.

[Omanain in reply to BonnyQuine]

No point in rushing things. Good luck

[DianeA1 in reply to BonnyQuine]

Seems like the bottom line is that PMR doesn't taper at the same rate as our pred taper..... and sends us that message pretty loudly and clearly!

[DianeA1 in reply to Omanain]

Hi Kate, I hope they find a full and speedy solution to your back issue so you can use up that energy!

[Omanain in reply to DianeA1]

Thanks. I am at the moment cleaning the washing machine dispenser tray. It is disgusting.

[Purplecrow]

"Like standing on a basketball", 🤣🤣

Or "walking on a water bed"!!!🤣🤪😭

Sometimes things just tickle my funny bone😁

Ok...carry on...

💜🙏🏽

[DianeA1 in reply to Purplecrow]

L O L!!

[Suffererc]

Hi DianneA1

I was diagnosed same time as you. Was given 15 and tapering then was put up to 30 when I developed jaw ache,. Believe that was caused by Alendronic acid. Now tapering again using DSN Method am down to 12.5 at moment but am going down to 11.25 in a few days. Took it upon myself to get pred dose 2.5 so I could cut. Find bigger dose tapers to fast. Am seeing Dr next week and think she is going to prescribe 1mg pred so once on 10 will be able to taper at .5. I am also following the diet you are on after reading about it on here. Good luck

[DianeA1 in reply to Suffererc]

You probably already have read it, but HeronNS wrote about her success with supplements and 10,000 steps to help her bone density. She inspired me to look into it and follow it, and my last dexascan improved, too.

We can do it!!!