Steroid Tapering in PMR: What's the Gold Standard?

[@terrycarter8928]

Been on it going on 5 years. I’m at 5mg daily but live with pain in the morning and late night. Try to take as little as possible but 🤷‍♂️

[@elminero49]

Male, Age 59: I was diagnosed PMR in August 2023. I was prescribed 15 mg of Prednisone. After a few weeks I had very little symptoms. I only had a little stiffness in shoulders in the morning. I stayed at 15 mg another month than I tapered down to 12.5 mg. I was feeling great so after a few weeks at 12.5 mg, I tapered again to 10 mg. After about 8 days at 10 mg, the pain came back again and I had trouble putting on a shirt. I returned to 12.5 mg and after about 15 days all symptoms were gone. The plan now is to stay at 12.5 mg for 30 days before going down to 11 mg. I hoping to get below 10 mg soon.

[@emmaneilson9965]

Hi there, are you off prednisone now? I'm just starting my taper I've gone from 7.5mg to 6 & feel pretty sick. I hope you've made it off ♡

[@emmaneilson9965]

I've been taking it for over 5 yrs now :/

[@elminero49]

@@emmaneilson9965 I have been on prednisone for 320 days. I'm currently on 4mg. I go down 1/2mg every 24 days. If I feel slight symptoms, I will go back up before a flair-up occurs. Then after 11 days I will attempt to go back down .5mg again. I suggest taper 1/2mg at a time and KEEP TRYING. DON"T GIVE UP! ...and good luck. I hope to get off prednisone in another 6 or 8 months.

[@AkingBones1]

Thank you so much for the information, Heres a little tip for any future video's, ...People with PMR have probably not had a decent nights sleep in weeks so often suffer with brain fog which makes it difficult to understand people who speak quickly, I had to backtrack so many times even using the subtitles which often just add to the confussion...Many thanks ..Regards from the UK..

[@rdgarcia6081]

I'm 52 yrs old, got diagnosed last month. I'm on 10 mg only helps on inflammation for 15 hours approximately. I have trouble bathing and simply doing laundry my body gets so tired and tight. I used to work at a warehouse, I just thought I was out of shape and have trouble breathing. Headaches are bad and parts of my face get numb. Stiff from neck down to my shoulders. When I walk my hip is painful, I sometimes walk long walks like an ewok.

[@topbuilder3790]

I was there. Doubled the dose to every 12 hours and made a world of difference. I was losing 4 hours every morning.

[@Wimsa43]

You talk to fast :( Im on my 11 th year with PMR. On 5 mg but very stiff, hard to walk and pain. Doctors in Sweden dont know much about PMR. They want me to sop taking pred but thats impossible.

[@terrybooth4730]

What a great video, thank you for your expertise, just a shame other 'professionals' do not share your good advice.

[@tahlglass6317]

The 14 week taper did not work for me. Symptoms returned.

[@bobreichel]

I have PMR and have been on steroids for 14 days at 15mg tapering down to 12.5 now. My question is the pain is nothing like it was but my joints are still quite stiff. Will that go away if I do stretching exercises? I seem to loosen up as the day goes on but tighten right back up come morning.

[@solarwind907]

I’m just someone with PMR, but stretching, doesn’t help me at all. I mean it must help some, but the inflammation is not caused by not stretching in the first place, right? Anyway, good luck to you.

[@solarwind907]

I’ve been on prednisone for more than a year now. Down to 12.5 mg per day. I would love to know exactly when to taper. Is it when you only holler in pain when you’re getting out of bed, or pulling your shirt over your head? Or are you supposed to wait until your pain, free, and then taper? Thank you!

[@topbuilder3790]

I have seen the transition described a couple ways, 1) Your dose provides a pain free daily life. You try tapering to see A) Are you over it? Because how else would you know? B) Can you live with a smaller dose and still be pain free. And, I have seen those who just "knew" that it was time to taper and did so successfully. (I'm not a doctor)

[@solarwind907]

@@topbuilder3790 thanks for your reply. I think everyone’s different and I’m just gonna have to keep playing around with it. I take ibuprofen sometimes when it’s bad and I don’t want to increase the prednisone. I also take a calcium supplement with vitamins, K1 and K2 to try to help with the bone density you lose with prednisone. Down to 10 mg at the moment, but I definitely feel pain every single day. Hoping for the best!

[@candacesoucy243]

My dr. Put me on high dose prednisone 37 yrs ago I was off it finally and they ended up putting me back on it for somethings else. The lowest I could get down to was 7 mg. They use it now for adrenal insufficiency as well as emphysema and copd. Im thinking ive been up and down on it for so long im struggling to taper down. If I cut back even just a half of a mg my joints and bidy aches like crazy. Everytime I ask one of my drs how to taper down i grt no answers all i hear is they want me down to 7 or 8mg I don't see that happening anytime soon. Any suggestions to help me? There's mo way i can cut back 2 1/2 mg at a time. Anybody out there can help please feel free. My joints are shot. I had my left knee replaced in 2011 due to osteonacrosis I have osteoporosis. I was told a month ago I now have osteonacrosis in my femor and my tibia and there's nothing they can do. My right leg crumbles up whenever it feels like it without any warning. The pain is just horrible and I will be in a wheelchair the rest of my life, im only 57 yrs old 😢

[@tgmtf5963]

Taper by 0.5mg

[@zootybeano]

I taper by quarters. Seems impossible that my body can tell, even by quarters I spend all the time with symptoms.

[@apergiel]

Nice. 70 yo, i had PMR & prednisone took care of it 6 years ago nicely. Now i have it again, pred worked fine till tapered to 3.5mg, then big flare. i went back to 7mg still sore but at least i can sleep & function, sometimes using tylenol as a adjunct. My question is on a flare, does one increase pred till no pain & comfy, or till one can barely function? & then is it recommended thar one reduce even though still symptomatic? Also, I am curious about stretching through pain, seems counter intuitive, I just want to go to bed, but gradually stretching through pain seems to help, maybe? For example, gradually moving my arm up over my shoulder to grasp the head in 16 small steps, starting with resting the arm on a tall dresser, then increasing stretch by a couple inches on each try.Anyone had luck with this approach?

[@zootybeano]

What my internist husband suggested when I had a big flare at about 12mg was to do two days on 20mg and drop back down to 12. I look at my graph and see when I missed a dose and doubled up the next day, seems to work. Now on 3mg after almost 2 years and still symptomatic.

[@zootybeano]

Real life, yes that matters. Gold standard is just nonsense. I'm on 3mg. after almost two years. I started on 20 for a month and absolutely had to split the dose. I had so many flares that I was able to taper by only 1mg a month and my CRP has done nothing but go up, latest 30. Sed rate always normal. I've never had "clinical remission." Maybe it will happen someday, or not. Reading thousands of forum entries by patients, Mayo Clinic, Facebook, quick remission and fast tapers seem to be rare exceptions. Seems men can get off faster.

[@montanacrosses]

How can I get a diagnosis? The prendesone puts on weight!!

[@solarwind907]

No, prednisone makes you hungry and eating puts on weight. Prednisone is tough on your bone health. I’d like to hear a doctors opinion on exactly what supplements and exercises we should be doing while on prednisone.