Polymyalgia Rheumatica and Prednisone - Interview Diane Wells

[@mikem8246]

Thank-you for bringing some attention to PMR. It is debilitating!. The rate your pain on a scale of 1 to 10 doesn't do PMR justice because it doesn't account for the body stiffness involved. I used to describe PMR as feeling like I was 150 years old with rigor mortis setting in. The treatment for PMR is long term (years) of prednisone. There has to be a better way because long term prednisone use leads to adrenal insufficiency. Symptoms of adrenal insufficiency can mimic PMR symptoms so when you taper below 10 mg it becomes difficult to know what is causing the pain. I took prednisone mostly in excess of 20 mg daily for 13 years for PMR. I have been off prednisone the last 2 years. My theory is that long term prednisone use will eventually lead to adrenal insufficiency. When that happens the body is unable to "regulate" inflammation. PMR and the treatment with long term prednisone then becomes a vicious circle. I would advocate for a better treatment!

[@PrednisonePharmacist]

Wow! 13 years of 20 mg or more! Bless you! 1-10 is truly inadequate for something like this. I love how you describe the stiffness like rigor mortis! Morbidly appropriate! 🤪

[@Fomites]

You imply that prednisone causes pain during tapering. This is not supported by the evidence.

[@adriennedeloreto2639]

I get pain when tapering….

[@liddletoes]

Try the carnivore diet for PMR

[@lannyvhmoonface884]

Everything you describe it is happening to me. I am in the group on FB that’s what save me from going into depression.

[@PrednisonePharmacist]

I hear ya! Truly a supportive group! What did you find in the group that saved you from depression?

[@lannyvhmoonface884]

These PMR sufferers encourages each other, we compare our dosage of prednisone and our symptoms suggest questions to ask our rheumatologist. It does not matter how late you send a post there is someone online to have a conversation with.

[@melissavaldez222]

U just described my existence! Thanks for sharin! Knowin im not alone helps me!

[@PrednisonePharmacist]

I hear ya! Just knowing you’re not alone makes all the difference, doesn’t it?

[@melissavaldez222]

@@PrednisonePharmacist I was diagnosed with PMR this past March and the prednisone roller coaster is the is terrible.....I've been following you for sometime and thank u for all the knowledge , experience and info that you share!😊

[@elliezeuke7080]

Just diagnosed in August 2023 by PCP. Referred to rheumatologist. Started 15 mg. Down to 10 currently. Pain everyday. Real stiff in morning. Refer to myself as the Tin man from the Wizard of Oz. Releases during day. Go to bed and starts all over again in the morning. Tapering down to 9 mg starting October 1st. Excellent video. Thanks for sharing.

[@liddletoes]

The carnivore diet worked for my PMR. n9 more symptoms

[@AmandaHallPsychic]

Support group has been a life saver for me. I can relate to all that has been said. The stiffness is one area that people don't talk about enough. Yes the pain is bad it is whole life changing illness. But we can beat this by working with the Medical team, plus research everything you can read and watch. And then take out what relates and works for you . The other thing I will add that has helped me is. A good Massage Chair worth the investment in your health and well being - helped me with stiffness and pain. Plus a Tens Machine. Be kind to yourself and allow yourself to rest when needed. Listen to your body it know what you need and be patient. You will conquer this with time and patience.

[@PrednisonePharmacist]

These are great tips! The stiffness is almost incomprehensible. How would you describe it?

[@giggino342]

I would love to join a support group 🙏

[@liddletoes]

Try the carnivore diet! It worked for me

[@molebohengmokhethi1208]

Same with me ​@@giggino342

[@DorothyDurbininteriordesign]

Pain and Prednisone roller coaster!!!

[@PrednisonePharmacist]

That’s for sure! Thanks for taking the time to call me and let me know how much this resonated for you!

[@dorisdepinar21]

Dyann, you did so well, and describe us all suffering through this. I'm glad about this interview. Also glad you beat this! Thank you and Dr. Megan for bringing this to light.

[@dyannnew4603]

Thank you, finding Dr Megan was a lifeline for me.

[@PrednisonePharmacist]

You’re welcome!

[@dopsleutel11]

Thank you! Specialy about the emotions. I didn't understand why all of a sudden I could cry about "nothing".

[@PrednisonePharmacist]

Right? The emotion changes are shocking and most don’t anticipate them. So nice to have the understanding of what’s happening, right?

[@dopsleutel11]

@@PrednisonePharmacist Spot on!

[@kenzahora9167]

It’s a blessing and a curse! Prednisone. 10 mg. Gave me movement. I could not lift a cup or a pot. I could not shave my underarms, reach a shelf, pull up my blankets or turn over, get out of bed. I was an invalid. 10 months on 10 mg. My doctor wanted me to go to 7.5 That’s a 25% reduction. In two days I was at square one. I just showed her your tapering charts. Trying 9mg. Yay! I had printouts from YK and New England Journal I’d Medicine with me. We’ll see how it goes. Will be happy to make it to 5mg. She also started me in Leflunamide to help with tapering..

[@maril1379]

Excellent thumbs up. Good to have guest speaker

[@PrednisonePharmacist]

Yes! Diane is excellent!

[@stavroulahendon3200]

I love my PMR fbook support group.

[@PrednisonePharmacist]

What do you find the most valuable about it?

[@stavroulahendon3200]

@@PrednisonePharmacist the information and finding out how to deal with it, mentally.

[@pegzoconnor7205]

Me too, came upon me six weeks ago. Fortunately called wonderful G.I. doctor while others ignored serious symptoms including sed rate 97, CRP 87, platelets reached over 800. ..indications waiting currently for biopsy GCA… Called desperate prednisone as primary 20 year retired, stuck horrific new dr. treated like complaining middle-aged woman refused even 5 mg of prednisone. Had access to all bloodwork from ER two days prior to seeing him. had not been immediate attention 30-year G.I. doctor be in big trouble. week ago red patch over forehead, swelling over eyebrow cornea eyes. afraid going come pos. GCA😢 40 mg of prednisone now, if GCA!pos up to 60. Facebook group lifesaver got me into ER when didn't want go. When hear people say matter minutes went blind really hits hard. blessed to have each other and this video is great as well. Thank you. Mine started exact same way. Wish blessings and healings for all. ❤️🙏👍💯❤️‍🩹🤗😘🍀

[@anichoubouk9367]

Thank you for sharing. I’m going through this right now and been on prednisone for 10 months. So much like Diane describes.

[@PrednisonePharmacist]

Which part resonated with you most?

[@anichoubouk9367]

@@PrednisonePharmacist the lot 👍🏻i was interested that Diane was off prednisone now and had some pains but generally doing well👏encouragement to me 😘although in addition i am on thyroxine so that sets me a little apart😵‍💫

[@barbaracobb6090]

Dr. Megan, I stumbled across this interview as I was looking for more info about PMR and or Prednisone. I was recently diagnosed with PMR. I must say the information that D WELLS described for her symptoms was spot on. I have only been on Prednisone for about 6-8 weeks. I have really only started on this journey, but I find your expertise and her experience to be very helpful as there are so many questions. Also, I will look into support groups, thanks to her recommendation. You (& D Wells) can go to bed tonight knowing you have helped one more person. Thank you for covering this topic!

[@liddletoes]

Try the carnivore diet

[@Fomites]

My GP in London diagnosed polymyalgia rheumatica (PMR) in me in 2018 before I returned here to Australia. All the GPs I have been involved with both here and in London are very familiar with PMR so I don't know why you both say that doctors don't know about this. Even doctors in unrelated specialties are familiar with this condition.

[@lupobunch]

Your story is nearly exactly of what I’m going thru currently. I’m 15 months in, and struggling to go down from 7.5mg of prednisone. I lost my job a week ago, where I was (thankfully) working from home. I’m not sure what’s next, since there are many days that I’m not even able to move until four hours after my morning dose of medicine kicks in. I’m worried about my stress level going back up, and it affecting my PMR even further. Your story of finally getting off the prednisone is promising. Hopefully it won’t be much longer for this to be over with for me - because I’m not sure how much more I can stand.

[@dyannnew4603]

Try guided meditations on KZbin for the stress, it really helped me

[@lupobunch]

@@dyannnew4603 Thank you! I’ll look for it 🙂

[@PrednisonePharmacist]

Oh no, Heather! So sorry to hear you are suffering so much! My other friend with PMR found benefit from taking the prednisone in split doses so that it kicks in the morning… he takes half in the morning and half at bedtime.

[@liddletoes]

Try the carnivore diet. It worked for me...

[@anitagreg2010]

I have this right now. Diagnosed in Sept 2022 although had been in horrible pain for 6 weeks. Even had an MRI. I had all of these symptoms and was walking with two canes before the prednisone. Thank you Diane. I screamed in pain and cried too. And self diagnosed. I have a wonderful PCP that believed me. Now on 9 mg and tapering down slowly although still have morning stiffness. Thank you Dr. Megan for giving awareness to this awful disease.

[@auleelis9580]

I was diagnosed with PMR 3 days ago and started taking 15 mg, with much improvement of my pain and discomfort, but not pain free… waiting in line to see a Rheumatologist…

[@tommoso55]

Well done Dyann

[@kathypatterson4535]

Thanks Diane! Appreciate being on the group with you. I've kept careful records of my Prednisone tapering journey, if the pharmacist wants to connect.

[@PrednisonePharmacist]

I would love to connect! I’d love to interview you and hear your careful tapering plan. Send me a connection here: prednisonepharmacist.com/contact-us/

[@stavroulahendon3200]

I see me ....in your story except that I am still fighting PMR

[@randallmcintosh7075]

Great information. Thanks

[@PrednisonePharmacist]

Glad you liked this interview, Randall!

[@cassthompson6168]

Thanks for sharing... yes I get those feeling on prednisone I cried alot, I'm so depressed, the jitters, I can't function, I can't walk straight, I have to be in bed.. I just need to get off this crazy pill. I'm only on 5mg ..... then I have to deal with methotrexate side effects oh God...

[@pegzoconnor7205]

❤

[@molebohengmokhethi1208]

Am having tremors not in pain but 😢am always so tired its 3 weeks with mini tremors

[@celiafish]

The same happened to me after Covid…bilateral pain in both shoulders for weeks mostly in the night… pain faded after 1!hour waking up…and after 6!weeks pain in both hips… I couldnt walk and went to the E.R. They gave me Prednisone 40 mg for a week and tapered to 5 mg… The pain went away after 2 days of taking Prednisone… not pain at all… Let s see what happened after I am down to 5 Mg. I need to see a Rheumatologist now …

[@pegzoconnor7205]

This has been connected to Covid and the jab. Along with MS. You can research it. Best wishes to you

[@susanbisiewicz2400]

PMR is the most common rheumatic disease of older people!

[@PrednisonePharmacist]

Really? I had no idea! I keep learning new things about this condition. What else don’t I know yet?

[@jennissw]

Ive had it 8 years

[@Wimsa43]

Im on my 11th year and on 2.5. Stiff and pain in legs and hips.

[@PrednisonePharmacist]

Oh my goodness! What a long battle you’ve had! What have you learned that others should know?

[@Wimsa43]

@@PrednisonePharmacist Dont trust the doctors. They know just about nothing about PMR. Without groups on FB Id be dead.

[@pegzoconnor7205]

I'm so sorry 🥲❤️‍🩹🤗

[@ricktasker8248]

Thanks

[@bluesky7288]

Cant believe they went from 40 to 5 on 2 weeks

[@selahjoymacedo]

When I got off my prednisone I have been breaking out in random rashes every day. Has not stopped, is this a common side effect?

[@dyannnew4603]

Dr Megan will have to answer that one.

[@PrednisonePharmacist]

Yes, Selah. It's part of Prednisone's side effects list that I've gathered. This usually happens especially if you've taken them long-term. You may read more about the side effects list here:prednisonepharmacist.com/education/prednisone-use-long-term/ and you can share your experience with me as well just DM me on my social accounts so I can discuss it more with you.

[@jeanplacanica7814]

Horrible thing to and it can come back sometimes. I had it for 2yrs. Just couldn’t do anything thought I would be in a wheel Chair.

[@PrednisonePharmacist]

Glad to hear you’re not stuck in a wheelchair! How are you feeling now?