Thank you very much for a fascinating presentation. I was diagnosed with pmr in November 2021 and have spent time on the 'steroid flare rollercoaster'. Luckily I have since learned how to decrease steroids slowly without flaring and am down to 3mg per day of prednisolone (I am in the UK). I would like to include a link to this presentation on a website I am currently building. Thank you again for the presentation.
Hi I am from the uk and I would be interested in your website as I was just diagnosed with PMR 3 months ago and I am so confused over trying to find out information from uk.
I had PMR and sadly I dx myself after an elderly person recognized my symptoms, sadly all the doctors and specialists who I went to just looked at my markers, blood work and labs and could not even help me. By coincidence I had prednisone for hammer toe about same time and that’s what stopped all the aches.. I was very disgusted with lack of care , interest and compassion of doctors
Are you able to get enough then to treat yourself? I'm accused of diagnosing myself too but hubby is a semi retird internist, so we muddle through. My PCP refuses to believe I have PMR, lol. Changed to Direct Primary car.e
Prednisone comes with a price = Side effects that can ruine Your daily life, feeling of weekness, insomnia, and inability to concentrate. PMR standard medicine is prednisone which has to be slowly down-graded every month. I am not a doctor but I´m sure he / she will agree.. Try to get basic doose, then to slowly down-grade the doose every week-month according to Your doctor`s advice. My self on from 25->20-> 15->10->7 mg over 18 months...still counting
I turned 50 and I feel the exact same 5 months ago I was very fit active and training at the gym everyday, never heard of this b3fore so I’m awaiting bloods confirmation I am absolutely terrified and so sad just like he says it is literally falling off a cliff! I am completely disabled and I am yet again lying awake in agony! xEx
Excellent presentation. I am a case of "refractory PMR" treated with prednisone initially with the subsequent introduction of methotrexate and later on leflunomide -- both were discontinued due to side effects or infections. My lowest effective dose of prednisone was 10 mg which was only achieved after 12 years of treatment with prednisone. Many relapses occurred during my 12 years on prednisone. Actemra (tocilizumab) was initiated on January 1st, 2019 and prednisone was discontinued one year later. PMR is in remission except for a relapse when Actemra wasn't available during Covid. I have minimal side effects from Actemra in 5+ years of treatment with Actemra. Attempts at decreasing my exposure to Actemra have been unsuccessful. I would like to stop Actemra but I never want to take prednisone again.
I was recently diagnosed and gave myself first injection of Actemra a few hours ago. I am grateful for your comment about your experience, I am a bit of a wreck. lol. Wishing you the best outcome, Mike.
I’m 51 and think I have been having this pain in my shoulders. I used to have rheumatoid arthritis with nodules and swelling in my joints but pretty much cured that through diet change so I’m assuming I can cure this by changing my diet
My GP started with 60 mg/dly, then 40 mg for a couple days and then 20 mg for three more days for a total of 15 days starting out. I have to wonder whether the dosages are too high.
If You have high levels of inflamation it`s priority nr 1 to get the inflamation-levels down (!!) as they can pressure heart and blood veins that severiusly damage your body with out inflamation supression medicine. PMR standard medicine is prednisolon. I am not a doctor but I´m sure he / she will agree.. Try then to slowly down-grade the prednisolone dose every month according to Your doctor`s advice
@@mander0505 Thanks, they were coming down with the dosages a little too fast, too little at the end, everthing returned. Had to see a rheumy. Starts me off at 20 for two weeks, try to taper to 15, if I feel lousy go back to 20. I'm wanting to go on Forteo the generic type to save bones due to its relative safety to Prolia with prednisone.
Just started steroids, trying to learn about this. 66 years old , male Left shoulder replacement in 2024, 2023 right shoulder tear. Very fit for my age, but now have hip soreness and tough getting out of bed. Full blood panel done on Friday and will find out Tuesday what it shows
My right shoulder started hurting from golf (I play year round). I started to get less active and one day I couldn’t get out of a chair! About 2-3 weeks later PCP diagnosed PMR. At the advice of a doctor friend I’m going to a RA and hopefully get some additional imaging to confirm the PMR. FWIW I was to get a knee replacement in two weeks and have decided to postpone considering the prednisone and inflammation complications. Based on the long term effects of prednisone wonder if I should have it sooner than later???
Thank you very much for a fascinating presentation. I was diagnosed with pmr in November 2021 and have spent time on the 'steroid flare rollercoaster'. Luckily I have since learned how to decrease steroids slowly without flaring and am down to 3mg per day of prednisolone (I am in the UK). I would like to include a link to this presentation on a website I am currently building. Thank you again for the presentation.
Hi I am from the uk and I would be interested in your website as I was just diagnosed with PMR 3 months ago and I am so confused over trying to find out information from uk.
I walked 18 holes of golf on Tuseday, felt great. Teo days later I couldn't get out of bed. Dx PMR.
I had PMR and sadly I dx myself after an elderly person recognized my symptoms, sadly all the doctors and specialists who I went to just looked at my markers, blood work and labs and could not even help me. By coincidence I had prednisone for hammer toe about same time and that’s what stopped all the aches.. I was very disgusted with lack of care , interest and compassion of doctors
Are you able to get enough then to treat yourself? I'm accused of diagnosing myself too but hubby is a semi retird internist, so we muddle through. My PCP refuses to believe I have PMR, lol. Changed to Direct Primary car.e
Prednisone comes with a price = Side effects that can ruine Your daily life, feeling of weekness, insomnia, and inability to concentrate. PMR standard medicine is prednisone which has to be slowly down-graded every month. I am not a doctor but I´m sure he / she will agree.. Try to get basic doose, then to slowly down-grade the doose every week-month according to Your doctor`s advice. My self on from 25->20-> 15->10->7 mg over 18 months...still counting
@@mander0505 I go about 1mg/month. Down to 3.5 and holding for as long as needed. About 16 months since it started
I turned 50 and I feel the exact same 5 months ago I was very fit active and training at the gym everyday, never heard of this b3fore so I’m awaiting bloods confirmation I am absolutely terrified and so sad just like he says it is literally falling off a cliff! I am completely disabled and I am yet again lying awake in agony! xEx
Excellent presentation. I am a case of "refractory PMR" treated with prednisone initially with the subsequent introduction of methotrexate and later on leflunomide -- both were discontinued due to side effects or infections.
My lowest effective dose of prednisone was 10 mg which was only achieved after 12 years of treatment with prednisone. Many relapses occurred during my 12 years on prednisone.
Actemra (tocilizumab) was initiated on January 1st, 2019 and prednisone was discontinued one year later. PMR is in remission except for a relapse when Actemra wasn't available during Covid. I have minimal side effects from Actemra in 5+ years of treatment with Actemra.
Attempts at decreasing my exposure to Actemra have been unsuccessful. I would like to stop Actemra but I never want to take prednisone again.
I was recently diagnosed and gave myself first injection of Actemra a few hours ago. I am grateful for your comment about your experience, I am a bit of a wreck. lol.
Wishing you the best outcome, Mike.
I’m 51 and think I have been having this pain in my shoulders. I used to have rheumatoid arthritis with nodules and swelling in my joints but pretty much cured that through diet change so I’m assuming I can cure this by changing my diet
I’m hopeful to cure mine as well by diet
My GP started with 60 mg/dly, then 40 mg for a couple days and then 20 mg for three more days for a total of 15 days starting out. I have to wonder whether the dosages are too high.
If You have high levels of inflamation it`s priority nr 1 to get the inflamation-levels down (!!) as they can pressure heart and blood veins that severiusly damage your body with out inflamation supression medicine. PMR standard medicine is prednisolon. I am not a doctor but I´m sure he / she will agree.. Try then to slowly down-grade the prednisolone dose every month according to Your doctor`s advice
@@mander0505 Thanks, they were coming down with the dosages a little too fast, too little at the end, everthing returned. Had to see a rheumy. Starts me off at 20 for two weeks, try to taper to 15, if I feel lousy go back to 20. I'm wanting to go on Forteo the generic type to save bones due to its relative safety to Prolia with prednisone.
Just started steroids, trying to learn about this.
66 years old , male
Left shoulder replacement in 2024, 2023 right shoulder tear.
Very fit for my age, but now have hip soreness and tough getting out of bed.
Full blood panel done on Friday and will find out Tuesday what it shows
I also tore my knee cartilage and I suspect the inflammation has spread I’m not a dr but I’m guessing it could be related
My right shoulder started hurting from golf (I play year round). I started to get less active and one day I couldn’t get out of a chair! About 2-3 weeks later PCP diagnosed PMR. At the advice of a doctor friend I’m going to a RA and hopefully get some additional imaging to confirm the PMR. FWIW I was to get a knee replacement in two weeks and have decided to postpone considering the prednisone and inflammation complications. Based on the long term effects of prednisone wonder if I should have it sooner than later???
PS like you think my arm injury could have brought this on.