I began with severe PMR and it ended up with Sever RA , been on medrol and Orencia infusions for the last two years, as if that wasn't enough I am having neuropathy as well. I know there are those who would love to have this disease but it's rough. Stay positive in your mind for those suffering.
Thank you for sharing your journey. It's truly inspiring to see how you maintain a positive mindset despite the challenges you're facing. Your strength is commendable!
This is great! I was diagnosed with this and I've seen several doctors here in Virginia and they have no idea what that is even though it's in my records from my Dr I saw in Maryland. He was top notch and as of 2 years ago was offered a position at the N I H . I however became allergic to big dose 25 MG dosage of prednisone when I was given it for my severe inflammation. My face turned red I couldn't breathe my face and eyes swelled. But ive those little boxes of steroids where you take 5 one day then 4 then 3 etc and never had a problem.. so I don't know. All I know is I'm not taking those again. I had severe head pain too. I wish you practiced in Virginia. I've been fighting this stuff for 15 years
Thank you for sharing your experience! It's frustrating when doctors don't have the answers we need. Hang in there, and I hope you find the right solution soon.
That is a Medrol Dose Pack. Ask for medroxy-prednosolone instead of prednisone. Prednisone has to be converted in the liver into prednisolone. In the UK that is all they use.
Dr great summary of PMR .I had it and was treated with prednisone which helped greatly but I wish I was offered some of the newer meds that you mentioned during the tapering process. I wish I could have seen you.Keep up the good work.
I wish you lived in Canada❤ . I have had chronic pain and weakness since about 23 years old. My muscles and tendons/ ligaments right down to the bone it feels. Blood tests have always shown inflammation. I was told by on GP that I had fibromyalgia but was never sent to a specialist because of the years it would take to get in. I also have severe spinal stenosis and I am waiting my 5th back surgery. I am good for approx a year then it starts over growing bone and spondilythesis or/ and retrolythesis. I am 55 yrs old and would love to live a pain free day🥲. This has affected my quality of life and caused severe depression. I have had bld work for runaround arthritis and my dr says I don’t have it but have osteoarthritis. The muscular pain is so extreme . If I lift or do even minor strenuous tasks the next day or 3 rd day is very debilitating for long periods of time. I am lost and have no answers. Can you please give your view on this ?Thank you so very much❤
One other problem with long term prednisone is potential adrenal insufficiency. Your cortisol level could drop which makes you feel worse than the PMR. The cause of low cortisol levels is also the cure.....more prednisone. They can't give you a hormonal test until your down to 5 mg. Its a very frustrating dilemma.
Is that right? Where are you? I have no medical care except my internist husband, who has his own health problems lately. I am not feeling normal after getting down to 3.5 prednisone, so determined to stay with that dose for at least a month. This hurts! I could have hit an adrenal barrier. I dumped my incompetent dishonest family doctor last week for direct primary care.
California. According to my UCLA endocrinologist, a low cortisol level isn't cause for concern while you're on preednisone, because it makes up for the lack of cortisol produced by your adrenal glands. The problem is after you wean off prednisone, your glands take a while to start producing again. Personally I will be starting a drug called Kevzara in another month. One shot every 2 weeks. It dampens your immune response to Polymaelgia as you completely wean off prednisone. I've been on prednisone 4 years. The drawback is a compromised immune system, so you have to careful. I believe the success rate is about 40%, which doesn't sound encouraging, except were willing to give it a go after years of suffering.
@@timmurphy3609 See out here I cant imagine what it would take to get a endocrinologist, since I can't even get a rheum. I thought prednisone also compromised immunity. I got very mild shingles after starting 20mg.
I was diagnosed with pmr tested with prednisone. From one day normal in the morning then barely able to walk from pain in the evening, couldn't move because of pain, after seeing doctor to test, 3 hours after 25 mg pred. TOTALLY pain free. How can this be?
I am 55 and have these symptoms in my biceps, shoulders and neck. A lot of popping going on too. Can this come on do to stress? I have otherwise been in excellent health, but a lot of stress the past few years. Does it ever go away on its own or does exercise and weights help? Thank you
Thank you, this was very helpful. I am just moving from 10 mg prednisone and the PMR has flared so I’m back to 10. The next month will determine if I need. The spare steroid meds.
Hello, l would like to ask, could Colhicin affect testing for reumatology diseases. If someone takes Colhicin and has to do testing for most reumatology diseases, could Colhicin affect testing? Thank you.
Hello, l would like to ask a question. I have fatigue, reccurent pericarditis, light proteinuria(180), and amiloid s in blood that is high. Reumatologist, imunologist tests are negative except from ANA. I stay out of breath easily, had cosacki virus earlier. Could all this be because of autoimun reccurent pericarditis or it is because of reuamtologist problem. Thank you in advance.
Thank you for sharing your experience with us. It's important to seek medical advice from professionals to get a proper diagnosis and treatment. Wishing you all the best in finding the answers you're looking for!
It's always a good idea to consult with your doctor before making any changes to your medication regimen. They will be able to provide you with the best advice based on your specific situation.
Lip biopsy was positive for chronnic inflammation. They not sure if it is sjorgrens. The doctors have no clue here. My right shoulder stiffens everytime i dont take my xefo.
I'm sorry to hear that you're going through this uncertainty with your health. It can be frustrating when doctors don't have all the answers. Hang in there and keep advocating for yourself.
I have been on predisone but my body can only take max 5mg predisone. I start vomiting and have severe reactions like rashes. I was also given 28 injections, 12 of cortisone ( neuro did not tell me which one) and 12 of botox. It helped a bit with the movement of my right arm but i now have lower lip inflammation. And my upper right side of my gums and sinuses are swollen. I take xefo 4mg, have come down from 8mg but when it wears off i am in the same pain. Last week i had conjuntivitis in my right eye. It is my right side that is affected. My right side of face, neck and shoulder. I have tried solumedrol but my body could not take it. I have been referred to a rhuematologist but she can only see me in july. I have tested positive for ankolosing spondylitis.
I'm 56, have PMR - since Feb last year...dropped to 7.5mgs prednisone so far, after starting on 17.5mgs...thank goodness for cortisone..At the start, I went 3 months thinking i somehow strained" myself. Idiot. 😄....should be done by end of year.
There are several alternatives to statins that your doctor can recommend based on your individual needs and health condition. It's important to consult with a healthcare professional to determine the best medication for you.
I started taking creatinine for muscles because I thought it would help my weak muscles. Does it cause kidney problems? Funny my BUN creatinine was high 29. Doc thought it was from inflammation from pmr.
I began with severe PMR and it ended up with Sever RA , been on medrol and Orencia infusions for the last two years, as if that wasn't enough I am having neuropathy as well. I know there are those who would love to have this disease but it's rough. Stay positive in your mind for those suffering.
Thank you for sharing your journey. It's truly inspiring to see how you maintain a positive mindset despite the challenges you're facing. Your strength is commendable!
It hasn't been officially diagnosed but I'm 90% sure I have PMR. 73 y/o retired physician. This talk was hugely helpful thank you!
Glad it was helpful!
Let me know if I can help you with anything
As a dr. Which new medicine do you think is the safest way to go?
This is great! I was diagnosed with this and I've seen several doctors here in Virginia and they have no idea what that is even though it's in my records from my Dr I saw in Maryland. He was top notch and as of 2 years ago was offered a position at the N I H . I however became allergic to big dose 25 MG dosage of prednisone when I was given it for my severe inflammation. My face turned red I couldn't breathe my face and eyes swelled.
But ive those little boxes of steroids where you take 5 one day then 4 then 3 etc and never had a problem.. so I don't know. All I know is I'm not taking those again. I had severe head pain too.
I wish you practiced in Virginia. I've been fighting this stuff for 15 years
Thank you for sharing your experience! It's frustrating when doctors don't have the answers we need. Hang in there, and I hope you find the right solution soon.
That is a Medrol Dose Pack. Ask for medroxy-prednosolone instead of prednisone. Prednisone has to be converted in the liver into prednisolone. In the UK that is all they use.
Yes docter I have this and also fybromyalgia I hope there are new treatments coz I’m in so much pain ❤ Thankyou dr
hang in there!
Dr great summary of PMR .I had it and was treated with prednisone which helped greatly but I wish I was offered some of the newer meds that you mentioned during the tapering process. I wish I could have seen you.Keep up the good work.
Thank you for sharing your experience! I'm glad to hear that prednisone helped you, and I appreciate your feedback on the newer meds.
Is your PMR gone after being treated with prednisone? Thank you.
I wish you lived in Canada❤ . I have had chronic pain and weakness since about 23 years old. My muscles and tendons/ ligaments right down to the bone it feels. Blood tests have always shown inflammation. I was told by on GP that I had fibromyalgia but was never sent to a specialist because of the years it would take to get in. I also have severe spinal stenosis and I am waiting my 5th back surgery. I am good for approx a year then it starts over growing bone and spondilythesis or/ and retrolythesis. I am 55 yrs old and would love to live a pain free day🥲. This has affected my quality of life and caused severe depression. I have had bld work for runaround arthritis and my dr says I don’t have it but have osteoarthritis. The muscular pain is so extreme . If I lift or do even minor strenuous tasks the next day or 3 rd day is very debilitating for long periods of time. I am lost and have no answers. Can you please give your view on this ?Thank you so very much❤
look at Dr Andrea Furlan Channel, she is in Canada and she can help you!
ruclips.net/user/DrAndreaFurlan
Thank you soooo very much ! U r amazing ! Usually people don’t answer messages but you do ❤️ God Bless🌈🙏❤️
One other problem with long term prednisone is potential adrenal insufficiency. Your cortisol level could drop which makes you feel worse than the PMR. The cause of low cortisol levels is also the cure.....more prednisone. They can't give you a hormonal test until your down to 5 mg. Its a very frustrating dilemma.
Is that right? Where are you? I have no medical care except my internist husband, who has his own health problems lately. I am not feeling normal after getting down to 3.5 prednisone, so determined to stay with that dose for at least a month. This hurts!
I could have hit an adrenal barrier. I dumped my incompetent dishonest family doctor last week for direct primary care.
California. According to my UCLA endocrinologist, a low cortisol level isn't cause for concern while you're on preednisone, because it makes up for the lack of cortisol produced by your adrenal glands. The problem is after you wean off prednisone, your glands take a while to start producing again.
Personally I will be starting a drug called Kevzara in another month. One shot every 2 weeks. It dampens your immune response to Polymaelgia as you completely wean off prednisone. I've been on prednisone 4 years.
The drawback is a compromised immune system, so you have to careful. I believe the success rate is about 40%, which doesn't sound encouraging, except were willing to give it a go after years of suffering.
@@timmurphy3609 See out here I cant imagine what it would take to get a endocrinologist, since I can't even get a rheum. I thought prednisone also compromised immunity. I got very mild shingles after starting 20mg.
I was just diagnosed this morning. I’m 59, which took my docs by surprise.
I'm sorry to hear about your diagnosis. Stay strong.
I was diagnosed with pmr tested with prednisone. From one day normal in the morning then barely able to walk from pain in the evening, couldn't move because of pain, after seeing doctor to test, 3 hours after 25 mg pred. TOTALLY pain free. How can this be?
Yes prednisone is a miracle drug!
I am 55 and have these symptoms in my biceps, shoulders and neck. A lot of popping going on too. Can this come on do to stress? I have otherwise been in excellent health, but a lot of stress the past few years. Does it ever go away on its own or does exercise and weights help? Thank you
You need an evaluation and a proper diagnosis first, then address the specific questions!
Thank you, this was very helpful. I am just moving from 10 mg prednisone and the PMR has flared so I’m back to 10. The next month will determine if I need. The spare steroid meds.
Great
Is anybody keeping track of how many people are diagnosed with PMR after mRNA shots?
5:24 thank you for your video, it gave me hope that I can continue to work with the right treatment.
thank you for watching
I understood arthritis drugs do mot work on PMR. But his does?
yes they work
Hello, l would like to ask, could Colhicin affect testing for reumatology diseases. If someone takes Colhicin and has to do testing for most reumatology diseases, could Colhicin affect testing? Thank you.
NO! that will not affect the labs!
Hello, l would like to ask a question. I have fatigue, reccurent pericarditis, light proteinuria(180), and amiloid s in blood that is high. Reumatologist, imunologist tests are negative except from ANA. I stay out of breath easily, had cosacki virus earlier. Could all this be because of autoimun reccurent pericarditis or it is because of reuamtologist problem. Thank you in advance.
Thank you for sharing your experience with us. It's important to seek medical advice from professionals to get a proper diagnosis and treatment. Wishing you all the best in finding the answers you're looking for!
Should you taper the prednisone if the pain is still present before taking meds?
It's always a good idea to consult with your doctor before making any changes to your medication regimen. They will be able to provide you with the best advice based on your specific situation.
Lip biopsy was positive for chronnic inflammation. They not sure if it is sjorgrens. The doctors have no clue here. My right shoulder stiffens everytime i dont take my xefo.
I'm sorry to hear that you're going through this uncertainty with your health. It can be frustrating when doctors don't have all the answers. Hang in there and keep advocating for yourself.
I have been on predisone but my body can only take max 5mg predisone. I start vomiting and have severe reactions like rashes.
I was also given 28 injections, 12 of cortisone ( neuro did not tell me which one) and 12 of botox. It helped a bit with the movement of my right arm but i now have lower lip inflammation. And my upper right side of my gums and sinuses are swollen. I take xefo 4mg, have come down from 8mg but when it wears off i am in the same pain. Last week i had conjuntivitis in my right eye. It is my right side that is affected. My right side of face, neck and shoulder.
I have tried solumedrol but my body could not take it.
I have been referred to a rhuematologist but she can only see me in july.
I have tested positive for ankolosing spondylitis.
Thank you for watching my channel!
I'm 56, have PMR - since Feb last year...dropped to 7.5mgs prednisone so far, after starting on 17.5mgs...thank goodness for cortisone..At the start, I went 3 months thinking i somehow strained" myself. Idiot. 😄....should be done by end of year.
Keep pushing through, you're making great progress!
What cholesterol medication can you take instead of Statins?
There are several alternatives to statins that your doctor can recommend based on your individual needs and health condition. It's important to consult with a healthcare professional to determine the best medication for you.
Have there been any studies on creatine’s effect on PMR?
not usually affecting kidneys!
I started taking creatinine for muscles because I thought it would help my weak muscles. Does it cause kidney problems? Funny my BUN creatinine was high 29. Doc thought it was from inflammation from pmr.
Watch for TSW! Sooner the pain than the poison and high risk of contracting this appalling condition!!
Thank you for sharing your thoughts!