Rudynate Posted August 10, 2022 Share Posted August 10, 2022 Im wondering if any forum members are living with autoimmune disorders, such as RA. I was just dx'd with polymyalgia - which is sort of RA light - stiff, sore joints, low-grade fever, no appetite, vascular inflammation. Supposedly it will go away eventually - maybe in a year, maybe in 3 years. Treatment is a small daily dose of corticosteroids. I'm in the process of figuring life out going forward. Link to comment Share on other sites More sharing options...
craigville beach Posted August 10, 2022 Share Posted August 10, 2022 16 minutes ago, Rudynate said: Im wondering if any forum members are living with autoimmune disorders, such as RA. I was just dx'd with polymyalgia - which is sort of RA light - stiff, sore joints, low-grade fever, no appetite, vascular inflammation. Supposedly it will go away eventually - maybe in a year, maybe in 3 years. Treatment is a small daily dose of corticosteroids. I'm in the process of figuring life out going forward. I have RA. Almost 30 years ago I looked like the Michelin tire character. My entire body was inflamed. I was on a steroid treatment at first then moved to Methotrexate, which I ended up on for 6 years. Eventually my swelling went down and the RA was pushed in remission. Since then I have occasional flares but am able to keep moving about. I have to keep active every day or I ache and am stiff everywhere. Link to comment Share on other sites More sharing options...
Rudynate Posted August 10, 2022 Author Share Posted August 10, 2022 Thank you for the information. - I'm glad you're doing well. A characteristic of polymyalgia is that the response to even a small dose of corticosteroids is dramatic - my daily dose is tiny - 5mg x 3. I have read that methotrexate is used as a fallback if the corticosteroids don't work well. Tocilizumab is in stage II trials. Link to comment Share on other sites More sharing options...
Guest Posted September 14, 2022 Share Posted September 14, 2022 It hasn't been generally accepted that PMR is an autoimmune disease, which is very good news for you since most autoimmune diseases are chronic to permanent, and PMR almost always goes away eventually. Treatment also costs a hell of a lot less, usually pennies a day rather than the $100,00/year+ that funds the commercials for treatments of all of those awful autoimmune disease you hear advertised on TV (RA, psoriasis, ulcerative colitis, etc.). Link to comment Share on other sites More sharing options...
+ LIguy Posted September 15, 2022 Share Posted September 15, 2022 I have Immune thrombocytopenia (ITP)...went into remission 30 years ago until 5 years ago after a week of heparin caused a recurrence and I ended up in an ER with a 2k platelet count which started 2 horrible years on prednisone and endless tapers trying to get adrenals back to working order. Link to comment Share on other sites More sharing options...
Rudynate Posted September 15, 2022 Author Share Posted September 15, 2022 Sorry to hear that. My father had a similar problem, He had a nosebleed that wouldn't stop. His doc's office told me to take him to the ER, where they found that his platelet count was nearly undetectable, He had to have platelet transfusions and went through a long ordeal with corticosteroids. Link to comment Share on other sites More sharing options...
Rudynate Posted September 15, 2022 Author Share Posted September 15, 2022 17 hours ago, Unicorn said: It hasn't been generally accepted that PMR is an autoimmune disease, which is very good news for you since most autoimmune diseases are chronic to permanent, and PMR almost always goes away eventually. Treatment also costs a hell of a lot less, usually pennies a day rather than the $100,00/year+ that funds the commercials for treatments of all of those awful autoimmune disease you hear advertised on TV (RA, psoriasis, ulcerative colitis, etc.). I'm certainly hoping it will go into remission, sooner rather than later, but my rheumatologist isn't quite as certain as you are - he says that "some people" do go into remission. Link to comment Share on other sites More sharing options...
Guest Posted September 15, 2022 Share Posted September 15, 2022 A rheumatologist said "some people"? I hope you misheard him, because he's got to know better. Almost everyone goes into remission on steroids, and in most cases it's gone without meds in a year or two, though it can persist a few years. The condition's not that rare. I had half a dozen patients with it over the years, and only one had it for over 2 years. https://www.mountsinai.org/health-library/diseases-conditions/polymyalgia-rheumatica "For most people, PMR goes away with treatment after 1 to 2 years. You might be able to stop taking medicines after this point, but check with your provider first...." Long-persisting symptoms are the exception, not the common situation. https://ard.bmj.com/content/40/1/1 "...97% of patients required corticosteroids for at least 1 year; 32% of patients still required 10 mg of prednisone or more after 1 year..." Link to comment Share on other sites More sharing options...
Rudynate Posted September 15, 2022 Author Share Posted September 15, 2022 Well of course they go into remission on steroids. The steroids are suppressing the inflammation. To me, "remission" means no inflammation and no steroids. If steroids are part of the path to no inflammation and no steroids, I can live with that. Link to comment Share on other sites More sharing options...
Guest Posted September 16, 2022 Share Posted September 16, 2022 (edited) https://medical-dictionary.thefreedictionary.com/remission remission [re-mish´un] diminution or abatement of the symptoms of a disease; the period during which such diminution occurs. The term you may be thinking of is cure, which also happens with most PMR patients eventually. Edited September 16, 2022 by Unicorn Link to comment Share on other sites More sharing options...
Rudynate Posted September 16, 2022 Author Share Posted September 16, 2022 Well, "remission" isn't in the average person's vocabulary. It certainly wasn't part of mine. Link to comment Share on other sites More sharing options...
Rudynate Posted October 13, 2022 Author Share Posted October 13, 2022 On 9/14/2022 at 2:30 PM, Unicorn said: It hasn't been generally accepted that PMR is an autoimmune disease, which is very good news for you since most autoimmune diseases are chronic to permanent, and PMR almost always goes away eventually. Treatment also costs a hell of a lot less, usually pennies a day rather than the $100,00/year+ that funds the commercials for treatments of all of those awful autoimmune disease you hear advertised on TV (RA, psoriasis, ulcerative colitis, etc.). That is incorrect. It is widely accepted that polymyalgia is an autoinflammatory disease. The inflammatory response is a function of the intrinsic immune system. And polymyalgia is commonly referred to, even in peer-reviewed literature, as an autoimmune disease. It is true that it does not appear to be a disease of the adaptive immune system. So, If you are going to be persnickety and insist on a narrow definition of autoimmune as being a disease of the adaptive immune system, it is not an autoimmune disease, but you seem to be out of step with the rest of the world Link to comment Share on other sites More sharing options...
Guest Posted October 13, 2022 Share Posted October 13, 2022 12 minutes ago, Rudynate said: That is incorrect. It is widely accepted that polymyalgia is an autoinflammatory disease. The inflammatory response is a function of the intrinsic immune system. And polymyalgia is commonly referred to, even in peer-reviewed literature, as an autoimmune disease. It is true that it does not appear to be a disease of the adaptive immune system. So, If you are going to be persnickety and insist on a narrow definition of autoimmune as being a disease of the adaptive immune system, it is not an autoimmune disease, but you seem to be out of step with the rest of the world It's quite controversial, at best: https://en.wikipedia.org/wiki/List_of_autoimmune_diseases Polymyalgia rheumatica Limited, L, Y L Evidence to indicate autoimmunity is extremely limited or circumstantial. Link to comment Share on other sites More sharing options...
Rudynate Posted October 13, 2022 Author Share Posted October 13, 2022 (edited) 45 minutes ago, Unicorn said: It's quite controversial, at best: https://en.wikipedia.org/wiki/List_of_autoimmune_diseases Polymyalgia rheumatica Limited, L, Y L Evidence to indicate autoimmunity is extremely limited or circumstantial. Is Wikipedia the best evidence you can find? Given your usual insistence on well-vetted information, you seem to be slumming. The Wikipedia chart did not include polymyalgia in its list of non-autoimmune diseases. Edited October 13, 2022 by Rudynate Link to comment Share on other sites More sharing options...
Guest Posted October 13, 2022 Share Posted October 13, 2022 (edited) 40 minutes ago, Rudynate said: Is Wikipedia the best evidence you can find? Given your usual insistence on well-vetted information, you seem to be slumming. The Wikipedia chart did not include polymyalgia in its list of non-autoimmune diseases. Wikipedia, while not a primary source, is usually well-vetted. This article in the British Medical Journal states PMR is more likely autoinflammatory than autoimmune: https://rmdopen.bmj.com/content/4/1/e000694 As mentioned in Wikipedia, evidence of PMR being autoimmune is quite limited. As I mentioned previously, it's a good thing not to have an autoimmune disease, because they're usually fairly permanent, as opposed to petering out in a year or two. Stop complaining. Edited October 13, 2022 by Unicorn Link to comment Share on other sites More sharing options...
Rudynate Posted October 14, 2022 Author Share Posted October 14, 2022 5 hours ago, Unicorn said: Wikipedia, while not a primary source, is usually well-vetted. This article in the British Medical Journal states PMR is more likely autoinflammatory than autoimmune: https://rmdopen.bmj.com/content/4/1/e000694 As mentioned in Wikipedia, evidence of PMR being autoimmune is quite limited. As I mentioned previously, it's a good thing not to have an autoimmune disease, because they're usually fairly permanent, as opposed to petering out in a year or two. Stop complaining. You can't take yes for answer, that's what I said. mike carey 1 Link to comment Share on other sites More sharing options...
+ Tygerscent Posted October 14, 2022 Share Posted October 14, 2022 On 8/10/2022 at 12:43 PM, Rudynate said: Im wondering if any forum members are living with autoimmune disorders, such as RA. I was just dx'd with polymyalgia - which is sort of RA light - stiff, sore joints, low-grade fever, no appetite, vascular inflammation. Supposedly it will go away eventually - maybe in a year, maybe in 3 years. Treatment is a small daily dose of corticosteroids. I'm in the process of figuring life out going forward. I know a number of people embracing the considerations of RA… if you have any questions text me privately. I would be happy to explore your options and questions with you~ Link to comment Share on other sites More sharing options...
+ WilliamM Posted October 15, 2022 Share Posted October 15, 2022 On 10/13/2022 at 3:00 PM, Unicorn said: Wikipedia, while not a primary source, is usually well-vetted. This article in the British Medical Journal states PMR is more likely autoinflammatory than autoimmune: https://rmdopen.bmj.com/content/4/1/e000694 As mentioned in Wikipedia, evidence of PMR being autoimmune is quite limited. As I mentioned previously, it's a good thing not to have an autoimmune disease, because they're usually fairly permanent, as opposed to petering out in a year or two. Stop complaining. In my experience, college professors warn students against Wikipedia. Link to comment Share on other sites More sharing options...
Rudynate Posted October 18, 2022 Author Share Posted October 18, 2022 On 10/13/2022 at 12:00 PM, Unicorn said: Stop complaining. Unicorn may have revealed what is top of mind for him in his interactions with patients. Link to comment Share on other sites More sharing options...
Rudynate Posted October 18, 2022 Author Share Posted October 18, 2022 (edited) 8 hours ago, Rudynate said: Unicorn may have revealed what is top of mind for him in his interactions with patients. You use that eyeroll emoji a lot don't you? I wonder what that says about you? Edited October 18, 2022 by Rudynate Luv2play 1 Link to comment Share on other sites More sharing options...
Rudynate Posted October 28, 2022 Author Share Posted October 28, 2022 On 8/10/2022 at 10:07 AM, craigville beach said: I have RA. Almost 30 years ago I looked like the Michelin tire character. My entire body was inflamed. I was on a steroid treatment at first then moved to Methotrexate, which I ended up on for 6 years. Eventually my swelling went down and the RA was pushed in remission. Since then I have occasional flares but am able to keep moving about. I have to keep active every day or I ache and am stiff everywhere. I have a new diagnosis - RA - started methotrexate two weeks ago. As soon as I get to my full methotrexate dose, the joint doc says we will start to taper the corticosteroid. craigville beach 1 Link to comment Share on other sites More sharing options...
craigville beach Posted October 28, 2022 Share Posted October 28, 2022 2 hours ago, Rudynate said: I have a new diagnosis - RA - started methotrexate two weeks ago. As soon as I get to my full methotrexate dose, the joint doc says we will start to taper the corticosteroid. in addition to methotrexate i would take Leucovorin within 6 hours. it was supposed to help with the side affects good luck with your treatment program Link to comment Share on other sites More sharing options...
Rudynate Posted October 28, 2022 Author Share Posted October 28, 2022 2 minutes ago, craigville beach said: in addition to methotrexate i would take Leucovorin within 6 hours. it was supposed to help with the side affects good luck with your treatment program I take folic acid every day. I think I could replace it with L-methyl folate and it might work better. I also may ask the joint doc for a script for Leucovorin.. Thanks for your advice. Link to comment Share on other sites More sharing options...
Mercury Posted October 29, 2022 Share Posted October 29, 2022 11 hours ago, Rudynate said: I take folic acid every day. I think I could replace it with L-methyl folate and it might work better. I also may ask the joint doc for a script for Leucovorin.. Thanks for your advice. What does folic acid or L-methyl folate do for your condition? Link to comment Share on other sites More sharing options...
Rudynate Posted October 29, 2022 Author Share Posted October 29, 2022 4 hours ago, Mercury said: What does folic acid or L-methyl folate do for your condition? It is supposed to reduce side effects from the drug I take for the RA. Mercury 1 Link to comment Share on other sites More sharing options...
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