First Time to Post ....I am new to The Forum !

I am "officially" diagnosed with PMR now for 5 years. Looking back on my life , I am almost positive that I have had PMR and low Adrenals for many years. Like many of you, , none of my docs had recognized the symptoms to be PMR. The closest diagnosis given to me years ago was : Fibromyalgia. I live in California , USA. So I use prednisone. I am currently taking 4 mg. Pred.. ( long process to get there). I own and ride horses , they keep my spirits high and a desire to be as active as I can manage. (they are my best friends) Like most of you, these years with PMR have been a struggle because I have always been a very active person and it is my biggest failure to not pace myself and then over doing it. I stumbled upon this Forum a few months ago just out of desperation... looking for help and answers. I just appreciate you all so much! All the wonderful info has made life with PMR tolerable ( sometimes) . Thank you all so much! How long has PMR been an official diagnosis ? Is it a newer disease ? Some docs have never heard of it ?! Thank you for being here and available to us all.

Suzanne

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  • It was originally described in the late 1880s. Its association with GCA not definitely accepted until mid 1960s. A while ago I found the original name for the ailment - something very unflattering, senile something or other, but can't find it right now.

    ncbi.nlm.nih.gov/pubmed/109...

  • Found! Senile rheumatic gout. Also someone in the 60s thought PMR should be renamed to senile arteritis. As if getting sick wasn't bad enough....

    aafp.org/afp/2000/0815/p789...

    the-rheumatologist.org/arti...

    tandfonline.com/doi/abs/10....

  • Thank you again HeronNS for passing along to me the links to such helpful and useful info. suzanne

  • Greetings Suzanne457 - welcome to an exclusive 'club' that none of us intended or wanted to join!

    All I can say is that this forum is an absolute Goldmine of trusted advice, technical expertise and emotional support around PMR - and with some fun in between the more serious stuff. You are in good company here.

    You don't need to feel a failure about either the 'pacing' (steroid tapering?) and / or trying to maintain an active life in the meantime. Yes, both PMR - and the process of managing it with steroids - are very challenging physically and psychologically. But many of us can still have a fulfilling life despite it. There are many success stories in between the tough bits.

    Keep riding those horses, just take it easy and keep close to this forum. You'll get plenty of support and encouragement along the way!

    Best wishes and stay in touch from across the Pond ;-)

    MB :-)

  • Thank you so much HeronNS for all of those wonderful links to the PMR and GCA info ! I read all of the info with great interest... especially what was written by Dr. Docken. You have so many good resources .

    Thank you for your warm welcome from " across the pond " Markbenj...57.

    Suzanne457

  • Hi dear...there are worse things. Like you I manage the PMR and my beloved horses- they are a passion aren't they? But keep us going and are the reason for making the effort. The worst thing is people trying to help by saying"you should stop riding etc etc". At least you have a better climate!

  • Yes our horses are definitely our "passion"....they keep me moving . You too! ( oh yes...I am very blessed here in Calif. with good weather) Suzanne

  • As Heron said - been around as a diagnosis since 1888, even if it did masquerade under various names. It's only relatively recently though that it has been recognised as probably being an autoimmune-mediated vasculitis (inflamed blood vessels) due to its close relationship with GCA. But there is still dispute about that.

    US doctors do seem very unaware of it though. I wonder if it has anything to do with the restriction of many of the retired to Medicare doctors and that many others don't see so many elderly patients to become familiar with it in the first place. And then, when younger patients come along they have no idea? Plus, they obviously don't recognise the fact that the average age of diagnosis being over 70 does mean under 70s must get it too...

  • Thank you so much PMRpro for the great information you sent to me concerning the origins of PMR. Also your observations about why so many docs that I have encountered here in Cal.may not be aware of the PMR diagnosis , made sense to me. I had not considered Medicare implications possibly effecting the diagnosing of PMR ( older patients only being seen). Interesting for me has been that my "youngish" Opthamalogist has kept a very close watch on my vision for years now on HIS insistence ...he takes PMR and the possible consequences very seriously .

    I think that I have noticed a post of yours where you refer to a prednisone drug that is a time release that is set for early in the AM when all of the inflamatory cytokines (?) are put into the body ( Or something like that. ) I have not heard of a drug such as that but it sounds like a good one ! Can you elaborate on that drug (if it does exist ) or am I making a memory ooops ?

    ps I have been taking my Pred. between 4&6 am just recently per your posted suggestion to us on the Forum...I have noticed a positive difference !

    Thank you so much.....Suzanne

  • It is just prednisone in a coating that takes 4 hours to split open and deposit the pred in the stomach for absorption. In the USA it is marketed as Rayos. It means you can take it before bed and it is the same as taking it at 2am which a study showed was the best time to take pred for maximum relief of morning stiffness. You aren't far behind taking it at 4am!

  • Thanks for the info about Rayos....I will ask my Rheumatologist about it. Suzanne

  • Suzanne457

    Hi Suzanne, I am in California too and had it misdiagnosed the first time I had it and after 2 1/2 years it went into remission and after 12 or 13 years it came back and I could not see an RA for 2 months and the mds assistant was fresh out of college and I suffered horribly as a result. I hope you did not and welcome you to the club.

  • Hi Ronswife ....it is nice to meet a PMR patient who is from calif also. I have not met anyone yet locally who has PMR. It sounds like you have had quite a struggle with this illness. I am very blessed with a very good and caring Rheumatologist who IS local. Most of her patients have R. A. so even her knowledge of PMR is sketchy at times. Thank you for your warm welcome to the "Club"

    Suzanne

  • Hello Suzanne and welcome to this brilliant 'club'. Poor you being poorly with PMR for such a long time and it not being recognized for many years. I had never heard of PMR and I don't think my GP was too sure when I first went to her over two years ago with all the usual aches and pains of PMR. It was my Rheumie who finally 'suggested' it could be PMR and put me on Pred, the miracle drug ! Now down to 5mg from 15mg and feeling o.k but it is this forum that's helped me the most. The help and answers has been all I need to help me through this awful condition. Stay with us Suzanne, it covers quite substantially all aspects of PMR. What one person doesn't know another will. I need my daily fix of this forum and PMRpro and Dorset Lady will be here most days with their excellent knowledge and friendly helpfulness. Good Luck.......Mazz

  • Thank you Mzzz...for the kind welcome to the "Club". Everyone has been welcoming me. The friendliness is irristible considering most everyone is struggling with their own health issues. Thank you for your personal story concerning PMR. I will most certainly be "staying". Suzanne

  • I was initially misdiagnosed too! 2 dr's were so sure I had gout because of the cloudy fluid that was extracted from my knee due to an injury that I believe woke up PMR in my body. With both dr's (Orthopaedic) I said "no way could this be gout because of my clean eating and excellent health". Both tests of course came back negative and left dr's baffled. Not only did I have unnessary scoping of my knee, it just agrevated what was going on in my body. God, when I think back about how much pain I was in I cringe. 51 years old using a walker! Anyway my GP who knows me quite well knew something was off and ran a full panel on me and sent me straight to a Rheumolologist. it has been a year since the knee injury. I am on Rayos (time released prednisone) and unfortunately stuck at 14mg but I am grateful that I can still work and live "almost" a normal life.

  • Hello Marie... What a journey you have been on! So glad to hear that you are no longer using a " walker" and have now a more normal life. I am not familiar with the time released drug "Rayos" It sounds like a great idea....time released....prednisone ??

    Suzanne

  • Yes, they are coated. You take RAYOS at 10pm and the medication releases early in AM when inflammation is at its peak. I'm in the US (NY) so it should be available to you.

  • Depends on the insurance - it costs megabucks in the US!

  • I'm so grateful, my insurance covers 100%.

  • Thanks for the info about purchasing Rayos in US , apparently it can be pricey though. I like the idea of the Pred.release at the right time in AM when the inflammation is at the highest. Great idea ! I am going to mention Rayos to my Rheumatologist.

    Suzanne

  • I get up at 4:45am for work. Because of the time release morning is my best time. It has allowed me to not miss much work.

  • Hi Suzanne

    This is a heck of a disease. Hard to pinpoint the cause , so hard to give advice about what will help. And no agreement from Dr.'s about dose of prednisone that will work (but it sounds like that is changing). 2 years ago when I was diagnosed my Dr. wanted to start me on 40 mg. I suggested 20 because I had done lots of reading on this website, and felt that my case was not as serious as others. So, she started me on 15??!! I had instant relief - like within hours of my first dose, and I have had no flares and am dead slow tapering and down to 1 mg. I have been very fortunate, with 100 % pain relief (before prednisone, I couldn't roll over in bed, couldn't get out of bed, couldn't tie my shoes, ,had great difficulty lifting my arms, and even dealing cards was uncomfortable. I tried many alternatives to prednisone - acupuncture, green fasts, worked with a naturopath.....Nothing helped, and finally one day I felt just ill all over and went to the Dr. to get prednisone (My tests were normal so she was reluctant to give me a diagnosis and encouraged me to try natural alternatives.) I am cautious about my possible burnout of PMR, as I know people who have been off prednisone for 3 months and had a relapse (3 years in a row!!) And then of course, you can be symptom free for years and it can hit again....

    Like you said this forum is a godsend. I live in southern British Columbia, Canada. Where are you in the States? Keep in touch. I wish you a pain free day!

    Pam

  • Hi Pam......Thank you for sharing your PMR story and journey with me. I am learning a lot from everyone on this Forum....how nice to get to know some fellow PMR affected people.

    I love B.C....we have vacationed there often ....even made it to Alberta...one time. I live on the Central Coast in Cal. Just North of Santa Barbara and South of San Francisco. I wish you many "pain free days " as well. Suzanne

  • Polymyalgia rheumatica was finally given a name in 1962.

  • It had a name in 1888: senile rheumatic gout. It got called PMR in 1962 - only the name was changed to confuse the innocent ;-)

  • Hello PMR pro.... not sure that I like the "senile" part of THAT name ... although I am satisfied that I now know the dates of the final naming of PMR.

    Suzanne

  • No, me neither but it was fairly accurate "senile: (of a condition) characteristic of or caused by old age"

    In the late 1800s 60 was a pretty advanced age.

  • Hi Always.... Thanks for the I nfo on the origins of the naming of PMR. Quite an interesting story don't you think !? ( do you always have a headache? So sorry if you do)

    Suzanne

  • When I lowered my prednisone below 7MG I get migraine headaches that wake me up between 3am and 5am.

  • Are you sure it is migraine?

  • Yes

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