Had to post....

[peanutann]

Ive been a member of this group for maybe a year. The reason I joined is because I had a scare that my PMR was returning. I have never posted but I am posting now, strictly to share my story. NOT to tell anyone what to do, to give advice, or to debate the facts of my story. Just feel compelled to finally share.

In 2007, I started noticing a bad pain in my upper left thigh; chalked it off to getting old. But then the right thigh started hurting. Pretty soon it was in my upper arms. So bad I couldn't sleep. I went to an internal med doc (big mistake) who told me I had fibromyalgia. I told him that couldn't be possible because the only thing that seemed to make me feel better was my husband giving me massages all over. Anyway, went on for a couple of weeks until it got so bad that I actually went to the emergency room for the first time in my life. Of course all they wanted to do was give me pain pills. Couldn't even get dressed by myself; I hurt so bad. Finally smarted up and went to rheaumatolgy doc. Very nice; told me I had PMR and put me on prednisone. IMMEDIATE RELIEF, thank God. Back to my old self, right? But then I started reading on the internet all about PRM, the effects of long term steroid use, etc. Pretty scary. In my research, I found an article about how mycoplasms could cause certain diseases, one of those being PMR. So I had my very sweet rheaumologist do all sorts of tests of me for mycoplasms. I specifically told him to do the test for mycoplasma pneaumonia, which was mentioned in the article I read. It came back positive; he was very surprised. To my knowledge, I have never had pneaumonia in my life. Anyway, more research and found an intensive antibiotic program was the only way to supposedly get rid of this hidden bacteria in my system. I talked to my doc and persuaded him to prescribe me the program. Its been so long now that I don't even remember what all it was but I do know that the mainstay of the program was Minocycline, and a several week course of Azithromycin. I weaned myself off the steroids (too fast, thought I would literally die, seriously) and started the antibiotics. In a month I was full recovered from the PMR. The reason I joined this group is that due to a leg pain, I panicked and thought it was coming back. Thank God that was a false alarm. But in the meantime, I found out my doc had moved to New York. So I did some lengthy research to find any doc in the Dallas area who would do/consider doing the antibiotic protocall in case it ever does come back. But its been eleven years and so far so good. I just felt compelled to share my story with you.

[schmuppy]

I am in New York - what is your doctor's name?

[peanutann in reply to schmuppy]

His name is Dr. Gary Hoss. I must warn you that he knew nothing about any antibiotic protocol; I literally told him what I wanted to try and convinced him that we had nothing to lose (ie; side effects of steroids vs. antibiotics) But you are more than welcome if you find him to use my name Paula Seabolt. Also the protocol called for me to be on antibiotics for several months; I stopped after about probably five or six weeks just to see how I felt and I felt fine! Like I said it has been many years so he probably wont remember me!!! But I will be forever grateful that he at least gave me the chance to try that regime as opposed to remaining on steroids for many years!!!

[peanutann in reply to peanutann]

Im sorry I am old that isn't his name!!! ITs Robert Meador!!!!!! Gary is my primary care doc! And again please don't take my experience as more than me sharing my story. Any new treatment is a risk, no matter what it is, as far as Im concerned! I just weighed the risk and in my case, it worked out for me!!

[peanutann in reply to peanutann]

Also I said minocycline but if I remember correctly I used doxycycline instead after researching how both affected the bacteria. If you research Wheldon protocol for Ms it is very similar except I believe I did use the doxy and was only on it about five weeks. I am extremely affected by any and all meds so of course I was afraid to try it, even my self implemented shortened version of the regime.

[Longtimer in reply to peanutann]

I have to say that I have read in the past about a doctor that prescribes very low long term dose anti-biotic for PMR...but when I mentioned this to a rheumy a few years back...no reply....but you are saying that you didn`t think you ever had PMR?....will look up mycroplasms anyway....

Keep well......

[peanutann in reply to Longtimer]

Oh no, Im sorry I wasn't more clear! I DEFINITELY has PMR. But in my case, I believe it was brought on by the "hidden" mycoplasma pneumonia bacteria. The article that I had found indicated that this was a common mycoplasma that caused rheaumatic diseases. And I think (only think, no way to prove) that I had had it for many years and due to a lot of stress was able to attack my system. That's what I believed then and that's what I believe now. My doc had to give me a chance once we discovered that particular bacteria, which was the one I told him to look for. It is commonly known as "the walking pneumonia" bacteria. I could have had it in my system for many many years, and then when my system became weakened by stress, it got me. I know its only a theory, but I am here to say the antibiotics saved me from many years and many side effects of pred. Even in those few months I was on pred, it caused bone loss for me.

[Suffolklady in reply to peanutann]

Was there any reason you thought you had mycoplasma if so were there any symptoms? Really interesting story btw. Glad you have your life back.

[peanutann in reply to Suffolklady]

Thank you! The only reason was my research on the Internet, hours and hours of it. I wish I could find the article that I had that gave me the clue. I know there are many articles on the effect of antibiotics on MS but can’t find any now on PMR. I just couldn’t accept that I would have to be on steroids for so long when I knew they were already hurting my body. Plus I am in Texas and having taken care of my grandmother and both my parents (who had terrible debilitating illnesses) I had lost my trust in doctors years before. No offense to anyone in Texas but finding a “good” doc who keeps up with new developments in health in Texas is not what anyone would call easy.

[fmkkm]

Hi there,

There are different theories but nothing proven yet. The university of Colorado has done research on chicken pox virus related to GCA.

the-rheumatologist.org/arti...

Would love to see a definitive cure!

Best

[fmkkm]

Here is another article. I showed my GP couple years ago and she refused to consider antivirals. I may try to reopen the discussion with the rheumy but they are all mostly down a different rabbit hole.

ncbi.nlm.nih.gov/m/pubmed/2...

[Alness]

Facinating and how clever are u to hv done such in depth research . I hope u keep well , thanku for sharing your story. X

[peanutann in reply to Alness]

Thank you, but after reading about all the side effects of pred, I felt I had to look for alternatives, didn't really have a choice. I was just so lucky that I found a doc who didn't think he was God and was willing to let me try it if I wanted to risk it. The only mistake I feel I made in all this was getting off the pred too quick. It truly did almost kill me. My husband thought I was dying.

[HeronNS]

Quite frankly, after looking up the potential side effects of doxycycline I'm surprised you'd take it rather than pred at low dose.

rxlist.com/consumer_doxycyc...

[Alness in reply to HeronNS]

HeronNS I have had to take very long course of docycycline for severe asthma and i would take it again snd again over steroids which have caused me no end of health pribs whereas the dixycycline caused no side effects and made me well. I guess were all different x

[HeronNS in reply to Alness]

Fair enough!

[peanutann in reply to Alness]

Yes that’s the thing; we are all different and meds affect each of us differently.

[peanutann in reply to Alness]

I was, of course, afraid of side effects. That’s why as soon as I felt good, I started tapering off.

[peanutann in reply to HeronNS]

Well I had no side effects whereas I already knew the steroids were causing side effects even after a couple of months, so...and it was worth the risk considering how long most folks have to be on steroids....

[fmkkm]

Here is a more in depth study that could not find much difference in pathogens between the GCA test and control group.

onlinelibrary.wiley.com/doi...

Thanks for sharing your story, I find all this fascinating! When I said that to my rheumatologist last visit she gave me the strangest look😂

[ConventCassie in reply to fmkkm]

I believe that!

[ConventCassie]

I understood you to say you’d never had pneumonia. I haven’t either, but I did have that shot or vaccine to protect against pneumonia. I still think there’s an epidemic of PMR and if its not from all those shots, it could be from the shingles vaccine or...maybe those flu shots. I’ve heard the pneumonia shot needs to be renewed every 10 years! I’m done with all these ways Big Pharma manages to get more money. “I found an article about how mycoplasms could cause certain diseases...”. Can you site the source and has any more work been done relating to this? I think your post is most interesting. Thank you.

[PMRpro Ambassador in reply to ConventCassie]

I had never had any of "those shots" when my PMR started, nor pneumonia. There is no single cause of either GCA or PMR - it is probably a long term overload of the immune system and eventually something "breaks its back". It may be a vaccine that is the final straw but if it hadn't been that it might have been the illness it was to prevent.

[peanutann in reply to ConventCassie]

I understand that this “walking pneumonia” can stay in your system for all your life. In my case it must have because as I said in another post, I know it must have been from when I was a child or very young adult, as I have never even run a fever in my adult life and I’m 68 now. I’ve never had a flu shot or pneumonia shot or a shingle shot because honestly, I don’t trust the medical/pharmacy community. Right or wrong, that’s how I feel. Based on my experience with critically ill loved ones.

[Longtimer]

I`ve had PMR for 7 years, and did have pneumonia 18 months ago...makes you think dosen`t it....very interesting......Thank you...

[peanutann in reply to Longtimer]

I do know the mycoplasma they found when they did all the tests was called clamydia pneumonia (nothing to do with the std clamydia ) they also I believe call it walking pneumonia because folks may not realize they had it. I personally think mine was from when I was either a child or young adult because I NEVER get sick. I don’t remember ever even running a fever in my adult life. In 2007 both my parents were very very ill and I think the stress of taking care of them weakened me.

[Longtimer in reply to peanutann]

Yes, stress worse thing of all.....

[Bamber99]

Interesting. I was diagnosed recently. I had pneumonia 18 months ago. Will look into this. Thanks for posting

[powerwalk]

What dosages were you on - do you remember? Thanks you. Hope you keep well.

[peanutann in reply to powerwalk]

I am so sorry. I’m pretty old now and that was eleven years ago.,.and I’ve moved twice so didn’t keep the records because there were a lot of them! I had printed out everything to show to my doc and the all the test results. This last move I threw them away (stupid of me)

[powerwalk in reply to peanutann]

no worrries - many thanks.

[Omanain]

This is very interesting as many of us seem to have had a bout of severe stress before the onset of the PMR. I am in the UK and the chance of getting a doctor to even start to consider this is remote but if others have success it may be the start of something.

[fmkkm]

There is a newish science called epigenetics. It is based on the theory that an external force ( stress, vaccines, virus, toxins etc) flip on a gene that controls an autoimmune response. I had all of those stressors 3 years ago before I was smacked down by GCA.

I want to know if we can flip off the gene.

[peanutann in reply to fmkkm]

WoW! Interesting!

[Linny3]

Thanks for the info. Always looking for something to help explain this miserable disease. I asked to be tested for lyme disease and I do not have the markers for that. I will be interested to see what the dr. has to say about this.

Good Health to you

Lin