I'm in a PMR flare ., and I got my DNA tested. I have microbiome of which is highest in this bacteria.. it seems to me to be the cause of PMR for me. I tried going off for a couple of days. I've been reducing from 3mg I think for about a year now using that slow method of 0.25g one day a week etc.. and was down to 2mg but very tired ..I posted about the fatigue before. I seemed to pick up from that and went down to 1.5mg.. and the pain increased in my hips and shoulders etc.. My new rheumy has given me a scrip (2.5 weeks ago now for methotrexate and folic acid..and I think I have MTHFR, which wnt work I think?,,and I tried to tell him but he didn't understand..anyway been researching methotrexate and still to research MTHFR (I did this about 20 years ago, and it just wasn't known exactly the pathways, probably still isn't with me exactly....another story). and I'm reading about PMRPro's experience with methotrexate. I've been on pred now for 3.25 years..so was hopeful as I was almost off..though I have never been totally free of pain or fatigue.. back to the POINT here's the main bacteria in my mouth saliva microbiome
The immune response to Prevotella bacteria in chronic inflammatory disease
and look what it causes! apologies, as I can't keep on topic here
BTW my microbiome is heavily flooded with many of the Provotella bacteria, my husband's, father's and stepson's have NONE.. now to work out if methotrexate is supposed to help. I also have had other autoimmune things wrong with me.. like I think I had RA in my late twenties for 3 years..and that went away, then thyroiditis leading to Hashimoto's, and also I think I had Sjogren's, and possibly something to do with liver as I had a fatty liver, knee inflammation which went away with pred..but came back as I reduced around 7.7mg, so I had to stay there for a long time until it went away again..and fingers are just starting to stiffen in past week..so if I don't do anything ..like up my pred or go on methotrexate or both..I think I may come down with RA again.. at least I think it's a possibility that I will develop it, and I've read some do...and now I think I understand a little more of what is going on.
wondering what others think...
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Jan_Noack
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I understand that a healthy microbiome has an abundance of Provotella bacteria - but it will presumably depend which species are particularly common as to whether they have a good (eubiotic) or bad (dysbiotic) role.
Very complicated but interesting. I am not sure if the conclusion is that the Western diet or the high fiber Eastern diet is best. My diet consists of a balance. I love fruit but try to include protein in at least one meal per day. Calcium, too. My gut works well..
I can see you are feeling a bit at a loss , you are, however ,doing very well to have reached these lower doses of Steroids after 3 and a half years with PMR when you mention you have already had previous health issues and you suspect that you also suffer from RA.
I assume you are getting some treatment for this too if it has been diagnosed?
The article you discuss is very interesting but the conditions being discussed are not " like" for " like" . Things like Periodontitis , B.V , H.I.V, and the various gastric inflammatory diseases obviously have far greater swings in the Bioflora , it is part of the primary nature of these Diseases, which affect Flares in their activity, but the needs for these issues are different to those of PMR , RA or OA .
Maintaining a healthy Biome in other autoinflammatory and Autoimmune conditions is sensible , but it's not some form of revelation or miracle cure for them, or PMR/ GCA . It's part of the reason we recommend having probiotic yoghurt and having a low sugar , lower carb , none processed diet . If you maintain a good gut you reduce the additional symptoms from things like acid reflux or IBS and reduce stomach issues while taking steroids , it helps you feel healthier in yourself and reduces accompanying pain from side effects, rather than being intrinsic to Managing the Disease itself .
You have been through a lot of issues in your Medical History though.
If you have been diagnosed with Sjorgrens , or have Sicca, this does not go away , it is just limited by treatment and care. The same is true for a diagnosis of RA.
Thyroid issues should also involve monitoring and often maintenance treatment for Life of some sort . They don't just go away .They are Chronic conditions to be treated or limited for Life. If you have them , and are not being supported with these issues , this needs discussing with your Doctor's , no amount of dealing with your Bioflora at home will be enough on its own.
If these have not been diagnosed as ongoing conditions , but you have suffered all the symptoms of these ,and other illnesses at different times in your Life , you may need to be checked for them again . Or have you ever been tested for Lupus , Epstein Barr or Lyme's ?All of which can mirror the other conditions you mention. These can be tested with simple blood tests at your GP.
Many people have a good response to Methotrexate , so unless you are sure that you are intolerant to it , it may well work for you. But , if you have other chronic conditions you may also discover that you need another medication , or you will be on some sort of medication for Life to control Pain and Inflammation , as most of the things you have discussed are not self limiting diseases but Chronic illnesses that need to be controlled for Life .
If you feel you are not being treated or their isn't someone with enough experience in the illnesses you have , or may have , you may unfortunately need to consider finding a Private Consultant that does for a Consultation to help with your future treatment .
thanks everyone. Looks like I have to go thru them indivually and it may tell menothing. Strange though that my results are entirely different almost to my husbands and his sons and my fathers ! ie they had none of this type I think?..lots of other though. And thanks I am feeling overwhelmed at present, and I do need to start the methotrexate I've decided.. but I have to take folic acid (as standard)..only its not something I could take much of due to a blockage I've been avoiding it and still have over high folate on tests as I dont seemt o reak it down and use it ? or comething..hope to work out what happens to both me (and it did my Mum also).
If you have problems with folic acid or floated that you know of from the past you should discuss these with your GP or Rheumatologist before starting MTX , they may need to give you further tests before beginning this treatment.
Did you send away to a company for a DNA testing kit? I think I'd like to do the same just to find out what my gut bacteria is like. What company did you use and how much did it cost? My friend who is a Nutritionist is always talking about our Microbiome and if out of sinc how much it affects our health.
Yes I did, but unfortunately that company does not consistenly produce good results, with bout 10% at present being usless, and It's up to you to find out. I checked results for over a year and they wereall good except for the wait which i expected to be about 9 months with tests being run about 6 mths to over 12mths after you submit them! The they decided to use lab of their own in Italy and the reults are good about 80% of the time. Its a gamble. ..and its stressful as it's up to you to check the results and learn how to run softyware to check the,m. There is a facebook group that is helping out and writing socftware that is user friendly to run quicj checcks. The lab should be running these checks themselves but they do not appear to be doing so, so if you are prepared to maybe do your money completely as it .stands now with a 10% risk, they have specials a couple of times a year..around black friday and sometimes rare disese day in February for fdown to EU165 or so for a 30x WGS.. problem is in Dec (iwth many getting low sequenced samples Date stted they would resequence those with less than 90GB (which to them is about 3 G in a human DNA * 30 times , is 90GB..problem is with microbiome (whic luckily they do not remove, this drops). Other labes are running (standard amount) is 120GB reads with allows for some microbiome. But Dante has some problem with either thei testing run or sample degradation/ contamination during handling , processing and storgae.. so about 10% of kits are getting very low mapping and useless for microbiome and health purposes results. One can extract their mito group, but that's about all. So IFF you are prepared that you have 10% chance of an almost complete failure, with Dante (the lab) ststaing..nit their problem as they sequenced at least 90GB.. and a 80% chance of a win, you get e FASTQs, the Bam, the vcfs.. etc and cn generate your own reports..or look up your own genes etc..which I am going to have to go re the MTHFR genes. BTW if you Do order, paying more for faster processing does NOT work...they are run in about the same time..which is anywhere from 3 weeks to 9 months at present! here's a poll I ran on one of the Facebook sites created to write software and help users with Dante tests use their results. Of course,as with anythingm medical, youc ould take the reulst..provided the mapping comes out about 24X or above on the human genome to a genetic doctor for help, if they are prepared to use it, which many are not as it is not a qualified clinical lab I think..ie their new Italian lab isn't. So at present, if you are curious., and want to spend a load of time! (which Iwasnt prepared for), maybe a load of stress reasking for results to be rerun which may never happen, (or getting incorrectly accusing emails from their customer serice)..they go for it, as at present, its the cheapest you can get and it includes the microbiome which other labs remove..ad give you the FASTQ. I wish I could give a good review.. as they were a startup with great intentions,, but so far..nah
BTW many are prepared to take this risk. the facebook site with the poll I ran on it is facebook.com/groups/3736442... lab is Dante labs in Italy.
sorry for the lengthy reply and it is difficult to comprehend.. butthey are runnuing a test cheaply, on the cheap and do not respond to emails etc many times (no t enough customer service staff) etc.
I was on a titrated up dose of Methotrexate up to 7 pills a day for six months when a cough that wouldn't quit derailed my treatment. I have Psoriasis on both hands and feet and it was a very slow progress but it did help. I started on a very low dose as the side effects of nausea and diarrhea stopped me from taking this very long in 2016. I had learned to manage the nausea with Dramamine (non drowsy) daily and Imodium for the diarrhea. Too bad we couldn't stop the cough. My PCP and my derm both agreed that I should stop taking it after I went from acute bronchitis to croup-like cough for 2 months duration. It was very draining. I was on a Prednisone roller coaster for 3 years prior to that. Cured everything but gave me swelling in legs and feet, moon face and trying to come off that was the worst. My derm won't even give me a tapered dose if I am in a flare. I also have Hasimoto's thyroiditis, well controlled with Synthroid. Good luck to you. If I hadn't started with that cough (not a normal side effect) I would still be on Methotrexate.
Actually I was just back to see the derm a week ago and she said it is very unusual for that side effect to happen. I told her i did think i saw improvement and could i ever go back on it but she said if i could not get Otezla approved she would put me back on with the stipulation that if the cough returned I would have to stop and would not go back on it again. So that is where we are now. I am off for three months and had a flare , of course, but at the moment my feet are bad but my hands are managed with topical steroid and gloves at night until we find another solution. There is really no easy fix for any of this autoimmune stuff I am finding out over the five years I have been treating and none of it started till i was 60! Guess i was lucky to be a late starter. Best wishes.
That cough sunds like I had before I had PMR for 3 years. I didn't even visit my favourite aunt while she had leukaemia and idea as I though I had something infectious and would kill her...sigh. It turned out that cough was from GORD, my only symptom if it..but as you say bad enough..all night and day etc..very drwining. i had an hatus hernia and Gord. I went on pantoprazole but had to be on 4mg a day for the cough to ease up..and eventually stop . I was on pantoprazole for a couple of years at that dose and felt worse and worse, liver enzymes went up (they were already high)and then I got PMR. I had a BMD and was z=-3.8. It took me two months to get in for the BMD scan.. so they said it was caused by the prednisone, but I think teh low BMD was caused by the pantoprazole. Of course, the prednisone also irritates the GORD and I also now have to take aspririn for the moyamoya-like syndrome.in my brain..and that itrritates the GORD. So even sleeping with my head rasied (which helps),and sitting or standing for hours after taking aspirin (enteric coated helps but dosnt stop it) or the prednisone..I am getting a mild cough back, It is the same as my MUm had for about thirty years. I reckon she had GORD too. I know (as I have tried one dose of 5mg!)..great expereiecnce here that methotrexate really gets my GORD..that cough restarted..but not as bad as it can be. I am wondering it this is the problem with you also. I will try to remeber to keep in touch with you to let you know if this cough worsenes as I get up to 15mg of methotrexate (which I w supposed to start on). One dose of 5mg ..slight squarmy and a really tight heacdache aound skull..one I've never had before..and the cough.and I couldnt sleep...will try again sdoon as I really want to get on it..reading about so many good things in all the studies
"ALL the studies"? There are only 3 about its use in PMR and they disagree! One done in Italy, the one that found a significant reduction in total pred dose but only after a year, did a follow-up with the subjects and concluded that while the total dose of pred was lower, the adverse effects were exactly the same.
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