PMR and MTHFR Gene Mutation: Hi, are there others... - PMRGCAuk

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PMR and MTHFR Gene Mutation

Robinre profile image
14 Replies

Hi, are there others out there that have PMR and have had their DNA tested? I find I have the MTHFR gene mutation which can cause immune disorders.

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Robinre profile image
Robinre
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14 Replies
PMRpro profile image
PMRproAmbassador

I suspect the real truth is that the gene mutation is ASSOCIATED WITH immune disorders. Which isn't the same as causing them.

rarediseases.info.nih.gov/d...

The info sent out with the results of a commercial gene test is very wide-ranging - and not entirely cast-iron in nature.

Robinre profile image
Robinre in reply to PMRpro

So true, I really didn't mean "cause." You are right. However, I have found that all "associated" risks with MTHFR have been found in my family on my mother's side. Too many not to take notice or action when it comes to finding the right kind of supplements.

PMRpro profile image
PMRproAmbassador in reply to Robinre

What sort of "supplements"? They won't change a gene mutation!

piglette profile image
piglette

I think you will find that having your DNA tested is rather a waste of time, but the companies who are doing the testing are getting a much larger database of results. The Human Genome Project was probably one of the most impressive projects ever and we will slowly learn a great deal from it.

Robinre profile image
Robinre in reply to piglette

Of course the supplements I am taking are not going to change a gene mutation. The supplements I take are because my gene mutation causes me not to be able to absorb B Vitamins or produce Glutathione and I also take supplements that boost the immune system which has been compromised by my use of Prednisone for my PMR. Once I started taking the appropriate supplements for my gene mutation, I improved drastically as far as energy was concerned. If one has a gene mutation which was revealed by DNA testing and they do research on this particular gene mutation, they could be of tremendous help in being responsible somewhat for their own care because God only knows the doctors now can't be.

piglette profile image
piglette in reply to Robinre

I do agree we are right at the beginning of discovering all sorts of things from the genome project. I was told that I should not try and boost my immune system (I have PMR) as an overactive immune system was why I got PMR in the first place. Have you checked the supplements you are taking with their reaction with pred?

Hindags profile image
Hindags in reply to piglette

I used to take melatonin for sleep Stopped because I read it boosted immune system. So strange we areore prone to infection because of Pred compromised immunity, yet we stent supposed to boost immune system. Maybe just support it,? Whatever that means....

Robinre profile image
Robinre in reply to piglette

HI, thanks. I go to an Immunologist and she recommends the supplements and types of vitamins. My immune system is so poor that I can't even heal from a rose thorn prick or ant bite. I have been to the emergency room for surgery after an infected rose thorn splinter in my hand and on antibiotics two times for ant bites that won't heal. My doctor said, "We need to get you off of Prednisone." Hope this last flare will be it. Now down to 3 mg. When I was young I worked for 25 years and only had a bad cold two times and never had a flu. I even worked at a hospital for 7 years with perfect attendance some years. It all changed from either dental surgery or Prolia shots for osteoporsis. My doctor feels that one of those is what caused my ultimate diagnosis of PMR 2 years ago (but I was suffering for a year before the final diagnosis). No high blood pressure or cholesterol.

Hindags profile image
Hindags in reply to Robinre

I am in an opthamologist's office as I read your post.

Just got an alert from 23&me that have two mutations that raise risk for age related macular degeneration. Going to discuss supplements I read about that slow disease progress..

And to find out what percent risk my mutations put me at.

So yes to your post.

PMRpro profile image
PMRproAmbassador in reply to Robinre

Mutations in a single given gene are rarely the direct cause of illnesses - except for things like cystic fibrosis, multiple dystrophy and Huntington's disease. In most cases a disease is due to small mutations in many different genes which are far more common than you would think. They mount up and eventually cause illness in conjunction with environmental causes and infections etc. It isn't as easy to link a gene mutations and illness as the media make it sound - and there are a lot of commercial interests which jump on the bandwagon.

However - if you have a specific thing that stops B12 absorption then obviously you need to address that. But the chances of it having much to do with PMR are small. And as has been mentioned - boosting the immune system when you have autoimmune disorder is something that shouldn't be taken lightly.

Hindags profile image
Hindags

I asked my rheumy if she orders the MTHR FR gene test before ordering Methotrexate. She does not. But, she does rx folic acid supplementation. She is willing to send me for genetic testing or help interpret my results from 23&me. 23&me does not report on MTHR FR status as yet. I think there's too much variability to be confident in the results at this time.

Robinre profile image
Robinre in reply to Hindags

Hi, I found my MTHFR mutation through 23 & Me about two years ago. I might have paid for those results aside from ancestry reports, but I can't really remember.

Whittlesey profile image
Whittlesey

Hi Robinre, thanks for your post I think this is something that definitely should be looked into.

I am an RH negative blood type. I am diagnosed both with GCA ( biopsy proven) and PMR.

I also have Meralgia Paresthetica, which doctors have said may be, in part, caused by an inflammation of the inguinal artery.

So arterial inflammation plays a big part of the illnesses I suffer with.

There well be a genetic connection (as yet untested) as well as a DNA mutation involved.

If this is so, awareness can help us deal with these inflammatory diseases at an earlier point, and avoid some of the potential dangerous outcomes, such as blindness and limitations of movement.

Very good information, Robinre. Appreciated and thank you.

Dorey profile image
Dorey

First I've heard about a gene mutation but thx

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