Gut microbiome and immune disease????

[PMRpro]

My friend over on the lupus forum posted this today:

sciencedaily.com/releases/2...

Wonder if we'll live long enough to see the end results...

[Hidden]

Food for thought ! Is it a coincidence that my PMR started shortly after a high dose of antibiotics?

[PMRpro Ambassador in reply to Hidden]

Possibly not. And is that perhaps why so many people say illness was the final straw?

[Celtic PMRGCAuk volunteer in reply to Hidden]

PeTee, antibiotics destroy the good bacterial in the stomach and you need to follow up with some good probiotics. Live yoghurt with the necessary active cultures can help to restore the balance and replace the good bacteria after the antibiotics.

[Hidden in reply to Celtic]

Thanks Celtic, yes I have done some research and it appears to be a very interesting subject. I do take them but it id very difficult to know if I am wasting my money or not. Loads of conflicting stuff on the web.

[Celtic PMRGCAuk volunteer in reply to Hidden]

I know what you mean about wondering whether or not things we spend our precious pennies on work or not, and I, too, am very wary about believing anything I read on the web. But as far as 'live' yoghurt is concerned, I learnt very many years ago of its benefits. My then boss's sister was a surgeon and recommended 'live' yoghurt for replacing good bacteria in the stomach especially after antibiotics. I am also convinced that my daily dose of yoghurt protected my stomach from the onslaught of steroids starting at 40mg. I never had a day's stomach disturbance, whereas the very pills so often prescribed routinely alongside the steroids to protect our stomachs had the very opposite effect on mine and were very quickly returned to the pharmacy! So I feel sure you aren't "wasting" that money!

[Hidden in reply to Celtic]

Thanks Celtic, much appreciated.

[HeronNS in reply to Hidden]

Oh I think the jury has long since returned its verdict that fermented foods are of great benefit to us. Exhibit 1 - a Somalian family which settled in Canada had several children all of whom registered on the autism scale. Return to some of the foods of the parents' homeland, fermented foods, resulted in great improvement. Exhibit 2 - natto, the source of our Vitamin K2 supplements, is actually a fermented soybean, and is one of the few foods touted as being a "superfood" which qualifies for that title. Exhibit 3 - most of us have already discovered the benefits for protecting the stomach from pred. I shall add that I've found it helpful to me when I take aspirin for headache, more effective than any other kind of snack. And the list goes on.....

[Hidden in reply to HeronNS]

Thanks HeronNS, I also take k2 in the form MK-7 buying it from Jarrow.com

Peter

[piglette in reply to Hidden]

You may like to read the book Gut which is very interesting.

[Hidden in reply to piglette]

I'm looking out for it.

Thanks piglette.

Peter

[Rugger]

My sister self-diagnosed (?!) PMR 5 years ago, which went into remission 10 months later, without steroids. Just to say that she takes kefir and kombucha EVERY day and at times has made her own kim chi. If she was correct in saying she had PMR, I wonder if all these fermented products helped her? She also says she has a very high pain threshold - a better woman than her 'little' sister - me. We're 70 and 68!

[PMRpro Ambassador in reply to Rugger]

Like PeTee the pain, while horrible, was the least of my problems. It was the stiffness that stopped me being able to live normally. I couldn't get in or out of the bath (thank god for showers!), had to lift my legs to get in or out of a car, could barely dress myself, toileting was an interesting experience and turning over in bed or getting out of bed was an action to be done by numbers!

PMR can and does go into remission - it can do so without ever using steroids as they have no effect on the actual disease. And there are cases where it disappears relatively quickly. They are the exception though and these patients may be at a higher risk of a relapse at some later point.

[Nap1 in reply to PMRpro]

I have a neighbor who refuse to take prednisones and went on Vioxx many years ago. Took it for two years went to work every day with the pain and after two years the PMR burnt it self out. Vioxx is now off the market because it caused heart problems and she is fine and never returned and she never got GCA. Sometimes a little luck helps.

[Hidden]

Hi Rugger, It's not just pain we suffer with. When I developed PMR it was the stiffness in the body, I could not lift my legs and arm up to get dressed without help. Whilst on preds most of the stiffness is under controll and the pain is 90% reduced. Without pred I think I would bed ridden!

Best wishes

Peter

[Nap1]

If they're only doing mice now you and I and most of us on this forum will never see the results. But it is definitely interesting And I believe life begins in the gut.

[PMRpro Ambassador in reply to Nap1]

Huff - I'm expecting AT LEAST another 20 years and science sometimes works quickly!

[Hidden in reply to PMRpro]

God help us, some of the doctors won't. Sorry just feeling a bit cynical. Must be a pred side affect.

[PMRpro Ambassador in reply to Hidden]

I suffered from that LONG before pred. Living and working with medics doesn't always inspire confidence...

[Hidden in reply to PMRpro]

I know what you mean, my nnephew is a surgeon and his mother said she would not let him operate on her.

[piglette in reply to Hidden]

My father as a hospital consultant could not diagnose a broken arm, it was his broken arm!!

[Hidden in reply to piglette]

Nice one piglette, good job we can maintain a sense of humour. ....

[PMRpro Ambassador in reply to piglette]

Skilled!!!! But what SORT of consultant?

[piglette in reply to PMRpro]

I agree he was not in orthopaedics, but he had been to medical school.

[Nap1 in reply to PMRpro]

Well I don't know about you but my DNA won't give me 20 years. I would be thrilled knowing I had 5 With less osteoarthritis pain. Less prednisone induced diseases like the herpes that just started again this morning. Decided not to have the eye surgery in Florida. Bought a little condo at the Jersey shore to get away from this incredible heat. So will have a new set of doctors at the university of Pennsylvania. I'm hoping they look at me as a person not just an old person. Also hoping they are familiar with TCZ because as much as I didn't want to start it... The steroid myopathy is awful. I'm on 11 now and if I stick with slow method I am looking at another 20 months at least. The TCZ is still not approved for GCA and so not every physician wants the responsibility. The better hospitals are using the drug with great results. It behooves me that it's on fast track and going nowhere fast. The FDA is underfunded and understaffed. I have friends in high places battling with them legally because the pipeline is filled with possibly some good cures for some dreaded diseases. Hope you are having a wonderful day and the weather is moderate. I will now start my day which will consist of an interview with an anonymous drug company by phone regarding my GCA and prednisone. Pretty sure I know who it is. Thanks for listening. And always appreciate the advice.

[PMRpro Ambassador in reply to Nap1]

"I'm hoping they look at me as a person not just an old person"

It would be nice wouldn't it!

But you're right - why would anyone want to have 20 years of pain and disability?

What form of corticosteroid are you on? I had horrendous steroid myopathy with Medrol but being switched to prednisone in the form of Rayos (for you) reversed that in a couple of months.

[Nap1 in reply to PMRpro]

I really don't know. The doctor gave me a prescription for prednisone which comes in 1,5,10 and 20 mg. Every so often I have started to get shots of Kenalog in my joints. But this is new to me. I needed it before the GCA and once I got down to 11 the OA became very active. I have been getting to the gym i'm going for physical therapy but days are short because of the myopathy. I will inquire with my pharmacist about Rayos. It is a new word to me. When I do research only the word prednisone is used.

[HeronNS in reply to Nap1]

rayosrx.com/

"RAYOS releases the action of prednisone about 4 hours after you take a tablet—so it can be conveniently timed to work when your disease is most active."

[PMRpro Ambassador in reply to Nap1]

The US usually uses methylprednisolone (Medrol) and prednisone for oral dosing. What I'm suggesting is you could ask to try the other and see if it helps. Using Rayos does seem to allow a lower dose to be used because of the way it is used. But people do react differently to the various forms of corticosteroid so if you have problems with one it may be worth trying another - hydrocortisone also works in pred but you usually have to take at twice a day at least. Some doctors aren't even aware of the fact.

[Nap1 in reply to PMRpro]

The problem with the rayos is that you can't cut the 1 mg tablet in half. The dosing explains this. I take my prednisones with breakfast usually by 10 AM. I am not dealing with PMR pain so the quickness or slowness of it working doesn't matter for me. Right now I am dealing with GCA reductions only. So I do need A tablet that will equal .05 if I am reducing by half a milligram per reduction, which is what I am doing. I can cut some of the other forms of steroid. I think I will wait until I get up to the university of Pennsylvania because my rheumatologist in Florida who is now number six will most likely not want to make a change. I fight him tooth and nail about the slow reduction. Unfortunately they just don't know about GCA. I fight him tooth and nail on the slow reductions. they just don't know about GCA. By the way this is the one that had four patients go blind and thinks an ESR a 40 is fine.

[PMRpro Ambassador in reply to Nap1]

Hmmm - doesn't occur to him that maybe he has a little something to learn?

The Dead Slow approach deals with the 1mg tablet problem.

[Nap1 in reply to PMRpro]

Actemra just approved by FDA for GCA. Now I need to inherit a million.

[dinhal in reply to Nap1]

What is TCZ

[PMRpro Ambassador in reply to dinhal]

Tocilizumab or the brand name is Actemra

[Nap1]

True. So question....I was down to 10.5 when I had root canal and bad cold. ESR went from 1 to 29 CRP went from .64 to 2. 0. Got scared went up to 11.5.

Two weeks later ESR 17 CRP normal range. Presently I've been back on 11 mg for the past 13 days. Still not back to the 10.5.

Yesterday's blood test ESR 25 and CRP.34. I usually run between one and 17 on my ESR. My upping the dose from 10 1/2 to 11 1/2 was because I was scared as mentioned. Had I left it alone blood probably would have gone back to normal on its own. (You did say that)My big question if I started tomorrow on the dead slow method could I go to 10? How does my body know that I went to 11 1/2 from 10 1/2 unnecessarily then came down to 11 and have been there for 13 days I'm thinking inflamation wise not steroid withdrawal. Do you follow me? I'm having a hard time following me. I have headaches and sweats all the time. Not just when I reduce. It's me

[PMRpro Ambassador]

Not sure if I follow, no. You won't know if it works until you try it.

So your CRP is fine. Wonder why your ESR is up from last time? Not taht it is very reliable anyway. Have you any symptoms at all? Do you feel well - well, as well as you can feel with PMR... Don't work to the numbers so much - listen to your body and what it is telling you.

The advantage of the dead slow method is you can stop anywhere and mark time. If you keep a record you can see what's going on.

[Nap1 in reply to PMRpro]

I actually feel good and getting some exercise. ESR doesn't make for happiness. I have it all done at the hospital and it's marked STAT SO THE ESR doesn't sit around.

[Nap1]

Right now it's a conundrum with the ESR. I will be taking another blood test next week which is part of my bi yearly physical. I also wanted to start the dead slow method so my question was can I do that now at 11 go to 10 And start from there. I'm asking because if you recall I went up when I had the cold and it was not necessary because I came down again within a week to normal. I've been on 11 for two weeks. But really was at 10 1/2 I know it's confusing. Since I feel so well I would like to start reduction 10 slow ASAP. Would like your opinion. This feeling good could be gone in two days it seems like the shot of Cortizone helped The whole body.

[PMRpro Ambassador in reply to Nap1]

If you feel well - then why not try the slow way to get to 10?. You can always stop if it doesn't work. You also don't have to start at the very beginning, 1 day new, 2 or 3 days old makes the step down easier.