New information on Minocycline treatment: roadback.org... - NRAS

NRAS

37,223 members46,068 posts

New information on Minocycline treatment

Simba1992 profile image
14 Replies

roadback.org/blog/theory-re...

Written by
Simba1992 profile image
Simba1992
To view profiles and participate in discussions please or .
Read more about...
14 Replies
Witness2 profile image
Witness2

That is really interesting Simba, thank you for posting the link. Are the drug companies who invested millions in the R&D for biologics somehow implicated in suppressing news of the efficacy of this drug do you think? Sorry to sound so cynical but why arent Rheumatologists prescribing this otherwise?

Simba1992 profile image
Simba1992 in reply toWitness2

Unfortunately there is so much politics going on that we are only starting to see. Big Pharma is for example funding FDA with millions and different countries have official protocols for treating diseases where pharma plays a very active role. Meds that do not bring money do not interest Pharma in any way. Money always talks loudest. At least Mino is allowed in the US as an RA med.In France and I think in Europe it has been taken off the list of RA meds which means it can no longer be prescribed by rheumies. Funny since the effect of many dmards has been proven in studies to be less efficient!

Witness2 profile image
Witness2 in reply toSimba1992

It's worrying. Yet the government is desperate to reduce the drugs bill. I wonder what NICE's take is on Monocycline. Seems ludicrous that a less costly and often effective treatment is being overlooked.

Simba1992 profile image
Simba1992 in reply toWitness2

I know that EULAR has removed it. There actually is no research that would show Mino being less efficient than the other Dmards, quite the contrary there is research that show a significant and impressive decrease in lab parameters that are seen as showing the efficacy of Dmards, with mino compared with other Dmards. Research also shows that taking mtx with mino is more efficient than mtx alone. Why has this possibility of adding mino to mtx that has stopped working been taken away. Less toxic than other alternatives!

Simba1992 profile image
Simba1992 in reply toWitness2

More interesting reading. Understanding minocycline better.

ncbi.nlm.nih.gov/pmc/articl...

Witness2 profile image
Witness2

*minocycline!

Thank you, saved that link. Good background info.

Gets me fuming mad too, thinking of how RA is left untreated until diagnosis in the USA, then the so called ‘gold standard’ toxic drugs are pushed on unquestioning, suffering souls.

Guess Rheumatologists are not taught anything but answers that always lean on ‘drug therapy’. Sad.

Simba1992 profile image
Simba1992 in reply to

This is really aggravating 😡There is no reason in a situation where patient suffering from evident AI symptoms and where lab parameters are still weak that the treatment would start with less toxic alternatives as it has been shown that for example treating subclinical hypothyroidism may calm the symptoms as also dietary changes or use of minocycline. How can we be sure that shooting wildly with the hardest ammunition won't infact make the situation worse longterm?

Needforname profile image
Needforname

Thanks for posting this. I'm going to show this to my doctors (not that they will actually read it though). I'm guessing their reasoning for using antibiotics as a last resort is because of the influence from drug companies, rather than the other reasons they tout.

I've now been on MTX for 6 months, and Enbrel for 4 months and am only getting worse. Prednisone, LDN, anti-inflammatory drugs, Lyrica, Cymbalta, Tramadol, Baclofin, Flexirol, etc. None of them have helped one bit.

I've asked if I could try antibiotic therapy and they claim it takes too long to work, and is best for early onset of the disease, and that it's too dangerous. I laugh because the same can be said about any of the other drugs they have no problem prescribing.

Has anyone had good results with antibiotics for their RA? If so, what stage of the disease did you start taking it? How long did it take to work? Did you also try other drugs like MTX first with no success? Thanks.

Simba1992 profile image
Simba1992 in reply toNeedforname

If you want to hear what people have experienced on AP you should go and have a look at Roadbacks forum. Your history of RA meds is really impressive. Too bad they haven't worked. It's really strange that the wish of the patient weighs so little in the choice of treatment. Perhaps Mino isn't a nono in your case since nothing has really worked so far and in fact it IS a dmard with less toxic effects than the others and has been used in the treatment of RA. I wish you luck with your doctor.

Needforname profile image
Needforname in reply toSimba1992

Thanks for the reply Simba. Yeah, I gave up trying to fight the doctors. It became too stressful. Maybe I'll just have to wait it out a few more months. If the Enbrel doesn't work by then, the antibiotics may be the only option. And thanks for the link below. I had read that before (probably thanks to you), but it's a great reminder. I don't drink milk, but I should consider a calcium supplement. I did take magnesium for awhile, along with boron, vitamin D, and all of the things people rave about, but they didn't help so I stopped.

Simba1992 profile image
Simba1992 in reply toNeedforname

I saw that you had problems with calcification and thought you may have help from these facts.

raypeat.com/articles/articl...

Simba1992 profile image
Simba1992 in reply toNeedforname

I am trying a new doseing option for LDN that is said to be more effective for pain. 3mg morning and 3mg evening am also experimenting with high doses of Niacinamide (Vit B3) That might be something you would like to look in to😊You don't need to fight with doctors to try these out.

doctoryourself.com/kaufman5...

Needforname profile image
Needforname in reply toSimba1992

Best of luck with the new LDN dosages. I thought about giving it another try but with the lack of research combining it with the other drugs I'm on, I don't know. I have recently read about B3 therapy and even asked my pain management doctor about it. He said he met another doctor at a conference who was having good results with it. I'll give the B3 a try. Thanks!

Not what you're looking for?

You may also like...

Minocycline for RA

HI I am newly diagnosed with Ra I do not want to take Methx and have been researching other...

Minocycline and Alternatives Update

Hi All - I think there might be a few people on the board that are using Minocycline to fight their...

New treatment

Anyone on Abatacept? I'm due to have my first injection on Friday. All ready tried rituximab,...
Rachel43 profile image

Starting new treatment

Am having to come off Benepali as it's not working for me ..am going on Tocilizumab is anyone on it...
Swimming20 profile image

New to Prednisolone-information please

Biology withdrawn after two primary cancer diagnosis in last two years. Review only considered if...
SALI profile image

Moderation team

See all
Donagh-NRAS profile image
Donagh-NRASAdministrator
Nicola-NRAS profile image
Nicola-NRASAdministrator
KateL-NRAS profile image
KateL-NRASAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.