HI
I am newly diagnosed with Ra
I do not want to take Methx and have been researching other options.
Minocycline looks the most promising as it has few side effects and the research and use in America has been amazing.
As I live in the UK has anyone had this treatment prescribed on the NHS and has it worked?
Thank you
Have heard of antibiotics being used in treatment of RD, but not this specific one. Having looked it up, it seems to have alarming possible side effects. MTX is regarded as the gold standard treatment, I understand people being apprehensive about taking it, but it can be fantastically effective for many people. Please don't be too quick to dismiss it.
You really need to be having this discussion with your rheumatologist to get the best advice to treat your particular symptoms. Being informed is vital, but you should be open to their suggestions too.
Good luck. M x
Firstly - welcome to this community but sorry you have been diagnosed with RA. I was diagnosed four years ago and have tried but failed to tolerate four DMARDs, including MTX. I have to say that my RA, as a disease primarily affecting the joints, has all but disappeared after a few years of taking methotrexate. I don't take any RA drugs now.
So while I understand your reluctance to try this drug I would be concerned about whether RA might erode your joints. If it's going to then it generally does this in the first few years.
As far as I'm aware Minocycline is not a drug most NHS doctors would consider for RA. I could be wrong about this though. Alternatively you may find that a naturopath might be willing to prescribe or supervise this privately if you do want to pursue this form of treatment? I belive it's the way Lyme Disease is treated because my cousin takes it for this - but her immune system needs boosting whereas people with autoimmune diseases, including RA, tend to suffer from overactive immune systems.
However I did read up a while ago about it and this method would certainly be worth considering for some like me with non erosive RA. It works slowly so can take a few years to modify the disease process I think - and RA can do a whole lot of damage in these first few years. This is why it's not favoured as an approach in the UK I think. The idea in UK/EU and other Nordic/ Scandanavian countries and most of the US is to hit the disease aggressively in the early stages. So the antibiotic treatment might take too long to work for you if you've only recently been diagnosed?
I'm not sure about the whole antibiotics resistance matter either but I recall one of my sons took Minocycline for acne a few years ago.
Welcome pepperpot33. I'm thinking your Rheumy has suggested MTX as your introductory DMARD? If so there's probably good reason. You don't give any background to your diagnosis, whether it's considered particularly destructive or not but often MTX is chosen in an attempt to dampen down the disease as quickly as possible. Maybe the best thing would be to discuss your choices with your Rheumy.
Minocycline isn't generally used as a first line treatment, more often when all avenues (DMARDs) have been explored & little or no positive reaction is shown.
I take MTX, a little over 6 years now & it's the one DMARD that's given me back very near to normality, along with my other mix of meds. It can be a good med for many, that said It doesn't suit everybody & it's not without possible side effects but no med is & there's no saying you'll have any or with the help of folic acid find them tolerable. Again, you don't say why you'd prefer not to start MTX but not all sites are reputable & you can scare yourself without reason if you've read horror stories. As low a dose as possible is usually the way we start on it, increasing as necessary.
I hope you don't take this the wrong way but when researching meds it's better to stick to the UK sites, not for any sinister reason rather because treatment varies between here & the US, different guidelines & what may be in general use there may not be the case here or the rest of Europe.
I'm sure other members will be along to share their experiences & thoughts on minocycline & hope your find each helpful & you enjoy being here if not the reason for joining us! 
It's not a treatment usually used in the UK, so I think there would need to be a very specific reason for prescribing it.
Have you been looking at reputable research? The reason I ask is that the American College of Rheumatology considers minocycline may be less effective than the other drugs commonly used as DMARDs here and in North America. It has also been studied less, which means that less will be known about it's risk profile. (I have a link.)
If you are worried about the potential side effects of methotrexate, sulfasalazine, leflunomide etc, the equivalent information for minocycline doesn't look any more/less reassuring to me. (Again, I have a link.) No DMARD is to be taken lightly - and they all carry some risk of potentially serious side effects, as with any medication - including paracetamol. Your rheumatologist will weigh these up with your specific situation in mind. Unfortunately, undertreated/untreated disease has potentially serious consequences.
Do you have a rheumatology appointment soon? I think you really need to be having a conversation with your rheumatologist or the nurse specialist about your concerns. They should be able to find a way to work with you to build a treatment plan that is acceptable and effective.
Hi Livingstone,
The side effects of minocycline are minor compared to the medicines in the existing treatment protocol for RA. When the medicine has an effect it usually leads to permanant remission. Yes it takes time, often 2 years but compared with having to eat very toxic medicines for the rest of your life, to me is a better option. True, that it does not work for everyone, but the same can be argued with the medicines used. True is also that a very aggressive erosive RA is an other thing that a milder form of the disease. Its hard to understand why the doctors are so reluctant to start with a safer treatment for non erosive milder cases of RA.
I was treated with Minocycline for a year. I was diagnosed with RA in 2013 and like you didn't want to take methotrexate.
I asked my NHS rheumatologist if he would prescribe it, but he refused and said it wouldn't work.
I spent hours online searching for information and found the Road Back forum. They gave me links to private clinics in the UK where they will treat you with Minocycline.
Two years later I am in remission and on no medication.
Their website is currently being revamped and will not be up and running again for a week or two.
Could you please give me the links to clinics and doctors who treat RA with minocin!!😊 Just cannot find any!
Hiya Simba1992. This thread is a couple of months old & the person you've asked the question of is no longer a member (a grey avatar means their account is deleted) so will not be aware of your question. If you wish to ask your question to the forum just use the green "Write a post" box on the right of the page.
I'm sure you'll receive replies & hope you find site helpful.
It's a difficult one, as the experience of people on this forum shows that RA is such a variable disease and responses to treatment also vary hugely - so it is entirely possible that this might be the right treatment for you. Particularly as I do think that one's attitude to treatment is important - look at how effective placebo treatments can be!
My lodger had reactive arthritis many years ago that was successfully treated with antibiotics. And I think at the start it's hard to distinguish between reactive arthritis and persistent inflammatory arthritis. So if your symptoms are mild, and you're not getting bone erosions then perhaps there's time for you to try out other approaches if that's what would make you feel more comfortable.
But there's nothing that has no possible side effects, and even some of the most harmless sounding health shop supplements can cause serious problems for some. So do please think carefully about the details as long term use of antibiotics can cause other problems. I'm past child bearing, so MTX doesn't worry me at all, and has been brilliant for me - but I can understand it sounds offputting for others.
Minocycline can be taken safely alongside methotrexate if necessary . This is beneficial ,as it can take a long time to work. The dose is very small , 300mg a week, far less than the amount to treat acne sufferers, who are usually prescribed 1400mg per week.
My bloods were tested every three months and I had no adverse side effects. I took a quality probiotic to maintain good gut health and was careful in the sun. Minocycline can cause skin sensitivity .
This treatment doesn't work for every one , but I wanted to make my own decision on my treatment, and I am glad I did.
Hi pepperpot33,
If you would like to talk about the possible treatments for RA and your concerns please do call the helpline:
0800 298 7650 Monday - Friday 9.30am - 4.30pm
I have put a link below to some information on the use of anti-biotics in treating inflammatory conditions for you to look at:
arthritisresearchuk.org/art...
Hope this helps
regards
Beverley (NRAS Helpline)
Hi everyone thank-you for the warm welcomes.
I was diagnosed 8 weeks ago and the consultant has prescribed 15mg of Methx,plus folic acid also Hydroxychloroquine twice aday.
I haven't taken any !
I have researched and I don't feel comfortable putting toxic chemicals like that into my already sick body.
I have only had one consultation with my rheumy and then had all follow up appointments with a nurse, is that normal?
I have researched Dr Thomas McPherson Brown and his book "the road back", and his infection theory and treatment of 10,000 patients with excellent results with minocycline this is the treatment I want.
I am also reading "The new Arthritis breakthrough" by Henry Scammell which has the "The road back" included, it is a must for all arthritis sufferers, as it explains in depth the illness plus the reasons why politically we are not offered the best treatments.
I haven't had any info about my RA, only that it is seron positive and hasn't eroded any bones , so far it is in my fingers and wrists.
I asked the nurse at my last appointment can he tell from my blood tests is the RA going to be mild or aggressive, and he replied he didn't know.
I am also on a low acid diet No meat, wheat, dairy, coffee, alcohol, citrus fruits.
I do eat fruit ,veg , pulses, oats, nuts, seeds, fish and I drink cider apple vinegar with
Honey 3 times aday and take Krill oil and vitiman supplements.
I feel good, but it is hard and have lost weight but I still dream of crisps and choc!
Thanks for all your advice much appreciated as getting to know RA is a bit daunting.
I don't know how to do those smiley face things so please imagine one.
Best wishes Pepperpot
Hey Pepperpot33 - The only test that I know of that can tell you aggressive, etc. is the Vectra DA vectrada.com/ , but just know that my insurance in the US didn't cover it (investigational) and it was a $1k test. My rheumatologist had an agreement with the Vectra lab to accept what the insurance paid and a $25.00 co pay from the patient. But I was classified as aggressive and severe (in the top third of the scoring, and the Minocycline is working well for me.. Good luck
Yes it's quite normal to see more of the specialist nurse than the consultant, so don't feel you're being treated unfairly.
If you've been researching then you'll probably have read that sero-positive RA can be more aggressive than sero-negative, and that it can make a big difference to the long term outcome if you treat RA aggressively from the earliest possible stage. Which may be true for many people, but the disease is so variable that it also may not be true for you...... Although the fact that you're being prescribed MTX & hydroxy from the start suggest that they think it might be quite an active RA.
But, at the end of the day it's your body so it's up to you to choose what you put in it. However, what I would suggest is that you try not to burn your boats with your rheumy department, and explain why you want to do what you want to do rather than just not going for blood tests, or not getting repeat prescriptions which could get you labelled as 'did not attend'. And if they're not happy to prescribe then maybe say you'd still like to wait before actually taking the MTX & hydroxy and ask to be kept on their list. It may be that your approach doesn't work, and your RA does take off big time, and you may want to rethink without waiting for ever for another referral. I certainly well remember that by the time I got to diagnosis I would have taken anything to take the pain away as my RA just went wild and suddenly attacked about 20 joints in my body to the extent that I was virtually bed bound.
Thanks Helix
Good advice about boat burning, I will attend all appointments and say I need more time to think about meds for now.
Pepperpot ,I was terrified when I was first diagnosed and felt my life was over. It wasn't really the drugs that scared me , but the thought of spending the rest of my life being closely monitored . Blood tests , scans, hospital appointments......
My rheumatologist wasn't a particularly pleasant individual and so therefore made me even more determined to find another route back to wellness.
One thing I would suggest is that you ask your GP for a print out of your blood test results. There are plenty of sites online where you can learn what they all mean and its actually very interesting being able to see for yourself any changes that will occur.
Best of luck
Lemons x
Thanks Lemon
I will look at Road back when it is up and running again.
Did you take any other meds while you were taking minocycline?
Wishes pepper
I took Naproxen for a while . I started the Mino within 3 months of diagnosis, the sooner the better I was told.
I do think I was lucky as I responded quite quickly, however things did get worse before they began to improve.
At six months into treatment my inflammatory markers were back down to normal range. This treatment can take up to 5 years to have an effect and in those cases its recommended to use it alongside the more conventional drugs and then eventually wean off them .
Some members on the Roadback are being treated by their NHS rheumatologists with Mino, but the majority of doctors are pretty blinkered, so you may have to go private, if you decide this is for you.
Lemons x
That's interesting, although it sort of makes me doubt whether in those cases it was the minocycline or the traditional drugs that made the difference? The reason I say that is that after about 5 years on the trad drugs, and getting to a point of the disease being well controlled, my rheumy was happy for me to try weaning off the drugs as she said that sometimes the disease can just burn out. Sadly that wasn't the case for me as it all came roaring back, but it was worth a try. But who knows what did work for the people you cite...
Hi Helix
All the case studies I have read in Dr Thomas browns book
"the road Back " it hasn't come back !
That is why I am so determined to give minocycline a go,as the normal med route doesn't have this outcome, only more toxic meds and more side effects.
Best wishes Pepper
That's not quite what I was saying - according to my rheumy the normal meds CAN get work like that. Not often, but it does happen.
However, I'm not arguing that you shouldn't try out minocycline if that's what makes you feel comfortable. But if it doesn't work for you, and you start getting toomuchdamage then do please think again about trad drugs. they're really no worse than drinking alcohol in my book, and have given me my life back.
Do let us know how you get on?
In my case the Minocycline alone induced remission, I took no other DMARD.
Those on combined medication ( mino / methotrexate) who reach remission , well , who knows ? Maybe it was the antibiotic , perhaps it was the immune suppressant, or possibly it could have been both ?
Some people will have monocyclic RA ,where the disease naturally disappears after a few years.
All I know is that it worked for me and I believe a more open minded approach to treatment should be adopted.
Scepticism is fine, but the out right dismissal of alternative methods by the majority in the medical profession to treat this vile disease, is in my opinion detrimental to finding a cure.
Yes wouldn't it be good if there was more research on which treatment works best for each individual rather than the current trial and error approach.
I can sort of understand the NHS approach tho', as if one treatment works for 80% or people and the other works for 5% then they're going to propose the most likely one to start with. But that shouldn't stop research, or use of alternatives in some cases.
Has anyone had experience or heard if you need to take the branded minocycline or has there been success with the generics.
Hi Cjfi
I have read the branded minocycline is best it is called Minocin.
Have you had any luck being prescribed Minocycline.
Hi Pepperpot 33 - I can't speak for the UK, as I live in the US. But I can tell you this: I was diagnosed with RA (and hypothyroid / Sjogrens, etc.) about 6 years ago, which I didn't understand, and so ignored for about 4 years. Then after several majorly stressful things happened, my Primary Care Physician talked me into going to a Rheumatologist. I went, and told her at the first visit that I was not interested in Methotrexate or any of the biologics, and after some testing, she put me on 15 mg of MTX. After three months with no change, she put me on 20 mg of MTX. 8 months later, I was back and my toes were still turning in, my CR-P was high, my RA Factor and Sjogrens were still increasing. I was getting lumps on my feet from the toes turning and could barely walk. Sleeping 12 hours a day and not able to do much but basic things. In November 2015, I went back to her and she did a Vectra DA test and it came back with me classified as severe and aggressive. Her solution: to put me on either Humira or Remicade. When I refused, she gave me Plaquenil, which I picked up at the pharmacy, then researched and refused to take.
I found the website for Dr. Thomas McPherson Brown, an MD who started treating people with RA in the 1950, and brought around 10,000 successfully to remission primarily with Minocycline. His website is roadback.org/ .
My bottom line: I've been using Minocycline since the end of November last year and my most recent lab work shows that my RA Factor is normal, my CP-R is only two points over normal, my Sjogren's is only one point over normal, my thyroid is again in range, and my eosinophils (allergies) are normal. My hands are not swollen and red, they seldom hurt, and I can snap my fingers again. (ha ha) My toes stopped turning, and the one that had gone second is actually straightening back out although they (the medical establishment) will tell you that can't happen. I only sleep about 10 hours a day and although I still flare, it is less and less, and the pain is mostly in my feet and shins. It's like it is moving down my body. Another year and I am hoping to be in mostly remission.
One word of caution though. You would be taking 200 mg a day, and when I started I went in at the full 200. But it made me sick as a dog from the Herxheimer Reaction. I had to move it to 100 ever 2 - 3 days, then as I adjusted, moved it to 100 every other day, then every day etc. It took me about two months to move up to 200 mg every day except Sunday. I almost always take a break from my meds one day a week if I can.
So, not to recommend that this is for everyone, but I absolutely love it. And the Minocycline is much less money than the MTX. Blessings to all
BTW - Minocycline can cause stomach upset, so I take it with either lemon water, or a 00 capsule of cayenne, but don't take both at the same time - it can cause your stomach to burn..
9 years ago I discovered Minocycline as an option after enduring challenges with RA. I chose not to go to a rheumatologist and to follow the antibiotic option instead. In the first month I noticed improvement. By month 2, even more improvement. By month 3 a lot of improvement, and by the end of month 4 I was in full remission and able to stop taking Minocycline. Unfortunately that all ended a few months ago when I realized I had developed pleurisy caused from RA. By last month, I was having a full blown very painful RA flare up. My guess is a very stressful, taxing job contributed to the disease coming out of remission. This time my condition is worse... going to bed at night is like facing a torture chamber. The pain and swelling includes everything from feet to thighs and fingers to shoulders. My torso even hurts. I've had no choice but to request short term disability through my employer to buy myself the time to regain my health. However this is my logic... if my body learned how to go into remission before, it can figure it out again. Except this time, I'm loading myself up with lots of good supplements, organic food only, no breads, no processed sugars and weekly epsom salt float pools while my body gets re-acquainted with Minocyline. I'll give it a few months (if I don't go crazy from the pain in the interim), and if I'm not noticing improvement, then I'll consider the Rheumatologists awful drugs. Oh and having Methx that causes hair to fall out is not my idea of a good time.
Quite fantastic that you were in remission without meds for such a long time👍🏻😊I think you are right in paying attention to your diet alongside mino. Have understood that those who have dietary modifications with mino have the best results. Good luck, hope you don't need to go to RA meds for help. Simba
I literally stumbled upon Minocin because I had a cyst and the determatologist prescribed Minocin. It took me about a week into taking it that I realized I wasn’t hurting as much. Didn’t connect the Minocin right away. The dr had given me a refill and I had to continue until the infection was cleared. Finally in week 3 I started asking myself questions “what is different” and finally decided that I had only started Minocin & nothing else. No dietary changes, etc. I began to research myself and found that there are some ppl that benefit from taking Minocin for RA. I couldn’t believe it. I had taken methotrexate but I had spasms of the esophagus so the rheumatology had stopped that. It has been months now and I feel so much better. It is amazing. And no known side effects that I can tell. I read where some had taken it as the RA went into remission. I would absolutely love for that to happen but for now I am so grateful to not have everyday pain.
Thanks for this post. So interesting. I am thinking of trying this route but have to get myself to a specialist a way away and is not possible at the moment but I found flucloxacillin cause a dramatic improvement in my symptoms but I got a reaction to it. I'm a little wary of taking a tetracycline in case it triggers lupus ( long story ) but so interesting. Thank you for sharing and so glad it has helped you.
I have an appt on the 12 w/my rheumatologist & will be discussing it. One thing I didn’t see addressed online is taking an antibiotic all the time can make you become resistant. My little brain tho thinks surely there are much stronger antibiotics if I were in a situation where needed. When I read about some ppl that take Minocin have gone into remission I couldn’t believe it. That would be the icing on the cake. Good luck to you. It’s hard I know.
Thank you . Yes I am only on the 'thinking ' part of Minocin and would not want to take any antibiotic long term either. There is no easy answer for most of us. It is hard. Because of my positive reaction to flucloxacillin I really do believe it is the answer for some but not all as this has so many triggers and causes. Thank you again and the very best of luck to you too.
Hi, I am a 70 yr old female and was diagnosed with RA through blood test last year. I already knew I couldn't take Methotrexate as I was prescribed it about 15 years ago when it was thought I had Psoriatic Arthritis(I didn't). At that time, the Methro caused big problems with my heart..very fast heartbeat and I found out later that I have a valve defect, which may be why. I was prescribed Leflumonide which gave me horrible stomach aches and the RA doctor acted exasperated with me like I was just inventing reasons not to take these drugs! The RA was killing me..I was in intense pain and had zero energy. And the more I sat and did nothing, the worse I got. Also, I can't abide painkillers even if it were possible to be prescribed them now. So I was taking 5mg Prednisone and a few Advil daily and almost never being out of pain. The RA dr. told me that all that was left was injections or IV treatment and I didn't like the sound of either. I read about antibiotic treatment and asked him to let me try it..unbelievably, as I read that most doctors won't do it, he started me on Doxycycline, but I had a bad reaction (can't remember the name of the condition but I had fierce headaches from it) so next he gave me Clarithromycin. As with all antibiotics, it caused some stomach discomfort, but nothing drastic. That was 3 months ago and the result is miraculous. I was to take 2 per day, but after 2 weeks and fewer RA symptoms, I reduced it to one every other day. I haven't taken any for the last 2 weeks and am still doing good. I understand all about not overdoing antibiotics, but I also know the side effects of the strong meds that are prescribed routinely for RA. The pharmaceutical industry isn't about to let it be known that there may be safer, cheaper treatments than those RA meds that are pushed on us. Their goal sometimes seems to be to create more illness thus more profits. If you are young and are helped by these traditional meds, that's wonderful. But I can't help but wonder when I've read the NIH studies on the safe, cheap and promising results of antibiotic treatment, WHY must we beg doctors to try it?
I also meant to mention that I'm going to go back on the Clarithromycin soon..just the one pill (500mg) every other day because I just can't believe that I've cured whatever infection might have caused the RA that quickly. Also that I had a heart attack (clogged arteries, with stents inserted) just the month before the onset of the RA and I wonder if anyone else has had any experience like this..could it be related?
Hi. I too am female, age 71, diagnosed RA in January 2017. I have followed the usual dismal trail of painkillers and DMARDS with little improvement. Started with hydroxychloroquine and steroid, added methotrexate at 15mg x week, then 17.5 and now 20. Sulfasalazine in the offing.Current DAS 28 score 4.4.
Prior to diagnosis I had suffered much joint pain (usually identified as OA). In 2010 I managed to get to a rheumatology clinic at the local hospital where a rather suave consultant informed me that " we must all expect to get a little creaky as we get older". I also have suffered occasional chest infections. I had the impression on one of these occasions that while on anitibiotics my joint pain receded. Later, at about the time of the creaky diagnosis, I was found to have " unresolved pneumonia" and put on a long course of antibiotics. At the end of this treatment my joint pain had disappeared completely. I was so impressed that I went to my GP to let him know but he said it was "just a coincidence". I had no more joint pain for 6 years.
When the RA kicked in again I started to look for any information about treatment with antibiotics and I came across the Roadback Foundation and read about the Arthritis Protocol. Neither my GP nor my rheumatologist will prescribe antibiotics themselves but are quite ok with me taking them if I get them elsewhere. I found your post particularly interesting because I think that the last antibiotic that I took before my long remission was Clarithromycin and I was taking it in high doses.
Through the Roadback Foundation I found a private doctor willing to prescribe Minocin but after 8 months or so I could discern no great improvement. I ran out of supplies and thought I would take a break to see how the other drugs were performing and to allow my bank account to recover. I am convinced that antibiotics fight my RA but my problem is to find a reliable source of supply and medical supervision.
I would be really interested to know how you have got on with your Clarithromycin regime and if you are still pain free. And to hear of anyone elses experience in using antibiotics to combat this miserable disease.
Good Morning! In 2013, I was diagnosed with RA. Went to a rheumatologist who wanted to put me on IV drugs every 8 weeks. Researched and found a wonderful MD in Lufkin Texas who is so smart! Trying to make this short. Anyway, I saw her and she put me on mino. It took about 3 months but it was worth it. My pain and swelling slowly went away. I was pretty much symptom free for about 4 years but a few months ago, I had an infection in my colon. I had to get off the RA antibiotics. Now my pain and swelling in my hands and shoulders is back but also, now, I am back on my mino and praying that since it worked before it will work again! Remember, in being treated with mino the brand matters. I don't ever ever want to get completely off the mino again!
Hi there
So sorry to hear that you are in pain again. I hope the minocin is helping by now. I have read about the importance of the brand but how do you know which brands exist and which one is best? I live in UK so maybe the names differ but I would still like to hear your opinion.
Can anyone let me know if there is any difference between generic and brand name Minocin please? I read on backroad website and it seems that they prefer Minocin but it is crazily expensive. Thank you.
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