Hi All - I think there might be a few people on the board that are using Minocycline to fight their RA. I went to my GP on Friday, and she was very, very surprised at how I look, and then we did the lab work.
I was so excited to get my lab work back that I had to tell someone(s) that would appreciate what I am saying: Everything but one test result dropped into range, and in some cases, the low end of the range. The only thing she forgot to run was the Sjogrens test, so next time on that. BUT, my platelets were sticky (which can cause strokes), and that has dropped into the middle of the range after I started taking 2 ginger capsules every day. Next, my Eosinophil's (allergy indicator) dropped into the bottom of the range, all of my metabolic panel dropped into the middle or bottom of the range. I switched to a Keto diet a month ago, and my cholesterol dropped 25 points (it was already within range) and my triglycerides are the lowest they have been in years. My thyroid (I take Synthroid) is in range for the first time in probably 20 years. My D3 is 68, which is the highest it has been in 25 or 30 years. My RA factor is now in the middle of the range, my sed rate is actually 15. The only test that is out of range is my CR-P - inflammation. I am going to start taking an herbal inflammatory I made to see if I can bring that down (mother in laws illness / death, and two hurricanes <one of which smacked us around a little> are probably the main reasons for the inflammation.
Good for you👍🏻😊 The only way to see if nontoxic alternative treatments work is to try them. I still have mino in my back pocket, haven't yet felt the need to try. Still keeping my RA in control with AIP diet, LDN and supplements. The best of luck!
Thanks Simba. I tried the MTX for a year and just kept having to use stronger and stronger doses, and was STILL deforming, etc. Then, at the end of the year, they decided I needed biologics so I backed up and started researching. I know this may not be for everyone, but it sure works well for me...
So many have been and are in the same position as you were with the meds and still go on and on the same route. You would really wish they would like you, give the alternatives a chance since the fact remains that they work for many and without the toxic effects.
Hi Simba - I think the issue there is that they (the allopathic physicians) really are only comfortable with one response. Even as strongly as I felt about it when I went in to see the rheumy the first time, she scared me half to death by telling me that at the rate I was progressing, I would be on a cane in three months, a walker six months after that, a wheelchair a year after that, and within four - five years, I would be bedridden. We know what comes after that for most people. So I came home in a state of shock and panic and decided that I would do what she was recommending because I didn't want to be that "bad".
I know we each have to find our own paths, and mine is probably not for everyone. And the UK health system is much different than ours here in the states, so I can influence that decision much more. But even here, with a doctor I have seen for most of my adult life it has been uncomfortable for both my doc and me about what are perceived to be the massive risks.
Hope you are having a wonderful weekend. It is beautiful here - sunny and 60 degrees with a slight breeze. Take care!
Hi Caeryl and thank you for your response. I do not know how it is in the UK but here in France the scare tactics are even more prominant than in US. I turned to a very well known prof. in rheumatology in France for help with my symptoms hoping he would have a wide knowledge of RA and different treatment options. Unfortunately my experience was just the oposite. The same scare tactics, no willingness to listen to my thoughts or treatment option. No he would not perscribe minocycline, just the agressive package, take it or leave it! And this was a doctor who was one of the specialists in back of the EULAR guidelines for RA treatment where one of the most important points was the cooperation, concerning line of treatment, between patient and doctor.
I'm so sorry. If you want to try the minocycline, ask the Road Back Foundation (they have a "contact us" section) if they know of a doctor in your area or not. I'm not sure if they are international or just US. Fingers crossed at any rate for something positive for you soon sweetie...
Hi Caeryl, Thank you for your reply. You probably missed my first reply. I do have a doc in the UK that the Roadback Foundation helped me to find and who prescribed the minocykline I haven't started using it since I'm still controlling my RA with a even less toxic alternative: AIP diet, LDN and supplements. I am not compleatly without symptoms, still giving my protocol time to kick in fully. My symptoms gone 80% but would like to get rid of the 20% too! I may still need the mino(?)
Oops, Sorry - You're right - somehow I missed that... I've tried every diet from High Carb Low Fat, to Vegetarian, Vegan and none of them worked for this at least (or actually my weight - we were not very good veg folks - too much processed food..), and now we are on keto (along with the mino). That actually is working very well for weight, blood tests, and only have the inflammation to kick. So what are AIP and LDN? Thanks!
AIP is Autoimmune Paleo Diet, actually very keto. It's an elimmination diet where possible allergens are effectively elimminated, where the dysfunctional mitochondria are fed with good fats where the goal is to take care of the microbe situation in the gut and the leaky gut, that is so often found in RA. I really recommend to look it up. Dr Terry Whals who cured her MS with this diet is also one of scientists in back of the diet, together with Dr.Sarah Ballentyn. About LDN you can find here ldnscience.org. Very interesting reading!
Well done, you! Minocycline was my first choice of DMARD. But my rheumatologist didn't believe in it ... so here I am on HCQ and SSZ. I will consider going private and travelling long distance if these don't work.
Have you had any side effects from the Mino? I understand Sulphasalazine is an anti-biotic too and I'm wondering if I should be protecting myself from long-term anti-biotic use. At the minute, I'm more concerned about avoiding the sudden attacks of queasiness that it brings ... followed promptly by throwing up!
Thanks so much Em13 - It has worked so well for me in 11 months that I am stunned actually, and I just keep wanting to tell people about it. Unfortunately, a lot of them don't want to hear about it, so I appreciate your kind comments more than you know.
I know that there are side effects, but the doctor that "discovered" this treated more than 10,000 people to remission in his life, and as near as I can tell, that is still ongoing. The web site for the "Road Back Foundation" says about the Minocycline: "Brand-name Minocin is costly, but a number of effective generic minocycline versions are available today. Although Dr. Brown used both tetracycline and doxycycline, minocycline later became the favored choice as a bacteriostatic antibiotic due to its greater lipid solubility (ability to cross cell walls) and hence superior absorption. Simply put, in many cases, it seems to work faster. Unlike bacteriocidal antibiotics, which target cell-walled pathogens, bacteriostatic antibiotics are intended for use against intracellular pathogens (those that parasitize host cells) and cell-wall-deficient bacteria (such as mycoplasma, that do not have a cell wall but rather just an outer lipid layer)." roadback.org/faqs/
Additionally, I found that there are six primary criteria to remission, and they include:
1) Morning stiffness for no more than 15 minutes
2) No fatigue
3) No joint pain as reported by the patient
4) No joint pain on examination with motion
5) No swelling of joint tissues or tendon sheaths
6) Sedimentation rates under 30 for women and 20 for men.
If you meet at least five of these, you are considered in remission. I meet all but three at the moment, after 11 months, so I am very excited that in a year or two, I MAY be in remission. In the meantime, I know there are effects that could be concerning, but right now I'm just going with this
Oooohhhh - Nausea and vomiting are not good... Actually, I took care of that on purpose, and by accident. The on purpose part was to take one or two cayenne capsules along with the minocycline, and that did it. The accidental part is if I take them with lemon and water. Every morning I make a large pitcher of water with a lemon cut up / squeezed into it and I probably go through 2 1/2 a of those day. I discovered one day that I had forgotten my cayenne when I took the minocycline, and no stomach upset. So, as long as I do one or the other, I'm good. If I do neither, I get major stomach cramps, although no vomiting at this point.
Sorry - You are probably thinking - jeeze.... enough already.. so, I'll stop. But again, thank you so much for the nice post. Have a great weekend!
Oh - one more thing - here in the US at least, they give this to kids for their zits.. ha ha ha
They prescribe it for acne here too. In the beginning, I did do a lot of research into RA causes/treatments including buying copies of "The New Arthritis Breakthrough" and "The Infection Connection". It seemed odd that with so much evidence for Mino working, that here it only seems to be used as a last resort, if at all. My rheumatologist dismissed it completely when I mentioned it at one of my first appointments.
Fortunately, I'm not sick every day. I sometimes think it is my body's way of rejecting what it can't cope with at that time.
Let's hope it soon gets you into full remission. (And keep us posted on that.) Remission is something I don't particularly understand as technically I probably meet the criteria you mention, yet I feel like crap much of the time!
Awww- I'm sorry - The site I got that from didn't add "doesn't feel like crap much of the time", but in retrospect they probably should have, yes? Just out of curiosity, and if it is not too personal, what is making you feel so bad? Pain, fatigue?
Yeah my rheumy did the same thing... not with Minocycline - I didn't know about that yet.. but with alternatives to the "gold standard" (my GPs words) of MTX and Biologics...
Take care Em, and I hope you have a great weekend!
Thank you. Maybe it just me that feels crap! Back in the summer I was feeling this way and my ESR was 15 and my CRP was 0.7 (both in the normal range), so maybe my ills are not even related to inflammatory processes.
It's not fatigue, stiffness (never had either) or even pain as such, it's just general achiness, lack of appetite and enjoyment of food, not sleeping as deeply as I'd like etc. Then feeling or being sick at times. I'm only en route to developing full RA, and I'm already fed up with it and the side effects of the medicines. And half the time I can't tell one from the other, or if I'm suffering from undiagnosed fibro or other condition as well!
I'm not giving up on the idea of getting onto Minocycline. I would much rather avoid the "gold standard" if I possibly can.
Last summer I had a really horrendous time after my Dad died, with excruciating pain in both hands and arms and inflammation in my left wrist. I couldn't even hold a book to read or turn on a tap because it was so painful. By the time I was diagnosed a few months later, I'd changed my diet and was feeling fine in myself again. Although I moan, I have never gone back to that level of pain since. It just feels as if my life is on hold at the moment ... waiting to feel better ... waiting to get my "sparkle" and enthusiasm back ... waiting to rejoin the rest of the human race.
Hi Em - Your note makes me hurt - The inflammation effect is huge, and stress always ratchets that up several notches... Mine was with my mother in law, and even though we were not close, the stress was very real during her five months of severe illness (she actually announced in February that she wasn't going to eat any more,,, and she didn't..) and then her death
If I were you, I think I would try to nudge my GP more to help find an answer. I'm not a doctor, so it would be hard for me to guess, and I suspect that one of the main issues you are having right now. If you don't have a diagnosis, then you start to wonder what is wrong with you, and you feel like a fake, which in turn, makes you feel worse.. you can't even tell people about it, because you don't really know what to say..
I hope you have a restful weekend and feel better soon.
Thanks, Caeryl. I know what you mean about stress. Some situations we just can't avoid though. And supporting someone while they die must be one of the most stressful of all, especially if you have other unavoidable responsibilities too and are constantly pulled in different directions.
I do have a diagnosis - "early non-erosive RA, palindromic presentation" based on positive RF and anti-CCP rather than symptoms. If my problems were joint related, I think I would at least feel I knew where I stood. I don't think my GPs would be interested in determining whether or not I have something else going on. I wouldn't say they think I'm a hypochondriac, but one did express the opinion that I was understandably a little unhinged by my diagnosis and peri-menopausal, rather than accepting that I was genuinely having problems with the HCQ dosage being too high.
So I tend not to see a GP unless I really have to - and especially not that one! But some of this may be down to being deficient in vitamin D, low haemoglobin levels, or something I've not even been tested for. Who knows? Fingers crossed that in four weeks, the effects of the SSZ will be apparent and I will be leaping out of bed in the morning before the radio alarm comes on, ready to face the day!
That would be awesome. I used to be low in D as well. I was taking 50,000 ius a day (and maybe twice - I can't remember). Then one day I was talking to a lady in the waiting room at my Chiropractor's office, and she told me that her endocrinologist said not to take the prescription stuff and switch to over the counter D3. I did some research, switched, and this last blood test, I was a 68, instead of the "normal" 17 or so I had been running. so if you know you are low, you might try that. I take 30,000 D3 a day..
I love that they blame everything on menopause. Near as I could tell when I went through it, I just got hot flashes all of the time - ha ha. Now that I have RA, it's the same...
Finger crossed if you can that the meds will work, and hopefully you will start getting some relief sooner rather than later... Take care
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I haven't started using it since I'm still controlling my RA with a even less toxic alternative: AIP diet, LDN and supplements. I am not compleatly without symptoms, still giving my protocol time to kick in fully. My symptoms gone 80% but would like to get rid of the 20% too! I may still need the mino(?)
Update.
Update
Any experience with methotrexate alternatives?
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