Forum

Minocycline Trials

I’ve been reading on a few Internet sites about some interesting research currently being carried out into how Minocycline can reduce relapse’s and in some cases have held back a relapses altogether.

Some might be aware what Minocycline is used for, if not, well basically it’s very commonly used as an anti acne drug, but in fact no one actually knows why this drug is good at controlling acne, some suggestions are because of it’s anti inflammatory content.

It is because of this anti inflammatory content that MS researchers decided to involve it in trials for MS, and it looks like theres been some promising results, it is though early days I suppose ?

The reason I picked up on this particular drug trial was because about 10 years I was put on Minocycline for Rocsea, a form of adult acne, I stayed on the drug for around 6 years, maybe a bit longer, missing out 1 month in every 3 .

I would take one tablet daily for 3 months then have a break for about a month, then back on them for another 3 months and so on.

Like I say this went on for around 6 years, just over 4 years ago I decided to stop taking them because basically the condition had healed up within a few months of starting them but my doctor had said in the beginning to keep taking them on and off as it was good to have it my system.

Now then, just over about 4 years ago I decided that it was time to stop them because the condition had long gone and I couldn’t see the point in just taking them for nothing, so one day I just stopped, without any cutting down.

Well within 6 months of stopping I had my very first full on MS attack !

This may or may not be a coincidence, but when I think back about my MS and the symptoms I have now and had years ago, I can clearly re-call having numbness in my hands many many years ago, long before being diagnosed with MS, but these symptoms levelled out around the time I was taking the Minocycline.

For years I thought the numbness was Carpel Tunnel, but since being diagnosed with MS my neuro has said it was probably the very beginning of the MS many many years ago that settled down before flaring up years later into the full blown MS.

Nobody has ever enquired about the Minocycline that I had been on, and I never really put the two things together !

So, just a thought but could there be some proof that Minocycline does have an effect on MS ?

Was taking it for all them years holding back my MS, and then after stopping suddenly it allowed the MS to kick of with a vengeance ?

It does now make me wonder why the numbness in my hands all them years ago eased to almost nothing whilst I was on the Minocycline, and then within a few months of suddenly stopping it after 6 years I had my first proper MS attack !

Food for though, or should I say Minocycline for thought ?

I have a consultation this Thursday so I"ll be throwing the question at the neuro !

Well just got back from a consultation with neuro and basically laughed off any suggestion that Minocycline has any benefits when taking for MS. In fact she said she wished she had a £ for all the ongoing trials that are a waste of time !! As for my MS, she doesn’t think the disease has progressed, but just getting older and dealing with the symptoms is just getting harder. So I guess its good news in a strange way ?

It does in a way J! If it’s any consolation, last week my hubby met a chap who’s wife had MS & guess what? Oregano oil later she is cured, how about that?! Apparently, MS is due to bacterial infection & after 3, yes 3 drops of this oil she is cured. I have looked at it I’ll be honest, even been tempted to purchase some, but I need some more research I’m afraid. It’ll probably be down to my own investigations, but I’m not holding my breath. Considering the copious amounts of Oregano I consume in my diet, I should never have got MS in the 1st place in theory. So, by all means stay open minded, but look closely, she doesn’t take any drugs at all now, apparently!! having not met her, let alone seen her pre ‘cure’ I’m a tad wary of this declaration, but they believe it & are happy so who I am to scoff!!! Good luck to them, I’m however, unconvinced. x

After my latest consultation I felt more let down than ever before. Basically it just felt like a pep talk from the consultant, advising me to basically keep my spirits up. There was very little discussion about the Pregablin that I’m on, but do not think its doing any good, in fact when I tried to ask about the dosage or perhaps even coming off it she just changed the subject. I asked about going back on Baclofen, but again I was told just see how things go ! I wanted to scream at her, THINGS ARE GOING SH*T WOMAN, FOR GODS SAKE !! Personally I think my so called “specialist nurse”, arranged this consultation because he is fed up of me contacting the clinic for advice or to tell them when things are bad, yet this is exactly what they tell you to do when they first tell you that you have bloody MS. So I think it was a case of, just get him in to see the consultant, and then he might leave us alone. I really do believe this was the case, because absolutely nothing at all came out of that meeting whatsoever. I was hoping for a change perhaps in meds or at the very least a change in the dosage of the meds I’m already on, especially as I was seeing a different consultant to one that normally does the MS consultations ! I really am losing faith in the MS clinic at Morriston hospital.

The medics get very tetchy when you suggest something ‘outside the box.’