Aknemin

[Patricia.Ann]

Hi everyone 🙂

I am SO excited 🙄 My appointment eventually came around (yesterday), I have been waiting for over four months since having to come off Hydroxychloroquine, to see my Rheumatologist. I live in the UK and my Doctor is within the NHS BUT he is open to any treatment suggestions I have. I feel so very fortunate because they are not all like this.

Anyway, he has given me the minocycline which I am so happy about. If I could, I would hop, skip and jump!!! Whoo Hoo.

Now, I have a bit of a dilemma. I asked him for the pelleted capsules that are slow release. He gets his pills book out and gives me the prescription. When I get to the chemist I ask again for the pelleted capsules. They get their book out too!!! However, what I have been given is called Acknemin (50mg) and not Mionocin, the pharmacy said that is all they have in capsule form here. Unfortunately, I am stuck with these now but could anyone give me any advice for the future?? Are these the right capsules to take? I know there was some info on a previous post with a link to all the different brands etc but I have looked and can’t find it 🙁 Think it was Joe RA with his brilliant information.

The other thing I was wanting to ask is… about probiotics. I have bought the Prescript Assist Soil Based Probiotics. Do I take the normal dose or add more. Could I also take the PB8 Probiotics alongside? I really don’t want to get any yeast problems. My Doc says I can take them if I want to but at such a low dose of antibiotics yeast won’t be a problem!!!! You can well understand I will be leading the journey – lol. He is an absolutely brilliant man and I really respect him but he is not conversant with the Antibiotic Protocol at all. It is definitely not the ‘done thing’ here in the UK. He is able to prescribe it for me because NICE class it as a DMARD from long ago but it is not used. I have already tried Sulfasalazine and Hydroxychloroquine and my next step would be the Anti Tnf and Biologic drugs which scare me so much.

I would really appreciate any help you can give me on the start of my journey with AP. I have read a lot of posts and have the book (which I haven’t finished yet) so I am more than ready to get going.

Take care all and I am so happy that I have found you all….x

[lynnie_sydney]

Patricia Ann – Aknemin is a generic of minocycline – which is the name of the tetracycline drug itself. Minocin is one of the brand names, available in the U.S. and in some other countries. As the drug is out of patent, there are alot of generics available on the market. Not all have been found suitable (people tend to react to certain fillers etc). You may be interested in this thread from 2009:

viewtopic.php?f=1&t=3057

This is also the link to the site that Joe RA posted:

http://www.tmgp.com/minocin.htm

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Patricia.Ann]

Thank you Lynnie. I am grateful for your swift respone.

Oh dear! I guess this has taken the edge off my excitement a bit 🙁 Unfortunately, the chemist I went to didn’t have anything else to offer so for the next four months I am ‘stuck’ with the Aknemin.

I will have a look at the threads a bit later and see what they say. That way I will have a bit more info for my next Rheumatology visit. I did say to him I wanted the slow release pelleted version and again to the pharmacist but the pharmacist was adamant aknemin was all they had. Not sure where else I would be able to get the others from but hopefully someone will be able to help me with that.

Thanks again Lynnie and for finding me the links 🙁

Love Patricia x

[Rosemary Perth Aust.]

I eventually developed incontinence (from the mycoplasma I suspect,) Found that the Akamin as they called it here at the time, which was the generic form of minocycline did not rid me of this problem, which was strange considering they always say they are the same thing, obviously they are not. both the minocycline (cannot get minocin here either) and doxycycline pelleted form, did, so I do understand why some generics work for some people and not others. Try and tell that to my pharmacist here. They get paid more here if they sell you a generic so often inclined to tell you the real thing is not available any more. Happened to me at one stage, so I went elsewhere and managed to get the the real thing, that was supposed to be no longer available. Guess you never give up.

[Patricia.Ann]

Thank you Rosemary for taking the time to reply and telling me your experience. It helps a lot.

It is soooo frustrating isn’t it?? I was sure that I had it all sorted and then this happens. I could tell when the doc opened his meds book that he wasn’t sure what to prescribe and I kept saying pelleted slow releas 👿 . Oh well, I will have to use them now. The rheumatologist will most certainly not give me another script until I go back to him in four months. Let’s hope this stuff does something for me at least.

Yes, you are right Rosemary, never give up. This is just the first of my hurdles.

Hope you are keeping well.

Patricia x

[lynnie_sydney]

Patricia – you may find that this generic works perfectly well for you – many do very well indeed on generics, some on certain generics and not others etc. Responses are very individualised. It’s something to keep up your sleeve to investigate further if you are not seeing results after 6 months.

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Patricia.Ann]

Awww Lynnie thank you so very much for your support and ‘fellow patient’ advice. I can’t tell you how much I appreciate it 😀

By the time I go back in four months to see my rheumatologist I will have a better idea how the Aknemin is working and will be able to discuss any doubts with him before he gives me another script!!!! OR I may just do fine. Let’s hope for that.

You take care Lynnie….x

[lynnie_sydney]

……you are very welcome! 😀 😀 😀 . By the way, starting ‘low and slow’ and a pulsed regime is almost always the key for those of us with inflammatory forms of rheumatoid disease. Some hyper-sensitive types have been known to herx on as little as 25mg on one day a week! Dont know what your rheumie has rx’d you, but they do have a tendency (possibly because most dont buy into infectious theory) to rx the Harvard Protocol regime – 100mg bid (twice a day) which has a trendency to produce massive (and often intolerable) herxing.

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Patricia.Ann]

I asked for 50mg capsules Lynnie and thought I would start with one x twice weekly Monday and Friday. Stay on that for a while and see how I go then add in another 50mg capsule on Wednesday. Then start adding in to make 100mg MWF. Do you think that will be okay? My rheumatologist is happy to go along with what I ask for but I will definitely be leading the way with it. He usually goes the route of Hydroxy, Sulfasalazine ( I have taken both) then anti tnf or biologics. He tells me he has had a couple of patients in the past on antibiotics but I am really not sure if that is the case or not. He buys in to the fact RA is a ‘big umbrella’ that can be caused by many differing things including viral and possibly infection. I am fortunate with him in that he is pliable within his constraints of the NHS.

If I feel I need more help as the months go on then I always have Dr H at Surrey. It is a very long way to go for me though whilst I am feeling so rough. If I need to then I will. There is also a naturopath called J de V who has a clinic a couple of hours away so I could also add that into the mix. Anything to be well again. It seems so long ago now that I felt okay. However, I am much better than I was because this time last year I was unable to walk. That’s the steroids though and they are lethal as we know. I already have osteopenia with them but without them I am back in bed!!! Have managed to get them down to 10mg though.

It is heartening to ‘talk’ to you Lynnie. Thank you 🙂 It gives me encouragement to know you have been through the same things and have become well. Take care….x

[lynnie_sydney]

He sounds like a keeper………and it sounds as if you are taking a really wise course. There are many twists and turns in this road, some predictable, others not ( a bit like life, huh?). IMHO, flexibility, educating yourself and having the ability to respond to those twists and turns are key attributes and it sounds like you have those in spades. 😀
P.S. I was on sulfasalazine about 100 years ago and did really well on that (after about the 3 month mark). My current doc says it was probably the antibiotic component of it that worked, not so keen on the sulfa part. Back then, I came off it after 2 years because I was so well and didnt like the thought of taking it (for no apparent reason) and the longterm side effects. This was before I knew anything about AP.

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Patricia.Ann]

I read your testimonial before Lynnie and it is very inspiring. I can empathise with the crying in pain bit!!!! It was a long haul for you but look at you now 😀 At the time I am sure you thought you would never be well again. As you say though it is about educating ourselves and adapting to whatever changes come along. Trying to stay bright, although very difficult at times, is important too I think.

When I was on sulfasalazine I was most unwell especially at the higher dose. Once I realised there was an antibiotic component to it I figured that my’ side effects’ may well have been a herx. This made me even more determined to try AP.

Think it must be getting very late where you are now. Bet you have had sunshine today too. I am jealous!!!!

Love Patricia x

[Joe RA]

Hi: Patricia.Ann
Below, are links that may help you in the future
for or when you get a new perscription from your
doctor, the 1st one is a trusted online pharmacy used by many roadbackers. Hope they help,
the best to all. ….Joe RA….
http://www.buylowdrugs.com/rx-drugs/minocin.php
http://www.drugs.com/minocycline-images.html

[Patricia.Ann]

That information is very useful indeed Joe RA 🙂 Brilliant.

Think we have also discussed the PB8 for life probiotics. I put them in my favourites page! Could you just remind me how many you take per day?? Was it about eight? I have the Prescript Assist for now 🙄 , because I found them on a UK website where i bought my msm and vit c powder from, but will then go onto the PB8 I think. A couple of people on here have mentioned them so they must be okey doke.

I am really grateful for your input and taking the time to do that. Thank you.

Best wishes.

Patricia x

[Joe RA]

I remember you asking me that question before,
I take 4 capsuls 3 times a day for a total of 12,
PB 8 probiotic from Nutrition Now at vitacost.com cheapest price I have found for a 8 strains probiotic. no worry about overdosing, more is better then not enough. To add to that
I also drink a quart of raw cows milk each day which I have with my meals that has all the needed vitamins, minerals and enzymes with loads of good live bacteria in it. Most bad bacteria in cows milk is made by the farmer (Not) the cow I know the farmer and his cows, (If they don’t want you in their barn) (You don”t want their milk) 😥 Patricia x, I don”t know if you
need that many probiotics, I take that much because I want to be sure I am getting enough or
more then 60 billion bacteria, 😯 I’d like to
meet the person who counts the billions and ask
them how its done. 😆 😕
The best to you and all, ….Joe RA….

[Randy]

@Patricia.Ann wrote:

I asked him for the pelleted capsules that are slow release. He gets his pills book out and gives me the prescription. When I get to the chemist I ask again for the pelleted capsules. They get their book out too!!! However, what I have been given is called Acknemin (50mg) and not Mionocin, the pharmacy said that is all they have in capsule form here. Unfortunately, I am stuck with these now but could anyone give me any advice for the future?? Are these the right capsules to take?

Patricia Ann,

I have been using Aknemin (100mg) since this April. I was very concerned at first that these were not the right type of Minocin. However, they are doing the trick just fine. Additionally, they ARE pelletized; you can open one up to check – I have. Also, these are not considered generic Minocyclin, unless I am not getting the right story from the pharmacy and Dr. F. I am being assured they are the same as brand-name Minocin. Note that they are manufactured in Reinbek Germany. My delivery comes from the Westlake Pharmacy, Hounslow, U.K. and the Pharmacy Dr. F. used for this is the Northwest Pharmacy in Canada (yes, how “the world is flat”) CustomerService@NorthWestPharmacy.com or call us toll-free at 1-866-539-5330.

I hope this helps,

Randy

Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"

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