increasing mino dosage

[Jeni]

Hello everyone,

I have been really busy with school so I  haven't been able to update what's been going on with the new mino that I started in late November. I am really happy to report that the pelletized mino that I ordered from Canada has been working out really well with my stomach. I haven't had any problems at all, and no yeast infections! So, for me at least, there is a definite difference between the generic and the brand name stuff!

Another interesting thing that happened, is that I was off my Enbrel for almost a month due to a nasty sinus infection, and I really didn't get too stiff or sore at all. I know that it is really early to tell, but I have always responded to medicines quickly if they were going to work, and so I am really hoping that maybe the mino is going to work! I am so tired of being on all these toxic drugs! I have been on something or other for close to twenty years now, and I would really like to stop before the horrible side effects that most of these drugs have, have a chance to do something nasty to me! Anyway, I wanted to ask how long people have waited before upping their dosage of mino? I have been on 50 mg, M,W, and F, for close to 2 1/2 months now, and I was thinking of trying to go on the more usual dose of 100 mg M,W, and F. I was just wondering what experience you all have had with raising your dosages. I am working with my family doctor, but she is basically leaving it up to me as to how I want to do this. So, if anybody can offer their experiences, I would appreciate it. Thanks!

Jeni

[lynnie_sydney]

Jeni – sounds like you were really playing it safe to start on a low pulsed dose and have done well. This really is an individulaised thing. If it were me, I'd try upping to 100mg on one of the 3 days and see how that goes, gradually upping to 100mg MWF as and when you are able to tolerate it. Any adjustments to a regime can cause some herxing, so dont worry about that, as long as it's tolerable. Good luck! Lynnie 

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)

[Kim]

Very encouraging, Jeni! 😀  Sounds like you're tolerating the lower dose just fine so what Lynnie says makes perfect sense to just increase it on one day to start.

Good luck and thanks for the update.

Take care…..kim

[Davit]

Jeni

With RA because the dosage is smaller than other forms of Arthritis you may herx easier, also Minocin seems to be stronger. Some people start by increasing on Friday because of the larger span till Monday and if you can tolerate it for a couple of weeks then do Monday also. Finally adding Wednesday. But if this is going to make you go back on the Enbrel I would rather you didn't do it. When I was at 100 I started to cycle. I would have to drop back once in a while because of the Herx. and then work up again.

Patience please, remember more is not better with AP.
I am glad you are doing fine with the brand name, and here is a coincidence, a while back my brand was no longer available and the pharmacy switched me and didn't tell me. I have been taking the same brand as you. I'm not going to look at the bottle for the name. It is the only brand available now.

As long as I limited the sugar I never did get yeast but took a probiotic to be on the safe side.

Just as an aside I have a friend who has been off the mino for three months now and seems fine. Except for damage from doing DMARDs he has no sign of his RA.

Davit.

[Jeni]

Hi Lynnie,

I didn't think about just increasing for one of the days at a time. I think that that is a really good suggestion because the last thing I want to do is to make my stomach unhappy!

Thanks for the encouragement and the advice!

Jeni

[Jeni]

Hi Kim,

Thanks for the encouragement and support! I am really glad that I asked you all for advice because it would have never occurred to me to increase for just the one day to start!

Thanks!

Jeni

[Jeni]

Hi Davit,

I am glad you suggested Friday because that makes perfect sense with the longer gap between pills. Unfortunately, I am a chicken and I started taking my Enbrel again. My original plan was to only taper off if I definitely felt better on the mino. Going off the Enbrel has made my allergies worse I think, and my ears are still stuffed. After the month long sinus infection with stuffed ears, I have been desperate to feel better and so, I started my Enbrel again. Maybe I will cut back to only one shot a week, I'm not sure!

I am also limiting sugar, but I am taking probiotics too. I definitely don't want another yeast infection! Another reason that I have been taking probiotics is to try to heal my whole digestive system. I definitely have food allergies, and I have noticed that the probiotics help a lot with bloating and feeling sick if I have indulged in dairy or wheat.

Thanks for your ideas! I think that I will start this Friday with the increase.

Jeni

[Davit]

Jeni

Ah! I certainly won't hold it against you if you feel you need the Enbrel. I didn't know about the allergies. I'm lucky not to have any.

Good luck
Davit

[Maz]

[user=1749]Jeni[/user] wrote:

Going off the Enbrel has made my allergies worse I think, and my ears are still stuffed. After the month long sinus infection with stuffed ears, I have been desperate to feel better and so, I started my Enbrel again. Maybe I will cut back to only one shot a week, I'm not sure!

Hi Jeni,

Only a thought, but as your Enbrel wore off while you were on a break from it, I wonder if it could be that the mino started kicking in and you were experiencing some die-off…herxing. If so, this is a good thing!

There is another forum user here who was already on Enbrel when he found AP and he has been able to gradually space out his Enbrel shots over time. He hasn't posted in a while, but I seem to remember when he last posted he'd got to 3 weeks between shots. 🙂 The goal with AP is to gradually wean from immune-suppressant medication, if at all possible. It may still be early days for you on AP, but when you feel like things have stabilized again, you might feel more confident about discussing weaning with your doc.

Peace, Maz

[richie]

To Jeni –Just a quick tip –if you do increase –make it 50 mg in morning and 50 mg in evening as opposed to 100 mg at once —

richie

[Eva Holloway]

Jeni,

if you still have sinus problem please don't go back on Enbrel, that will make it worse. My pulmonary doctor put me on Biaxin and I take it Tu-Th-Sa and it really has helped  me with my sinus problem. I am still taking it after two years and it keeps it at bay.

Eva:D

Eva Holloway

[Jeni]

Thanks everyone for the additional information and support! You are all so helpful and have the most amazing info! I am truly on my own here as my rheumatologist is rather hostile towards the mino treatment! I think that she only consented to my trying the mino because my family doctor had the guts to question her about it!

I'll keep you all posted! Thanks again for the help and support!

Jeni

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