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I think I've adopted a rather “gung ho” approach to taking my Mino and I am really suffering at the moment. I wanted to get as much in me as possible and I think I am suffering as a result. I'm also concerned as my rheumatologist gave me a steroid injection 11 days ago and I dont know how this has affected the AP.
I started taking the Mino at about the same time as I had my last injection. The next day the steroids kicked in and I felt as fit as a fiddle. The following day things deteriorated and have been doing so ever since.
I think I need to reduce my dosage because this is what I believe is causing the pain but I'm not quite sure how best to do this? Down from 100mg twice a day to once a day or alternate days? I'm a stubborn bugger at the best of times and part of me also thinks I should ride this out.
Very confused and in pain. Just want to make sure my next move is the right one!
S
Simon – a little patience is probably in order. All the literature confirms that treatment usually needs to be tweaked to suit the individual. So the next move may not even be the absolute right one…….and protocols can need tweaking as you go along. If it were me, I'd be trialling 100mg MWF. And, if that still causes you alot of pain, then reduce further until herxing is tolerable. We have had hypersensitive people in the past start on a pulse dose of 25mg a day on 2 days a week and they still herxed. More is not necessarily better on AP, it can be quite counter-intuitive. And, as I mentioned in a previous post, if you are getting increased inflammation with the pain, the abx will not be able to penetrate and do its work anyway. You might even consider 2 or 3 days break to let your body settle down before you start on a lower and pulsed dose. Lynnie
P.S. BTW I'm not sure looking back on your posts to date whether you did manage to get a copy of The New Arthritis Breakthrough by Henry Scammell. That is such a good place to start and get acquainted with AP, I would so recommend that you do that if you havent already. It will make things so much clearer. It's what completely turned a light on for me. 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)Hi Lynnie, patience was never one of my strengths!
I am going to come of the Minocycline until Monday and then start a 100mg pulse dose M-W-F in the hope that the pain will have eased by then. I've tried to tolerate it but when you cant sleep and it affects your work……:(
Feel very disappointed but tomorrow is another day.
Thanks as always for your help and kind words
S 🙂
Simon – dont understand your disappointment because less is often more with AP. Please read the book, you wont regret it. And have a look at the Dr Brown video, for which there is a link from the top of this Board. This treatment is not a quick fix, rather a slow road to wellness, so start cultivating that patient gene! BTW I went into symptomatic remission on 100mg MWF. 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)[user=1526]hotspur2904[/user] wrote:
patience was never one of my strengths!
Simon, don't worry…you're not alone. I did the same thing and was all gung-ho in the beginning, too. :blush:
I started out on 100mg mino a day and then increased the next week to twice a day. Boy, the herx was incredible! My rationale at the time was…hey, if mino has such great anti-inflamm props then I'll be getting the both of best worlds…bug-killing and less inflammation. WRONG! :roll-laugh:
I dialed back to 100mg twice a day on MWF and did fine on that dose thereafter, but I think your plan to have a brief washout and then re-commence at 100mg MWF sounds good. It's much harder to find an optimal dose by dialing backwards than dialing fwds, because of the herxing confusing the picture.
Lynnie's fellow-patient insights are spot on, as always! 😀
Peace, Maz
Simon,
The most I could (and can) seem to tolerate is 100mg every other day.
I cried and cried in the beginning because I was in such bad shape…and thought I'd never be able to take it.
Thanks to my angels here (Maz, Lynnie, Superperro and others to numerous too name) I was able to see past my then bleak emotional state.
I called both of my RA docs and ***with my doctor's approval***I backed off for a couple or 3 days and then went back on every other day and did much, much better.
Believe it or not I STILL herx but not like before (thank God!) Call your doc, get their blessing on any changes and I bet in no time you'll find the right dose for you.
For me, for sure more is not necessarily better.
–whaleharbor
Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.
Try not to be discouraged. It's a marathon, not a sprint. 🙂
I started out very low, and pulsing. At first I was just looking for a window here and there, a hour or so, of less pain.
Improvement was subtle, gradual, with ups and downs.
Hang in there.
Thanks for all you kind words! I've always gone at things like a bull in a china shop and I guess I tried to do the same thing with the AP!
Going to start a pulse dose of Minocycline from Monday.
Thanks again
Simon
ps Lynnie I have read the book and watched the video, just guess I thought more was better than less! 🙂
Simon,
Try to take it a day at a time, and be patient… Everyones body is different….. I am new to A.P. since middle of June this year. At first I thought I would never feel better, then I learned that the Pharmacy had given me the wrong antibiotic, and after taking it for 3 weeks I thought I was going to die…….. I then got on the right (minocycline) and am starting to feel a lot better, I know it is not a QUICK fix and that it will be rocky at times, I do know that I will get better in time. I look forward to the day when I can post “HEY GUYS, GUESS WHAT, I”M IN REMISSION”. Just wanted to give you a little encouragment. Hang in for the long haul…o.k. take care!
Judy
Hi, Simon,
I'm still a newbie, but wanted to let you know what has happened in the last week. I have RA and started Doxy on 08/06. I was gung-ho like you. I wanted to fry the little critters. :roll-laugh: Last week I was herxing terribly. My pain originally was in my hands/feet, but now I also had pain in ankles/knees!? And one finger was very swollen and tender. It was hard going up/down stairs.
Well, lynnie said this was textbook herx and Maz said this happened to her in the beginning, and might want to check with my rheumy and reduce the dose. I was going to do this on Monday. I woke up Monday and had 90% less pain in my feet and knees. I waited. Tuesday, NO pain in my left hand. Wednesday, right finger less swollen and didn't hurt as much to *lateral compression*. Wow. I am so flabbergasted, I don't know what to do! AP REALLY WORKS!! All this has happened in one month on Doxy (plus a couple weeks on Mino in July). I have taken my full 1000 mg Naproxen split up: 250 in a.m.; 250 afternoon; 500 night. I think this has made a difference by reducing the inflammation and letting the Doxy do its job.
Anyway, hope this helps you to hang in there!!! I really cannot fathom where I would be if I listened to my rheumy and stayed on Enbrel and MTX. Oh, Lordy, what a cocktail of rat poison. :angry:
Many thanks to Maz and lynnie for *holding my hand*. :):)
Many thanks to Maz and lynnie for *holding my hand*. :):)
Maz and Lynnie and all of the others are angels and I could not have made it this far without their support. Thank you RBF, Thank you Dr. Brown. Thank you volunteers and members and Thank you God.
I'm not “there” yet but I'm certainly not where I was before.
— whaleharbor
Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.
Hi Simon,
I think you've been given great advice on the antibiotics. I just wanted to address your concern about the steroid injection. The injections don't get absorbed into the body as a whole as much as when one takes the pills, so I wouldn't sweat it too much. The big concern with the injections is that if repeated in the same joint over time that joint, tendon and bone will weaken, and there are some places that are extremely dangerous to get even one injection because of the risk of tendon rupture, such as the achilles tendon. Even so, in my opinion the injections are still better than the pills, which carry so many side effects over the long term and are extremely difficult to wean off of. .
Remeber that depression is a symptom of arthitis, and if your are having a bad herx from your gung ho approach, you not only would have joint pain but also just feeling bad mentally, like your feeling of disappointment. Try not to read too much into those discouraged feelings. You sound like a fighter, so I'm sure with the adjusted dose you'll do just fine.
Hi Linda,
The steroid injections I have been having are not joint specific (Kenalog in the butt!) however as I mentioned this last injection only lasted a day rather than the normal 4-6 weeks.
I guess I thought that the Herx I experienced wouldnt happen due to the steroids….. how wrong could I be.
Anyhow, I've been off the Minocycline 200mg/day dose and I'm going to start 100mg M-W-F from Monday.
I've also recently changed my anti-inflammatory at my coctor's suggestion from Diclofenac 50mg 3 times a day to Arcoxia 90mg once a day. Has anybody had experience with either and know which is the lesser of two evils?
Thanks as always everyone.
Simon
Simon,
Did you change from Diclofenac before you started Minocycline? Diclofenac has been very effective for me and with my Psa it has helped the effectiveness of the Minocycline. Early on the Diclofenac controled my hip pain, but could not control the pain after my shoulders got involved. I have found that it takes about 6 hours for maximum relief after taking a Diclofenac. As I have said previously I started on 100mg twice daily Minocycline and did not experience any herx reaction. But my imflammation was at a low level because I was using 50mg twice Diclofenac and was also on 30mg prednisone, which I weaned off from in 30 days.
vinny
Psoriatic Arthritis: 100mg Minoz Minocycline TABLET daily; twice daily 400mg Pentoxifylline;125mcg Levotyroxine: Have been using some level of Minocycline since 2008
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