Decreasing Mino too soon?

[spacehoppa]

Hi everyone,

I'm delighted to say my ESR and CRP have been in the remission range for the past two months now! My latest CRP was <2 and my ESR was 1! I am beyond thrilled!!

My neutrophil count was also low though, which could have been because I was fighting an infection at the time, or it could be a side effect of the abx. We'll know for sure when I get this month's bloods back.

I saw my LLMD, Dr D, last week and told him how well I am and he suggested I drop the minocycline dose to 100mg once per day, instead of 100mg twice daily. (I'm also still on 5.5mg prednisolone and dropping it slowly still, as well as 1000mg clarithromycin and 400mg plaquenil.)

My question is that since dropping the mino I do feel slightly worse. I am going to give it another week or two and see if it levels out, but do any of you have an opinion about whether I'm trying to cut doses too soon? The fact that I'm still not off the prednisolone before cutting back on the abx does trouble me a little.

I have been doing so well, I guess I just don't want to go backwards at all. Thanks!

[lynnie_sydney]

Ruth great to hear from you, I was thinking about you yesterday, wondering how you are doing now! Those labs are sensational, no wonder you're thrilled. I'm wondering at what stage you dropped the pred to 5.5 and whether the decrease in the mino was a little too close to that change? Most people here know how very very hard reducing pred is and how little the reduction needs to be to produce alot of pain. Yes, maybe the mino has been acting as an anti-inflammatory as much as anything, so the reduction is not covering you so well in that regard on a reduced amount of pred. If it were me, I'd prefer to stay on a higher dose of mino if it enabled me to reduce the pred more comfortably- but that's a personal and very non-medically informed opinion. Can you put a call through to Dr D on this question? Take care, 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)

[carries]

Hi! I agree with Lynnie. I would work on reducing the pred b4 I would cut back on the mino. I have now been successfully free of pred for a little over a month. I will keep my mino dose at 100mg BID MWF.

[Maz]

[user=415]spacehoppa[/user] wrote:

I saw my LLMD, Dr D, last week and told him how well I am and he suggested I drop the minocycline dose to 100mg once per day, instead of 100mg twice daily. (I'm also still on 5.5mg prednisolone and dropping it slowly still, as well as 1000mg clarithromycin and 400mg plaquenil.)

My question is that since dropping the mino I do feel slightly worse. I am going to give it another week or two and see if it levels out, but do any of you have an opinion about whether I'm trying to cut doses too soon? The fact that I'm still not off the prednisolone before cutting back on the abx does trouble me a little.

I have been doing so well, I guess I just don't want to go backwards at all. Thanks!

Ruth – our RA/Lyme poster child!!! – congrats on your incredible labs!!! This is just fantastic news and I'm doing the happy dance for you here. :roll-laugh: Go Ruth – Go Ruth!

Just my fellow patient two cents, but I also agree with Lynnie and Carries…in your shoes, I'd keep the abx and what is working where it is and would try to get off the pred for a good period of time before attempting to change anything in my protocol. Reason being Lyme loves immune suppression and you won't know just how well you are doing until you have come completely off the last of the pred. Even then, most experienced LLMDs will leave patients who have reached remission on their protocol for a good fews months before halting treatment or lowering to a maintenance dose. This is because relapse is pretty common with Lyme and may take several re-attempts to control it once abx are withdrawn entirely.

Relapse can sometimes occur soon after abx are stopped or years down the road…it's those blasted cystic forms that seem to keep coming back for another round. It's a tenuous thing, because a Lyme patient in remission might be going along swimmingly, then catch a passing bug or go thru a stressful period and everything goes haywire again. Clearly, the goal is to get off abx altogether and remain off them, if remission can be maintained, but this is just a heads up that relapse is common and it's just better to play it really safe first time around.

As you've likely had Lyme since your GA days, some 20 years ago, this may (or may not) be an ongoing battle for a while. Hopefully, you are young enough and your immune function will have gained enough ground that you can ultimately come off the abx entirely, but taking a cautiously optimistic approach, I'd err on the side of keeping what works where it is for a while after getting off the pred first. Just what I'd do, though. 😉

So happy for you, Ruth! 😀

Peace, Maz

[mschmidt]

Ruth,

Hooray!!:roll-laugh::roll-laugh:  Congrats on your fabulous lab results! I agree with what's been said so far–I think coming off prednisone is hard enough, and cutting down on multiple drugs at the same time could be why you're feeling a little worse than normal.  I definitely would discuss this with your doctor.  I hope you figure this out soon, and get back to your wellness.:D

Maria

[spacehoppa]

Thanks for the lovely replies everyone! Yes, I am so thrilled myself I can hardly put it into words. To wake up everyday without pain is just mindblowing to me!

I am so grateful to you all. I would never be here without you.

I think I'll stick with the lowered dose for a few more days and see how it goes. The last day or so I've felt fine, but as these are the high estrogen days of my cycle, during which I usually do feel good, it's hard to say for sure.

I agree that coming off the pred is hard enough on its own. It really is just hard, hard, hard as my adrenal glands have long since forgotten that they need to do some work. My arthritis is not really flaring when I drop the dose, but I do get extremely tired, which seems to exacerbate all the other symptoms if it gets out of hand. Plus, George is teething and a bit ill, and I haven't had a good night's sleep in a week or so.

I'm tired, but in other respects I'm so very well. Even my ulcerated tongue is improved!

Sorry I haven't been around much recently – just busy enjoying the summer with a body that works! But I'm always reading how you're all getting on and thinking of you all.

[lynnie_sydney]

Ruth – did you ever read this article by Dr Stephen Cowan about ways to wean off pred? It's changed locations on the net so I'll paste in the new link. There may be things in there that could help. Enjoy your summer, Ruth! Lynnie

http://www.westonaprice.org/ask-the-doctor/228-steroid-drugs.html

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)

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