SD Remission–Mino reducing thoughts please

[kater]

Hi
Well as I mentioned I have my SD in remission–ANA and RFnow negative. I believe it was Lyme and Myco p induced. I have been on mino or doxy for 3 years plus heavy IV and oral antibiotics in addition, as well as my supplements and other therapies. I have been off the other antibiotics since August and switched back to mino from doxy 6 weeks ago. Now the doc–tends to know what he is doing 😀 — wants me to reduce the Mino to one 100mg cap a day. I am slightly concerned about that but he said that reducing from 200 to 100 is not really a significant reduction as it is in the bloodstream daily, though reducing below 100 would be a big change and not recommended. I am still noticing improvement in my Raynaud’s while on the 200 mg and no relapse at all. Just wondering what thoughts are decreasing to 100 a day? Should I reduce slowly to that ? Or not at all? I would think to reduce slowly myself but the doc said just cut out one pill a day. I WILL NOT COME OUT OF REMISSION> I just refuse. So I would value your input
thanks always
kate

OUT

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

[Maz]

Hi Kater,

Is the doc going to be monitoring you closely and ready to increase your dose if you notice any return of symptoms? How long have your labs been negative? If you’re really nervous to make the drop to half the daily dose, would he be open to doing 150mg a day to start?

[kater]

yes Maz he is fine with bumping me back up if I have any problems at all, though he seems to think I will not. I was thinking to do 200 on MWF and 100 the other and go down from there. My labs have only been negative a couple of months, though I didn’t have those ones done for probably 6 months before that so hard to know how long ago things really shifted. I know some SD people stay on the 200 indefinitely and I am sure I could do that, but also if I can manage on 100 that’s even better. Thanks for your reply . We have talked me into my 200 on MWF and 100 on the other days–will try that for a month and see how that goes before I decrease further.
thanks for your reply
cheers
kate

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

[Maz]

@kater wrote:

We have talked me into my 200 on MWF and 100 on the other days–will try that for a month and see how that goes before I decrease further.

Kate, that sounds like you’ve figured out a good plan – easy enough to dial back up if anything changes. The Raynaud’s may be your best “canary in the mine” if it stops improving or regressing. Hopefully, the doc will monitor you monthly for a while to ensure no changes in labs or signs/symptoms, so you have some peace of mind while going through the process of dose reduction. Although nerve-wracking it’s also kind of exciting, isn’t it, to get to the stage where you can actually consider doing this after being in sustained remission!!!

Spring is a few months away, the ground will be thawing and those pesky ticks will be climbing out of their hidey-holes. If you encounter any, don’t walk – run – to the LLMD. Hard not to think this way, but as Lyme warriors, we’re both pretty well-versed in knowing it’s just not worth the angst of wondering about reinfection and years of health issues again.

So happy for you, Kate! You’re an amazing woman and such a bright light for many here – thank you! 🙂

[kater]

Dear Maz
thanks for your kind thoughts as always. I am curious which labs you think would be good to monitor? Yes the whole thing is scary/exciting and as you can probably relate I just feel sick of identifying as “sick” and nauseated with swallowing pills. Not to mention broke and tired of spending money. The new normal is really wonderful. Ya I’m tick phobic again–I let go of that when I was on so many antibiotics–felt pretty invincible lol.
thanks again
kate

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

[Randy]

Hi Kate,

I can only speak for myself. I reduced to mino to 3 days a week then later switched to Doxy to address the black blotches on my face.

9/2011 – reduced mino to 5 days/wk
9/2012 – reduced mino to 4 days/wk
12/2012 – reduced mino to 3 days/wk
1/28/2013 – increased mino to 7 days/wk (due to worsening symptoms)
2/12/2013 – returned to mino 4 days/wk
3/4/2014 – Began doxy 5 days/wk (to address hypopigmentation)
5/6/2014 – reduced IV cycle to every 6 wks. Dr Franco appt.
8/25/2014 – increased doxy to 7 days/wk and IV cycle to every 3 wks (SD worsening)
9/8/2014 – returned to mino 7 days/wk (SD continuing to worsen)

I can say now that I needed at least a sustaining dose of Mino 5 days a week and 1 wk of Clindy IVs somewhere between 3-6wks.

I am in a tough battle with the skin now. Almost every part is covered, though not as bad as before. The burning and itching and stiffness is all too familiar and Lyrica is saving me right now. Hopefully I will not get any internal attack – I didn’t before. I am taking 10mg twice daily of Tadalafil (Cialis) also to help ward off PAH. The vasodialator also helps with peripheral neuropathy and raynauds and male ED (needless to say).

To make my life worse, coincidently, my insurance company stopped authorizing my Clindy IV’s, and at such a bad time. Dr F. now has me also taking twice daily 300 mg Clindamycin orally until my new insurance kicks in with the IV’s.

Bottom line (for me), assuming I survive this new SD attack and return to “remission”: I will gladly never drop below 5 days of mino per week at least and the equivalent of 1 wk of clindy IV’s every 3-6 wks.

Richie had figured all this out long ago for him and he is doing great. Soon I expect to be back in remission and also being able to tell other SD folks to just keep taking the mino dose that took them into remission.

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"

[kater]

Thanks Randy
I was hoping to hear from you and Richie. So sorry to hear about your relapse and that its not bouncing back to remission quickly. I am forewarned so thank you. I do fine on doxy and actually got into remission on it and a slew of other antibiotics and Clindy iv for the Lyme. My doc thinks 100 mg a day will sustain me and thinks I should take it every day, no pulsing. What are your thoughts on that? Did you reduce to 100 a day or always 200 with skipped days? I initially was thinking 200mg MWF but he said 100 daily is much better and not a big reduction, where going below 100mg is. He is a knowledgeable Lyme doc. I am presently doing 200 on MWF and 100 the other days–will see how I do with that.
its exciting and nervewracking in the same moment
good luck to you
please keep us informed
kate

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

[richie]

Hi Hope you got my message –I will just add –over the course of 15 years that I have been involved with this scleroderma thing I have seen far too many relapses -sadly they really could have ALL been avoided —
richie

[kater]

Yes I got it Richie thank you. I replied to you within the hour 🙂 I appreciate your opinion and input. While I dread the idea of antibiotics for life I guess it beats the alternative
cheers
kate

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

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