Doxy vs Mino for SD

[Randy]

Hi Everyone,

In March ’14 I switched to Doxy to address my darkening facial skin. Unfortunately my SD symptoms worsened, or I came out of “remission”. Here’s a brief summary:

Assuming my worsening symptoms are not just attributed to the progressive nature of SD, the Doxy did not work for me (Note, Dr. F. attributes my worsening conditions to my AP protocol change).

My facial black splotches did lighten up by about 50%. More aggressive application of sunscreen could also have contributed. But, around 5 months later I knew I needed to be back on Mino full throttle. I am currently back on everyday Mino and 3wk IV cycles again to stop the SD march of worsening symptoms.

It is re-educational at least to once again experience my progression of SD symptoms. After being in “remission” for quite a while, I now can say we don’t soon forget what getting SD is like, however, how quickly we recall and understand what’s going on (compared to how long it typically takes to conclude a SD diagnosis).

For me, to sustain in a “remission” state, it appears that I need somewhere between 4-5 days of 100mg twice daily Mino per week.

Here’s how I’ve reduced mino to try to increase ImG and address hypopigmentation, or reduced clindy IV’s because I was doing so well. Note, all changes were approved by Dr. F. at the time.

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.
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)

All this is informative, sickly interesting, and certainly particular to me and my subset form of diffuse SD (RNA polymerase III positive). But hopefully it may be helpful to someone else on our challenging SD road.

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"

[Lynne G.SD]

Hi Randy;
The exact same thing happened to me and for the same reasons.I have blue all around my mouth and over one eye.It is much paler now due to doxy but I have to go back on mino that I started up again last week.2 years ago I got the scare of my life when the SD came back as I was unaware that the pharmacy had changed my mino to APO in the same colour capsule,it took about 5 months to get sick again.I had to take pred for 3 days along with the Teva mino and withing a couple of weeks I was back to normal.Hang in Kid.
Lynne

[Randy]

Hi Lynne,

Nice to hear from you. What’s APO?
I’m glad to hear you were back to normal within a couple of weeks.

It’s been about 6 wks since I went back to mino every day. It was interesting to see the renewed afternoon fatigue symptom was once again the first SD symptom to once again improve. Additionally, the herxing from the IV’s is once again very significant. Another renewed symptom, finger tip and finger pitting / ulcers have been kept at bay. For me there is definitely a battle going on with other renewed symptoms – some times I feel like I’m winning, but I’m confident that the AP protocol will once again prevail.

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"

[richie]

Hi Randy —
I am all kinds of colors –I think its a small price to pay –I still use 200 mg daily of minocin with no effects except it looks like I live in New Mexico year round —Seriously -hope you get back on track real fast —
richie

[Lynne G.SD]

Hi Randy;
APO is Apotex that makes many generics in India.Our gov. is really pissed off at them and is lowering the boom.
My SD did not progress as fast as your’s .I had sore ligaments from head to toe and burning muscles,stifish hands and burning feet so I guess I was very lucky.

[Randy]

Hi Richie,

I was hoping you would reply. I have read your many of your posts where you have said you just continue to take mino every day. Did you ever try to adjust your AP protocol?

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"

[richie]

Hi No -I never tried to adjust the dose –once in awhile I do miss a dose and only take one a day -but thats about it —
richie

[PhilC]

Hi Randy,

How much doxy were you taking just before switching back to mino?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Randy]

Hi Phil,

3/4/2014 – Began doxy 5 days/wk (to address hypopigmentation)
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 hope this answers the question.

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"

[richie]

Hi Over the years and doing lots of reading and seeing results and speaking to many folks who have SD etc –I come to the conclusion that doxy and minocycline are really not interchangeable –at least for scleroderma –Each one contains properties that the other doesnt and vice versa —I.e. The government stockpiles doxy for a possible anthrax attack –not mino —-Secondly minocycline has many properties that are helpful to the skin –case in point –the gold standard for any teenager being treated for acne is a course on minocycline –first thing prescribed –and over the years people with scleroderma seem to respond much better to minocycline than doxycycline –I dont think we will ever know the answer why as research is almost non existent into these meds -but results tell the tale –I have preached over the years that relapse is very probable when stopping minocycline -DR T so much as told me this years ago –Full dose maybe a bit much but its ok for me –but certainly a maintenance dose of minocycline is a prudent approach imo—Folks- this scleroderma never goes away –it just gets held in check —
richie

[PhilC]

Hi Randy,

You never said exactly how much doxy you were taking, only the number of days.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Randy]

Hi Phil,

Sorry I didn’t respond sooner. I was taking 100mg Doxy twice daily.

Here’s an update:

It has been a bit rough for me, though everything is relative. Although I have been back on twice daily mino since 9/8/14, the AP has not caught up with the progressing skin involvement. It is interesting to revisit the symptoms, but not something anyone should want to do. Lyrica is once again helping deal with the burning, itching, and pinging to be comfortable enough at night to sleep. Fortunately, there is nothing to indicate any internal complications yet.

To compound things, coincidently, my insurance company put the brakes on my Clindy IV’s, so about 1 1/2 wks ago Dr. F. Rx’d 300mg oral Clindy twice daily for me to take in addition to the mino (until we can reestablish the IV’s in the future).

So the question of the day is, why the Clindy in the first place? Interestingly, according to Dr. F., we don’t know what triggered my SD (or any of ours, I’d imagine); however, apparently the Clindy goes after some triggering bugs that the Mino doesn’t get.

All I know is that (1) Dr. F. believes my SD worsening is due to my switching from Mino to Doxy, and (2) the AP protocol of mine, which included Clindy IV’s, worked for me before – so (3) I have to have faith that it will work for me again.

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"

[richie]

Hi Randy –Sorry to hear you are having a tough time —I have a strong bias toward mino –so I do think DR F is correct about the switch –I still keep pumping the mino–with its various minor discolorations—just a reminder I recall when I had terrible itching an OTC product called Sarna provided short term relief -Also as a suggestion go back to basics –stretch your mouth –and do finger excercises —
richie

[PhilC]

Hi Randy,

Are you taking any vitamin C?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Randy]

Dr. F. wanted me to take a lot of Vit C (if I recall, 3K/day) for the discoloration. I did for a while, but found it didn’t do much; sunscreen is much more significant. So I haven’t taken Vit C for a bit. I’m not too concerned about discoloration right now.

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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