Systemic Sclerosis and mino mwf

[sunny22]

Hi i havent posted before so forgive me if i havent done things correctly. I am learning. I would like to know if ppl who have been on mino 3 days a week still get to the remission stage. A few of my friends and i are unable to maintain the every day dosage due to herxing and stomach issues, etc. we have been on this program for 9 mos, 5 mos ,and 2 mos.

Also, is it possible that the size of the person might be the reason that we are unable to tolerate the regular 7 days a week, 2x/day on mino. We are all roughly 100-110lbs. Thank for all your help!

[PhilC]

Hi,

What kind of stomach issues?

Phil

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

[sunny22]

Nausea

[Lynne G.SD]

Hi Sunny;
I always took my mino with food but not a whole meal,never had nausea that way but did have it if taken on an empty stomach.Just make sure there is no calcium or iron because that will nullefy the mino.If you take it with food you lose about 15% of it’s efficacy which is better than being sick.I took mino 200mg daily until remission and then lowered the dose.MWF will probably slow down your recovery a bit.It took 2 years to get my skin soft again but I was fibrosed from head to toe.$ years to totally get hands back to normal.

[sunny22]

Hi Thank you for your replies. I know that i have to eat some food with the 2nd dose of the day ( no iron or calcium) or i cant tolerate it. When i try to take it every day (even with some food), the herxing and nausea become unbearable. I have been trying for almost 6 mos. i had just wondered if size had anything to do with it. I know that a 300lb person is on the same protocol as a 90lb person.

I know this is a long road but i am glad to hear that you got your hands back! That is the one thing i want back most of all. Among all the awful issues of this disease, the hand contractures have been on the top of the list. I was told they are the last parts to come back if at all. It sounds like i need to take the mino everyday regardless of the affects and deal with the herxing and nausea. I have had two rounds of clindy but i am not where i was hoping to be. Maybe more positive things will happen if i just deal w the side effects on the mino and take it as prescribed. Thx again! Sunny

[PhilC]

Hi Lynne,
@Lynne G./SD wrote:

If you take it with food you lose about 15% of it’s efficacy which is better than being sick.

I’ve seen that statement repeated on this forum numerous times, but it is not true. Even when minocycline is taken with a meal, the loss is much less than that.

See:
https://www.roadback.org/forum/viewtopic.php?p=62812#p62812

Phil

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

[PhilC]

Hi Sunny,
@sunny22 wrote:

I know that i have to eat some food with the 2nd dose of the day ( no iron or calcium) or i cant tolerate it.

Exactly how much minocycline are you currently taking, and are all three of you on the same dose?

Phil

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

[sunny22]

We are all on 100 mg/ 2x a day, mwf. Bad herxing and nausea on every day dose. But i will begin to take the mimo with meals. I will keep my fingers crossed that the side effects have no long term effects. I just wondered if size of patient had anything to do with these negative effects. Are there any smaller patients taking 50 mgs, 2x/day each day with the same out come?

[sunny22]

And thank you Phil for your responses.

[PhilC]

Hi Sunny,
@sunny22 wrote:

We are all on 100 mg/ 2x a day, mwf. Bad herxing and nausea on every day dose.

Have you tried taking 100 mg twice a day on MWF and only 100 mg on all of the other days of the week?

@sunny22 wrote:

Are there any smaller patients taking 50 mgs, 2x/day each day with the same out come?

I don’t know the answer to that question.

Phil

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

[sunny22]

Hi Phil,
Yes I have tried the 100mg on the non double dose days. It was just too much but i wasnt taking it with food. So i now have begun to take it everyday, 2x, w food. Hoping i will be able to tolerate it. I want to have a succuss story like most of you do and reversal of damage. And i wanted it yesterday! So, i will try to put up with the discomfort so i can make this disease history.

Still curious about size of patient and dosing. Is there any one out there who is on the small side, who takes 1/2 the recomended dose ( per doc) and has the same positive results.

Thank you. Sunny

[Lynne G.SD]

Hi Sunny;
I am 5 feet if I stand perfectly straight and 103lb.Still had to take the full dose for the first 8 years.Once I was sure of remission I started 100mg every second day

[sunny22]

Hi lynne,
Congrats to you for reaching full remission! I love to hear that. I know this method is not rapid but it is the safest i believe. Thank you for responding. I guess sometimes we just need to know that there are others out there, like – sized ppl, that are ( or have been) taking the full dose.

If i might ask, did you stay on the full ap for 8 years to reach your remission or had you gotten there earlier but didnt want to take a chance of the SD returning? I know everyone is different and recovers at their own rate but just curious if you dont mind.
Thanks again for your help!
Sunny

[Lynne G.SD]

Hi Sunny;
I was feeling just great except for my hands by year 2,total remission at 4 and I stay on antibiotics so that this darned thing does not come back to kill me.I heard that if one stops AP and the disease comes back that it is very,very difficult to go back into remission.

[sunny22]

Lynne thanks for sharing that. That is good to know. I plan to stay on until completely sure also. I wonder if there are any lasting side effects from being on mino for 8 years that you have know of?
Thx, sunny

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