scared

[jlc6166]

Hello Everyone!

I have been taking abx since May of this year and Minocin since mid July.  I was told my scleroderma was aggressive.  When I started on the generic abx I didn't notice much of a difference and seemed to continue to get worse, but slowly.  When I started on Minocin the progress of my disease seemed to stop. 

A little over a week ago I stopped taking Minocin for a couple of days to see if I could elicite a herx, well instead of a herx I was hit with quickly progressing skin involvement, the start of an ulcer on my thumb (first one ever), the lower part of my legs swelled so badly that they were larger than my thighs, and my ankles had puckered dimples where my ankle had once been.  🙁  I also had stiffening and swelling in my hands and have not had full movement or function in them since.

I did start taking the Minocin on the third day early, but these symptoms had already been set in motion.  My ankles are slowly getting better after 4 days back on Minocin and hopefully the rest will to.  🙂

I am writing because this occurance has really scared me.  I have known for a long time that I have been sick and I know that my husband stays up nights trying to find that illicit cure and is worried about my life and health.  However for some reason I have not been afraid, until now.  If 3 days of not taking Minocin can cause that much damage I shudder to think of what my life would be right now without this wonderful med. 

I find myself grateful for the ability to “save myself” and find myself grateful for this site that allows me to express my feelings.  😀   Before stopping the Minocin I had aches and pains and problems from this disease, however they all seem manageable compared to the problems I would be dealing with without Minocin. 

Thank you all for your posts and information and for just being there to listen to me.  :roll-laugh:

Jennifer

 

[richie]

Hi
It is upsetting to read your post –in the light of your experiment in stopping the minocin —one of the major factors in me getting better from also a fast moving case of scleroderma was that I made certain to never miss a dose and was always consistent in taking the minocin –After 10 years I still am –even though I am completely better —Incidentally –I never herxed at all —The first goal is to stop the progression of what can be a very aggressive disease —you mention you accomplished it –and then you threw it away by stopping  ???? –Glad you  are back on track and hopefully you will just forget about any experiments in the future —
richie

[Kim]

Hi Jennifer,

Like Richie said, your post was upsetting to me too.  Like yours, mine was about to take off when I started Minocin (and according to you, good thing it was brand name) and responded well.

This is why it makes me crazy when a doctor tells someone with SD to wait until symptoms get worse so we can be real sure we know what we're dealing with.  This makes no sense.  Don't wait, people!

Good luck getting back on track….kim

[lynnie_sydney]

Jennifer – so sorry you've been through such a bad time. I'll let the great SD people on this Board do most of the talking to you. Just want to clarify something. Herxing is not elicited by stopping mino/other abx. Hope things continue to impove. 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)

[Rockin Annie]

Hi Jennifer,

Just wanted to say glad you are back on track, like Richie I don't think I have had a herx either, well if I have its only been mild, and I don't know how I would feel if I was herxing badly, I know I would be very scared though, but I am so regimented in my meds now, I wouldn't dare miss anything, and thankyou for your post as it has made me more aware of being complacent………Annie

Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

[JBJBJB]

Perhaps you need 10 round of IV Clindy reboost to get everything under the control. Sure hope it won't keep getting worse. JB

[jlc6166]

I am really sorry I upset you both, I was only trying to get my experience out there so that others could learn from it without making the same mistakes.  I had origionally thought that some day in the very distant future if I was in remission that I would stop taking Mino, however now I think that I will always take it.

Jennifer

[jlc6166]

Thank you for the input, I am scheduled to get IV Clindy in a few weeks! 

Jennifer

[Cheryl F]

Jennifer,

First, even if what you have to say is upsetting for some to read, please always feel free to share here on the RBFBB.

Second, I respect that you educated yourself, made a decision, then re-evaluted when that didn't work out. I firmly believe that the Harvard protocol (100mg/mino/bid) is the safest protocol for SD. Like Richie, Jess was religious about her mino dosing for at least the first year. Right now it is a struggle (she is 19, away at college, and feeling fine, I have to do the mom nagging thing).

But the main
thing that I wanted to add is any remission can be fragile. In Jess' experience, she had been on AP for almost a year, most would have considered her to be in full remission for at least six months, when, during High School graduation time, she burned the candle at both ends, got little sleep and was under a lot of stress, and Bingo, some symptoms reappeared. My point is, you have to take care of yourself, anything that can compromise your immunesystem can trigger a flare. Lack of sleep, stress, overdoing it, anything. This treatment is a lifesaver, but most of the most experienced AP doctors who have seen 100s – 1,000s of Scleroderma patients GET BETTER, believe that the AP Treatment may be for life, it is only a rare few who can successfully go off the regular dosing. And from all I have heard, that is only after 7-10 years on the protocol.

I think that a flare/progression after this short amount of time should not be too alarming. The treatment can still work, adding the IVs will likely give it the “kick” you need to get back on track and regain your health.

Regarding your comment about your husband staying up nights trying to crack the code to find the answer so you can be around for along time to come, kudos to him. I have walked a mile or two in those shoes. With an advocate like him, you're gonna be fine!

Cheryl

[JBJBJB]

I second Cheryl. Free feel to vent. We are here for each other. I know how scared you could be, I would. Even though I was told by a well known scleroderma expert that I didn't have systemic scleroderma (internal organ involvements), I am still not out of woods yet. So I know how scary it is.

You and your husband work like a team, you will get over with this. There are several GOOD WIVES, wonderful wives, they are here for their husbands. So ask your husband to be online with us, too. Never hesitate to ask us questions, big or small, smart or “stupid” (no question is stupid :>;)

Like Cheryl said, stress can induce flares. I am going through this right now. Christmas shopping, wrapping up the end of semester projects, preparing to drive up to New York State to visit relatives…. kids… friends…. birthdays, office parties…. parties…. I keep getting cold after cold, and my lungs are not doing well….. so I am staying home, not go to Macy's today. I did most of my shopping online and will shop more from online. 

Hang in there,

JB

 

[jlc6166]

Cheryl,

Thank you for your kind reply.  I think I stopped for a few days because I was feeling so much better and I was beginning to lead myself into believing that maybe I wasn't really sick, or that I had been “fixed”. 

I believe that the treatment is working, and after my experiment I KNOW it is working.

It is good to be able to talk to people who understand what I am going through.  I have never met another person with this disease, so it is really great to have the road back to be here for me as I will be here for you if you ever need anything.

This is a group of people who have researched their disease and come to the conclusion that abx is the way to go.  I feel the same way and since it is hard to find a doctor who really believes in this treatment it is good to find people who REALLY believe in it! 

My Rheumy is using me as a case study.  I think she wants to believe in this treatment, but is unable to let herself.  On my last visit her nurse told me that my rheumy had tried to talk two very sick scleroderma patients of hers into taking the antibiotic protocal.  THe patients refused and went to get a second opinion and were told not to do it.  Now my rheumy is weary about mentioning it to others.  I want to get better just so I can prove to her that this treatment works!  I also asked the nurse to give my phone number to the two scleroderma patients who didn't believe and were very sick.  They haven't called me yet, but I hope I see them in her office and can tell them the truth!

Anyway my point is that we gain knowledge from each other and are better able to understand this disease when many doctors can't or wont. 

Lastly you are absolutely right my husband is awesome!  He has been my advocate from the very beginning and he continues to search and learn new things to share with me.   I am absolutely sure that with him by my side you are right I will be fine!

Thanks for listening and replying to my post

Jennifer

 

[Maz]

Hi Jennifer,

You sound like you have an amazingly supportive doc there! 😀 That is half the battle won sometimes.

If your doc would like some material to hand to patients for them to make their own decision about AP, then she can print off the Road Back brochures on the main website. Sometimes having something to go away with helps patients to assimilate the information better when they get home. It can be too much to take in during an appointment.

https://www.roadback.org/index.cfm/fuseaction/aboutRBF.sub/subgroup_id/31.html

As a patient, too, I know that sometimes I don't want to make a decision about any treatment right away, but go home and do due diligence…you know, research things a bit. I've brought brochures home from various docs on a number of occasions and left them on my desk, only to find them later and check them out.

If your doc doesn't want to get into the “persuasion” thing with her patients, having brochures on hand may be just the ticket for those patients who are scared and need a bit of time to figure out their options.

Just a thought….

Wishing you all the best as you hop right back on the AP wagon! 😀

Peace, Maz

 

[jlc6166]

Maz,

That's a great idea about putting brochures in the doctors office!  Thank you I will be sure to give her the info that you have found for me. 

It would be great to get the word about AP therapy out there!

Thank You,

Best wishes–Jennifer

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