Change in medication

[GayG]

Good afternoon…! I’ve been on Minocyn 100 mg. twice a day for 4 years now for a very rapidly advancing case of systemic SD….I am doing very well and almost all of the ravages of this disease are gone now and my life is back to normal ….just a little bit of thickening on my hands BUT I can make a full fist now finally….I did get a chance to talk to Dr. S on the phone a few weeks ago and he said the hands are usually the last to get back to normal (I had heard he was semi-retired and returns phone calls twice a week so I called and he did return my call, what a wonderful doctor!)…..I called him due to a need to change my antibiotic from Minocin to something else due to some side effects I’m having. He told me that other drugs could be used such as Doxycline at 100 mg. twice a day or Zithromycin 250 mg, once a day, every Monday, Wednesday and Friday but they aren’t as strong as Minocin and I’d be taking a risk.

I went to see Dr. K in Lufkin and she said that she felt as if the darkening of my lower legs (which is a side effect of taking Monocin) and the ringing in my ears indicates that I do need to switch to something else before it starts effecting my liver functions, etc……Dr. Kittley suggested that I switch to Zithromycin 250 mg. every other day and Flagyl 250 mg. every other day (taken at the same time as the Zithromycin)….she stated that Zithromycin by itself wasn’t that effective in SD but if you added Flagyl that seemed to work as well as Minocin.

I do know two other SD patients that are in remission and they are holding their remission by taking Doxycyclin 100 mg. every other day and Avalox 400 mg. on the days he doesn’t take the Doxy…the other patient is doing well on Clyndamycin alone.

I was wondering if anyone with SD has tried Zithromycin and Flagyl and how is that working for you……..Dr. S. tells me that the side effects of the Minocin should reverse in about a year which is fine but I don’t want to risk losing my remission…I trust Dr. K with my life (since my remission is due to her help)…BUT, like she says there are no long term studies that gives them the knowledge to know with 100% accuracy what will work in every situation SO I thought I’d ask if anyone has had experience with these two medications…….THANK YOU! Gay

[nspiker]

Hi Gay,

I don’t have the answers to your questions, but was happy to see you on the board again. So glad you are doing so well, and SD no longer guides your life. I really appreciate all the help you provided with my MIL, but unfortunately she has been scared away from antibiotics after seeing some of the best Rheumatologists in Houston.

I certainly can understand your concern in switching from Minocin, when it has served you so well. I have darkening of my lower legs as well, but just thought it was because I am more prone to tanning with the Minocin. My husband makes fun of my little brown feet 😳 . I don’t have SD, but is that really a reason for having to switch antibiotics?

Hopefully others can chime in and offer some guidance. So happy you are doing so well….
nancy

[bonnielou]

Hi Gay — it is nice to see you here again. I am glad you have been well. I am also hitting my 4 year minocycline anniversary next month and thinking about whether I should make a change for awhile. I am RA, not SD, so I know there are different considerations. I would probably trust Dr. K too — it would be nice if we had firm answers and long term studies, but her experience is probably as good as it gets.

Wishing you the best results.

Bonnie

Bonnie Lou
RA 02/07,AP 10/07
Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!

[GayG]

Thank you both for your responses…..I’ just started taking the two new drugs yesterday (I think I misspelled one)..its Azyithromycin and Flagyl 250 mg. each every other day….I talked to Dr. K. again about this on the phone since I discovered that I won’t be able to have my daily glass for red wine since you can’t drink and take Flagy but she says that she has had good results with this medication and felt it best for me so I’m gonna go with that..(she also said well maybe you should just stop the wine!)..bummer…but the reason for switching wasn’t just due to the darkinging of the lower legs, its not on my feet, but on my lower legs just above my feet….I’m also having ringing of the ears and one of the side effects of Minocin when I looked that up is hearing loss if you start having that issue SO…I think that was Dr. K’s opinion as well, she said when she starts seeing things like that she recommends you switch to something else…..i’ve talked to several other patients in this area who are in remission and they are all on different antibiotics so it seems there are more than one kind that will do the trick…but we’ll see…I see Dr. K. again in 6 mos and will evaluate again….And Nancy, I’m so sorry your MIL got scared away from the antibiotics after talking to the doctors in Houston…it is a personal choice….I just pray that someday this will happen and the medical community as a whole will start beleiving what they are seeing in some of these patients like myself…and then studies can be done and we won’t have to always be stabbing in the dark when it comes to our treatment with these drugs……I can always pray and hope!…Love, Gay…..I’ll post again about my results on this new medication

[Cheryl F]

Gay:

So nice to see you back-glad you are doing well but sorry to hear that you are needing to make a change from the mino.

This is not really a direct answer to your question but I will share what we have done with Jess.

At about the 2-3 year mark on daily 200mg of mino, Jess began to get the blue spots, they were only on her legs at the time but I really did not want to wait until they appeared on her face. She took a break from the mino and did zith and pulses if flagyl, she the did doxy for a few months . Her blue spots faded with a couple months and she returned to mini at a considerably lower dose, like 100 mg three days per week. That was a couple years ago.

One thing I want to share with you is that Jess still does the flagyl pulses from time to time and she experiences a herx from flagyl most of the time, she never herxed on mono, so don’t be surprised if this change in meds brings a herx with it. Just know that Dr. K has the experience to navigate this road with you!

Again, glad you are well!

Cheryl

[Patti D]

Hey Bonnielou, & Gay
So glad to see you too are doing well. We were all diagnosed at the same time. Question ladies do your hands look normal? My doctor was surprised that mine look totally normal.
I too have that darkening on the legs and also above my lip. 5 oclock shadow look:))https://www.roadback.org/fhttps://www.roadback.org/forum/posting.php?mode=reply&f=1&t=6463#orum/posting.php?mode=reply&f=1&t=6463# I need to find a doctor who I don’t have to teach about AP therapy. Bonnielou, could you PM me your doctor and is he/she covered by insurance. I think I may need to get off of the mino for a while too but need to know what to switch too.

Thanks and as always tons of well wishes for continuous good days.

Patti

[Patti D]

Don’t know what happened with my above Post but I tried to drag a smiley face and got this road back jibberish. Sorry:(

[lynnie_sydney]

Patti – you dont need to drag a smilie or other face – you may have initiated something else entirely by attempting to do that???Just click on the face and it will appear as code in the writing box, then as the image when you preview or post. 😀 😀 😀 😀 😀

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)

[Patti D]

Lynnie

too funny 😆 😆 😆 😆 😆 😆 😆 😆 😆 😆 😆

Ah, that felt good 😀
Patti

[elaine e]

My husband had very dark blue/charcoal color discoloration on his entire face from taking mino. It was easily removed with a Ruby laser. Ruby lasers are not available at all dermatologists and other lasers might not work. In his case the Ruby removed the discoloration instantly with each zap. His meds were changed from mino to doxy and the discoloration has not returned (just under one year), however, he has been flaring badly for the past couple of months so may be time to change meds again.

[Patti D]

Elaine based on the fact that your husband was on mino for 20 years sounds like I should just stay on the mino if I am doing well. Did he see the dermatologist while on the mino or after he was off and did he stay on the mino after the lazer removal?
Thanks for your input.
patti

[elaine e]

Thanks Patti. Dr. W took him off mino, said it was long overdue. Hubby wasn’t doing well. Maybe it built up in his system?? Bloodwork seemed OK. He was switched to doxy which has now been increased to 400mg per week and was doing much better until lately. He also started taking Synthroid which seems to make him feel better too so we are not sure what caused his improvement. He was off mino and on doxy for a while before getting his face zapped and the pigmentation has not returned. In the past he had been lasered while still taking mino and it returned over time but very slowly.

His cardiologist sent him to a rhumatologist because he feels my husband needs to get this under control for more reasons than just his discomfort. He wasn’t impressed with the continuing inflammation and the lack of effectivness that doxy was having. Our Cardiologist recommended a rhumatologist that seems to think that doxy would not do much. I guess hindsight makes that conclusion easy. We had no intention of changing rhumatologists. Just went to appease our cardiologist who we have a special relationship with and we respect his opinion.

We were getting ready to make an appt. with Dr W when we got a letter in the mail this weekend that he is retiring. He recommended two other doctors. I am trying to get more information because we don’t know if he is retiring all together or just leaving that group.

[Patti D]

Thanks Elain for this information.
I am sending well wishes to your hubby for a complete remission again. 20 plus years???? 😀 😀 😀 That is fantastic. When I initially got sick it was lyme related. I was on doxy for the typical 1 month and was very sick to my stomach the whole time while on it. It is mentioned frequently that the abx needs to be changed up periodically but the problem as you know is not many doctors know the Brown protocol and if you try a regular doctor and they see your doing well on the mino they wouldn’t know what to do when you have a hiccup because this treatment is not the typical. I am in that position right now. My new family doctor agrees stay on the mino it seems to be working but does have a consult written for an infectious disease doctor who I am not sure I want to go to. It is our number one teaching hospital in Milwaukee area so no doubt they will find something wrong with the abx. I had such terrible experiences with 2 different rheumies that the idea of going there “gives me joint pain”

I am wondering how I could get that laser treatment through insurance. I am sure it would be cosmetic which means it is not covered. If I complain they will discontinue the mino. Some things require a tight lip.

I sure hope you get to the bottom of this for your hubby. It is so wonderful that you are the link on this website. How lucky he is to have you for support 😀

Patti

[elaine e]

The laser is definitely not covered by any insurance. Doctors won’t even waste their time doing the paperwork. It is cosmetic since medically it doesn’t harm you (even if your entire face is blue and everyone looks at you like you are a freak). My husband’s rheumatologist, Dr. W, is in NJ and is well know on this board. I am hoping to learn that he will keep his practice open in NY.

[Patti D]

Elaine,
Why don’t you post that question. There are a lot of people who go to Dr. W so maybe someone has some insight to him or his replacement.

Best of luck and well wishes for you & your husband. Thank you again for chiming in here. I appreciate it.

Patti

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