Question: Zythromax or IV Clindamycin for SD

[kwlile]

I went to see Dr. F in Riverside, CA two weeks ago and had a wonderful experience -what an incredible man and doctor! I flew in from Colorado, and he was so thorough – he and his team stayed with me until 9:00 that night making sure all my questions were answered! I can’t recommend him highly enough….
So, he confirmed that I have diffuse systemic scleroderma, although I currently have no internal organ involvement. And he also found mycoplasma in my blood. I am having quite a bit of tightening in the skin, and he recommends that I get 7 days of IV clindamycin once a month. Unfortunately, my husband, who is a physician, is really against my having that many IVs, due to potential scarring and narrowing of my veins. So I asked Dr. F. if there were any alternatives, and he prescribed 500 mg x2/ of Zythromax, 3 days a week, to alternate with the minocycline. He also suggested I try to find the brand name Minocin. Since then, my husband has said he won’t stand in my way of getting the IVs if I really want to get them, and I am torn about which one to do.
It would certainly be a lot easier to just take the Zythromax, especially since I have a hard time with PICC lines – I’m concerned I might end up with 3 in the course of a week.
So I’m wondering if anyone else has taken Zythromax in lieu of IV Clindamycin? If so, was it effective? Did you experience side-effects?
I have the Zythromax waiting at the pharmacy, but am not certain I want to pick it up. I need to make a decision and would love some input.
Also, anyone found Minocin either made by Triax or Patheon at a decent price recently? I know this has been discussed many times before, just wondering if there is any new information out there.
Thanks so much….

K

[Lynne G.SD]

Hi K;
I have been through clindamycin IVs and oral and can truthfully say that the oral worked just as well.When my SD was bad I was on 200mg mino a day,zith 250mg twice a weeh and clindamycin 600mg on the days I did not take zith.In a few months I was seeing a big difference but it did take over 4 years to get to remission.Each time I stopped AP the bloody disease would come back and after 10 years my doc and I finally figured out I have Lyme.Doingjust fine now but still can’t stop the antibiotics.Ido take my antibiotics with food to prevent stomach problems but no foods with iron or calcium.
There are a couple really good mino generics.I use Teva and it is much cheaper than Triax

[cavalier]

Hi Let’s see if the 2nd time is the charm- typed a note & sent it – it didn’t post.

I have Systemic diffuse SD & I have Lyme. I went to Dr S. in March this year. Had one week of IV – 5 days, 2 IV’s on the last day. I had 6 sticks some failed right away & 3 blow outs vein collasped in that 5 days and this was with nurses who have done this dily for 20 some yr’s. I had some nurses get another nurse type of thing – they (veins) are a challenge & this is not unfort. unusual for me anymore although I used to work for Baxter & gave when I was younger blood once a week no problem.
My doc’s here are concerned with C-Dif even though oral is not free of this risk either. My concern is my veins I need to keep what access i have left & hoping this will improve i have had a number of sticks over these last few yr’s & been in the hosp. a few times so the veins have a good amt. of scarring & they are smaller than they were as well some sticks are dry in getting blood now etc. Point being is i remember the sum total of these sticks better than my doc’s do as they dont remember what is not done there direct.
I had to weigh the pluses & minuses as well as I knew I would need to be stuck again here & there for other tests as we go – for now I am doing Zith. orally 3 times a week & i do Doxy for the Lyme – I was on Flagyl for a bit, which I will go back to for 5 days once a month for the cyst busting for the Lyme. This has only been a few months like this so i cant give you a long time line.
I am also doing supp’s & Peptides injections from a doc for the SD & I was doing HBOT as well, point being is i have had to weigh costs as well in covering the bases.
My skin tightening/ lesions did get worse and got wider spread shortly after my 1st IV ahead of doing a 2nd, which was scary.
However, as of now I have seen nothing getting worse outwardly and actually some improvement in some abatement in my hands about 1/4 to 1/2 way on both hands.
I think keeping a close eye on your skin is important as I am sure you know no matter which route you choose IV or oral.
I dont think if this was a totally bad option it would be given. I think we have to work with where we are at in weighing. At some point I may do the IV once a month but for now it is a good thing I have a choice.
If Dr F. gives you any reason to think otherwise please let us know.
Best – Jill SD & Lyme

[Parisa]

K

Glad your meeting with Dr. F went well! I can understand your husband’s concerns about your veins but I would also weigh the benefit of a strong attack against the scleroderma. As you improve, your veins should also improve too. Perhaps, you could try a series of the IVs and see how you do on them. If they don’t work out, you could do oral.

[Randy]

@kwlile wrote:

Unfortunately, my husband, who is a physician, is really against my having that many IVs, due to potential scarring and narrowing of my veins. …K

K,

I also see Dr. F.

I have had 280 Clindy IV’s in the last 5+ years. I do not want to discourage you about the IV’s by the number I have had. However, perhaps your husband would believe that these vein IV problems would have happened by now. They have not. Thanks to AP, my arm veins are now awesome (and have been for a while) and the nurses love them!

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]

Hi Kwilie
glad you are getting good help! I so wanted the Clindy iv”s but couldn’t find anyone in Canada to sign for them so I have been stuck with orals. Having said that, I am getting better! I am on Minocin 100 twice a day, Clindamycin 1200 4 days a week, and tinidazole 1000 2 weeks on 2 weeks off. This treatment has changed since discovering Lyme in March–have you been tested for it? Seems many people with SD are testing positive for Lyme, then being treated more aggressively. There are moments when I wonder if I actually have SD, or just Lyme that looks like SD. I guess it is a moot point anyway and the SD dx is very helpful in dealing with insurance etc. because of the controversy surrounding Lyme. Good luck with your decision and your healing!
kate
today I am going for dryneedle triggerpoint therapy (ouch) –though it has taken so long to get an appointment my skin is now pretty good! I will let you know my experience with that

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

[MINOCINMAN]

Hi K:
I have left you a PM with some impotant info.
Jeff

@kwlile wrote:

I went to see Dr. F in Riverside, CA two weeks ago and had a wonderful experience -what an incredible man and doctor! I flew in from Colorado, and he was so thorough – he and his team stayed with me until 9:00 that night making sure all my questions were answered! I can’t recommend him highly enough….
So, he confirmed that I have diffuse systemic scleroderma, although I currently have no internal organ involvement. And he also found mycoplasma in my blood. I am having quite a bit of tightening in the skin, and he recommends that I get 7 days of IV clindamycin once a month. Unfortunately, my husband, who is a physician, is really against my having that many IVs, due to potential scarring and narrowing of my veins. So I asked Dr. F. if there were any alternatives, and he prescribed 500 mg x2/ of Zythromax, 3 days a week, to alternate with the minocycline. He also suggested I try to find the brand name Minocin. Since then, my husband has said he won’t stand in my way of getting the IVs if I really want to get them, and I am torn about which one to do.
It would certainly be a lot easier to just take the Zythromax, especially since I have a hard time with PICC lines – I’m concerned I might end up with 3 in the course of a week.
So I’m wondering if anyone else has taken Zythromax in lieu of IV Clindamycin? If so, was it effective? Did you experience side-effects?
I have the Zythromax waiting at the pharmacy, but am not certain I want to pick it up. I need to make a decision and would love some input.
Also, anyone found Minocin either made by Triax or Patheon at a decent price recently? I know this has been discussed many times before, just wondering if there is any new information out there.
Thanks so much….

K

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