Home Forums General Discussion Newly diagnosed scleroderma

This topic contains 10 replies, has 6 voices, and was last updated by  richie 3 months, 1 week ago.

Viewing 11 posts - 1 through 11 (of 11 total)
  • Author
    Posts
  • #461371
    Jewels
    Participant

    This past summer of 2017 started my journey. Weird rashes and hives led me to an allergist who told me I tested positive for ana and scl-70. I had no other symptoms until October 2017, the joint pain hit hard. Started ap Nov, then started herxing. Had to halt the antibiotics for a couple weeks due to thrush. Started back up end of November and since I have been on 100 minocycline x 2, oral clindy 10 days out of month, tindazole was 250 1 a day but dr just upped to 2 a day. Also doing nystatin, probiotics,vit d, turmeric and nac. I did go off the tindazole for almost a week and minocin a day or 2 about 2 weeks ago. Started back and hurt worse than ever. Stiff, arches of feet, and sides of hands terrible pain. I’m very nervous this disease is working faster than antibiotics. Any suggestions would be greatly appreciated, I’m on generic minocycline and now I have my doubts if it’s working or if I’m herxing, I’m not sure.

    #461375
    vinny
    Participant

    When I am in pain I always do a Prednisone dose pack which is administered over 6 days. The Prednisone will eliminate any herxing and get you out of pain so you can sleep and think more clearly.

    Psoriatic Arthritis: Plaquenil 200mg daily; 100mg Minocycline TABLET daily; Doxycycline 100mg daily; twice daily 400mg Pentoxifylline;100mcg Levotyroxine; Have been using some level of Minocycline since 2008

    #461381
    Pinkmoth
    Moderator

    Jewels,
    As you know we have been emailing back and forth now, but thought I would check in on your post here too to say Welcome to the Forum! Very glad you could join.

    On prednisone – it always comes down to a personal decision but at this juncture I avoid that drug even if I’m herxing. I know it’s useful for people who would otherwise be incapacitated with pain, but I think if you can get through the herxing without relying on it, you will be better for it.

    Check out the search function on the front of the forum http://www.roadback.org/forums/
    try typing in SD and seeing what people have been talking about.
    Also anytime you want to know more about a topic, like “gut” or “clindy” type it in and see what people are saying. I spent hours doing that when I first joined and still do when Im curious about certain things. It’s a fantastic resource!

    unable to receive definitive rheumatic diagnosis but likely MCTD or lupus with SD overlap. bartonella.
    mino 100mg BID
    Fish oil, NAC, bovine colostrum, digestive enzymes, Probiotic capsules

    #461413
    kater
    Participant

    Hi and Welcome
    Your treatment program is very aggressive to start out so no wonder you are herxing. You must do plenty of detox to clear the die off. What type of doctor are you seeing may I ask? The treatment with AP is slow and too soon to expect big improvements –hopefully you will see change by 6 months or so so don’t give up. It is not uncommon to feel worse before better but you don’t want to be on so high a dose that you can not function. What generic are you taking? Some work better for different people. I swear by Teva. You may actually get better results on less antibiotics to begin unless you have been diagnosed with Lyme or something similar. Have you been tested for that? Message me any time if you like. I have had sclero since 2010 and all good now. I also have lyme and myco p. Healing thoughts coming to you.
    kate

    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

    #461429
    Jewels
    Participant

    Thank you so much for your help. I appreciate all the help I can get right now. I think I’m going to try the aip diet, right now trying to educate myself in my spare time. This is going to be tough I know, with kids birthdays coming up this next month. Any tips I would appreciate it. No I have not been tested for Lyme, but do plan on having dr do the test next time. Kater thank you so much for the support and also for the emails kay. I appreciate everyone of your tips!

    #461430
    Spiffy1
    Moderator

    Jewels, I don’t know if you have considered food intolerance testing. My rashes and hives did not disappear until I changed my diet. I had been on antibiotics for three months before changing my diet. Things really turned around but not until I had employed both antibiotics with diet change.

    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
    RA Factor 71 in Jan 2015 down to 25 as of September 2017
    DR4/DQ8 HLA...biotoxin illness
    IGG food allergy to wheat, egg, and dairy...probably all grains
    Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
    MTHFR compound heterozygous
    Igenex IGM positive Lyme, minoMWF

    #461440
    Jewels
    Participant

    Can anyone please help on best mino generic? I have been hurting more since last mino refill and I talked to pharmacist who told me they had given me a different generic the third refill. He told me he could get several different ones if I let him know ahead of time. So I ask about teva but he can’t get that one. So has anyone tried activists brand? He said to give him some ideas of which I am looking for and he would see about getting it. Any help would certainly be appreciated!

    #461441
    richie
    Participant

    You must specify to have the pharmacist ALWAYS give you the same generic -it is very important to have the consistency -if he doesnt agree -change pharmacists -The generic brand that agrees with a person is the best -I went from branded minocin to Torrent for my scleroderma and didnt miss a beat -no issue here -I changed over gradually -took 100 mg of minocin brand and 100 mg of the Torrent in evening for about a month or 6 weeks then went to 200 mg of Torrent alone -Over the years I have always advised people to reorder with about 10 days to go -in this way a backlog of med is built up -I have taken minocycline or the brand for almost 20 years now -and maintain a good size backlog -comes in handy if supplies get temporaril;y tight -Incidentally -I am in total remission for a long time now but still take the med -I do believe it is a lifelong thing !!

    #461442
    richie
    Participant

    If the first two rx’s seemed to help and agreed with you -why not ask the pharmacist for them -By the way there is always an inscription on the pill or capsule by hitting those numbers and letters into Google you can find the mfg

    #461450
    Jewels
    Participant

    Thank you Ritchie for the advice. The only question I have should I go back on brand I was previously on for 2 months? I’m not sure if it was working didn’t have blood test and I did hurt alot at first which I related to herxing. I think I could get torrent brand, I just want to make sure I get the best possible dosage. I’m scared to death of this disease. Thank you again!

    #461453
    richie
    Participant

    I am doing well on Torrent -!00 mg capsules -I am not a doctor but have been at this for almost 20 years and successful -try 100 mg 1x daily for 10 days -then go to 100mg 2x daily -MOST IMPORTANT -for some reason minocycline first collects in your middle ear -this means maybe headaches and nausea for the first 10 days or so -IT WILL PASS -another tip -your probiotic -take 2-3 times MORE than it says on the label -you have to replace the good flora that the antibiotic kills off-a larger dose will make certain you dont get fungal issues -I have found that of all these diseases scleroderma reacts best to minocycline -it takes time but success will happen and you will overcome it —

Viewing 11 posts - 1 through 11 (of 11 total)

You must be logged in to reply to this topic.