Home Forums General Discussion To gather enough courage to start AP

  • This topic has 30 replies, 13 voices, and was last updated 8 years ago by PhilC.
Viewing 15 posts - 16 through 30 (of 31 total)
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  • #323702
    may8
    Participant

    On week 2 of AP tx, switched to 50 mg Mino 1 x daily. No side affects and no changes so far. Is it too early to increase to 100 mg daily and would appreciate comments on 50 mg x2/ day or 100mg X1 daily which is more effective. Read a lot abt fungi / candida, what are the symptoms. Have not done any Lyme test yet, but tested positive on h pylorie, treated with antibiotic and to be retested in June. I will ask GP abt test for Lyme disease. How do I know if probiotic is working and healing the gut ? Lots of questions and thank you for the support .

    Minocycline HCL 200 mg daily
    Imuran 100 mg daily
    Adalat XL 20 mg daily
    Prevacid 30 mg
    Pilocarpine 5 mg
    Probiotic, multi vit, vit c, omega 3, d3, b12

    #323703
    lynnie_sydney
    Participant

    may8
    The ‘starting low and slow’ suggestion is generally for people with an inflammatory component to their disease – which many SDers do not have. Herxing can make the regime intolerable and also be counter-productive as greatly increased inflammation prevents the ab reaching its target. But many SDers do not herx and so this doesn’t apply. Many SDers around here would suggest that 100mg BID is a good starting dose for SD patients. The idea (with SD) is to treat as much and as early as possible so that it doesn’t become a runaway freight train. The BID (twice daily) is so that the medication stays in the body as long as possible. Am sure Richie, Lynne and others will give you their wisdom on this.

    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)

    #323704
    may8
    Participant

    Thank you Lynnie. I started the 50 mg x 2 / daily today. Hoping for good results. I find myself drawn to this board for all my questions and really appreciate it.

    Minocycline HCL 200 mg daily
    Imuran 100 mg daily
    Adalat XL 20 mg daily
    Prevacid 30 mg
    Pilocarpine 5 mg
    Probiotic, multi vit, vit c, omega 3, d3, b12

    #323705
    richie
    Participant

    Hi Good to see you are taking adalat xr for the Raynauds -I had great success with it —I am from the school of thought that the faster you can get to 200 mg daily the better —-Herxing usually doesnt occur in folks with scleroderma as it is a collagen vascular disease not an inflammatory illness –however the first few weeks starting minocycline can produce unpleasant things -Such as dizziness nausea etc –Since you have a business trip coming up it may be wise to keep on a low dose until the trip is over –For scleroderma there are two approaches —a relatively lower dose and intravenous of clindymycin to start -this was doctor Browns original protocol or the later Harvard protocol which is 200 mg daily every day —this this is the approach that got me all better naturally I have a bias toward this approach —-Good luck –Many success stories with either approach
    richie

    #323706
    lynnie_sydney
    Participant

    Thanks Richie – good to see you added your wisdom 😀 😀 😀

    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)

    #323707
    may8
    Participant

    Thank you all for thoughts and encouragement. A minor setback, came down with severe bout of cold and cough,had chest X-ray waiting for results. On azithromycin for the next 5 days , plan to continue in Mino if no adverse reaction to azithromycin. Keep healthy.

    Minocycline HCL 200 mg daily
    Imuran 100 mg daily
    Adalat XL 20 mg daily
    Prevacid 30 mg
    Pilocarpine 5 mg
    Probiotic, multi vit, vit c, omega 3, d3, b12

    #323708
    may8
    Participant

    Had a set back with cold and cough, waiting for X-ray results on chest. Yesterday came down with Swollen R eye, not sure if I was bitten by mosquito or just wacky immune system, trying to get an spot to see Dr. Already on Mino 100 mg and arithromyxin for the throat, now eye infection? What is going on?

    Minocycline HCL 200 mg daily
    Imuran 100 mg daily
    Adalat XL 20 mg daily
    Prevacid 30 mg
    Pilocarpine 5 mg
    Probiotic, multi vit, vit c, omega 3, d3, b12

    #323709
    may8
    Participant

    4 months since AP treatment and my 1st follow up with scleroderma specialist. On 100 mg x 2-day minocyline, not much to report, joint pain in elbows, knee and severe R shoulder pain since o
    Oct 14 with no relief after physiotherapy and acupuncture. New joint pain in fingers or is it contracture , not sure ? More GERD than before. Just seem to have myriad of symptoms, very discouraging but vow to continue with AP. Will ask Dr. To do liver test, please advise what other tests should I ask for to determine if the AP is working for me or is it too early ? Thank you and appreciate any feedback .

    Minocycline HCL 200 mg daily
    Imuran 100 mg daily
    Adalat XL 20 mg daily
    Prevacid 30 mg
    Pilocarpine 5 mg
    Probiotic, multi vit, vit c, omega 3, d3, b12

    #323710
    Schulz
    Participant

    Maybe an ANA level test to see if it is raised or lowered since you started AP. Also, consider taking Milk Thistle to protect the liver and N-AC for Liver and Lung function, this also helps increase Glutathione which has a number of benefits for SDers on AP. You could also look into LDN (http://www.lowdosenaltrexone.org) however i have no experience with that.

    Also, look into Neprinol. Here is an amazing article an alternative treatments for Sders that really helped me – http://www.theskepticalnutritionist.com/ebooks/Scleroderma0815.pdf

    #323711
    Lynne G.SD
    Participant

    Hi Schultz;
    I meant to send you this same info.For a relative newbie you are heading straight to the head of the class.Glad you found this site

    #323712
    jasregadoo
    Moderator

    Regarding Milk Thistle, I found the following on WebMD:

    Medications changed by the liver (Cytochrome P450 2C9 (CYP2C9) substrates) interacts with MILK THISTLE
    Some medications are changed and broken down by the liver.
    Milk thistle might decrease how quickly the liver breaks down some medications. Taking milk thistle along with some medications that are broken down by the liver can increase the effects and side effects of some medications. Before taking milk thistle talk to your healthcare provider if you take any medications that are changed by the liver.
    Some medications that are changed by the liver include amitriptyline (Elavil), diazepam (Valium), zileuton (Zyflo), celecoxib (Celebrex), diclofenac (Voltaren), fluvastatin (Lescol), glipizide (Glucotrol), ibuprofen (Advil, Motrin), irbesartan (Avapro), losartan (Cozaar), phenytoin (Dilantin), piroxicam (Feldene), tamoxifen (Nolvadex), tolbutamide (Tolinase), torsemide (Demadex), warfarin (Coumadin), and others.

    Medications changed by the liver (Glucuronidated Drugs) interacts with MILK THISTLE
    The body breaks down some medications to get rid of them. The liver helps break down these medications. Taking milk thistle might affect how well the liver breaks down drugs. This could increase or decrease how well some of these medications work.
    Some of these medications changed by the liver include acetaminophen, atorvastatin (Lipitor), diazepam (Valium), digoxin, entacapone (Comtan), estrogen, irinotecan (Camptosar), lamotrigine (Lamictal), lorazepam (Ativan), lovastatin (Mevacor), meprobamate, morphine, oxazepam (Serax), and others.

    My thought would be that if you are going to take Milk Thistle, you might benefit by taking it away from other drugs and supplements.

    #323713
    may8
    Participant

    Thank you jasregadoo for the ‘milk thistle’ info, will ask the doctor and check with the pharmacist. Thank you Schulz and Lynne G, will look up the alternative tx. site.
    Went though my lab records, my ANA was 1/640 in 2013, current 1/320 what does it mean ? I am really a novice in lab reports. What else should I look for when reading these reports. Just recently started asking doctors for copies of all reports, but not sure how to interpret these. The doctors assure me all is good ???
    Thank you all for your input.

    Minocycline HCL 200 mg daily
    Imuran 100 mg daily
    Adalat XL 20 mg daily
    Prevacid 30 mg
    Pilocarpine 5 mg
    Probiotic, multi vit, vit c, omega 3, d3, b12

    #323714
    lynnie_sydney
    Participant

    May
    Am sure others will chime in with responses.

    You may also like to know there is a very good online resource for explaining what lab tests are and answers questions about them. It’s https://labtestsonline.org

    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)

    #323715
    Schulz
    Participant

    Hi May, As far as i know, your ANA is a measurement of how overactive your immune system is. My dads was 1:1280 at last check before starting any medication. As it starts to drop it means your immune system is settling down. This is ofcourse my very basic understanding of ANA. if it is indeed dropping, then it looks like you’re doing something right.

    #455358
    may8
    Participant

    Update on AP, will be seeing my sclero specialist on the 28th. Experiencing blue spot all over legs, nails turning blue, want to ask dr. To switch to doxy/Zithromax, any advice on which and strength. Symptoms have subsided but still like a Yo yo, good days and bad. What should I ask dr. to test for in reference to blood work to gauge the effectiveness of AP. Both Rheumy and sclero not supporting AP but sclero willing to RX it, up to me to manage AP.

    Thank you

    Minocycline HCL 200 mg daily
    Imuran 100 mg daily
    Adalat XL 20 mg daily
    Prevacid 30 mg
    Pilocarpine 5 mg
    Probiotic, multi vit, vit c, omega 3, d3, b12

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