Home Forums General Discussion To gather enough courage to start AP

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  • #301642
    may8
    Participant

    Diagnosed with diffuse scleroderma in 2009, also have Raynaud, CREST and Sj

    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

    #323688
    Valsmum
    Participant

    I don’t know a lot about AP, I tried it for a year or two could not handle the herxing or side effects of abx very well, but it looks like a lot of folks here with scleroderma have done well.

    I changed my diet to mostly fruits and vegetables my symptoms got better and my body started to heal, slowly, and some of my frozen joints started to move after not moving for two solid years, my dr asked me if I fell(and dislodged something), because my elbow had been frozen for two years and now its fine, no pain, no swelling.

    #323689
    Maz
    Keymaster

    @may8 wrote:

    Getting ready to start AP next week, but feel no matter how much I read I feel I am not prepared. Scared of not getting the right dosing and herxing , will start with daily 50 mg MWF and slowly increasing to 100 mg MWF depending on tolerance. Aware of probiotics supplement and I am also on Imuran 200mg/daily and planning to continue.
    Please give me your thoughts and any advice is appreciated. Thank you

    Hi May,

    It’s nice of you to join us. It’s a warm group of souls here and hope you feel welcome!

    Scleroderma is a little different from RA in that the dosing tends to be a bit higher. Unless someone with SD has an overlap with another inflammatory rheumatic disease, herxing generally isn’t experienced in the same way as someone with a lot of overt inflammation (e.g. if you have a lot of measurable inflammation with Sjogren’s). In this sort of scenario, herxing is relative to degree of inflammation.

    There may be some side-effects, like vestibular symptoms (sort of like the dizziness and nausea of car-sickness), but that usually passes with time, once the body adjusts. Dr. Trentham (AP doc now retired) who ran the Boston trial for SD used what is called, “The Harvard Protocol,” where he started SDers out on 100mg daily (actually 50mg twice a day) for the first month and then increased to 100mg twice daily after that. Of course, in any study, everyone has to be on the same dose in order for there to be as few study variables as possible, so the reality is that it can be a very individual thing to find a suitable dose for each person.

    For the most part, SDers want to be as aggressive in treatment as they possibly can be for various reasons, so the pulsed approach may not be suitable in those sorts of instances and they will start out right away on 100mg twice a day. On the other hand, daily dosing may not be tolerable for some SDers (if there is too much dizziness or swallowing and reflux is an issue), so they will start low and slow with the goal of working up on dose, as tolerated. Having the doc prescribe the caps in 50mg and 100mg size caps initially can be helpful in this regard. E.g. starting out on 50mg once daily, then increasing to 50mg twice daily in a few weeks if well-tolerated till the 100mg twice daily dose can be achieved…or sticking with the lower dose for longer, if needed.

    For a bit of a guideline, here is the original study from the main site and am sure other SDers will chime in on the doses that have and are working for them:

    https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/113.html

    “Patients were begun on 50 mg. bid Minocin

    #323690
    m.
    Participant

    Hi May,

    Have courage! Many people have reached remission with AP. Many people have had to tweak their protocol. You’ll have lots of support here.

    #323691
    richie
    Participant

    Hi You really shouldnt have any trepidations rather you should be excited that you have found the one approach that is really effective for diffuse scleroderma —The first two weeks of starting minocyclie might be a bit difficult {nausea} but that passes over –I have been taking 200 mg daily of minocin since 1999 –total and complete remission and I was really sick at the get go –I still take the full dose as relapses have ocurred when stopping –Quite frankly at this point its really nothing -just like taking a gumdrop !!!!!!!!!!!!!!!! A further word –it is very important to take a probiotic daily when you start the minocin –this is to prevent any fungus and replenish the good bacteria in your stomach –Also are you taking something to address the Raynauds -I still do –good luck and its fortunate you found this approach —
    Richie

    #323692
    may8
    Participant

    Thank you all for the warm welcome and support. I am more confident and ready to embark on this AP journey knowing that I can count on your support and knowledge. As I start on this journey I will try to post progress and updates, and needless to say lots of questions.
    Stay healthy and keep well.

    Marg

    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

    #323693
    enzed
    Participant

    Best of luck Marg – I’ve had my ups and downs on AP for CREST – but feel so much better than when I began. It’s not a ‘quick fix’ but it does work. It takes patience. You”ll get there too!

    #323694
    Linda L
    Participant

    enzed,
    Are you on nay diet?
    Linda L.

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, supplements,
    vitamins and minerals.
    MTHFR heterozygous

    #323695
    enzed
    Participant

    @Linda L wrote:

    enzed,
    Are you on nay diet?
    Linda L.

    What is nay diet?

    #323696
    Linda L
    Participant

    Any diet? Sorry.

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, supplements,
    vitamins and minerals.
    MTHFR heterozygous

    #323697
    enzed
    Participant

    @Linda L wrote:

    Any diet? Sorry.

    Oh, you mean, am I on any particular diet? Yes and no.
    It’s basically a ‘low carb’ way of eating with low sugar content.
    ( I wouldn’t call it a ‘diet’ because the food volume is not restricted). I’m not overweight.

    I use olive oil spread or cook with real butter.
    I avoid grains – never touch whole grain foods or cereals.
    I avoid any food labelled ‘low fat’ because of the high but hidden sugar content in ‘low fat’ food.
    I eat full fat dairy, red and white meat, fish (and other seafood) and eggs.
    Generally cook all vegetables but do eat raw (Japanese) seaweed.
    I never touch high sugar drinks or fruit (especially oranges / orange juice) but eat fruit like apples and pears, blueberries.

    That’s basically it.

    #323698
    may8
    Participant

    No sugar, processed food, no grains except rice and oats, no diary or eggs and slso try to stay away from night shades veg.
    To start AP on May 1st at 100 mg MWF, hope no herzing as I need to take a 2 days business trip next week. Thanks

    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

    #323699
    enzed
    Participant

    @may8 wrote:

    No sugar, processed food, no grains except rice and oats, no diary or eggs and slso try to stay away from night shades veg.
    To start AP on May 1st at 100 mg MWF, hope no herzing as I need to take a 2 days business trip next week. Thanks

    Marg, From reading details of what others eat I am continually struck by the fact that as individuals we all have very different dietary needs. What suits one person may be poison to another. It’s really important that we don’t confuse our dietary needs with those of other people. It sounds like you already understand what your body needs.

    #323700
    greypilgrim256
    Participant

    May8, how long have you been on the Imuran?

    #323701
    may8
    Participant

    grey pilgrim
    On imuran 200 mg since May 2013.
    Just started AP 100 mg Mino MWF, day 2 no side effects .

    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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