Home Forums Personal History and Progress Threads Another Scleroderma and Raynauds Story Starting AP Today

This topic contains 34 replies, has 1 voice, and was last updated by  enzed 2 years, 6 months ago.

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  • #307024
    enzed
    Participant

    Today I began taking Minocycline 50mg twice daily to treat stubborn Raynauds finger ulcer / Scleroderma / Crest. It’s a long story so will try keep it brief. I am a retired social worker and moved to Cairns 3 years ago to escape the harsh Kiwi weather and save my fingers from imminent amputation. The hot weather helped although I have had ulcers twice, treated with Nitrolingual [sprayed on] and Rectogesic [rubbed on]. Antibiotics previously cleared up ulcers but a current ulcer is proving stubborn. But so happy to still have fingers!

    I see a rheumy 6 monthly and after reading about AP on this forum and getting valuable advice from Lyn, I asked the rheumy to prescribe AP but he wasn’t keen. He preferred I try Hydroxychloroquine Sulfate but when looked up the side effects – eye/vision damage and muscle damage, I decided not to take it. Instead I asked my GP to let me try AP and today he agreed I can try it for 6 months.

    I followed the advice here to go armed with information on AP so printed out info to show my GP. He wasn’t interested in reading anything from this or other forums but was convinced by the printout of Alan Cantwell’s paper published in the Journal of Independent Medical Research. ‘Bacterial Infection as the Cause of Scleroderma: A Guide to Antibiotic Therapy’. He read it right through and said ‘I’m convinced’ and prescribed Minocycline right away.

    My Herstory:
    Long history of infections spanning 50 years. Raised on a dairy farm so could have been bitten by cattle ticks. Had a serious undiagnosed illness at age 14 with swollen liver – vomited yellow bile for weeks. Then 25 years later I became very ill with swollen tissues and muscle pain that left me unable to walk for several months. Doctors were baffled and had no diagnoses. Prescribed anti-inflamatory Brufen I still take daily. My stomach was covered with hundreds of red ‘dots’ I now know are caused by scleroderma. I diagnosed myself as having an infection and obtained broad spectrum antibiotics [free samples] from a drug rep salesman who took pity on me. I took them daily for 1 year and slowly regained the use of my legs and a year after that, was well enough to return to work although I continued to be in pain from tissue pain and muscle spasms up to the present time. Consulted with many alternative health practicioners over the years, tried everything, including acupuncture and chiropractic. I still use chiropractic. I estimate I spent one third of my income over 20 years on trying to overcome the ‘thing’ with no diagnoses. I had my mercury fillings removed, swallowed all kinds of this and that – you name it, I took it! and still take Flaxseed Oil that I did find beneficial.

    3 years ago I was finally diagnosed as having Crest / Scleroderma / Raynauds / Vit A deficiency by a visiting American doctor Troy Barton who had wandered into our tiny rural NZ community by mistake and while there, correctly diagnosed 15 ‘old chronics’ the local medical fraternity had given up on. He did expensive tests on us all, spent more public money than was allowed on our lab tests and even though he correctly diagnosed us all, and patients started to recover with the treatments he prescribed, got sacked for refusing to treat more patients without first doing the tests that needed to be done. What a guy! Some other lucky patients somewhere in the world have him now.

    I will post progress of AP treatment.
    First dose taken today so feeling cheerful and hopeful.

    Rectogesic cream, Nitrolingual spray and Isoorbide Mononotrate 60mg x daily for Raynauds.
    Vit A, Zinc, Flaxseed Oil
    Quinapril for BP
    Panadol Osteo for pain
    Brufen anti-inflamatory
    Systane Lubricant eye drops for dry eyes
    Can’t travel by air, get infected sinuses that spread to jaw and cause root canals etc. Long history of dental infections.

    #365148
    enzed
    Participant

    DAY 3 ON AP 5/10/2012
    It’s only the 3rd day since I began Minocycline and already seeing improvement in the finger ulcer which has stopped weeping and the pain in that finger has reduced by about 50%. I’ve started sweating a lot – it comes and goes – and feeling more tired than usual, so expect that means it’s engaging the bacteria? Needed to sleep 3 hours this afternoon even though I slept well last night. My ankles swelled up today and I halved the dose of Isosorbide, putting it back to 60mg a day. The rheumy doubled it weeks ago when the Raynauds ulcer wouldn’t heal but it didn’t help anyway and I think it was too high. Some unusual aches and pains tonight so feeling a bit grotty. I’m obviously having a reaction to the Minocycline. Early days!

    DAY 4 ON AP 6/10/2012
    Very swollen ankles. Took 40 mg of FUROSEMIDE for fluid retention.
    Raynauds finger ulcer healing rapidly, almost no pain in the finger now.
    Finger tips going very pink, otherwise looking ‘blotchy’ ie white and pink.
    Very sweaty but no temperature. Having showers every couple of hours to wash off the sweat.
    Or, as my mother used to say, ‘Ladies perspire, horses sweat’!

    DAY 6 ON AP 8/10/12
    Fluid retention in ankles gone after2 days on 40 mg of FUROSEMIDe for fluid retention.
    Fingers on one hand much pinker than before I started AP ie better circulation.
    Fingers on hand with ulcer still look blotchy / mostly white and swollen as before.
    Ulcer much better / smaller and dried out but not healed completely.
    Still sweating but less than before. Still feeling tired and not much energy.
    Feet not hurting as much as before starting AP.
    From the reaction I am getting I would say 50mg minocycline twice a day is a strong enough dose for me.

    ONE WEEK ON AP 10/10/12
    The sweating has finally stopped and I’m getting my energy back.
    Left the house yesterday for the first time in a week.
    The left side of my body is feeling ‘looser’ ie not as stiff as before although the right side is still stiff and aches especially around the shoulder area that has had a nasty muscle spasm in it for about 30 years. I am hopeful the AP will repair that in due course.
    Am finding it easier to turn my head to look over my left shoulder – had stiff neck and shoulders for many years.
    Fingers on right hand still swollen and blotchy but the dried out skin around the ulcer is breaking off in bits that indicates its healing from inside. It’s right under the nail now although it started halfway down my finger and moved up – it didn’t get bigger, it just moved.
    Two years ago the first joint of a finger on my other

    hand went black and had a blood clot. I was hospitalised and had treatment to disolve the clot. My fingers were sprayed with nitrolingual and the blood returned to them and the finger was saved from amputation. The nitro can cause the ‘nitro headache’ but its a small price to pay to save fingers. I still spray it on my fingers if they go white.
    So, after the first week of AP I would say, improvement in my left side including the fingers of that hand, ie better circulation than before AP. The right side of my body does not seem to have changed yet.

    I will continue treatment of 50mg minocycline twice daily and report any changes that occur.

    #365149
    enzed
    Participant

    19/10/12
    From day 10 on AP up to yesterday – a total of just over 2 weeks, I felt tired but OK. However, in the middle of last night I woke with a headache and sharp jabbing pains going on around my body. Hard to tell if the jabbing is in joints, muscles or tissues. Today I was exhausted and spent most of the day asleep, just wiped out. I guess it could be described as ‘flu like’ symptoms. Tight chest, some difficulty breathing, used an asthma inhaler sever times today.

    How do I know if this is related to the minocycline; a herx reaction or an allergic reaction to it? I am thinking of halving the dose from 100 mg daily to 50 mg. Any ideas? I’ll post this in general discussion as well so others can respond, give advice or information.

    #365150
    enzed
    Participant

    20 October 12.
    I had one day when I felt better and then more violent reaction from the AP; 2 nights of severe coughing have left my ribs bruised. Using asthma inhaler a lot to stop the coughing. Feeling chilled and sweating again. Very tired. Yesterday I halved the minocycline to 50mg but today restored the daily 100mg dose. I keep thinking, the worst must surely be over soon? Or else I think – is the cure worse than the disease??? Had a headache pretty much the whole time.

    I do know I have had other antibiotics for a range of infections and NONE of them has ever affected me violently like this. That tells me this really is the correct treatment and is certainly stirring things up.

    I’m taking pro-biotics and hydration drinks and drinking lots of water. I stopped the green tea for 2 days as I felt the detox reaction was too violent, but will start that again now the coughing is reducing.

    The Raynauds finger ulcer was making great healing progress but the healing stopped abruptly a few days ago, so I’m disappointed about that. But maybe the minocycline is busy elsewhere and will get back to the finger! Feeling wiped out, sweaty and smelly, but glad I don’t have to go to work right now, as I wouldn’t be able to.

    25 October 12
    I didn’t take any minocycline yesterday as again I woke up in the night with severe coughing, asthma and sore lungs/ribs. By this morning the ribs are better and the asthma is receding rapidly. I feel a lot better today. The Raynauds finger has suddenly started healing again, and quickly which is great. I’m not taking any minocycline today but will start again tomorrow on a halved dose of 50mg. I haven’t needed eye drops for dry eyes for several days, so its a mixed bag of results.

    #365151
    enzed
    Participant

    I am now recording my progress over to the general forum, under the thread, ‘SD minocycline reaction information please’ so others can give information and advice as needed without needing to double up on posts.

    #365152
    enzed
    Participant

    1 November 2012

    I restarted AP today, dose is 50mg minocycline daily so half of the original dose. I have had a week off AP to detox so feeling much better and ready to start again. The coughing and wheezing has stopped after a week off AP so I think its OK to start again. If it goes well I will put the dose back up to 100mg a day.

    #365153
    enzed
    Participant

    10 November 2012

    As planned I restarted AP on 50mg minocycline daily for 1 week with no negative effects. The finger ulcer started healing again from the second day and is now almost completely healed, a great result. [Previous courses of different antibiotics failed to heal it]. Two days ago, I increased the minocycline to 100mg daily. The only change since increasing the dose has been fluid in my ankles which also happened when I first began the AP. So far I haven’t taken anything for fluid retention but I will if I have to. It’s quite clear now that the only antibiotic that has worked to heal my finger ulcer is minocycline. The other positive change is more flexibility in my right knee since increasing the dose 2 days ago. My plan is to stay on 100mg daily unless I get strong negative reactions that make me believe I should reduce the dose again.

    #365154
    enzed
    Participant

    18/11/2012

    Six days ago I increased the minocycline back to 100 mg a day. Herx reaction has been mild, with some mild ankle swelling and a strong feeling of fatigue that requires an afternoon sleep most days.

    Positive changes – The Raynauds finger ulcer is almost completely healed, just a small stubborn lesion remains. My eyes have improved dramatically, and I haven’t needed any eye drops for the past week. Eye moisture is restored naturally and no longer burns my eyes or eyelids as it did daily for several years. That means my tear ducts are no longer toxic, a great and welcome result. That indicates to me that this AP treatment is the correct treatment for scleroderma.

    I see the rheumy this week and will see what he makes of it. I will have blood tests before I see him so will report the results of those as well as his reaction to the news that I am now using AP.

    #365155
    enzed
    Participant

    30/11/12
    I have continued to take minocycline 100mg daily. Some fatigue.

    Positive Result: My feet, that hurt for years, leaving me unable to walk barefooted even for a few yards, are improving rapidly. My toes were very bent / buckled, but are now completely straight, and the tight tendons under my feet have loosened considerably. I am now able to walk without shoes around the house for several minutes at a time without pain. This is fantastic – I might soon be able to wear normal shoes again instead of velcro sandals with memory sole inners to cushion my painful feet. I attribute this improvement to the minocycline.

    Sinus Problem: I went to the dentist today with what I thought was a cavity toothache problem only to discover the pain in my jaw is caused by blocked or infected sinus’s instead. I have had this problem in the past so have started medication to dry up the sinuses. Hopefully the minocycline will deal with any sinus infection.

    Raynauds Ulcer: Still not completely healed but no longer painful and the lesion is now tiny.

    Rheumy: I saw the rheumy last week but he read my listed current medications and made no comment. Perhaps he was distracted or did not notice minocycline is now on the list. Or perhaps he didn’t want to engage in a discussion with me over it, seeing as he had previously refused to prescribe it and I got the script from my GP instead. I don’t see the rheumy until May 2013 and by then I am hopeful my health will have improved further. I was relieved I did not have to engage with him over the minocycline. Quite happy to put that discussion off for another 6 months!

    #365147
    enzed
    Participant

    14.12.12

    I stopped taking my daily 100mg dose of minocycline yesterday because of some vomiting and diarrhea over the past 2 weeks. I put up with that but yesterday I came out in an itchy rash that progressed to raised welts on the top half of my body. I’ve been taking daily probiotics so the cause must be the minocycline. I’ll reintroduce minocycline in January, after a 3 week ‘washout’ but when I restart I will halve the dose again to 50mg daily, or just take 50mg 3 times a week as others do.

    21. 12.12
    After a 9 day ‘washout’ to heal up skin eruptions, today I started back on 50mg daily using the same prescription of minocycline. I will stay on that for a month and see what happens. I washed the skin eruptions with Phisohex for 3 days and they stopped itching fast and healed up quickly although there are lots of red marks / scarring left behind. I am already feeling my joints stiffen again so am attributing that to having stopped the minocycline for 9 days. I was intending to wait 3 weeks before restarting mino but feeling so stiff again after only 9 days…..I had to reconsider.

    8/01/2013
    I actually reconsidered the dose and in case it was too high, on 21/12 I started back on minocycline at 50mg every second day instead of every day. So far I haven’t felt too bad, although if I miss a daily microbiotic dose my stomach does react and food tastes awful. So I will stay on the present regime, 50 mg every second day and see how it goes. So far no more skin eruptions and the raynauds finger ulcer finally healed up completely. A lot of the stiffness is back on this lower dose though.

    #365156
    enzed
    Participant

    14/1/13
    Still maintaining minocycline at 50mg every second day for the time being.

    Two days ago on 12/1/13 I started taking Cat’s Claw, 5mls twice a day. I bought 200mg of the pure liquid from a naturopath for starters, to see if it makes any difference. I figure 3 weeks on it should show some kind of result. Just in 2 days I have noticed an improvement in walking, especially in one foot, although that may be a result of the minocycline too of course. Or perhaps the combination?

    I decided to try the Cat’s Claw in case I have Lyme which is likely given my history. Lyn raised this with me when I first made contact with this forum, and everything I have read since then re symptoms is pretty convincing. If I understand it correctly though, tests for Lyme are often misleading, inconclusive or give false readings… so i figure not much point in going to the trouble and expense of testing. But well worth trying out Cat’s Claw and see how it goes.

    #365157
    enzed
    Participant

    CAT’S CLAW

    I took Cat’s Claw for 6 days but got dehyrated even though I drank a lot of water. My eyes and skin dried out again, so have stopped the Cat’s Claw. I guess it was worth a try though.

    I have been taking 50mg minocycline every second day for a month now. Tomorrow 21/1/13 I plan to increase that dose to 50mg daily and see how that goes for the next month.

    #365158
    enzed
    Participant

    21. 02.13

    I have been back on a daily dose of 50gm minocycline for one month, after increasing it from 50mg every second day. So far my stomach has coped well with the increased dose.

    I intend to complete my original minocycline script which was for 6 months and then discuss further AP treatment with my regular doctor who prescribed it. It’s now 4 months since I began AP.

    I have stopped all supplements as I am unsure exactly what my stomach reacted to previously, because it may not have been the minocycline. If it happens again I will know it was the minocycline and not the supplements.

    I haven’t noticed any more herxing since increasing the dose, except for the feeling of fatigue, fairly extreme sometimes.

    I have had some acid reflux lately but attribute that to fruit, which I have now stopped eating. When I stopped eating fruit, the acid reflux stopped. It makes sense that acidic fruit causes acid reflux. especially in people with SD.

    #365159
    enzed
    Participant

    6/4/13
    AP progress after 6 months on AP:

    I have remained on 50mg minocycline daily for several weeks now after reducing the dose from 100mg daily. Two weeks ago I became extremely stiff all over, it lasted for 3 days and then suddenly stopped. I think it was a herx. I have a painful and swollen knee but haven’t needed the high levels of pain killers I was taking previously. Instead of needing 6 osteo-panadol a day, lately I have only needed 2 a day, usually at night. I have come to the conclusion that mino 50mg daily is the right dose for me. I am certainly in less pain from spinal osteoarthritis and swollen tissues from SD, than I was before I started AP.

    People I haven’t seen for a while are commenting that I am looking much better than I was a few months ago.

    I have restarted on some supplements (because they didn’t cause the acid reflux I was having) and sometimes take prescription medication for acid reflux too. Also I’m not eating fruit (except for bananas and avocado) or most raw vegetables, none of which my stomach likes. No fruit juice of course, it’s too acidic. I eat bland, well cooked food, and when I stick to that, don’t get acid reflux. Feeling pretty good.

    I see the hospital rheumy again in May. He disapproved of the AP (and wouldn’t prescribe it) so I’ll be interested to see his reaction at my obvious improvement on minocycline. I recently had to see another hospital doctor (for an unrelated issue) and when he read my file (which is getting quite bulky) he said he was ‘very concerned’ that I had been taking minocycline ‘for such a long time’. I did not bother to try to explain, just nodded and changed the subject. But he had homed right in on the mino so i suspect the rheumy had left a note on the file regarding it. 🙄

    I will report back to my regular doctor who prescribed mino, so he can see the improvement, and hopefully he’ll give me another mino script for a second 6 months. I haven’t been back to him since he gave me the script in October – he told me then to use my ‘common sense’ and go back to see him whenever I need to. Up to me. Sensible man.

    I think I’m in this for the long haul – after all, I’m slowly improving and what else is there? Nothing.

    #365160
    enzed
    Participant

    15.04.2013

    The last 3 days I have had two very swollen knees that both seem to have fluid in them, and 1 swollen ankle that seems to have fluid in it. I had to buy elastic knee supports as it has been difficult to walk. I am hoping this is a herx and not a deterioration in my knees.

    I am wondering if I should stop the minocycline for a week or so while I do another ‘washout’. ????

    Not sure what to do.

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