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Hi
I was wondering if anyone who is on AP therapy has lung involvement? I was wondering if minocycline is all that is necessary or if you are also on medication to help with the lungs? I am new to this whole process and am still in the beginning stages. I’m just waiting for a CT of my lungs due to a slight problem after doing my lung breathing test. Any information would be great thanksHi Tracy;
I had fibrosis in 1 lung and after 4 years it was gone.You could also use green cannabis juice if you can grow a couple plants.To learn more just Google benefits of green cannabis juice.I use it for extra energy and after my last scan for ovarian cysts that were the size of tangerines my doctor and I were shocked to see that they were only the size of a pea. I literally resurected my nearly dead cat.It takes 4 to 8 weeks to see the benefit.Check if it is not so called “walking pneumonia” caused my Mycoplasma pneumonia.They say that even 50% of population might have it and still going to work every day. It doesn’t mean they feel well and don’t cough. After using the immunosuppresive medications for many years our lungs must be weakened.
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 heterozygousThanks!! I just got my first prescription of minocycline yesterday so we will see how it goes. Have to wait 4 months for a ct of the lungs. They aren’t very concerned about it.Stress test next week. Should be interesting
Tracy, are you seeing an experienced AP doc? Some folks here have added a secondary antibiotic, like clarithromycin, to their protocol, and have shared it helps the lungs significantly. This class of antibiotic may be more targeted to lung issues.
There are great supps for lungs – anything anti-oxidative and ones that promote glutathione – such as N-AC, systemic enzymes (serrapeptase, nattokinase, lumbrokinase) liposomal glutathione, glutathione IV pushes, or glutathione inhaler. These supps do different things, like act as mucolytics, but also help with scar tissue.
Getting GERD under control is vital, so raising bed-head, eat small, frequent meals, apple cider vinegar, checking for H. Pylori, etc
Hi Maz
It’s just my general physician who’s prescribing it . I live in Langley BC and there are no rhumetologist that do AP therapy here. The only 2 I found are naturopaths and at the cost of thousands of dollars I cant afford it. I did contact the doctor that this group said does AP therapy and the doctor said no. So I’m at a loss right now.
Hi Tracy,
Would you kindly PM the name of the doc who told you no? Thx!
A lot of those aforementioned lung supportive measures anyone can do independently as they are mostly supplements. Also, a GP can test for H. Pylori and may even be open to prescribing a glutathione inhaler.
Unfortunately, it’s pretty much the same situation here, Tracy. Canadians have nationalized healthcare and Americans have private health care, but the physicians who provide these kinds of therapies are mostly private-pay. The good thing about Minocycline though is that it’s a relatively benign and low cost medication, so is affordable for the most part, if one can find a supportive doc. One can learn about and implement things like diet and supps independently to support lungs and relieve GERD that oftentimes exacerbates lung issues.
Wishing you the best!
Hi Maz
Thanks for the message. It was Dr. S. I let the admin know but they told me that I may be mistaken. That unless I saw 5he doctor directly and he said that then maybe I’m not correct.
Anyways I’ll check with my doctor on the test. I’ve had most tests done. I have a stress test Tuesday. My lung capacity test was good other than a small issue about the lungs getting rid of the carbon I think he said. My rhumetologist wants another CT. But my GP said my last CT was good. That this type of problem you see when someone has asthma…..which I don’t have. Anyway I’ll wait 4 months for that test. He prescribed the mino. I read its 100mg 3 times a week for 5he disease in its beginning stage. I guess I’ll start with that. I know some do 2 pills/day. I guess I’ll play with it. Do you know what test one does to see how things are going and how often? Is that the scl70 and the ana ….or? If you don’t mind me asking.
Thanks
Tracy😊RBFV Edit to remove Doc’s surname per forum guidelines to protect physician privacy. Thank you for understanding.
Hi Tracy,
Yes, doctors, in general, won’t discuss treatments over the phone unless it’s with a patient that is established in their clinic. Receptionists often have no clue about the treatments a doc does in a clinic and mainly just relay messages to/from patients and docs and make appts. Dr. S. was added to the list on the recommendation of another patient who said they may do IV and oral AP, so he was added in case he’d help. Unless we get further feedback, we can’t know for sure. The doc feedback notes will indicate if they are experienced AP docs or not. If not, then it’s hit or miss if the doc will supply the treatment and one would need to make an appt to discuss this directly with the doc to be certain.
For SD, the treatment is generally not pulsed, but done daily, as described in the Harvard Protocol. Click here:
Minocycline in Early Diffuse Scleroderma
Also, for further info, the following paragraph is found in the Pulsed Protocol packet in the Resources section of the website. When that packet was developed in the 1990’s, they omitted the fact that trial participants actually started on 100mg daily as described in the link above! If there is any indication of inflammation, Dr. Brown started low and slow to prevent major herxing.
Minocycline Dosage for Scleroderma Patients
Scleroderma patients who participated in the clinical trials with minocycline were started on a twice daily, 100 mg dose. That dose can be adjusted if necessary, and the patient may eventually reach the clinical trial dosage. Scleroderma patients who do not have an overlap of inflammatory rheumatic disease generally do not report a Jarisch-Herxheimer reaction of clinical significance. Other supporting therapies may be continued if not contraindicated.
I hope the info helps as you begin AP, Tracy! It can be confusing to navigate AP without an experienced doc so hats off to you! Hang in there – the first year of AP therapy for SD is about slowing the freight train down, after which incremental improvements are usually noted.
Yes, the usual labs while on AP are intermittent testing of any abnormal disease markers (including CRP and SED rate it positive), as well as complete blood counts (CBC) along with a complete metabolic panel (CMP) that includes liver enzymes.
Most SDers find the Harvard Protocol tolerable by starting on 100mg once a day for the first month and then adding the second 100mg daily dose thereafter. Mino can sometimes cause vestibular symptoms (dizziness and nausea) in the early days but this usually passes as the body adjusts. You should know how you’re doing within a week or two and how you’re tolerating things.
Please check back and fill us in on your progress, Tracy! You’ll find lots of support and experienced APers here who can share their experiences to provide peer support along the way
Thanks. I’ll let you know. I’m just in the beginning stages. One rhumetologist says I have it and the other one says I have it in my system but I have to have a lot of things going on before he says I’m full blown. So basically he is ignoring my symptoms unless they are part of his list of classification diseases. That when the really bad symptoms happen then he will treat accordingly. You have to have a large number out of 9 he says. In my mind I want to get it under control before any bad things happen. So my GP says let’s go for it . That the drugs aren’t dangerous so he has no issues with it. He also has a patient with bad rheumatoid disease who he put on the same drug and it’s working well. Fingers crossed!!!
ThanksTracy, one test that can help confirm SD is a nail-fold capillary skin test. I would think a rheumy or dermatologist could do this for you. If you also research lab tests for scleroderma online you will find a slew of sites – Cleveland clinic came up for me on quick search. The ANA (IFA) test is a General first step test to determine rheumatic disease type but further tests need to be run to narrow down sub-types. In folk who are seronegative, the nail fold skin test can help confirm things. Some folks have positive labs for years before disease symptoms erupt, and in others they have a clear-cut case but are seronegative or it may take time for seropositivity.
It can be a tricky diagnosis and the meds normally prescribed are heavy duty so docs don’t want to rush to conclusions until there is some degree of certainty. Dr. Brown felt differently and because minocycline is pretty benign (as your doc said), comparatively speaking, he felt it was worth starting treatment early before too much damage occurs. Once damage occurs, it is hard to reverse and joint damage (as in RA, for example) isn’t reversible. You’re fortunate to have your GP!
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