Home › Forums › General Discussion › Potential Scleroderma / RA condition
- This topic has 3 replies, 2 voices, and was last updated 5 months, 1 week ago by Maz.
December 23, 2022 at 8:28 pm #467145Kentucky22Participant
I am a 33/M, who started experiencing raynauds a year ago. Starting around November I started waking up with my fingers being puffy and swollen and a little sore. It wasn’t so bad that I couldn’t make a fist, but it was noticeable to me. My PCP ran several blood test (ANA not the IFA method), and a bunch of RA related bloodwork (my father was diagnosed with RA in his 50’s, but it isn’t severe). Everything came back negative. My PCP told me that she would be surprised if this wasn’t something detrimental to my health (very good for one’s anxiety). This swelling kind of just went away two weeks ago. I also changed my diet completely two weeks ago (cutting out gluten and anything processed), but I am doubtful that fixed my swelling, as I would have expected that to take some time. I still have very minor joint pain in a couple fingers and my raynauds is extremely sensitive. I had one night a few days ago where the swelling seemed to occur slightly but went away quickly. I wake up all through the night feeling my hands out of paranoia, and the skin over my fingers worried about skin hardening/tightening (kind of silly, but I honestly cannot help it at this point).
I was referred to a rheum, and I could tell he was rather concerned with me being 33 and having raynauds + an episode of hand swelling/joint pain. He ran a bunch more bloodwork and sent me on my way. He told me was going to check for everything that was related to raynauds. I could tell he suspected scleroderma related, as that is what he discussed. I go back a little after Christmas.
I have been having an extreme level of anxiety regarding this and my body is hyper aware of every little thing at this point. I have a wife and 5-year-old daughter that needs me to be well, and I am taking this extremely seriously. My wife is legally blind and does not drive, so I want to try and plan for whatever is ahead.
I hope this isn’t perceived the wrong way, as I’m not official diagnosed – it is possible that something else could be behind my RA + swelling, but it seems unlikely outside of a rheumatoid condition. I am trying to have a solid plan if I do have scleroderma, or another related RA condition. It seems like these conditions vary so much between person, it can either take you by surprise, or crawl.
I have read lots of information about AP, and how it has helped various people. I really do not want to take immunosuppressive drugs if I can avoid it. My concern with exploring the AP path is having a reliable doctor who can help navigate the medication if needed. I saw one that was listed as a most experienced doctor that did telemedicine out of AZ (I reside in KY). Travel is complicated for me, so this would be idea if such a doctor could administer the AP protocol in such a way. I guess I am looking for thoughts and feedback on such an idea, and if anyone else has done something similar. Has anyone had issues with their rheum for on-going monitoring after deciding to go on the AP protocol? Appreciate any thoughts or advise given.December 23, 2022 at 8:53 pm #467147MazKeymaster
Very nice to meet you, but very sorry you had the need to seek us out due to your health concerns. If I can offer a wee bit of Christmas cheer, you have several very positive things that, in general, bode well for recovery when folks start of AP. First, you are young and male. Second, if you find you have an autoimmune disease of some sort, starting the protocol before too much damage sets in (that can be trickier to navigate and take longer to reverse) and, while still mild, is a very good head start. Third, scleroderma tends to be one of the rheumatic diseases that can have excellent responses to the treatment.
Also, you’re in luck – there is an experienced APRN in your state (his wife has RA) who may be a good option and offers telemed once seen in person (to become an established patient, he requires an initial in-person workup). Would you like his contact info, as well as Dr. F. In AZ?
Highly recommend reading the two Henry Scammell books as they will provide you with more info and confidence in the rationale for the protocol. I think they are also available as audio books.
Completely get how you’re feeling in every respect, and am sure we all do here. You’re in good company and please feel welcome to ask questions and post for peer support whenever you want.
Most importantly, breathe and enjoy your Christmas!December 27, 2022 at 11:59 am #467149Kentucky22Participant
Thank you so much for your kind response. I read this on Christmas Eve and was warmed by your words.
I will take a look at the literature you are recommending and see if I can get a copy. I had read several experiences on AP therapy, and there are some very light shedding stories and other instances where it did not seem to work well. One interesting thought I saw was the trigger that causes SD being the potential difference between AP Therapy being an effective treatment vs not was if the trigger was bacterial (lyme?) vs something like a toxic chemical – the prior being where AP therapy would shine.
I’m not sure what your thoughts are on this, but it really made me want to be tested for lyme and other potential bacterial triggers, but I really had no idea how to start – and I highly doubt my PCP would have a clue either. This is what I was hoping I could accomplish with an AP doctor.
I was able to get the details of the two you are referencing – but I appreciate you offering. I would find it comforting knowing the DR providing this would be local to my state.
Much appreciate you and your kind support. I hope you had a wonderful Christmas.December 27, 2022 at 4:16 pm #467150MazKeymaster
It’s not imperative to get infection testing prior to starting the therapy. Minocycline is an approved disease-modifying anti-rheumatic drug (DMARD) and is listed on the American College of Rheumatology site, as follows:
American College of Rheumatology
Minocycline Fact Sheet
The tetracycline class of antibiotics have numerous properties in addition to their anti-microbial ones, as follows:
Tetracyclines: Nonantibiotic properties and their clinical implications. J Am Acad Dermatol, 2006 Feb;54(2):258-65.
Tetracycline Antibiotics for Treating Rheumatoid Arthritis: A Systematic Review and Meta-Analysis [abstract]. The 2009 ACR/ARHP Annual Scientific Meeting Philadelphia October 16-21, 2009; Adwan, M. H. Q., Arthritis Rheum 2009;60 Suppl 10 :406 DOI: 10.1002/art.25489.
Although the above abstract is no longer available online, the following is quoted information that was contained in the original abstract describing the many properties of tetracycline antibiotics:
Tetracycline antibiotics have been used in Rheumatoid arthritis (RA) since the late 1940s. Animal and in vitro studies have shown them to modify the inflammatory process in various ways unrelated to their antimicrobial activities. These include effects on matrix metalloproteinases, Nitric oxide, phospholipase A2, inflammatory cytokines, immunomodulatory Uand anti-oxidant effect as well as effects on angiogenesis, apoptosis, MAP kinases, TGF beta and poly (ADP-ribose) polymerase-1.
In the case of SD, the standard approach is generally to withhold immune-suppressive treatment until there is confirmation of diagnosis and/or symptoms arise, and degree of progression can be assessed. Some people manage to go for years without any treatment as progress is slow. In other cases, progression can be swift and debilitating and treatment is lifelong. When you get a chance to read the Scammell books, you’ll read that Dr. Brown’s philosophy was to ideally start AP ASAP before tissue damage occurs.
You’ll find lots more supportive info on the website in the Resources and FAQ sections. If you can, try to read the Physician packets that are also loaded in the Resources section. Most folks diagnosed with SD prefer to follow the Daily Protocol in order to achieve maximum benefit from the disease modifying properties of Minocycline but that’s to be decided between patient and AP practitioner based on an individual health assessment. Those with measurable inflammation (elevated SED and/or CRP) may need to start low and slow to prevent too much microbial die-off, which can result in excessive herxheimer flaring and tissue hypersensitivity (described in the books). Also, as you’ll read in the books, Dr. Brown would often start treatment with a round of IV clindamycin (bearing in mind that many rheumatics found him after years of illness), and the purpose for using this broad spectrum medication was to clear out any microbes that might impede progress on oral Minocycline. Microbe testing is used by experienced AP providers (may help in getting costs covered with documented infection) but also to serve as a pathogen load baseline for retesting as time passes to follow progress.
Hope the above is helpful and glad you found the doc info you wanted. Let us know how you get on – rooting for you and a happy, healthy 2023 and beyond to you and yours!
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