Home Forums General Discussion Diagnosed with early RA :-( Anyone know AP doc in London?

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  • #308608
    rushnik
    Participant

    Hi all,

    I only registered here today so am a newbie! I am 39 years old and live in London. I work as an equity trader and have two young daughters so life is pretty stressful for me. I noticed the last few years that I felt more and more fatigues where I was losing my zest for life – forcing myself to attend social engagements rather than actively looking forward to filling my diary up (which is what I used to do!). Bed was becoming my favourite place to be after a hard day’s work but I just blamed stress. I started to get some aches in my fingers in the summer but didn’t think much about it but then noticed that my knees started hurting then ankles and toes. I detect no swelling at all, just some pain that I can feel. It was enough for me to take myself to the doctor and got referred to a Rheumy. He did some blood tests on me at end of October, RF only mildly elevated at 34 ESR only mildly elevated also but was anti-CCP negative so he said he didn’t think we were dealing with RA. He repeated the blood tests at end November, everything was the same APART from anti-CCP which had jumped from being negative to being strongly positive. Even without the presence of any swelling or the other measures high, my rheumy said he is 100% certain that I have it just based on the anti-CCP and prescribed me Methotrexate advising that I start immediately. I was left totally reeling from the diagnosis as I am sure all of you were as this seemed to really come from nowhere and even a month ago, he was sure we weren’t dealing with RA…

    I felt very strongly against Methotrexate as I always have about toxic drugs if there are any other options. I came across the New Arthtritis Breakthrough almost immediately and I have read it cover to cover. It presents such a good case for AP therapy that I literally cannot believe it is not recognised by conventional medicine. I don’t know what to do now, I have the prescription sitting on the side but I have not been to the chemist to pick it up yet. I guess the first thing I need to do is make dietary changes – it’s odd as I already ate quite healthily and am not overweight at all. I have eliminated dairy and gluten as I know those to be particularly inflammatory and I have researched the right supplements to take. I just need to determine my treatment plan now.

    Does anyone have any advice for me? How do I find an AP that practices around the London area? I e-mailed roadback to get a list but they only had three in the UK, two of which are far too far for me to reach and the other I can’t seem to contact. Is it possible for me to self-manage AP or is that dangerous? As I am early stage, I have read a lot about how attacking it aggressively early on can make a real difference to the long term outcome so does this mean I should take the course of Methotrexate before considering other options or go for the less aggressive option now?

    I am a little bit lost and confused at the moment and feeling like I have lost control over the rest of my life which I thought I had ahead of me… I has come as such a shock. My symptoms felt so mild – that’s one of the reasons it is so hard to get my head around this…

    Anyway, I appreciate any advice that anyone could give me!
    x

    #374215
    Maz
    Keymaster

    @rushnik wrote:

    Does anyone have any advice for me? How do I find an AP that practices around the London area? I e-mailed roadback to get a list but they only had three in the UK, two of which are far too far for me to reach and the other I can’t seem to contact. Is it possible for me to self-manage AP or is that dangerous? As I am early stage, I have read a lot about how attacking it aggressively early on can make a real difference to the long term outcome so does this mean I should take the course of Methotrexate before considering other options or go for the less aggressive option now?

    I am a little bit lost and confused at the moment and feeling like I have lost control over the rest of my life which I thought I had ahead of me… I has come as such a shock. My symptoms felt so mild – that’s one of the reasons it is so hard to get my head around this…

    Hi rushnik,

    There is one possible doc you could try in Belgravia, London, who used to work in the same clinic as the AP doc in Surrey, but would suggest calling ahead to ask. I have spoken with this lady doc via email, which is how I found out about the Burghwood Clinic (“Lemons” was able to provide excellent feedback on Dr. E. at that clinic), but she may insist on doing infection testing prior to prescribing. Minocycline is an approved for off-label use disease-modifying anti-rheumatic drug (DMARD) here in the US, so your rheumy may be willing to prescribe it for you to try instead of methotrexate, if you ask. Most are not favorable to the treatment, believing it to be an old, weak DMARD at best, but not understanding that there may be early paradoxical disease worsening (known as a “herx”), if dosing starts too high.

    The BMJ’s (British Medical Journal) Annals of Rheumatic Disease, actually published on the efficacy of using minocycline for RA, but you may need to insist on trying it:

    http://ard.bmj.com/content/63/10/1354.full

    A British researcher, M. Adwan, also presented in the US to the American College of Rheumatology on the use of tetracycline antibiotics for RA a few years ago, describing the immune-modulating effects:

    http://www.blackwellpublishing.com/acrmeeting/abstract.asp?MeetingID=761&id=80039

    Charing Cross Hosp also ran some small pilot studies on the use of IV clindamycin with the older tetracycline and it’s just a shame they didn’t use the newer, second generation tetracycline, called minocycline (in UK it’s called Aknemin). 🙁

    http://www.jrheum.com/abstracts/abstracts06/224.html

    Another possibly helpful new study, published in May 2014, was one run on RA patients to assess their dental health status. P. Gingivalis, the gum infection, is known to cause the process of citrullination in the human body…hence, causing elevated anti-CCP antibodies in RAers. Interestingly, dentists use tetracyclines all the time for people with gum disease! This correlation with anti-CCP and gum disease is not new for us here and we post studies all the time about this. There is no doubt that the gut microbiota of RAers is disturbed and more and more studies are coming about to demonstrate how these bugs interfere with the immune system, creating inflammation and overgrowths of certain oral bacteria (and other types of bugs also correlated with RA) in the gut, such as P. gingivalis, trepenoma denticola, prevotella copri. So, be sure to stay tuned! 😉

    http://www.ncbi.nlm.nih.gov/pubmed/24782175

    As you can’t yet use the PM (private message) system and must post a further 2 times on the General Discussion thread, first, I’d be happy to email you the doc in London who may be an option for you. I think Dr. E. in Surrey would be your best bet if you don’t want to mess around and get going, though, as we know he offers both IV clindamycin (if needed) and oral minocycline for RA.

    Hope the above info helps. It is possible to self-manage treatment, especially with early, mild disease, but you’d still need a doc to prescribe your minocycline. Do you have an open GP who might be willing to help if you showed them the above studies?

    #374216
    rushnik
    Participant

    Thank you so much Maz for such a lovely welcome- great information and I am going to contact that doctor in Belgravia tomorrow.

    I also never knew that periodontal disease could cause anti-CCP – I actually do have sensitive teeth and receding gums which I have had to have treatment on before so could be related?

    If I did go to a GP to ask them to prescribe me Minocin – what dose would you suggest I started on? Obviously the GP would not be able to guide me… If my symptoms have not got really bad yet, does that mean that I should be more gentle with dosage or more aggressive?

    #374217
    m.
    Participant

    Is it possible for me to self-manage AP or is that dangerous? As I am early stage, I have read a lot about how attacking it aggressively early on can make a real difference to the long term outcome so does this mean I should take the course of Methotrexate before considering other options or go for the less aggressive option now?

    Hi rushnik,

    I had sudden onset arthritis, which may have been reactive arthritis, I’m just not sure. I did not have the conventional set of testing for arthritis done in the beginning due to financial hurdles. In fact, I’ve never been to see a rheumatologist.

    I did read The New Arthritis Breakthrough and I was able to get on Doxy shortly after my initial flare. Luckily, I responded to the Doxy-only therapy quickly.

    I have, for the most part, self-managed. In the beginning, I did travel to see an experienced AP doctor. It’s comforting to know I can contact him if I hit any bumps. He still writes my prescription. My new primary care physician here locally is aware I’m on AP. I have not had to ask anything of him, yet.

    I order routine blood tests myself online. CBC, iron, ferritin, CMP…it’s just easier for me that way, saves me money too, and knock on wood, I have not had any serious complications that have required a local physician’s cooperation and assistance re: AP.

    In my experience, it’s important to do routine testing. Early on, I had been taking aspirin way too enthusiastically for the pain, and caught occult bleeding in a set of routine tests. I had seriously low iron and ferritin.

    At the foundation’s main page, http://www.roadback.org, at the top you’ll see STUDIES. Click on that and pull down PROTOCOLS —> HISTORICAL PROTOCOL. The HS is an outline of Dr. Brown’s protocol. There is a lot of good, basic, useful information in there. Although I’ve read it many times, upon a re-read, I’m often surprised by some little nugget I had forgotten about. I highly recommend taking a look at that.

    There are many avenues for treatment. Some doctors will reluctantly prescribe the antibiotics if given some peer reviewed research. Some are cooperative and willing to give it a try. Some prefer to consult with more experienced AP physicians over the phone or via email. Some people use a combo of a long distance doctor with a local doctor. Strategize and you’ll see there are always options.

    Good luck!

    #374218
    m.
    Participant

    If my symptoms have not got really bad yet, does that mean that I should be more gentle with dosage or more aggressive?

    Ask four people and you’ll probably get four different answers to this question!

    Early on I had a consult with a health care provider who put it to me this way: start low and use the lowest dose that works.

    He said With RA, start with Doxy. 50 mg MWF. Increase gradually, and as necessary. This is a subtle therapy, coaxing the infectious agents out, getting the infectious load down, allowing the immune system to take over.

    He said when Doxy doesn’t work or you need to switch, go to Minocycline. But save it for when you need it.

    His reasoning boiled down to saving the big guns for last, and for if and when you need them. He said, if you start with the stronger medications and highest doses, and it’s too much too fast and backfires? What drug or dose will you go to then?

    Now, having said that, I don’t know of anyone else here at Roadback who has gotten this advice from their doctor. But, he made a convincing argument to me.

    The experienced AP doctor I traveled to see was surprised I wasn’t on 200 mg Doxy MWF right away.

    You’ll find out quickly that although there are general guidelines to the protocol, it’s definitely not a one size fits all therapy.

    A lot depends on the severity of the disease, how long the disease has been active, what type of connective tissue disease it is, what other complications or health challenges there are, and of course, the options available to you based on location and finances, etc.

    #374219
    Maz
    Keymaster

    @rushnik wrote:

    Thank you so much Maz for such a lovely welcome- great information and I am going to contact that doctor in Belgravia tomorrow.

    I also never knew that periodontal disease could cause anti-CCP – I actually do have sensitive teeth and receding gums which I have had to have treatment on before so could be related?

    If I did go to a GP to ask them to prescribe me Minocin – what dose would you suggest I started on? Obviously the GP would not be able to guide me… If my symptoms have not got really bad yet, does that mean that I should be more gentle with dosage or more aggressive?

    Hi rushnik,

    I’m posting after two fantastic posts above by m. who is a longstanding poster here and offering great practical experience of navigating how she self-managed her treatment. Just letting you know, in case you only see this post at the bottom of your thread. 😉

    I do hope the doc in Belgravia will be of help and not too costly out-of-pocket for you, if you do choose to see her. As m. says above, it is possible to just get a script and self-manage the treatment, if absolutely necessary. It’s an antibiotic given to teens every day for acne, so not a big deal (relative to methotrexate, for instance), but careful titration of dose is needed (also see Henry Scammell chapter on Titrating the Dose in The New Arthritis Breakthrough) and would be very much a feel as you go kind of thing.

    The usual dose prescribed by docs is 100mg twice a day of minocycline or doxycycline, but it is worth asking for it in 50mg doses so that if you decide to start lower and slower in a Mon, Wed, Fri (M-W-F) fashion, as Dr. Brown would have done, to avoid the potential for substantial herxing, there is that option. As m. says above, check out the Historical Protocol on the main site, because it does explain the rationale for starting low and slow, particularly for those who aren’t yet on other drugs for their RA that suppress immune function (and would also mask some herxing). Whether you decide to do AP alone or to add methotrexate to the mix is really up to you, depending upon your pain level and need to function. There is no right/wrong way with this, but for people who are on other drugs, the goal is to eventually get off those and just be on their AP. So, in asking the doc to help, I’d personally ask for 100mg twice a day, but to have it dispensed in 50mg capsules.

    Btw, you mentioned having trouble connecting with Dr. E., so just wondering if their clinic is closed for the Christmas holidays? Some private clinics will do this, re-opening after the New Year. So, if you were able to leave a phone message, they may still get back to you or you could try again if the doc in Belgravia doesn’t pan out.

    When asking the doc for minocycline or doxycycline, be sure not to ask for “Minocin,” because this brand name isn’t available in the UK. In UK, the brand is called, “Aknemin.”

    http://www.drugs.com/uk/aknemin-50-spc-8613.html

    The evidence is mounting – yes – that oral pathogens may be a very important piece of the RA puzzle for many. It’s not so much that other healthy people don’t have these bacteria in their mouths – they do – but what we are learning is that many pathogens have outer surface proteins that can and do mimic our own cells or indeed can migrate via cavitations through the blood stream serving the teeth to other parts of the body with similar tissues – i.e. the joints. In effect, creating a similar decay of the joints! There are many different pathogens, however, that can set a person up for RA and these bugs can work synergistically and not necessarily in isolation to create a perfect storm scenario. For instance, quite a few people (myself included) had their RA triggered by Lyme disease, which is a spirochete, similar to the oral spirochete, trepenoma denticola. These kinds of bugs can create havoc in packs, so to speak, living in the slimy biofilm of the oral cavity and gut (as well as other tissues that provide a rich food source). So, while it’s helpful to be able to present research to support one’s case to the doc, it’s worth noting that our body’s cells are outnumbered 10:1 by bugs of all kinds and that for rheumatics the difference is how our bodies react to the bacterial toxins (Dr. Brown called it “bacterial allergy” or “hypersensitivity”).

    Hope that adds a bit to help you on your way, rushnik! Let us know how you get on when you can. If you stick around here, you’ll be an expert within a few months and have a good solid knowledge of what you can do to support the therapy, especially if you encounter herxing.

    #374220
    rushnik
    Participant

    Thanks very much M – can I ask how you found the initial treatment with Doxy 50mg M/W/F? Did you have any side effects? Did you ever try the Minocycline? It seems to make sense to me to start slow but read so much about hitting it fast and hard with whatever treatement early on….

    #374221
    lemons
    Participant

    Hello I was just wondering if you have the correct number for the Surrey Clinic ? It is open today as I have just rang them. They close over Christmas from tomorrow and re open on the 5th of January . I would recommend them, as apart from the fact I too go there and am now in remission, The Grace Clinic in central London is incredibly expensive and may not offer this form of treatment straight away. I started AP within months of diagnosis and responded very quickly. Hope this helps. P.S the doctor at the Surrey clinic does offer SKYPE and telephone appointments after initial consultation and then posts prescriptions if needed, which is helpful if you cant get to the clinic.

    #374222
    lynnie_sydney
    Participant

    Did you ever try the Minocycline? It seems to make sense to me to start slow but read so much about hitting it fast and hard with whatever treatement early on….

    rushnik – the ‘hitting it hard early on’ approach – with inflammatory forms of rheumatoid – is generally the conventional rheumatological approach to treatment with DMARDS (such as methotrexate) – coming from the paradigm that RA is an idiopathic chronic disease for which you can only treat symptoms and not the underlying cause. Because of that the prevailing wisdom is that you want to halt the symptoms early enough so as not to sustain joint damage. Brown’s approach comes from the paradigm of treating underlying cause and there is a very sound reason (in inflammatory forms of arthritis) for pulsed regimes of tetracyclines.

    Less Severe, Early Disease (toc)

    For patients with less severe or early disease, the IV or IM treatment may not be required as they experience the same result using oral medication exclusively. The optimum standard dosage for these patients is minocycline or doxycycline 100 mg. once daily, Monday, Wednesday and Friday or tetracycline 250 mg. twice daily Monday, Wednesday and Friday.

    Unlike standard antimicrobial therapy, this method requires the application of new principles of drug administration with low dosage properly spaced, clinically titrated and most often given over a long period of time. Because absorption takes place from all levels of the alimentary tract from the stomach onwards, but is never complete, the larger the dose the lower is the proportion of it absorbed.The mechanism responsible for the decreased absorption appears to be twofold:

    tetracycline soluability is better in the more acid solution of the stomach; less so in the alkaline solution of the intestine.
    tetracyclines also tend to combine with divalent metals, of which calcium is likely to be present in the largest amount.

    https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184

    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)

    #374223
    m.
    Participant

    @rushnik wrote:

    Thanks very much M – can I ask how you found the initial treatment with Doxy 50mg M/W/F? Did you have any side effects? Did you ever try the Minocycline? It seems to make sense to me to start slow but read so much about hitting it fast and hard with whatever treatement early on….

    50 mg Doxy on MWF did nothing to help my joint pain. I knew the protocol does not work overnight, so I was patient.

    Then, I had another flare, and that spooked me. A local alternative doctor wanted to switch me to a protocol with rotating antibiotics at higher doses. I wasn’t comfortable with the idea. I wanted to give Brown’s protocol a try. I could see this doctor wasn’t going to be much help if I did not take his suggestion about switching protocols.

    So, I traveled to see an experienced AP doctor. He said raise the dose. He wrote the prescription in 50 mg capsules so I would have the option of taking it in a divided dose (50 mg in the morning, 50 mg in the evening), and also the freedom to raise the dose to 100 mg MWF, 150 mg MWF, and eventually 200 mg MWF. He would have been fine if I went straight to 200 mg MWF. This visit was a huge psychological boost for me. When I got in the car to head home, I just knew I was going to get to remission.

    Anyways (trying to edit & keep this story short), I found that taking aspirin took away almost all the pain (and my blood too!). On 100 mg Doxy MWF, off aspirin, fixing anemia, I was slowly getting better.

    Getting better meant looking for small windows of improvement. Noticing that my feet were less stiff upon rising in the morning. Having a couple hours in the afternoon where I went happily about my business, not thinking about arthritis, without constantly thinking about what joints hurt and how much. It was definitely not a steady march of improvement. There were good days and bad days.

    Although there are blood markers which can help distinguish between a Herx reaction & worsening of the disease, symptom-wise, you just don’t know. I would have a few bad pain days and wonder if the protocol wasn’t working. Or, does the pain mean it IS working?

    This, in my opinion, is one of the worst things about the disease. That is, the anxiety & worry & depression about getting to remission, then staying in remission. It just isn’t a clear lighted path. It takes time to see improvements and improvements can be so gradual and subtle that we might miss them at first.

    I took all my lab results and put them in one big spreadsheet. Black was in range. Red was out of range. The year I had my initial flare, HGB, HCT, MCV, MCH, & RDW were all in red and out of range. But over the next couple years, everything went black and back into range.

    Brown said sometimes labs improved before symptoms, and sometimes it’s the other way around, and symptoms improve before labs. But that’s how you know it’s working. Keep track of your symptoms & labs. I had been having trouble being able to hold up much weight with my arm extended (like pouring a pitcher of water) because my elbows hurt so. That was something I kept an eye on, waiting for the day it didn’t hurt as much.

    Keep the faith! It’s definitely possible to get to remission. Everyone’s story is a little different! You’ll find your way!

    #374224
    m.
    Participant

    I just noticed you asked about side effects. No, not really. Sun sensitivity. I tan very very quickly and have to be careful about not getting burnt. Liver enzymes continue to be good.

    I try to be mindful of eating well and getting enough sleep. As I get older, it seems to matter a lot in how I feel the next day.

    I take my probiotics, orally, in addition to taking acidophilus as a vaginal suppository once a week. Never had a yeast infection.

    #374225
    Anonymous
    Participant

    M., Are you on any diet?
    Linda L.

    #374226
    Cathlo
    Participant

    HI Rushnik
    I am also London based, and started AP in Oct. I went to Dr E in Banstead… I recommend seeing him even if you then go and do it on your own. His expericence of working with AP gave me hope for my future – something rheumie’s can’t give – and worth a trip to Banstead for! As Lemons says, most appointments and prescriptions can be done on the phone.

    I have a prescription for Plaquenil that i have never picked up – and have questioned at times going against all perceived medical opinion – certainly in the UK. There appears to be far more US docs into AP. PM me if you want to chat – I’ve been on Ap for three months now… started on 100mg MWF. Just had dose upped to 100mg MTWTF

    x

    2013 Poor gut & low white blood cells. Jan 2014 RA symptoms. Diet - no gluten/dairy/nightshades/sugar. Started AP in Oct 2014. On Mino MTWTF. RA improved but still there. Many supplements.

    #374227
    m.
    Participant

    @Linda L wrote:

    M., Are you on any diet?
    Linda L.

    Hi Linda L.,

    Not any diet I can put a name on. I avoid gluten, but don’t sweat small amounts here & there. I try to eat basic real food. I am bumping up the amount and variety of homemade fermented foods. Right now I have homemade yogurt, beet kvass, ginger carrots, and purchased Kombucha.

    I am also focusing on increasing the amount of fermentable fiber on my diet via real food & supplements in hopes of rebuilding a healthier GI tract. I just sent in a stool sample to uBiome. It’s remarkable these tests exist, although the detail is admittedly not enough (yet).

    I’ve been curious about how people can cool their inflammation on something like the McDougall diet. It’s clear a diet like that is high in fermentable fiber which stimulates the production of short chain fatty acids in the colon which in turn modulate the immune system.

    Anyways, I’ve been reading and reading and wondering about this and that.

    #374228
    Anonymous
    Participant

    M.,
    Would you include apple cider in the same group of fermented food or it is something different? Thank you.
    Linda L.

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