Several questions: bursitis, Minocen dose, herx therapy

[mariemcminn]

1) I have had patellar bursitis intermittently since first being diagnosed in May 2005. In August 2010, the swelling didn’t go away for four months, except for a brief respite after taking a prednisone pack. Since then, the swelling cycles: 5-8 days no swelling, 3 days severe swelling, 2-3 days moderate swelling, then back to 5-8 days no swelling. I only managed to get the swelling to go away by eliminating all exercise except swimming or cycling in a hot tub. Has anyone had a similar issue, and if so, how did you resolve it?

2) This is my second winter in Florida, so my regular rheumy is in Colorado. When I learned about AP therapy, I tried to get my Colorado doc to prescribe the therapy long distance and he would not. I found a doctor in Florida, but he was reluctant to treat me with AP. He did write me a prescription for Minocen 100 mg BID, which seemed odd to me after reading about the importance of a pulse dose. I didn’t argue with him, though. He stated that none of his patients had any luck with the therapy and that they complained about their skin turning blue. On December 17, I started Minocen, but not as prescribed. I am taking 100 mg MWF. I read all about Herx and have had some weird aches and pains, and my right wrist/elbow/knee has gotten worse. I have a follow-up with my Florida doc (first follow-up) and I am trying to prepare, as he is not a believer in this therapy. Should I have taken the Minocen as prescribed?

3) Since Minocen is pretty expensive, has anybody been able to locate the generic Lederle brand of Minocen? Dr. Mercola states it is identical to the brand name and is much cheaper, but I have been unable to find it. (I have to pay for all of my RA meds and supplements.)

4) Has anyone had any luck with hydrogen peroxide baths to combat Herx? I am assuming I would need to buy 35% food-grade, and have found it on the web.

Any input would be greatly appreciated.
Marie McMinn

[Maz]

@mariemcminn wrote:

1) I have had patellar bursitis intermittently since first being diagnosed in May 2005. In August 2010, the swelling didn’t go away for four months, except for a brief respite after taking a prednisone pack. Since then, the swelling cycles: 5-8 days no swelling, 3 days severe swelling, 2-3 days moderate swelling, then back to 5-8 days no swelling. I only managed to get the swelling to go away by eliminating all exercise except swimming or cycling in a hot tub. Has anyone had a similar issue, and if so, how did you resolve it?

2) This is my second winter in Florida, so my regular rheumy is in Colorado. When I learned about AP therapy, I tried to get my Colorado doc to prescribe the therapy long distance and he would not. I found a doctor in Florida, but he was reluctant to treat me with AP. He did write me a prescription for Minocen 100 mg BID, which seemed odd to me after reading about the importance of a pulse dose. I didn’t argue with him, though. He stated that none of his patients had any luck with the therapy and that they complained about their skin turning blue. On December 17, I started Minocen, but not as prescribed. I am taking 100 mg MWF. I read all about Herx and have had some weird aches and pains, and my right wrist/elbow/knee has gotten worse. I have a follow-up with my Florida doc (first follow-up) and I am trying to prepare, as he is not a believer in this therapy. Should I have taken the Minocen as prescribed?

3) Since Minocen is pretty expensive, has anybody been able to locate the generic Lederle brand of Minocen? Dr. Mercola states it is identical to the brand name and is much cheaper, but I have been unable to find it. (I have to pay for all of my RA meds and supplements.)

4) Has anyone had any luck with hydrogen peroxide baths to combat Herx? I am assuming I would need to buy 35% food-grade, and have found it on the web.

Any input would be greatly appreciated.
Marie McMinn

Hi Marie,

Very nice to meet you and warm welcome to the RBF discussion forum. Sorry you had to seek us out, though. 😉

A few questions came to mind as I read your post that perhaps you wouldn’t mind answering:

Are you still taking your methotrexate?

Have you ever been tested for or suspected Lyme disease (even if standard tests have been run and were neg)?

Have you had a chance to read Henry Scammell’s book, The New Arthritis Breakthrough and the material in the Education section on the main Road Back site (just click on banner above to be redirected to the main site)?

Would you like an AP physician list for FL and CO?

Will do my best to answer your questions above:

1. Knee swelling that comes and goes like this is pretty typical of Lyme disease, which is a waxing and waning disease and LOVES the knees. I can attest to that, as my knees have been hardest hit. Lyme does not like heat, so this might be why you find it easier to exercise in heated water. Mind you, RA feels better with heat therapy, too. I use a Far Infrared sauna for detoxing and the dry heat produced by the infrared carbon panels is such a treat.

2. Rheumies, in general, don’t believe in infectious theory for RA and believe minocycline to be a weak DMARD at best. Patients who may not understand the paradoxical worsening that occurs with the therapy (which is actually good evidence that the therapy is hitting the target) will give up on AP before it’s really had a chance to kick in. This is a longterm therapy and there are no overnight miracles. Dr. Brown often shared in media articles that he was interviewed in that the therapy can take 2 to 5 years, in some instances, to reverse and go into remission. This is the converse of what modern-day rheumies espouse, which is to hit RA heavy and hard right at the outset with immune-suppressing medications. In daily dosing, the immune-modulating effects of the tetras are stronger, without doubt, and many folk who are already on immune-suppressing meds will be prescribed the Harvard Protocol (100mg BID mino), because they will be reaping less of the anti-microbial effects of the mino. This is because minocycline is a bacteriostatic abx…meaning it does not kill bugs, but needs a functioning immune system to go in for the kill and to clear away the debris. Should you have taken the mino as prescribed in the Harvard Protocol dose? Well, we’re just patients here, so can’t offer dosage advice, but I can send you the contact info of Dr. S. who is very kind about answering patient questions by email. I have heard of him putting patients on the Harvard Protocol when they are on other immune-suppressive meds. My guess for his rationale is that he wants them to reap full benefit of the mino’s immune-modulating props as the goal of most APers is to be able to wean slowly from their other meds when they are stabilised on AP. After all other meds are weaned from, then it’s possible to gradually lower the mino dose to a pulsed dose. Every patient will be different in response, however, so it helps to work with a doc who knows their AP.

It’s true, too, that in higher doses, minocycline may cause various forms of skin hyperpigmentation in some, but not all people…brown, gray patches like freckles, worsened with sun exposure and blue bruise-like patches if one knocks one’s self. The blue/gray patches may be due to the chelative props of minocycline, which binds to iron in the body. In fact, a study I came across in UK a couple years ago where they did skin biopsies on these patches (which were totally benign) were very iron-rich. One of the ways that patients might be able to avert the risk of hyperpigmentation is to limit sun-exposure and also to take buffered Vit C daily. Most people who get hyperpigmentation feel it’s just a cosmetic nuisance, but it can be disconcerting if it happens on the face or neck. Higher doses of minocycline seem to increase the risk, but it does not happen in all cases, either. I was on mino for 16 months and didn’t have any blue/gray patches and took daily Vit C. If it becomes an issue, doxycycline can be used as an alternative, but most people prefer to stick to their mino, as it has superior tissue penetration.

3. Mercola’s info on generic Lederle minocycline is actually out of date. Lederle sold rights to Wyeth when the patent expired and Wyeth no longer produces the generic version. Instead, Wyeth gave distribution rights of brand name Minocin to Triax, here in the US, a dermatological company who now sells it for an inflated cost in its funky zit packs. You can read a bit of the history about Minocin here and Dr. T’s (an author of the MIRA trials) insights about why Wyeth might have done this here:

https://www.roadback.org/index.cfm/fuseaction/aboutrbf.display/display_id/255.html

Some folk buy their brand name Minocin from an online pharmacy in Canada instead, because Wyeth also gave distribution rights to Stiefel there. It’s a different colored cap (indigo/orange) but it is the pelleted version (approx $165 for 100 caps). Stiefel also produces a powdered brand version in the same colored cap, so it’s important to state that pelleted is required if ordering in this way. Alternatively, others on the forum have given the thumbs up for Teva or Watson produced generic minocycline.

4. The hydrogen peroxide and epsoms baths are a great way to detox from the die-off while herxing on AP. As far as I’m aware, food grade hydrogen peroxide isn’t necessary, as it’s not being ingested (like brushing teeth)…just 3% hydrogen peroxide as found in bottles at the pharmacy. There is more info at the following links:

http://www.rheumatic.org/faq.htm (see FAQ 6)

http://roadback.org/index.cfm/fuseaction/education.display/display_id/124.html

These baths are very soothing and their purpose is to help to draw out and neutralize circulating toxins (antigens from dying bugs) while herxing, which increase inflammation and pain. My guess on how this works is that the epsoms has an alkaline effect that is somewhat osmotic, pulling out acidic wastes from the body, and the hydrogen peroxide helps to neutralize them. It’s all theory, but I’ve found these baths helpful, in addition to my FIR sauna, which I wouldn’t be without now – just love it!

Hope the above might help, Marie? 🙂

[DragonSlayer]

Hi, mariemcminn:

Bursitis and knee edema are symptoms of ReA or AS, but I do not know their incidence rates in RA. I noticed You have a diagnosis of RA, so perhaps that is really what You have, but I would doubt this perhaps due to Your age, also. I do know about AS and the B27 aspects. In times of active inflammation, we can have elevated rheumatoid serum numbers, but usually not high enough to be classified as AS.

RA and AS are difficult to differentiate in their early stages, and I hope You have the right diagnosis,

Regards,
John

[mariemcminn]

Hi Maz,

Thanks for the lengthy response to all of my questions. To answer your questions:

On January 9, I got nervous and went back on Methotrexate (4 doses) after being off of it since April 2010, thinking it would help. But from reading the posts, I haven’t noticed anyone being on Methotrexate. I had pretty much decided to go off of it again, because it gives me the willies. Plaquanil is not so bad, but my goal is to go off of that, too.

Also, I have read The New Arthritis Breakthrough, The Infection Connection, and lots of info on the site, although I know I haven’t read all of it. What a blessing to have all of this information at my fingertips! I couldn’t have survived without it.

I have never been tested for Lyme disease; I will follow-up with that. Can one test for it, have it, and test negative? I wonder.

None of the doctors that I got from roadback.org for Florida or Colorado panned out. But if anyone is actively working with a doctor from either state, I would appreciate that info. My 2nd appointment with my Florida doc is in two weeks, so it will be interesting what my labs show. My last labs on December 13 (before Mino and Methotrexate) showed a high RF of 84 (should be < 43), high CCP IGG antibodies of 198 (should be <20), but the other inflammatory markers that had been high in August (Sedimentation Rate and C-Reactive Protein) were normal. CBC, Thyroid, and Comprehensive Metabolic Panel were also normal. My Vitamin D was excellent at 53 ng/dl. I'm shooting for 65-80 ng/dl.

As I mentioned, the rheumy that I saw for the first time here in Florida prescribed Mino 100 mg BID, which seemed high, so yes, I would like the contact information of the doctor you mentioned. If that’s the dose I need, then I will go on it. Also, if you have the name of the pharmacy in Canada, that would help me a bit, because Mino is about $900 for 60. $165 for 100 is a much better deal, and if one of the other generics works, I’ll do that, too.

Thanks for all the info. I’m in for the long haul, and I’ll get the H202 right away.

Marie McMinn

[Joe RA]

Hi: Marie, I saw this post and just want to say minocycline works well for me and hopeful for you too. Go to http://www.buylowdrugs.com/minocin then click on Minocin on the list of drugs below, for that great price. ….Joe

[mariemcminn]

Thanks Joe! That will save me quite a bit of money, since I pay for all of my own prescriptions. I wish I had gotten on this site sooner!

Marie

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