HI: I need some clarity on my situation

[hoften]

Hi: I have had RA for about a year. Been on Hydroxychloroquin the whole time, 200mg twice a day. I started Minocycline 100mg twice a day since October of 2023. I have not seen any improvement at all since I have been on the Minocycline. The Hydroxy helps to suppress the symptoms so I feel better in that regard. I stopped Hydroxy for about 4 days to see if I needed it and boy the symptoms came roaring back especially my heart rate started racing and I got really scared and I went back on the hydroxy. I am really at a loss and wondering what is going on in my body and why I still have symptoms when I go off the hydroxy. This is such a confusing disease and I just wish there was a switch to turn this off. Can anyone shed some light on what i could be doing to help myself and how to improve my situation. Thank you so much. Heidi

[Maz]

Hi Heidi,

I think we can all appreciate wishing for that “off-switch!” Sorry to hear you’re having a rough go. Sixth months in is a reasonable time to reassess. We are just patients here so can’t offer medical advice per-se….just some ideas based on personal experiences and what is known about Dr. Brown’s approach and the research.

Quick question: do you have any recent labs (SED, CRP, RF and anti-CCP) to compare with when you started AP? As Dr. Brown described in the book, sometimes symptoms improve before labs, but also vice-versa. It can be heartening to note labs improving when symptoms are lagging.

I also started out on the daily protocol, but quickly found it was too much and did much better on 200mg BID M-W-F. The days off allowed hypersensitivity to settle. Brown describes this in his hypersensitivity presentation in the Resources section here (see text in bold in article):

Presentation by Thomas McPherson Brown, M.D., “Guidelines For Infectious Hypersensitivity Approach To The Treatment Of Rheumatoid Arthritis”

Another idea to consider: have you been taking the same generic brand since starting? Some folk have found that switching can resolve things.

[Linda L]

Heidi,
Please explain to me. You have RA and your heart rate started to race when you stopped Hydroxy… RA affects joints.

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 heterozygous

[PhilC]

Hi Linda,

Heidi probably won’t be able to answer you, so I will tell you what I think. My guess is that she probably has secondary porphyria caused by an intracellular infection. One of the symptoms of porphyria is tachycardia, and one of the treatments for porphyria is a low dose of hydroxychloroquine.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[PhilC]

Hi Heidi,

Which minocycline generic are you taking?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[hoften]

HI: Thank you for all your responses. I didn’t know I had any responses. I will look at my labs and see if I see any changes going on. I am taking Torrent Minocycline because I heard it was better than the original one I was taking that started with an A. Also, can you explain more about why my heart racing after stopping hydroxy for 3 or 4 days. You mentioned porphyria. I have never heard of this. This is all so confusing to me. Thank you.

[Linda L]

Heidi,
In what way does chloroxyquinine help you with RA? Has your doctor told you why this medication helps with RA?

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 heterozygous

[hoften]

HI: Sorry for my delay. Hydroxychloroquin helps to suppress the immune function so you do not feel the pain as much. I have been on it for over a year and it has helped me tremendously but I would like to get off of it. I was hoping I could quite it and stay on the Mino but I am not there yet. I am 5 months on Mino. How are you doing with RA? What are you on. Blessings, Heidi

[Linda L]

Heidi,
Thank you. I didn’t know its brand name is Plaquenil. I remember it from Dr Brown’s book.
I am very sensitive to any medications After taking Methotraxate, Naproxen and Zantac for many years. I take Mobic every third day and it is not enough. Long time ago I was considering Hydroxy but I didn’t dare to start it.
You take 200 mg twice a day. Have you ever tried to decrease it?
It is so strange that the same medication helps malaria-parasites and an immune disease like RA. From the other point of view I don’t believe that the disease like RA is an immune disease. If my immune system treats me any time when it’s necessary why it would focus on attacking just my joints. I don’t understand it.
Best wishes to you Heidi.

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 heterozygous

[hoften]

HI Linda: This is a very tricky disease. I did try to cut it in half once and my blood markers went up with regard to calcium. I went back on the twice a day regiment. I have not heard of Mobic. You might try Hydroxy. It is very effective with controlling the pain. I am trying to change my diet around. How long have you had this issue. I have had it over a year now.

[Linda L]

Heidi, I think it’s important to watch and experiment with your diet. Try gluten-free, dairy free and sugar free diet and see what happens. For me the most important is gluten-free but I also avoid dairy foods and sugar. And I love good chocolate………

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 heterozygous

[PhilC]

Hi Heidi,

hoften wrote:

Also, can you explain more about why my heart racing after stopping hydroxy for 3 or 4 days. You mentioned porphyria. I have never heard of this. This is all so confusing to me.

A side effect of some infections is a condition called secondary porphyria. The infection causes a build up of toxic porphyrins inside infected cells. Those toxins can have various effects, with tachycardia (rapid pulse) being one of them.

As for why hydroxychloroquine seems to be helpful, see:

Low-Dose Hydroxychloroquine is as Effective as Phlebotomy in Treatment of Patients with Porphyria Cutanea Tarda
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3501544/

Porphyria cutanea tarda (PCT) differs from secondary porphyria, in that PCT is inherited and secondary porphyria is not. Although you probably don’t have PCT, if you have secondary porphyria then that would explain why hydroxychloroquine is helpful.

Phil

P.S. Sorry for the long delay in getting back to you.

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[hoften]

HI: Thank you for that explanation. Would these toxic cells be the autoimmune cells? Would you know how to get rid of these toxic porphyrins inside infected cells.? Thank you so much. Heidi

[PhilC]

Hi Heidi,

hoften wrote:

Would these toxic cells be the autoimmune cells?

Not necessarily. They could be anywhere in your body.

hoften wrote:

Would you know how to get rid of these toxic porphyrins inside infected cells?

Effective antibiotic treatment should eventually kill all of the infected cells.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[hoften]

Thank you

[Author]

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