My Results

[BellaB]

Need to share some good results. At 14 years old I was diagnosed initially with Lupus then by 16 years old Rheumatoid Arthritis as well (called “Rupus”). Had spent 8 years on injectable Methotrexate, Plaquenil, Celebrex, Prozak. Last February I started the Antibiotic Protocol (AP). I was in an area that I couldn’t drip so I was put on Minocycline MWF 100mg (and started with 1 Clindomyacin drip, perhaps 600mg can’t remember). I believe I only had a mild Herx for 2 weeks, and ended up just stopping my shots of metho as I was ready to be done with that drug and tired of being nauseous. Within 2 months the swelling in my fingers went down enough that I could start to wear rings again. Symptoms continued to improve and I was able to rock climb, backpack, bike ride long distances, this past summer. I finally got my blood tested again in July and had huge improvement in my blood test results, some of my inflammation markers were cut in half, and I thought they would be improved because I felt so much better. I no longer take any Metho but have stayed on one Plaquenil a day (does anyone know of someone who has had harm to their retinas on this drug)? I don’t want to “rock the boat” while I’m feeling so good but wonder about going off of this as well… I also went off of Celebrex and am down to 1 Prozak a day (from having been on 3/day) so my brain too has improved from lack of inflammation.

Sorry it’s taken me so long to post my good news, I seem to be holding status quo and have remained improved so far (even though I’ve gotten a little negligent at always taking my Mino, I will remember Monday then forget on Wednesday, etc.) Guess that’s what happens when one starts to feel better.

My knuckles had finally lost the pointy peaks they had acquired over the last 8 years of disease activity, and now having not been diligent with my Mino this fall I notice some subtle knuckle inflammation starting up again (I have also been out of state finishing college and unable to make it to my AP Doctor).

If anyone has any comments on Plaquenil yay or nay – – I would appreciate hearing them.

Thank you.

BellaB

[Maz]

Hi Bella,

What fantastic news! So, you started your AP last spring? Having a bit of trouble figuring out your timeline.

I have been on plaquenil a few times and each time I’m only able to take it for about 5 or 6 months before I start getting side-effects. First time, it was optical migraines. Second time it was gastrointestinal gas – not pleasant! Third time, the same, but also started getting drug-induced lupus symptoms…the bain of my life. Ugh.

…I seem to be holding status quo and have remained improved so far (even though I’ve gotten a little negligent at always taking my Mino, I will remember Monday then forget on Wednesday, etc.) Guess that’s what happens when one starts to feel better.

My knuckles had finally lost the pointy peaks they had acquired over the last 8 years of disease activity, and now having not been diligent with my Mino this fall I notice some subtle knuckle inflammation starting up again (I have also been out of state finishing college and unable to make it to my AP Doctor).

If anyone has any comments on Plaquenil yay or nay – – I would appreciate hearing them.

My fellow patient take on this is that if you can somehow get back into a good routine of taking the pulsed mino, then slowly tapering off the plaquenil would be what I’d probably do. Mino in such small doses is far less toxic to the body than plaquenil, in general. I think I’d get firmly established back on my mino routine, get the knuckle swelling back under control and symptoms stabilized, then I’d slowly come off the plaquenil in increments. That’s just me, though.

Bella, do hope you will be open to writing us a testimonial for the Stories section on the site soon! What a great story it would be to share with others, especially as lupus patients often wonder if they can use minocycline (not realizing that drug induced lupus is an entirely different thing)! Thank you for the update!

[BellaB]

Hi Maz, I had my first Clindy drip in Feb 2015, and started Minocycline 2 days later, MWF 100mg. I stayed on Mino steady from Feb – Sept 2015 (with one Clindy drip once a month when I traveled home to my AP Dr.). My last year in college started and I changed living situations and couldn’t seem to keep a successful schedule with my AP regime. I am still quite improved with one flare a few weeks ago and a little more joint involvement, but my latest blood work is still very improved (10 days ago.)

I am happy to share a testimonial in the stories section soon. Thank you for sharing your own experience with Plaquenil.

BellaB

[bonnielou]

Bella, I started on Plaquenil and Minocycline at the same time, 8 years ago last October. I keep the plaquenil to a minimum now — about once a day or less frequently — but I still take it. My husband is an ophthalmologist, and in all his years of practice (30+) he has never seen anyone with complications from plaquenil — and he has seen many patients who take that drug. So yes, there can be complications, but they are rare.

I don’t know if the plaquenil is impacting my RA much, as I have never been on it by itself. But I am taking such a low dose that I am not very concerned about side effects.

Hope you continue to improve.

Bonnie

Bonnie Lou
RA 02/07,AP 10/07
Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!

[BellaB]

Bonnielou, thank you for your input on Plaquenil, I appreciate hearing how rare the optical complications are.

I am trying now to get back on the correct pulsing for Minocycline, and get myself back on track (just got to see my AP Doc for the first time in months and had a 600mg Clindy drip). Once I am consistent with my Minocycline MWF pulsing regime, I hope I will respond as favorably to it as I did for the past year.

BellaB

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