Rheumatoid Arthritis "Treatment"

[Cheryl F]

I hope you all will find this little story as funny as I do.

My husband was diagnosed with RA about 7 years ago. Because our daughter had used AP for systemic scleroderma, I knew what to do when the first signs of RA appeared. He started on Minocin very quickly and was diagnosed by a Stanford trained rheumatologist shortly thereafter.

So, my husband now has other health issues for which we are seeing multiple doctors at Stanford, the immunologist Doctor wanted him to see a rheumatologist. We had the appointment with the Stanford rheumy today.

After taking a thorough history, and knowing that his RA was treated with minocycline, she told us that she does not believe he ever had RA because “RA ALWAYS PROGRESSES WITHOUT TREATMENT.” She knew he had taken minocycline, minocycline is an American College of Rheumatology approved DMARD, but she discounts the original diagnosis because “RA ALWAYS PROGRESSES without treatment.” She asked at least 4-5 times why the rheumatologist did not prescribe methotrexate.

She also said that in her experience, “minocycline does not work.” Um, I am pretty certain that she has no experience with prescribing minocycline for RA because she was indoctrinated against it in medical school.

So sad, a simple treatment that helped my husband recover so nicely is completely discounted.

Oh yeah, several doctors have also said the our daughter must not have had scleroderma because she got better.

Crazy what people will do to make sure they stay within their own paradigm.

~Cheryl

[CMS12]

So good to hear this. Thank you for posting. The same thing happened to me with my new rheumy. When I had to switch to him in 2008 because my other rheumy retired and I told him I was on Minocycline he laughed out loud. He said, “that only works in Nebraska” (referring to O’Dell’s studies in Nebraska I assume). When he saw me achieve remission on Minocin in 2010 he would not acknowledge it was from Minocycline but he never gave me a hard time again. He just sees me and asks if I’m still on Minocycline. He doesn’t tell me to stop taking it like he did in the beginning. Too bad doctors are so indoctrinated to push everything but Minocycline treatment. I’m hoping the day will come when he will see the light. I can see on his face that he wonders about it.

[jasregadoo]

Funny if it weren’t frustrating at the same time. My rheumy doesn’t think it’s as effective as methotrexate, she thinks it’s ‘old school’, but at least she’s open minded enough to see that it’s working. I’m also on Sulfasalazine…maybe that gives her some cushion. I wish she would believe in it like she does some of the stronger drugs. Maybe they work faster (and I don’t know, I’ve not been on them), but the side effects scare me. And most of us, or we wouldn’t be here.

[Maciej P.]

I’ve read several scientific papers about Mino, and they found it helps, however it was tested only for severeal weeks (but should a year or more). General conclusion was something like that: Mino helps some patients, but it needs more researches to be done.

Pay attention to “need more researches”! … and what? There are no “more researches” being done (or if they are any, the amount of them is too low).

Why? … because there is no money from cheap, effective treatment… damn… what a crazy world we are living in :/

March 2016:
31 y.o. male, Poland, Europe.
Diagnosed with RA (started as palindromic rheumatism) at age 28 (SED negative, RF negative, CRP negative, Lyme negative, Chlamydia negative, ANA highly positive, aCCP/ACPA higly positive.
Treated with sulfasalazine - no success. Chloroquine - no success. NSAID - no success.
Treated with MTX injections (10mg->15mg->20mg->15mg->12,5mg->10mg->5mg) for 2years. Almost total remission. 3 months after MTX quit - got RA again with trippled strength.

[bonnielou]

Oh Cheryl, that is funny and sad at the same time. I just had my 6 month appointment with my doctor and she comments, “I wish I understood why you are so bent on taking that minocycline.” Maybe because it has kept me healthy for the last 8 years? She just won’t believe it, as well.

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!

[Cheryl F]

We will be seeing Dr. F in Riverside in mid-April. The team of doctors he is seeing is pushing prednisone, cellcept, retuximab etc. pretty hard even though he is immune deficient. I spoke with Dr. F last night and I think we have a good plan. Although, my biggest goal now is not not “get fired” by the Stanford doctors, including the one young Stanford doctor who, while she takes her mino everyday, no longer really “believes in” AP.

Cheryl

[richie]

To Maciej–I will just quietly refer you to NIAMS.gov dated 1995 -here you will find the publication of THe MIRA study which was a nationwide double blind study of Minocycline IN Rheumatoid Arthritis –This study was led by A University of of Nebraska doctor with a Harvard doctor as chief researcher –it also include a Dutch doctor and an Israeli doctor –Very surprised you didnt see this info –VERY GOOD CHERYL -heres my little latest story –my internist of 35 years retired –he is the one who marvelled at my recovery –we found a new internist- older doctor —went today to get my refills –come to Minocin –he tells me -you probably didnt have scleroderma but I wont change anything —I go on to tell him over these years more than a few people who didnt use minocin are no longer here –he tells me “you wouldnt be here if you had diffuse scleroderma -you dont have scleroderma anymore –I dont think you ever had it –he gave me the prescription -thats all that matters !!!!

[Cheryl F]

Richie:

Good to “see” you! We have heard that a few times about Jess too. The last time she saw a conventional rheumy at UCLA though (a sclero specialist) that Doctor definitely confirmed to diagnosis (due to labs and the nail fold exam). She said “we don’t believe in this (mino)” but I won’t argue with your success.

I was just irritated having this rheumy repeatedly say “no treatment” when mino IS A TREATMENT listed by the ACR.

Cheryl

[Maciej P.]

richie wrote:

To Maciej–I will just quietly refer you to NIAMS.gov dated 1995 -here you will find the publication of THe MIRA study which was a nationwide double blind study of Minocycline IN Rheumatoid Arthritis –This study was led by A University of of Nebraska doctor with a Harvard doctor as chief researcher –it also include a Dutch doctor and an Israeli doctor –Very surprised you didnt see this info

thanks for that info, however:

1) NIAMS.gov web page is not available 🙁 , did you mean http://www.niams.nih.gov ?
2) if those nationwide double blind study was succesfully – why still MTX and other DMARD are commonly used/prescribed instead of AP ?

odd :/

March 2016:
31 y.o. male, Poland, Europe.
Diagnosed with RA (started as palindromic rheumatism) at age 28 (SED negative, RF negative, CRP negative, Lyme negative, Chlamydia negative, ANA highly positive, aCCP/ACPA higly positive.
Treated with sulfasalazine - no success. Chloroquine - no success. NSAID - no success.
Treated with MTX injections (10mg->15mg->20mg->15mg->12,5mg->10mg->5mg) for 2years. Almost total remission. 3 months after MTX quit - got RA again with trippled strength.

[richie]

Hi -Yes -that must be the site –as to your question -that is better posed to doctors –
richie

[Maz]

The study summary is posted in the Resources section of the main site, under Studies:

http://annals.org/article.aspx?articleid=708353

Maciej, were you able to get a digital copy of The New Arthritis Breakthrough? Henry Scammell, the author, explains all this in the book.

Minocycline is an approved American College of Rheumatology DMARD, largely as a result of the MIRA study. However, rheumatologists view mino as a weak, old DMARD (methotrexate and sulphasalzine are too!) and do not acknowledge the antimicrobial mechanism of action for RA. Therefore, when a patient worsens initially (herx), it is believed that the mino isn’t working, when in fact it’s doing exactly what it’s supposed to be doing.They also tend to use too high a dose, making herxing intolerable for the patient. Even in the MIRA trial (Trentham never acknowledged an infectious cause), they started patients off low and slow on 100mg per day, increasing to twice a day later.

http://www.rheumatology.org/I-Am-A/Patient-Caregiver/Treatments/Minocycline-Minocin

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