Ready to start AP for RA – Need Encouragement!

[CurlyinNC]

I just saw a new rheumatologist and she agreed to write me a prescription for minoclycline – the first hurdle! While this doctor has several patients using doxycycline, she had no experience with minocycline, but agreed to prescribe. Of course, she gave me the speech about how it’s important to treat RA aggressively as soon as possible and she wanted me to start methotrexate. When I told her that I had read that people do better on AP when they haven’t already tried many of the toxic options, she said she didn’t know where I read that, but there’s no way anyone could know that. I pointed out that doctors who have treated both types of patients, could certainly speak from experience.

I convinced her to let me start on 50 mg which I want to take MWF. She apparently had never heard of pulsing the dose. So I guess it’s up to me to decide how to take it and how/when to increase the dose. She said try it for a month and we’ll see how you do. I told her that I was not expecting to see results in a month, that this is a long-term treatment. So she said she would see me back in 3 months.

I’m sure there are others who have had to use the same type of “evidence-based” physicians, and I would like to hear how you have managed with them. She did refer to tetracyclines as DMARDS, but said they were weak. Clearly she has not read the research and I didn’t offer her copies since she is not a believer.

Since I have been unable to tolerate NSAIDS – they either upset my stomach or elevate my BP, she has give me an Rx for 5 mg prednisone. I have misgivings about using the prednisone, but am not sure I have a choice. Although I did read in the historical protocol, I think, that low-dose steroid therapy could be beneficial when starting AP. I would love some feedback from others about how you have dealt with the inflammation without NSAIDS.

Lastly, I need info on how much Vit. C to take along with my Minocin and also what type of probiotic would be best. Many thanks in advance. If I didn’t have this forum, I would be totally lost and possibly despondent.

Diagnosed with RA 10/2014 with very positive anti-CCP. Rheumatoid factor was negative and continues to be negative.
Began abx treatment 12/2014.
Currently taking minocycline 100 mg bid M-F, diclofenac 75 mg as needed, probiotics, various other supplements.

[vinny]

Prednisone is very important at the start of AP to prevent pain increase from the herx reaction. I have been on Prednisone many times since the beginning of my attack in 2008 as I adjust my protocol.

Psoriatic Arthritis: 100mg Minoz Minocycline TABLET daily; twice daily 400mg Pentoxifylline;125mcg Levotyroxine: Have been using some level of Minocycline since 2008

[CurlyinNC]

Thanks, Vinny. I need all the help and input I can get. I just want to use the safest route to the best results.

Diagnosed with RA 10/2014 with very positive anti-CCP. Rheumatoid factor was negative and continues to be negative.
Began abx treatment 12/2014.
Currently taking minocycline 100 mg bid M-F, diclofenac 75 mg as needed, probiotics, various other supplements.

[Amelia]

Be encouraged… your should have genuine hope.

Our story with AP:
My son (15 y/o with JIA, CREST) went through the standard rheumy protocol – methotrexate, Celebrex, Enbrel and Humira for over 2 years. Although his symptoms did lesson, his pain was still a 7/10 while on those drugs. After much reading, research and discussion, we decided to try the Antibiotic Protocol because we figured – what do we have to lose? Thankfully our son has responded very well to the AP treatment. He has been on minocycline 100mg MWF for 1 year and 4 months (off all else) and he just completed the IV treatment last month (clindamycin). His symptoms have lessened markedly (now 2/10 pain) and his fatigue is completely gone. He is now testing ANA negative (we have blood work every 3 months to monitor). His arthritis is on the sidelines – he went surfing in 65 degree water yesterday (with wet suit but could never have tolerated this with his previous Raynauds).

I admire that you are an advocate for yourself! I found that being educated and reading as much as I could about the treatment options was helpful. I recommend reading Our Roadback available on Amazon if you are interested in reading testimonials. Also The Arthritis Breakthrough on Amazon has wonderful stories of hope along with additional testimonials on the Amazon site regarding the book.

Wishing you the very best as you begin the process of healing.

[m.]

Best of luck to you!

If you have time, can you create a signature? It helps to keep everyone straight and remind readers what your diagnosis is, how long you’ve been on AP, and what you’re taking.

If you don’t know the steps, it’s clicking on User Control Panel up on top of the page, the Profile, then Edit Signature.

I’m not on minocycline and I don’t take Vitamin C, so I cannot speak to that. Hopefully someone else will chime in with suggestions on brands and dosage. If not, try using the search box.

I’m not sure what the best probiotic is, but I take Natren Bifido Factor regularly, Natren Megadophilus (vaginal suppository 1x a week), and Jarrow Saccharomyces Boulardii sporadically.

I also eat homemade yogurt daily. I have also started to get back to making and eating fermented vegetables and kefir. I have some kefir on the counter now, and also a batch of ginger carrots. I also make sure to eat plenty of potatoes (a source of fermentable fiber) to feed the good guys in the colon (and hopefully not feed too many bad guys).

I’ve never taken prednisone. I did, however, take so much aspirin in the beginning that I lost a lot of blood, which I caught on a follow-up blood test.

[Maz]

@CurlyinNC wrote:

I just saw a new rheumatologist and she agreed to write me a prescription for minoclycline – the first hurdle! While this doctor has several patients using doxycycline, she had no experience with minocycline, but agreed to prescribe. Of course, she gave me the speech about how it’s important to treat RA aggressively as soon as possible and she wanted me to start methotrexate. When I told her that I had read that people do better on AP when they haven’t already tried many of the toxic options, she said she didn’t know where I read that, but there’s no way anyone could know that. I pointed out that doctors who have treated both types of patients, could certainly speak from experience.

I convinced her to let me start on 50 mg which I want to take MWF. She apparently had never heard of pulsing the dose. So I guess it’s up to me to decide how to take it and how/when to increase the dose. She said try it for a month and we’ll see how you do. I told her that I was not expecting to see results in a month, that this is a long-term treatment. So she said she would see me back in 3 months.

I’m sure there are others who have had to use the same type of “evidence-based” physicians, and I would like to hear how you have managed with them. She did refer to tetracyclines as DMARDS, but said they were weak. Clearly she has not read the research and I didn’t offer her copies since she is not a believer.

Since I have been unable to tolerate NSAIDS – they either upset my stomach or elevate my BP, she has give me an Rx for 5 mg prednisone. I have misgivings about using the prednisone, but am not sure I have a choice. Although I did read in the historical protocol, I think, that low-dose steroid therapy could be beneficial when starting AP. I would love some feedback from others about how you have dealt with the inflammation without NSAIDS.

Lastly, I need info on how much Vit. C to take along with my Minocin and also what type of probiotic would be best. Many thanks in advance. If I didn’t have this forum, I would be totally lost and possibly despondent.

Hi Curly,

I ditto Amelia – great job advocating for yourself and learning all about the treatment for RA in advance. You did it and this can be quite a challenge for patients who do not have AP docs in their vicinity. It is possible to self-manage the treatment, as you’re doing, but just a heads up that it’s not a bad idea to consult an experienced AP doc as time goes on if you aren’t seeing improvements in labs/symptoms the 6 to 8 months timeframe, as it might require some tweaking of your protocol dosing. There is a great doc in Iowa who will kindly answer patient questions via email/phone, so there is this option if finances are a concern.

Brown would use 5 to 10mg of prednisone in the early herx stages, to help patients through this period, but it’s important not to stay on it for long, as it can create dependency and other health concerns, including elevated BP as it causes the body to retain sodium, thereby increasing water retention.

http://www.sharecare.com/health/prednisone/how-prednisone-affect-blood-pressure

There is a very helpful website, called Drugs.com where you can scope out any drug you’re taking and also check for interactions with anything else you’re taking.

There are some natural anti-inflammatory supps you can check out, too, like curcumin and boswellia serrata (natural form of aspirin without the side-effects), but some supps can also interact with meds, so always should check these, too.

I take daily Vit C (buffered ascorbic acid powder) that I put into my morning smoothie and I take 2000mg per day. If you have any probs with kidney stones, this is probably something you should research in advance, as some believe it may cause or worsen this condition. Vit C has great antioxidative properties, which helps the body dispense with free radicals (toxins) that exacerbate inflammation. I go for bi-weekly IV Myer’s Cocktails (includes 5000 mg Vit C) and glutathione IV pushes and, although these are purely palliative in the shorter term for inflam relief, there are cumulative effects in terms of helping the body to chelate, bug-killing and other benefits. Linus Pauling was a researcher who invested much time in treating and researching patients with Vit C and there is much info on his site about the benefits of Vit C for chronic diseases, but he has been criticized and marginalized as a quack from various quarters. However, the bottom line is that Vit C is chelative and binds to iron in the body and helps to metabolize it out and also to help prevent minocycline-induced hyperpigmentation.

http://lpi.oregonstate.edu/infocenter/vitamins/vitaminC/

http://www.ncbi.nlm.nih.gov/pubmed/9893512

Perhaps others here will share what dose of Vit C they are finding helpful to help you in your researches, Curly.

PS. Just saw that m. had also posted above, so just letting you know you have other replies. Just didn’t want you to miss these. 😉

[CurlyinNC]

Thanks to everyone who has encouraged me thus far. Many weeks ago, I did attempt to contact Dr. S in Iowa, both by phone and then by e-mail. I was unsuccessful both times. Talking with him would certainly make me feel less alone. Any tips would be helpful. I am currently taking turmeric with curcumin – 900 mg daily, but so far have not seen any results. Perhaps I’ll try the boswellia. Amelia, your story was so heart-warming and a great encouragement to me.

M., I will work on my signature.

Diagnosed with RA 10/2014 with very positive anti-CCP. Rheumatoid factor was negative and continues to be negative.
Began abx treatment 12/2014.
Currently taking minocycline 100 mg bid M-F, diclofenac 75 mg as needed, probiotics, various other supplements.

[Amelia]

I am glad to hear you are reaching out to Dr. S in Iowa. He takes calls on Tuesdays, Wednesday and Thursdays from 9am -11am CST. He does check email but may be delayed with responses. He is absolutely wonderful and will be happy to answer your questions.

[CurlyinNC]

Thanks, Amelia. I tried again and reached Dr. S. this morning. He suggested that I increase my minocycline to 100 mg bid MWF. I started today! I’m a bit nervous, but at least hopeful. It certainly made me feel less alone to talk with a doctor who wasn’t resistant and doubtful.

Diagnosed with RA 10/2014 with very positive anti-CCP. Rheumatoid factor was negative and continues to be negative.
Began abx treatment 12/2014.
Currently taking minocycline 100 mg bid M-F, diclofenac 75 mg as needed, probiotics, various other supplements.

[Amelia]

I am glad you were able to speak to Dr. S today – he has monitored patients with the protocol since the 1970s, his experience has given me confidence in his advice. My son also takes 100mg x2 on MWF. I remind myself this is a lessor dose than they give kids for acne. Do you keep a log of your pain (like weekly) – I found it was a slow but steady decline for my son.

[CurlyinNC]

Yes, Amelia. I’ve been keeping a diary since my diagnosis was made. Do you mind if I ask how soon you were able to see any improvement with your son? Also, was he initially taking something for the pain/inflammation? Dr. S. said I should try to do without the prednisone if possible so I’ll know what is causing any improvement. I think I can take plain aspirin to help. Keep your fingers crossed that I can tolerate the aspirin better than the other NSAIDS I’ve tried.

Diagnosed with RA 10/2014 with very positive anti-CCP. Rheumatoid factor was negative and continues to be negative.
Began abx treatment 12/2014.
Currently taking minocycline 100 mg bid M-F, diclofenac 75 mg as needed, probiotics, various other supplements.

[PhilC]

Hi,
@CurlyinNC wrote:

Since I have been unable to tolerate NSAIDS – they either upset my stomach or elevate my BP, she has give me an Rx for 5 mg prednisone. I have misgivings about using the prednisone, but am not sure I have a choice.

What specific NSAIDs have you tried? Just because a particular NSAID upset your stomach or caused your BP to increase, that doesn’t mean they would all have the same effect on you (there are many NSAIDs to choose from).

Phil

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

[CurlyinNC]

Oops!

Diagnosed with RA 10/2014 with very positive anti-CCP. Rheumatoid factor was negative and continues to be negative.
Began abx treatment 12/2014.
Currently taking minocycline 100 mg bid M-F, diclofenac 75 mg as needed, probiotics, various other supplements.

[CurlyinNC]

Hi, Phil. I ‘ve tried Naproxen, Voltaren & Relafen. The Voltaren elevated my BP while the others caused stomach cramps. My first rheumatologist simply didn’t want to recommend anything else and suggested I see someone else which I did. In other words, she fired me. The new rheumatologist doesn’t really believe in NSAIDS (she referred to them as pain pills) so she gave me Prednisone 5mg. What she really wanted me to do was to start on Methotrexate.

I seem to be able to tolerate plain buffered aspirin so I’m trying that for now. Dr. S. recommended that I limit the prednisone so I would know if the Abx were helping me improve.

I’m praying that the aspirin helps because I don’t want to ask the doctor for another anti-inflammatory. However, if you have suggestions regarding some better choices of NSAIDS, I would welcome the info.

Thanks for helping to encourage me on this very new journey. I’m scared most of the time, but am trying to be hopeful.

Diagnosed with RA 10/2014 with very positive anti-CCP. Rheumatoid factor was negative and continues to be negative.
Began abx treatment 12/2014.
Currently taking minocycline 100 mg bid M-F, diclofenac 75 mg as needed, probiotics, various other supplements.

[Author]

Posts