PRESENT DAY –> RA diagnosis since 1996. What's worked for me so far and more

[PhilC]

Hi Martha,

Taking methotrexate will increase your cancer risk. See:

Association between malignancy and methotrexate and biological disease-modifying antirheumatic drugs in patients with rheumatoid arthritis
.
https://www.ncbi.nlm.nih.gov/pubmed/31854294

Phil

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

[Linda L]

Methotraxate and Humira caused my pneumonia x 3. Last time I was close to the other world.

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 Martha,

MarthaNH wrote:

It’s interesting you asked me if I have considered taking Solodyn daily… I discussed this with my doctor (P.M.) in earlier this year. He asked me if there were cases (data) to support taking it daily.

Several people on this forum switched from pulsed dosing to taking the full daily dose of minocycline, and experienced improvement. In at least one case, the improvement was dramatic (and rapid). Of course, this is considered anecdotal evidence. However, all of the clinical studies I am aware of that tested the treatment of rheumatoid arthritis with minocycline used daily dosing (i.e., 100 mg b.i.d. or 200 mg/day).

Here are two of them:

Minocycline in rheumatoid arthritis. A 48-week, double-blind, placebo-controlled trial. MIRA Trial Group.
https://www.ncbi.nlm.nih.gov/pubmed/7993000

Treatment of early seropositive rheumatoid arthritis: a two-year, double-blind comparison of minocycline and hydroxychloroquine.
https://www.ncbi.nlm.nih.gov/pubmed/11665963

Phil

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

[MarthaNH]

Sorry for the delay in providing an update. Last week I was crazy busy with doctor, dentist and other appointments and also with work. Thanks for responses!

Phil, Regarding your 1/6 post, to my comment “FYI – Solodyn is a time released caplet… the closest I could find to brand name Minocin.”

I apologize if I got my information wrong… I am pretty sure I read somewhere that Minocin produced by Lederle consisted of pelletized balls that were extended release (vs powder in many of the generics). In my own research (in 2018?), Valeant Pharmacuticals purchased Minocin from Lederle and this was the product that they (Valeant) were selling. I called Valeant back in 2018 and spoke to someone in customer service who answered some questions I had about it. So in my own research/thinking, Solodyn is the closest to Lederle’s minocin as they had bought the original minocin formula. I have a Solydyn bottle from my prescriptions, and it is made by Valeant Pharmaceuticals in Ontario Canada. If I got that wrong, my apologies.

The good news is that what I am doing appears to be working for me! I saw the new-to-me Rheumatologist in Exeter NH and he declared I am in remission! He stated that based on the fact that I am not in pain now. He was squeezing all my hand joints… does this hurt? no. Does this hurt? no… He did say that my knuckles being large, curled / crooked fingers,swan neck fingers etc are not going anywhere, it is permanent damage. And he was in denial that any of the other things I am doing (e.g. Solodyn, Valtrex, Alkaline, Celery Juice, Magnets, Vitamin C etc) are directly correlated to the remission (I was just smiling). He also told me I could lower the plaquenil to 1x a day but that it is dangerous to my system to be on minocin/minocycline 3 days a week (longterm). He ran a bunch of blood tests, did xrays on my hands and chest/lungs (as a sidenote, I had xrays also done on my shoulders after getting my annual physical 2 days later as I forgot to tell the Rheumatologist that I have limited range of movement in my shoulders now). I will see him again on 2/14 and I am determined to feel even better by then. He told me I am in remission and I am HAPPY about that but I feel my body is still in some sort of war.

I am going to stay with Solodyn for a while longer (I believe everything I am doing is contributing to the lack of pain) and have changed my frequency to 4x a week to MWF and Saturday. I notice the tops of my feet (especially the foot that has the worse of the cross-over toes) feel a bit itchy after I take the Solodyn…. wondering if it is related to some sort of die off. I noticed the palms of my hands were itchy for a couple days after I started taking the generic Torrent minocycline in Sept 2018.

Thanks for the info too, Phil, on methotrexate and cancer risk! (that is strange as methotrexate is supposed to be low dose chemo that actually fights cancer… i need to read the link you posted, thank you) The doctor I just saw didn’t push/suggest any meds for me other than the Plaquenil. He said if the pain came back (non-remission), I could consider (in addition to Methotrexate), Rituxan (for Lupas or RA) or Leflunomide (similar to Methotrexate). These block immune system but allows the soldier cells/system to look for cancer cells – this part not blocked which would work better with my Gorlin’s syndrome (basal cell skin cancer). I haven’t read yet about these possible drugs; I am going to continue what I have been doing and see if I can feel/get even better by the time I see him in mid February (to review my xray results, blood tests etc).

———————————————

Maz, Thanks for the comment on alkaline. I will do some searches to read past conversations. For anyone who hasn’t tried it, my personal opinion is that it is a missed opportunity to accelerate wellness. Chronically ill ppl tend to be acidic (ppl can get the test strips on Amazon to check out what their level is (search Amazon for “pH Test Strips 120ct” by HealthyWiser” $8.11 for a package) and that can’t be doing any good in the healing process. I consider it one of my pillars for starting to feel better and I anticipate a positive impact on my basal cell skin cancers. I list a supplement in my signature that I am using to increase it — baking soda will work (I think you may have to add some potassium in) but when I am super busy at work it is a lot easier/faster to take a capsule with a glass of water vs the mixing of the powder into the water etc. I have also been drinking lemon water which has made a difference. As a side note, I just found a bottled water product at my grocery store called “Eternal Water” which promoted itself as being highly alkaline naturally. I tested it with the strips I mention above and sure enough it is very alkaline, I was pleasantly surprised. Nothing added to the water, all natural. So I have started buying/drinking that as well.

———————————————

Linda L, I am VERY sorry to hear about your near-death experience with pneumonia. WOW! That must have been super scary. Were you doing methotrexate and humira at the same time??

As of 1/8/2020: Solodyn 105mg MWF & Saturday, Valtrex (1 gram, 3x a day), Plaquenil (200mg 1x a day), Probiotics, Vit B, Calcium & Magnesium, D3 (10,000 per day), Zinc, Vitamin C (at least 5 grams a day), Glutathione, Klaire Labs Bi-Carb Formula (for increased alkaline) 4x a day. CurcuPlex-95 by Xymogen, 16+ oz of celery juice first thing in the morning (nothing added to it). Magnets. Acupuncture. Diagnosis: RA 1996 (which came on suddenly with Lyme infection).

"The journey IS the destination."

[Linda L]

Martha, yes, he gave me Methotraxate and Humira together. Regarding your skin conditions and itchy skin we have here an excellent probiotic called “Egzema shield” by Inner Health. Whatever undesirable appears on you skin disappears quickly. Now something interesting, maybe not on subject. I have noticed that two of my friends’ melanoma started on their face where their sunglasses touch the skin on both sides of the face. So I think it started with the reaction of the plastic on the skin in hot weather. They always blame sun, but maybe sunglasses /or even optical?/ should be blamed as well?

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

[Maz]

Hi Martha,

Thanks – I’d forgotten that I do use tri-salts! It’s not a regular thing anymore and hubby uses it more often nowadays for cramps after cycling. I didn’t find it helped me as much when used regularly as it has helped you but it’s great that it does! Whatever works! Congrats on such a wonderful outcome from your rheumy appt! That’s what you want to hear!

[MarthaNH]

I forgot to add that I told the rheumy that I was 100% SURE that drinking celery juice 2-3x a day for three weeks got rid of the RA nodules on my forearms (lumps that were starting to concern me over the summer). He thought this was a bit “out there.” He’s relatively young so my hope is that I can make a difference on his thought process over time. 🙂 I read the book How Doctors Think when my dad was having open heart surgery and it was very eye opening about how doctors operate – using primarily their own education and past experiences (residencies and patients) to make diagnosis. I would like these protocols to be part of his future decision tree (some day…).

Thanks Maz, I had not heard of tri-salts, those sound interesting! And thanks for the congrats!

Linda, I can’t believe your doc prescribed those two drugs together, that seems over the top to me. I have been on both of those but separately. They both relieved my symptoms but they didn’t fix the root cause.

All – It was an amazing feeling being told I was in remission and NOT being on something that kills my immune system. The doc DID tell me that minocycline has anti-inflammatory properties (I hadn’t heard that…. perhaps because it’s killing bad things? ;-)) . So in a nutshell, I think he feels it is combination of plaquenil (even though I was taking sporadically) and the anti-inflammatory properties of minocycline that put me in remission….. (as I side note, he hadn’t heard of The Road Back, which i thought was strange)

As of 1/8/2020: Solodyn 105mg MWF & Saturday, Valtrex (1 gram, 3x a day), Plaquenil (200mg 1x a day), Probiotics, Vit B, Calcium & Magnesium, D3 (10,000 per day), Zinc, Vitamin C (at least 5 grams a day), Glutathione, Klaire Labs Bi-Carb Formula (for increased alkaline) 4x a day. CurcuPlex-95 by Xymogen, 16+ oz of celery juice first thing in the morning (nothing added to it). Magnets. Acupuncture. Diagnosis: RA 1996 (which came on suddenly with Lyme infection).

"The journey IS the destination."

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