MTX and AP at the same time

[David C]

Hi All

Need some advise as I am a little confused about the road ahead. Just went to a AP doctor and was surprised to be prescribed with MTX and Minocylin at the same time.I was told that AP need some time to take effect and needed methotrexate to control the disease. The initial excitement of starting AP turned out to be disappointing as I have to also take the toxic drugs as well. Is it logical for our immune system to be supressed by MTX and fight the antigen at the same time. Two reasons I can think of is maybe my condition is so bad that I really need the suppresive drugs or the doctor is not quite confident about the AP approach. Although the disease is progressing but I still consider myself OK if compare to many on this site who are a lot worse and got better after starting AP alone. Is there anyone on this site who is taking MTX and AP at the same time to fight the disease? 

[Maz]

[user=1184]David C[/user] wrote:

Just went to a AP doctor and was surprised to be prescribed with MTX and Minocylin at the same time.I was told that AP need some time to take effect and needed methotrexate to control the disease. The initial excitement of starting AP turned out to be disappointing as I have to also take the toxic drugs as well. 

Hi David,

I'm a little confused, too. Weren't you going to see Dr T in Boston? 😕 Also, didn't you say before that you had low hemaglobin and hemocrit levels? Here is a website describing the side-effects of methotrexate, which include anemia:

http://www.drugs.com/sfx/methotrexate-side-effects.html

This said, there are two schools of thought here:

First,  when one chooses AP and treats it as an infectious disease with a tetracycline, the theory is that you need your immune system intact in order to fight the infection. This is because the tetracyclines don't kill the pathogens, they merely disable them. It's the immune system that does the killing. That's because the tetracyclines are in the bacteriostatic class of antibiotics, meaning they work intracellularly by blocking certain processes needed by pathogens for their survival. The bacteriocidal antibiotics, on the other hand, kill pathogens outright by destroying their cell walls. Cell wall deficient mycoplasmas don't have cell walls. They have a fragile outer lipid layer that contains them. So, the tetracyclines enter this outer lipid layer and block certain enzymatic and proteins needed by mycos in order to reproduce and thrive. Once weakened, the immune system is better able to go in for the kill. A disabled immune system is less able to do this and clear away debris and toxins, so suppressing the immune system is working counter-productively to the purpose of AP.  

The other side of the coin is that some people find that their disease is so aggressive that in order to function they need to have some form of immune suppression in the beginning to help them over the initial herxing period. This is not a failing. In some cases, it's a necessity in order to get out there and make a living, look after kids, look after an elderly relative, etc. It's a question of needs must. In some cases, it's a question of weighing the costs of some joint damage that may occur in swift onset, aggressive cases. What these folk will do is do both at the same time. It may slow progress on AP (getting at the root cause), but once the disease is stabilised, the intent is to gradually wean off the immunosuppressant drug completely.

Dr Brown often looked after some very sick patients who had been on immunosuppressive therapy for a long, long time, so these patients came to him when other therapies had failed and his view was that those treatments weren't working on their own for these patients and that AP was the answer…sometimes their last resort…and he had very good success with it. However, some people do need help to function in the beginning.

As you are quite early in your disease, the odds are in your favor that you will do well on AP and turn this around quickly. It really depends on whether you want to try AP alone first or if you need help to reverse your symptoms quickly and later wean off the methotrexate when you feel better. Marg's daughter had a very good experience starting on both methotrexate and AP and was later able to wean off the methotrexate and is on AP alone now. Others find the toxicity of methotrexate to be tough on them.

There really is no one size fits all with this and it's very much a personal decision each of us has to make with our physician and you can disagree with your physician, if you want, too. Wish I could be of more help to you than this, but it's really up to you which route you want/need to take after you've digested all the information to make the best, informed choice for you. Hopefully those who have gone this route before you can chime in to share their experiences with you.

All the best, David…I know this must be a hard decision to make, but you'll make the right one for you.

Peace, Maz 

[suera]

Maz,
As usual, a thorough and thoughtful answer.
Sue

[superperroRA]

David, rather than using the MTX for anti-inflammatory, I would try a strong NSAID. I believe AP works faster with NSAIDs than with MTX because MTX greatly lowers your immune system, which AP depends on. Besides MTX has very scary side effects.

 I've had a lot of success with Voltaren(not a Cox 2 inhibitor, so safer on the heart, but worse on the stomach lining) and Celebrex(Cox 2,  so less harsh on the stomach, but it can give strokes if used continuously in large doses for many months). Some people also like Mobic(cox 2), although that one does nothing for me. I have found that NSAIDs are very people specific (one might work wonderfully for you and do nothing for me or vice-versa), so I recommend that you give a short trial to as many as possible (there are dozens of NSAIDs). Currently I am taking low doses of both Celebrex and Voltaren (to hedge my bets), plus minocin of course, and doing great.

P.S. Voltaren also comes in a gel that you can put on your knees, for example, thus bypassing gut issues. I haven't tried it though

[David C]

supperperro

Thanks for the info cos it has been in my mind whether I'm taking the right pills to manage inflammation and pain that won't interfere with AP. Currently I'm on Naproxen almost everyday unlike a month ago only take it if necessary. If anyone has better ways or natural remedy will be a plus. 

Yesterday was my first night on AP & decided to leave MTX alone after dropping Sulfasalazine ( another tpye of DMARD from my original rheumy). Thanks to RBF members here who has provided precious info & experience thus helping me to finalize my decision. Another puzzle is whether everyday AP (my current dose – 100mg/night) is necessary while most on this site does (M,W,F) dosing. Is it call pulse dosing? It seems that you guys are better resource than my AP doctor  :roll-laugh:

[David C]

OH! Forgot another thing :headbang: , is it better to go with minocin (the brand name) or minocylin (currently taking). What's the difference?

Thanks

David

 

[Maz]

[user=1184]David C[/user] wrote:

Another puzzle is whether everyday AP (my current dose – 100mg/night) is necessary while most on this site does (M,W,F) dosing. Is it call pulse dosing?

 

Hi David,

When you get a chance, try to read “The New Arthritis Breakthrough,” by Henry Scammell. It includes Dr Brown's book, “The Road Back.” Pretty much everything you will need to know about AP is in that book….better still, it has a number of testimonials where you can read all about other folk who have been before us. I had the great pleasure of meeting Diane Aronson a couple weeks ago and who has a chapter in the book.She is still in remission after 30 odd years and you'd never know she had such a severe case of RA. I must have read that book cover-to-cover 5 or 6 times while I was at my worst…it really keeps you going.

Also, if you haven't watched the Dr Brown documentary yet, you'll find a lot of good info in that, too. 😉 http://www.vimeo.com/3154687

There are two basic protocols for AP:

1. The Harvard Protocol, which was the protocol that was used in the MIRA Trials that were co-conducted by Dr T. This protocol involves daily dosing of minocycline at 100mg twice a day. 
 

2. Dr Brown's pulsed method, which involves variations on alternate day dosing. An example would be 100mg once or twice a day on Mon, Wed or Fri (MWF) or every other day without weekend breaks. Sometimes longer pulses are used, like weekday dosing with weekends off. 

 
Different physicians have different perspectives on what works best and some physicians like to individualise and titrate the protocol to patient tolerance. The rheumatic patient's tissues tend to be hypersensitive and inflammed already. When beginning AP, a herxheimer reaction (worsening) is expected and this varies in timing and duration for each patient. The “herx” will involve an increase in existing symptoms and possibly new ones, hence more inflammation. So some patients can't tolerate starting out on the Harvard Protocol. 
 

I was one of those patients who couldn't tolerate the higher dose. Daily dosing is thought to have more immune-modulation and anti-inflammatory benefit, so I was keen to get relief as soon as possible. However, I tried 100mg once a day in the first week, did okay, but then added the extra 100mg the following week and herxed like crazy. So, I had to dial down my dose and settled on 100mg twice a day MWF. I've stuck with this and done very well. 

 
As I discovered by being a little too enthusiastic, for people who are pulsing, it's better to start low and slow and find your ideal dose by gradually increasing rather than herxing heavily and then trying to find the optimal dose. Starting low and slow is the general rule with AP and an AP doc who does this might gauge starting dose based on degree of severity, body weight, male/female, etc.  
 

The purpose of pulsing is to elicit some amount of herxing, but to keep it tolerable. Herxing isn't bad…it's actually an indication that the antibiotic is reaching its target. Superperro is right, though…most people need some form of anti-inflam help in the beginning, because if the tissues get too inflammed from herxing, it's counterproductive and prevents the antibiotic from getting to the joints.

Some people do very well on daily dosing and some people never notice a herx, so all of this can be a bit paradoxical. 😕

 
The brand name of minocycline is called, “Minocin.” It's made by Wyeth, but Wyeth gave distribution rights to a dermatological company, Triax, that started selling Minocin in funky zit packs and inflating the cost ridiculously. If Dr T has stated “Minocin DAW” on your script, this means he wants you to only have the brand and that it should be “dispensed as written” with no substitutions. Minocin comes in a two-toned green capsule with one translucent end so you should be able to see the little pellets inside. Some insurances won't approve the brand, because it's so costly, but others will if the physician won't accept substitutions with generics. There are lots of generics out there that seem to work fine for people and others that don't work so well. It's hard to know why this is the case, but it could be due to degree of bio-availability in the generic, fillers or dyes people might be allergic to, etc. Generics come in powdered form in a capsule or a tablet form. For people who want the brand name, but can't get it here in the US due to the exorbitant cost, it is ordered from Canada. When Wyeth gave distribution rights to Triax in the US, it also gave them to Stiefel in Canada. So, it's exactly the same pelleted medication, but in just a different colored capsule (indigo and orange two-toned capsule). I buy 100 100mg caps for approax $165 and these last me for 4 months, as I'm a pulser.

 
Just a heads up…if you're taking your mino at night, be sure to take it a good 1.5 or 2 hours before bed and wash it down with a full glass of water. A stuck capsule or reflux can really cause a bad case of esophageal burning. 😉 Also, try to take on an empty stomach, at least an hour or so after eating and always at least 2 hours away from any supps you're taking. Minerals of any kind (supps or dairy, for example) bind to the tetracyclines and render the antibiotic useless in the gut.

Also, are you taking probiotics? These are really important to take daily to keep the gut flora/fauna in balance. Antibiotics can cause an overgrowth of candida in the gut, which can lead to a host of probs. A decent brand and taking a good amount per day should help to prevent any issues, but once they begin they can be difficult to eradicate. 

 
Hope this helps, David. Lots to take in at the beginning, but it all become second nature very quickly. 

 
Peace, Maz

 

[linda]

Superperro, I agree that NSAIDS are much safer than mtx.I did have a concern tho, in that you are using 2 at the same time. I thought there were issues with clotting and bleeding (especially in the gut) with all NSAIDS, and that taking 2 was contraindicated because of this. Maybe I'm thinking of something else, not sure.

[lynnie_sydney]

David – I have copied and pasted a link to info on NSAIDS below. And I have pasted a para that warns about combining MTX with NSAIDS. You might want to check with your Doc's office or local pharmacist about substituting the MTX with an NSAID becuase I'm not sure how long the MTX stays in the body. Lynnie

Combining NSAIDs with methotrexate (Rheumatrex, Trexall) may reduce the elimination of methotrexate from the body and result in increased side effects from methotrexate http://www.medicinenet.com/nonsteroidal_antiinflammatory_drugs/page2.htm

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[superperroRA]

Linda, I don't have a rheumatologist, because the last one I had was the worst doctor I've had in my entire life. (Dr. T of Boston)

I got the prescription for Celebrex 200 mg bid from Dr. S in Iowa. I decided that although this dose is standard, it is too risky for strokes, so I would only take 100 mg bid at most.

After taking Celebrex 100 mg bid  as my only NSAID for about 4 months, I decided it was working at about a B+ level for me so I started looking for a complement. My general physician gave me a prescription for Voltaren a week ago on a trial basis. I tried it and fell in love with it.  I have been taking Voltaren 50 mg BID  and Celebrex 100 mg SID  for a few days now. I researched on the internet whether they interact; it seems they do interact, but not strongly. (50 mg BID for Voltaren is a considerd a medium to low dose, 100 mg SID Celebrex is considered a fairly low dose)

Do you think I am Okay at these low doses?. I could also rotate the Celebrex and Voltaren since they are both eliminated from the body in a few days. According to wikipedia, Voltaren has a half-life in the blood of about 2 hours, although it stays concentrated in the joints for about 8 hours. Celebrex has a half-life in the blood of about 11 hours

My GP  tests my blood for liver and kidney function every 2 months, or more frequently sometimes. I see him once a month

http://en.wikipedia.org/wiki/Celebrex
http://en.wikipedia.org/wiki/Diclofenac

PS. Linda, I know you know this, but for other readers:
SID= once a day
BID= twice a day

[linda]

superperro,

I think you should make sure your GP knows you're taking both, and discuss it with him. The scary thing about these drugs is that you could have a stomach bleed and not have any symptoms; I would think that risk is increased if taking 2 NSAIDS, even if you alternated doses. I'm not a doctor, so don't go by my advice. This is something you need to work out with your physician.

[superperroRA]

Thanks Linda. i will follow your advice and use only one NSAID at a time. I can always rotate them (for example, this month  Voltaren, next month Celebrex)

By the way, while looking for information on interactions between Voltaren and Celebrex, I learned the interesting fact that Voltaren is available in suppository form. This might be a reasonable choice for those with bad RA inflammation and in serious danger of GI bleeding

[David C]

Hi Maz

Thanks again for the info. I've watched Dr brown's video and almost done with the book by Scammell but need to go over again for missing info. So far going against all my rheumy's plan & taking things on my own really gives me tremendous pressure, worries & insecurity especially when I'm under pain and inflammation. I guess having a good AP doctor is rather important so I can avoid any misjudment. From what I understand, even Dr brown uses low dose cortisone to treat some patients in addition to AP. That's why it's challenging to weigh the benefits and timing of using some conventional drugs for the benefits of AP to work effiently in some cases. It's so tempting to just add MTX for a month when I'm in pain & discomfort. Do you ever have that kind of experience & how do you deal with it?

Lynnie, it's good to know about the info. thanks

 

God bless

david

[Maz]

[user=1184]David C[/user] wrote:

So far going against all my rheumy's plan & taking things on my own really gives me tremendous pressure, worries & insecurity especially when I'm under pain and inflammation. I guess having a good AP doctor is rather important so I can avoid any misjudment. From what I understand, even Dr brown uses low dose cortisone to treat some patients in addition to AP. That's why it's challenging to weigh the benefits and timing of using some conventional drugs for the benefits of AP to work effiently in some cases. It's so tempting to just add MTX for a month when I'm in pain & discomfort. Do you ever have that kind of experience & how do you deal with it?

Hi David,

It can be quite a balancing act in the beginning to know which is the optimal way to reduce inflammation. You're right, Dr Brown did use small amounts of prednisone to reduce the inflammatory barrier to enable the antibiotic to reach its target. These would be small spurts of 5mg (or 10mg max) to help patients thru the worst of their herxing. Most patients, by the time they got to Dr Brown, had already tried and failed on the conventional meds and had been made very sick by them, so his goal was to withdraw those meds as soon as possible.

I'm probably not the best person to ask about methotrexate or any other conventional drug, because I wasn't able to take them with Lyme disease. I have a brother with MS and so the TNF blocking drugs are contraindicated for me (they can cause an MS-like syndrome in those predisposed and Lyme can mimic MS). I also couldn't take pred or mtx or any other immune-suppressor, because with the overwhelming set of infections that comes with Lyme, one just gets sicker, enabling the infections to proliferate. So, I faced total body pain with just Advil and doing what I could to detox from the die-off and massive herxing. I'm a stay-at-home Mom and my kids are old enough to look after themselves, so this was a blessing, as well as not having to work. I don't think I could have done it otherwise. :crying:

The goal with AP is to keep the inflammation from herxing as tolerable as possible. If it becomes intolerable, it's too much. It's the inflammation which causes joint damage. So, while it's a necessary evil to go through the herxing, doing what you can to get rid of the circulating toxins in your body as quickly as possible with go a long way to relieving herx symptoms. If you can't manage this through detoxing methods alone, then using some type of anti-inflammatory will be important to you. There are lots of opinions on the best ways to do this, so I hope people like Linda and Marj will pop by to offer their insights to help you. Marg's daughter found mtx helpful in the early months and she was able to then wean off it when the worst of the herxing was over. Linda has extensive knowledge of prednisone and pretty much the full artillery of anti-inflammatory and pain medications, as she was unwell with psoriatic arthritis for many years before finding AP. These people and others here should be able to tell you what worked best for them and starting a new thread on this subject might get more people's attention.

It's never easy to go against our physician's orders, but ultimately it is your body and you must be comfortable about what you are putting into it. At least with AP you can rest a little easier knowing that once it kicks in and things start to turn around for you, it won't be a “forever” thing to have to take the other meds….and you must weigh everything against your need to function and what risks you are willing to take regarding possible joint damage until the inflammation settles down.  

Personally, it's taken 2.5 years to almost be in remission. I don't regret not taking immunosuppressives, because I don't have the worry of what harm they might have done to me…but, I do have joint damage in my knees and persistent, longterm inflammation can be damaging, too. It's not bad enough that I need joint replacements any time in the near future, but it has slowed me down and I've lost plenty of musculature, which I am trying now to rebuild. Hearing from Marg may reassure you, because her daughter didn't have to stay on methotrexate for very long and it got her through the worst in the beginning. Maybe if you PM'd her it would help?

You're in my thoughts, David, as you make the decision about what is best for you.

Peace, Maz

 

[Susan LymeRA]

David,

Sorry I have missed this post until now.  March has been a very busy month for me with three out-of-state trips.  I'm home now and catching up.

When I was first diagnosed, I rejected MTX and convinced the rheumie to let me try AP.  I did mino 100mg MWF.  I also found an integrative doctor to help me identify and treat possible causes to my RA.  That doctor saved my life.

After one year, my RA dropped from a high moderate to a weak positive.  In addition to mino, we tested for food sensitivities and cutting out dairy and soy stopped a lot of my pain.  We tested for heavy metals.  I was 3 times the highest acceptable limit of lead and highly elevated in mercury.  I had my last 3 amalgams removed.  That stopped my jaw pain.

Detox and rebuilding my body were the primary focus of my doctor. 

At this point, I found my current doctor.  She is a rheumatologist who believes in infectious causes to RA.  She tested and found h. pylori, mycoplasma, chlamydia, babesia, Qfever, EBV, HHV-6, tapeworm and of course, lyme.  She switched me from mino to doxy because I was having lupus like flares and did not test positive for lupus.  Mino can cause this.

For 1 yr, we worked with different abx combos, she also detoxed and supplemented.  I did great but we could not eliminate the inflammation.  It took her another 7 months to convince me to try Enbrel.  I didn't want it, but she said #1=it will be temporary  #2-it will stop additional joint damage (I lost the cartilage in the left wrist)

I found that at the lowest dose of 2 shots per week, I would catch things.  Tonsilitis twice, parvovirus and then a really nasty cold.  So, currently I am on 1 shot per week and doing incredibly well.  This appears to be my just right dose.

I have no pain.  I have no swelling.  I run, I play, I ride my horse.  (I was doing all that before the Enbrel, but a little slower)

Today, looking back, I would recommend the Enbrel as long as your doctor is up on the antibiotic treatment.  No way would I want to just suppress my immune system.  I have no experience with methotrexate.  None of the rheumatoid drugs are without really bad possible side effects. 

My doctor does not use the immune suppressors unless she must and in my case, she felt she must.  I wish I had used it sooner to save my left wrist.  I am left handed.

All the same, that wrist is 80% functional and in no pain unless I overextend it.  It is weak of course, and I ride horses so it is probably just a matter of time before a horse pulls back on me and snaps the wrist.  sigh…………

So, if your doctor is saavy on AP and still feels you should use the immune suppressor, do so.  If he is not up on the AP, try the AP first.  Obviously, AP is getting to the source of the matter whereas biologics and DMARDS are just suppressing the symptoms.

Susan

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