Update and lessons learned from Joe M

[Joe M]

Hi everyone,

I don’t visit the board very often anymore, but recently I received a couple PM’s asking about my wife’s health and treatments, so I thought I’d give a general update.

Background: RA hits wife like a truck in 2002. Lived in denial for half a year waiting for it to go away. Found Dr. Brown’s book and went to see Dr. S in Iowa, a short trip for us. Spent a year on AP with good days and bad. Towards the end of the year on AP, there were more bad days than good. Tried at-home IV’s for a boost, switching to brand mino, all the suggested adjustments. Finally decided quality of life was more important that quantity of life, especially raising two young daughters. A short prednisone taper knocked out the flare while she started Humira. After pred taper, we were cautiously waiting for the RA to return, but it never did. Now, ten years later, after her last checkup a couple months ago, there is still no radiographic damage to her joints, she has never had an infection worse than the common cold, and most days we forget she has/had RA. It does start to creep back if she forgets to inject on a regular basis, but we are also approaching 50 now and some aches and pains are simply part of life.

Whenever people ask me about how she is doing and my opinions on the various treatments, here is what I think are the key points:
1. The newer biologics (Enbrel, Humira, etc) are NOT conventional RA drugs. The conventional RA drugs, like methotrexate and plaquenil, were borrowed from other diseases. The biologics were developed specifically for auto-immune diseases and target only one out of millions of proteins in the joints. They are cutting edge technology. I compare the biologics to the smart bombs we have now, as opposed to something like methotrexate which is like carpet bombing.
2. The fear of these new biologics is unwarranted. Your chance of getting some weird infection that kills you is less than your odds of dying in a car crash today. Every year people die from taking Tylenol, aspirin, and other seemingly harmless drugs. Everything in life is a risk calculation.
3. It is a personal decision regarding how much pain someone is willing to put up with. My only point here is that with all the treatments now available for RA and similar diseases, nobody has to suffer on a daily basis like they did 20-30 years ago.
4. Once I came to the realization that the cause of RA will probably never be found, as I believe it is a combination of genetic susceptibility combined with certain environmental and mental factors, it was easier to make the decision to treat the symptoms. The decision is different for everyone, but for us quality of life was the top priority.
5. The AP vs Biologic debate does not have to be contentious. Everyone is free to pick the treatment that they are comfortable with. But I see synergy. The biologics work. The statistics do not lie. Why not start analyzing the similarities between the actions of minocycline and enbrel, for example? By finding commonalities, better treatments can be developed. I never saw it as an us vs. them thing, which many seem to. Whatever works is my mantra.

Best wishes to all,
Joe

[lemons]

I agree with some of your views in your post. Only last week I by chance met another woman my age with RA. She had never heard of treating this problem with antibiotics and from the day of diagnosis has been treated with methotrexate and then biologics. The only difference between us is I look healthy and she looks like a bag of spanners. Im happy with my choice of drugs and I think I am doing really well on them and she would probably say the same , although Im relatively pain free and she isnt. As the saying goes, one mans meat is another mans poison.

[marypart]

Just to chime in here…

My son’s rheumatologist was and continues to be perfectly willing to use both strategies. Her go-to strategy is to first treat the infection and get the infectious load down as far as possible. She was also willing to use Biologics and did try Embrel for my son about 1 year into treatment. He did not respond in any way, and at any rate he couldn’t tolerate the shots which caused inflammation around the injection site, so he only had three or four shots.

Another story is my brother, in his 50’s with 30 years of serious arthritis, almost 10 years on Embrel. He did about one year of antibiotic treatment a few years ago, all along continuing with the Embrel shots. He also has Crohn’s, and he feels that everything improved from the AP treatment. He’s planning to go back for more when he has the time and the money.

So… yeah not only can you go one way or the other, you can try both at the same time if you can find a doctor who is willing. We’re especially lucky because we have a rheumatologist who is also an LLMD.

[Woods1977]

Biologics vs. AP is a very personal decision and everyone is different. Although I’m quite defensive about AP therapy, I also remind myself that RA is the enemy here- peroid. If someone is getting relief from the use of biologics with no nasty side effects, then who the hell am I to judge?

Although I have to say, it’s very dishardening to hear you say we’ll likely never find out what causes RA. 🙁
Your wife has RA, but to say that to a person with RA really stings, although I’m sure it wasn’t your intent whatsoever.

Regardless, I AM glad to hear your wife is doing well 10 years out- that’s a HUGE deal for anyone with RA, regardless of the treatment option.

[Author]

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