Monday, February 28, 2011

Traditional Medications, Alternative Therapies and the Pressure in between.

As a result of this article flying around the 'net; these questions were asked:  Are rheum patients pressured not to take medical treatment? Have you ever read an article that sounds like it discourages medical treatment for rheumatologic conditions? Whether the alternative offered is Eastern medicine, non-prescription medicines, or dietary changes, or spiritual advice, what would you like to say to anyone who would tell patients to forgo medical treatment?  For the purpose of this exercise, I am going to focus on two areas- first message boards and second on blogs/articles.   I have been blessed in that even my most "medication resistant" family member is not only supportive of my own treatment but also takes the time to look into and understand what treatments I am undergoing and considering.  When you consider that they prefer not to even take an aspirin- that says a lot. 

 In the over five years since I have been diagnosed, I have heard countless "remedies" and "cures".  I have been told that if I only: quit smoking, lost weight, exercised more, worked less, slept more, ate better, eliminated this food, added that supplement- you name it, I have probably heard it- I would be just fine.   Sadly- more often than not- I have heard many of these things on message boards meant for patients with RA.   Now- I have been very vocal about the fact that I feel that "our"  message boards are being misused but I feel that this goes beyond that.    I see various supplements pushed and pushed (garlic, fish oil, and the old stand by Glucosamin and Chondroitin) and I see everything from eliminating nightshade veggies to Gluten Free/Dairy Free/Sugar Free diets claimed to be the end all and be all to "cure" RA.  The worst part, in my opinion, is that if you dare disagree, proponents feel it is okay to blatantly attack you for having a difference of opinion.   This does NOT help anyone.  This and some other things that I have enumerated here before are the reasons I eschew the message boards for the most part. 

Now on to the blogs/articles.  I am sure we have ALL seen either articles and posts such as the original one listed here before.  We have seen blogs and articles that essentially say that we are "weak" for turning to traditional medicine and that if we only lived holistically or followed a naturopathic way of life, or went to a chiropractor on an regular basis- our disease would disappear.  Some are written by patients, some are written by practitioners but they all serve the same purpose and that purpose is to make us doubt our treatment, doubt our doctors and more, doubt ourselves.  I could list many but to be honest- these make my blood boil and I refuse to give them space or acknowledgement on MY blog.  

To sum it up, I feel that these posts, these articles and these "discussions" are blatantly dangerous if we don't take action to protect ourselves from both the well intentioned and the "quack" information out there.  Consider this- if I had a child who had JA and actually listened to this "doctor" who authored the original article, I would be subjecting my child to a tremendous amount of needless pain and suffering.  Would that not be at best benign neglect and at worst child endangerment?  If I were to personally toss all of my medications and go off my infusions and just change the way I eat- would I not be setting my body up for a flare but also for rapid and permanent damage to my joints?  How would either of those things be acting responsibly?  So what can you do?  Here are my suggestions: 

1- RESEARCH for yourself.  Google is your friend.  I don't care WHO the poster is, I don't care how much education or success they have had- you must research for yourself and make your own decisions. 

2- NEVER, ever, undertake any drastic change in your treatment without partnering with your medical professional.   If, God forbid, you have an adverse reaction your doctor must know what you have been doing in order to treat your properly. 

3- If you are interested in a "treatment"- by all means, learn what you must and give it a shot.   I would never suggest dismissing anything that could potentially help out of hand, but remember that just because it works for me or works for you, it will not work for everyone. 

There is a terrific byline to an ad out there right now that says something to the effect of  "Your RA is not MY RA."  or "MY RA is not YOUR RA."  We are all different physiologically and since they cannot even figure out  WHY we get this disease, I have very few hopes that we will see a miracle cure anytime in the next few years.  What I try to keep in mind is that while we are all in this journey together, each of us really does have our own individual challenges with our disease.  That means that though I will happily share my successes and failures with different therapies if asked- I try to not "push" one treatment over another.  When I  need a firm example to use as a reminder, I just look to the "MTX Wars" as an example.  For some it's a miracle, for some a miracle until your body betrays you (yep, that's me), for some it does absolutely nothing and for some, pure poison.   It serves to keep me from shouting from the rooftops about my successes and it also helps me to keep not only my failures, but when someone else is pushing a particular therapy, in perspective.  All RA is not the same, it doesn't respond the same to treatments, it is not triggered by the same triggers.   Since that commercial began to air  I use that as a "thank you, I will look into it, but" reply to all of the "well meaning" advice that comes my way.  

Here's hoping you find the therapy that works for YOU! 


Dave said...

I can't read this the font colour is too faint

Jules said...

Sorry Dave- I am not sure what happened since my previous post-but I changed the template because that just looked silly!

Wren said...

Hi Jules...

Well said. As someone who's tried all sorts of "remedies" for RA over about 20 years, I've come to the conclusion that Western medicine works the best (for me) in keeping my RA under control. NOT cured. Since there is no cure for RA yet, it sets my teeth on edge to see ads for products that claim to "cure" it. Such products are frauds, pure and simple. And the people who make them prey on our desperation for immediate and lasting relief.

That said, that we all have different versions of RA is absolutely true. While eliminating nightshade plants (tomatoes, eggplant, potatoes) from my diet had absolutely no effect on my particular RA, eliminating those foods HAS helped others. Same for the elimination of other things, such as gluten and sugar. I know I feel better all over when I cut my carbohydrate (glucose) intake to a bare minimum. And while I haven't tried eliminating gluten, yet, I wouldn't be surprised if it helped. Nor would I be surprised if it didn't. Such is the nature of this weird disease.

Thanks for the great post. The best advice that I got from it is that we should all be careful, do plenty of research, and never condemn what works. If what works is MTX or Enbrel or a Paleo diet free of nightshade plants, then by all means... ;o)

Best wishes and warm hugs to you. Walk in peace.

Young Wife said...

Great post! My DH has psoriatic arthritis, and in addition to several arthritis medications, he has had good results from acupuncture and chiropractic care. I agree with you. Each case is different, and you have to figure out what works for you.

Pain Free...One Day said...

Great post!!! I say if the various alternatives therapies, special diets, and supplements help someone then that's wonderful for them and I am glad for them.

However, I feel that since this disease takes such a different course in each person, we all need to seek our own medical paths & research is key because we need to make informed decisions.

I really enjoy your writing.

Jules said...

Thanks everyone. I wish there was a magic cure- because I would be right there at the front of the line-lol. Until then, we can only share what we are doing and how it affects us in hopes that someone else can benefit!