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It seems research studies are finding out that TNF blockers like Enbrel, Humira are not only blocking Tumor Nucrosis Factors which cause inflammation and damage, but are actually altering and healing the course of the disease in some people.
My doctor has recently insisted I take Enbrel while she goes after the bugs. After much resistance, I caved in and decided to embrace Enbrel and believe it is only helping me and not hurting me. I do believe the mind is a powerful tool.
I was not researching the drug (prefer not to read the horror stories, thank you). I was researching something else and up popped this article. Good news for anyone having to take these drugs.
http://www.physorg.com/news120108659.html
I also stumbled on a youtube video where a doctor said much the same thing. I blew it off at the time thinking he must be on the pharmacutical's payroll to promote their drugs……but maybe not. Here is the video for those interested.
http://www.youtube.com/watch?v=uhfGthj_K3Y
Just more good news for all of us.
Susan
Thanks so much for posting that Susan as I too, after 2 years of resistance, have followed rheumy's advise and started the Enbrel. I feel sooooo much better, it is good to hear something about TNF blockers that is not so awful. I got to the point where quality meant more than quantity. I just want us all to feel better no matter how we get there.
Sue
Hi SP,
Ah that stinky babesia. The doctor is most concerned about it. For 7 mths, she had me on ammoxy 3000mg daily and Biaxin 1000 daily. I felt great during this protocol. Don't get me wrong, I feel good now but with some minor aches and pains to remind me I have this stupid disease. On the abx, I felt like 20 yrs old and fit as a fiddle.
The abx must have just drove the babs inward because bloodtests kept coming in positive. Dr stopped the abx (except the low dose doxy which follows AP) and gave me 4 weekly IVs of an herbal concoction called MTE9. It is specific for Babs. After this I got my first negative bloodtest. Dr needs two negative bloodtests. Sorry to say the second test came in positive though borderline in the number count. I guess it is like pregnancy though. You either have it or you don't.
She didn't start me back on the MTE9 like I expected. She has had me on an intensive herbal (oral) detox protocol since January and she added Welchol to it. That is a cholestrol drug but is also useful for pulling toxins. I have very good cholestrol levels.
She has also ordered me to get my tonsils out ASAP and I have surgery scheduled 8/18/08. I am 52 and the surgeon promises it is going to hurt. Surgeon said there is a lot of scarring on my tonsils and that bacteria does hide behind the scars. I have absolutely no problem proving my bacteria load anywhere I go!
Susan
[user=86]Susan Lyme/RA[/user] wrote:
It seems research studies are finding out that TNF blockers like Enbrel, Humira are not only blocking Tumor Nucrosis Factors which cause inflammation and damage, but are actually altering and healing the course of the disease in some people.
Just more good news for all of us.
Susan
Depends on what you believe is the cause of the disease. The article claims again that the body is attacking itself by mistake. These drugs prevent the immune response which prevents the inflammation. If you believe the body is making a mistake then you may interpret this as healing the disease.
For those of us who believe it is bacterial, it is only treating a symptom, a symptom that many other less dangerous drugs can treat just as well. (msm for example) And while they all prevent inflamation in one way or another, the bacteria continues to grow and spread thru the body unhindered.
For my Mr Perfect these blockers worked for only a short time, and when they stopped working, the disease was much, much worse than when he started on them. Which indicates to us, that the disease was having a field day undetected, because the Humira and MTX hid the symptoms, until they stopped working.
We now control all the symptoms with MSM, but use the AP to work on the disease itself.
We no longer believe that symptom control is disease control.
I hope it works better for you.
Jo
Jo,
I have been on AP for 2 yrs. I am working with a rheumatologist who absolutely believes in infectious causes to RA as well as other causes. She believes in identifying and treating the causes.
For 2 yrs I worked with AP and holistic measures and have done very well but not remission and I have incurred joint damage.
It seems I have an “explosive” form of RA the likes of which she has only seen 3 or 4 cases in her 15 yrs of practice. She feels we MUST prevent damage while going after the bugs. She promises the Enbrel is only temporary.
Please read again “WHILE GOING AFTER THE BUGS”. Alternative and AP have given me back my life. No doubt, for others whose RA is less aggressive, full remission can be achieved with that alone. However, for me, it was not enough.
I trust this rheumatologist who is extremely well versed in infectious causes to A.I. disorders.
Susan
Hi Susan,
I googled
mte9 babesia
but came up empty.
Do you have a link to some info about it.How come she does not give you an anti-malarial for babesia (like mepron, malarone, lariam, artemisia, etc). Are you allergic to them (g6pd enzyme deficiency maybe?)
I recently heard of an antiprotozoal called Alinia (Nitazoxanide)
that some LLMDs think can cure babesia and is very benign. Could
you please ask your Doc if she knows anything about it, or has tried it on her patients.[user=86]Susan Lyme/RA[/user] wrote:
No doubt, for others whose RA is less aggressive, full remission can be achieved with that alone. However, for me, it was not enough.
That's a great point Susan. For some, its not possible for the disease to come back worse if a TNF blocker stops working since it was already as bad as it can get.
Also, thanks for posting those links. Very informative!
I guess since I couldn't open doors, drive, walk gingerly and with great care, personal hygiene and everyday mundane tasks were a challenge to say the least, that's a chance I am willing to take. I know it can always be worse but it was pretty bad….next step looked to be a wheelchair.
Sue
I certainly would not argue with anyone wanting to take a TNF, but as far as the article in the first post, I think that is simply in response to the FDA's recent studies into the dangers of TNF's. The docs who want to continue to use these drugs are going to jump to the defense of TNFs in order to keep people clammoring for them. JMO of course.
Susan,
May I ask if you live in the US? Which state? I find it so overwhelmingly positive that you have a rheumatologist who believes in the infectious aspect of RA! I don't mean to ask too personal of a question, just amazed that your Dr. is willing to run the infectious tests and is a Rheum. seems against the norm from stories on this board.
Wishing you all the best in your road back
Amy
DX Rheumatoid Arthritis- 3/2008, Began AP 8/2008-continued various forms of AP through present. It's long and complicated- have a question re: my protocol, just ask 🙂
Oops sorry…I had to edit cause I hit send twice somehow:doh:
DX Rheumatoid Arthritis- 3/2008, Began AP 8/2008-continued various forms of AP through present. It's long and complicated- have a question re: my protocol, just ask 🙂
Virginia. I marvel at it too. If you are anywhere close, send me pm and I will be happy to give you her name and number.
Susan
Thanks for the article, Susan, and for those who responded. I'm currently on Remicade but am hoping to add AP to my therapy soon. I'm of the opinion that some of us have just been too sick for too long, or have obligations in our lives that prevent us from being able to wait months for improvement, and so have to add biologics to our therapy. It's not an easy choice, and not the preferred choice for most of us, but it's good to know that there is more research going into how these drugs work and how to make them safer.
linda
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