Posted on 11/07/2008 4:31:52 AM PST by incredulous joe
Greetings FRiends,
I know, I know. It's a little crazy asking for medical feedback on the web, but I always trust this community to give me unfiltered and personal experience. I suppose you could say that I am somewhat incredulous when it comes to some of the big, pharma-sponsored websites.
I realize that this is in NO WAY scientific.
My wife has been ill for the last year; extreme fatigue and soreness in her joints. It is some kind of rheumatoid arthritis. Her doctor has treated her with numerous conventional drugs; methotextrate and prednisone. She's had mixed results.
Her doctor has suggested an aggressive therapy called Remicade. It is an intravenious drip into the veins. Treatments are every 8 weeks and it is very expensive.
My wife's main concern is that once she gets on this protocol, that she will never get off of it and that we will be locked into this expensive program, whether our insurance covers it or not.
Personally, I am concerned about the long term effects of the treatment. I don't think it has been around very long. I also believe that when something seems to be too good to be true, it often is. I believe this at the business level, as well as at the cellular and metaphysical level. For now, let's just not go there ~ though your prayers are appreceated and have been in the past.
Any FReepers have any personal or family experience with the treatment or the side effects.
My wife is 43 and other wis in excellent health. Obviously, there is a great deal of emotional strain surrounding this affliction.
Let me know if you may offer any feedback.
I think Remicade is used for Crohn’s too. I have no personal knowledge of the drug, but understand your trepidation. I take an interferon (for MS) and there are always reservations one feels about the risk versus the benefit of a drug. Here’s a website with ratings from patients. Anecdotal, yes, but at least they’re first hand experiences. I imagine most of the comments come from Crohn’s patients as I think Remicade is fairly new in the treatment of RA. Hope your wife gets some relief from whatever med she chooses.
http://www.askapatient.com/viewrating.asp?drug=103772&name=REMICADE
Wow, I just took a quick glance at that page. Some of those folks have been on Remicade for 8 years. They must have been part of the “trials.”
I just wanted to add this comment, how I feel about taking a med you just aren’t sure about. What you start, you can stop. I always tell that to newly diagnosed MS patients who are afraid of the side effects of an interferon. If the side effects are too much, you have the choice to stop it. You’re not committing to a drug, for life.
Best of luck.
I hope this helps you. Good luck!
Hers’s an interesting link. The quarterback of the Jacksonville Jaguars takes Remicade (Crohn’s.)
http://livingwithcrohnsdisease.blogspot.com/2007/10/david-garrard-story-i-found-detailing.html
Don’t know about remicaide but, you might want to check out embril http://www.healthboards.com/arthritis/2252.html
Rituxan, Remicade, Embrel Kineret, Zenepax, and Orencia are all monoclonal antibody based medications, some of which are human/mouse chimeric antibodies. They locate and bind to tumor necrosis factor responsible for the inflammation of rheumatoid arthitis. They are all expensive, partly due to R&D costs, as well as marketing that I am sure everyone has seen on TV. They are effective in varying degrees, and have helped many people.
get some litmus paper.
test you wife's saliva to see if it is acid - even slightly.
If so have her take 1 level teaspoon of bicarbonate of soda in a large glass of water 1/2 hour BEFORE meals and before bedtime.
If after three of four days it alleviates the symptoms she likely has a problem with systemic candida (a severe yeast infection).
If it immediately causes severe flu-like symptoms it is almost certain she is loaded with candida and is experiencing a herxheimer reaction to a candida die-off.
Back off but reintroduce after a day or two.
Google “VSL3” a probiotic food to help repopulate the gut with the good guys.
Lurking’
ping
Mrs. kevkrom was on Remicade for Chron’s a couple of years ago (she was on 6MP before that, but had to stop for pregnancy/nursing — back on 6MP now that the critters are older). She did have an allergic reaction to a treatment (I think it was the third or fourth), however, so she basically went untreated for the Chron’s for about a year (no recurrence thankfully).
Rheumatoid Arthritis is very painful but the good news is Remecade works to keep the inflammation at low levels. Call your insurance company and see if IV treatments are covered. Both of you go to your/her doctor and ask questions about a treatment plan. It is a miracle drug for me.
Dawn,
Thanks for the feedback.
This site that you show seems to be an excellent resource. Looks like you can actually email other patients.
~ij
Well, in a sense you can go off the meds.
The onset of this RA ailment has been very quick for my wife ~ taking her from normal to very nearly being unable to walk in a matter of weeks.
She has since yo-yo’d a bit on some of the various meds (prednisone and methotextrate). I think stress and anxiety have played a great role in the onset, as well. She almost seemed to be in remission after a first round of drugs and a nice summer.
Job stress, anxiety, medical payments seemed to bring us back to square one pretty quickly.
The election of Carack the Redistributor has not helped all that much either. ;-)
Yeah, it's good to hear the good stuff. We're a nit intrepid and these kind of testimonials really help one gravitate toward the treatment in a positive way ~ which might be beneficial as to looking to it as a potential last resort.
Still ~ the long terms are an issue.
Thanks for the feedback,
~ ij
Has she been diagnosed with a blood test? I was tested for lupus, RA, Lime, and some others I don’t remember. I was finally diagnosed with Fibromyalgia. Get a second opinion before you make a decision. With Lyrica and an antidepressent, I am near normal.
Still undiagnosed RA. The doc thinks it’s sarcoidosis, though an exact diagnosis draws no bearing to the treatment ~ these ailments are all in the same zip code.
Crohn’s was one that I was praying it would NOT be.
I think that's considered a bit much. I've always seen 1/2 level teaspoon.
My experience with bicarbonate of soda is regarding Gouty arthritis.
No comment on the Candida possibility.
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