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    Old 06-08-2005, 08:04 AM   #1
    bluelakelady
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    Question blue needs your knowledge of methotrexate and enberol(sp?)

    gentle good morning to you all,
    i was wondering if any of you have knowledge of these two drugs in use for rheumatoid arthritis? i have not started any treatment yet. i like to take my time and think it thru. the pain i can do for now. it is the knowledge that i am eating myself that spurs me to ask for your input. when the time comes i want one of those cool wheelchairs with hand controls, or maybe a lark.
    tk? you out there girlfriend? i know you have a wealth of information stored away in that lovely brain of yours.
    thank you. you are all angels of love, mercy and compassion.
    peace,
    bluelakelady
    ps. i sure miss goldenwings.

     
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    Old 06-08-2005, 10:19 AM   #2
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    Re: blue needs your knowledge of methotrexate and enberol(sp?)

    Blue.. I took mtx for a while for my lupus joint pain, I will pass on the knowledge that I have.

    MTX belongs to a group of disease-modifying antirhuematic drugs (DMARDS). DMARDS may affect the activity of RA more than such drugs as aspirin and NSAIDS, but you may take these drugs along with the MTX and/or low doses of prednisone.

    MTX is a chemotherapy drug but used for RA and joint pain is used in much smaller doses. It is often the first drug prescribed and can be used in combination with other DMARDS.

    It comes in little pills or injections. The little pills are 2.5milligrams in strentgh and you take as many as the dose the Dr. prescribes for you. You take MTX ONLY ONCE A WEEK, you pick a day (for instance I picked sat. because it was the easiest day for me to remember because of my schedule at that time) and you take the full dose on that day. If you have a little trouble taking it at first you may split the dose over a 24hr period.

    Here is where some drs. differ. Every dr. will tell you , you have to take folic acid (1mg) when taking MTX. My doc just wrote me a prescription for that amount It cost somewhere around a dollar for a whole month. The disagreement comes in that most drs. tell you and the literature tells you not to take folic acid on the day of the MTX. In other words you take the folic acid everyday but the day you take the MTX. Methotrexate depletes your folic acid and you need folic acid for cell growth. Follow what your dr says, because some people have said their dr told them to take folic acid on the day of MTX as well as other days.

    Now some of the side effects: upset stomach, nausea, vomiting, loss of appetite (of course didn't happen to me darn it) diarrhea or mouth sores. The less common side effects are numerous, headaches, dizziness, skin rashes, sensitivity to the sun and the list goes on.

    I will tell you my side effects and why I can no longer take it, but let me say it does work and I wish I could still be taking it. The weirdest side effect I had was bruising, I bruise easy anyway, but this was my toenails a few of them just turned purple and got really gross and then cleared up on its own. That did not stop me from taking MTX though. What stopped me was a liver enzyme elevated because of the drug which can happen and when it does you feel extremely bad, extremely fatigued and your joints stiffen and hurt worse. At least that is what it did to me. I took it for about 9mo.

    When you first start taking the drug you will have blood tests every week for about 5wks. then once a month for several months and then as the dr. orders. I had one every visit. For me all my blood tests came out great and I would keep my 3mo appt with the doc and boom it hit my liver. As soon as I was off the MTX my liver started to clear up. PLEASE DO NOT FAIL TO GET YOUR BLOOD WORK DONE ON TIME!

    Just a few other things, you should not drink alcohol on MTX. I couldn't drink anything at anytime, it made me sick. You are also more susceptible to catching other things like colds and flu and measles and mumps and etc. while on MTX.

    Well Blue I hope I helped some, I'm sure TK will come up with much better info than me. I worried an researched when I was to take it, but in the long run I was glad I did, even though I had to give it up. Check out the lupus and arthritis boards they have some back threads with MTX info.

    Good Luck and keep us posted

    Glojer
    ps. I think goldenwings takes mtx or did and had some good info about it on some past threads on the lupus board. I hope she is doing great and we hear some news soon.

     
    Old 06-08-2005, 11:00 AM   #3
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    Re: blue needs your knowledge of methotrexate and enberol(sp?)

    big thanks glojer!
    i do not drink. never really atracted me. i still have time to think about this. thank you so much for the info. i am still juggling the potential damage to my body verses the easing of pain. i am uncomfortable with the idea of suppressing my immune system and the possible damage to my very healthy liver.
    deep inside i feel it will not be my drug of choice for r.a. still, i want to make and informed choice. thank you again girfriend!
    peace,
    bluelakelady
    ps. i will check out the lupus site. thanks.

     
    Old 06-08-2005, 12:50 PM   #4
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    Re: blue needs your knowledge of methotrexate and enberol(sp?)

    Blue,

    The only thing that pops into my head is Remicaid and Humiara (sp?). I'm trying to think who has RA here on the FM board besides goldenwings. I know there is someone else but the name isn't coming up. I THINK I know someone on the Pain Management board who has RA, I can check see if they would come to this board and answer your thread.

    I have a friend who I used to wait on while at "the Barrel" and she has RA. She's older than us. She came out to my house with one of my ex-coworkers awhile ago and we talked about Remicaid. She said it really made a difference. Only thing is, that it's give by IV, you have to go to the doctors to have it administered. But she did say that it made a big difference in her joint pain.

    Tell ya what, I'll do a little detective work and see if I can find out any specifics about some of these meds for you. Give me a little bit and I'll post back.

    DO NOT compromise your health because you resist medication. The pain of RA CAN be controlled. And you know what? Medical pros are closer to finding a cure for RA than they are to finding a cure for FM. At least with RA you know there are meds out there developed especially for the pain and to stop the progression. RA is much more treatable. The only thing is of course it IS more progressive as far as your joints, so get some Glucosimine Chondroiton, Calcium, and Folic Acid. And you already know that having FM is going to be a bumpy road for you when your FM flares. I think Huimara is the new med that helps stop the progession of further damage to your joints. The only side effect that my friend had with Remicaid was a little discomfort as far as nausea for awhile. I will be happy to call her and ask her what regimine she's using today if you'd like me to.

    Hey and don't give into the wheel chair yet! Lots of folks with RA walk around. You may however need a flashy cane! LOL

    Love ya, and as the great Gov of your state once said: "I'll be back!"
    tk
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    Last edited by tkgoodspirit; 06-08-2005 at 12:59 PM.

     
    Old 06-08-2005, 03:42 PM   #5
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    Re: blue needs your knowledge of methotrexate and enberol(sp?)

    You are quite welcome Blue and I applaud your resolve to weigh the evidence and think it over. I spent a couple weeks myself thinking and searching, but my immune system is already attacking me with the lupus, so I gave it a shot. There are so many drugs out there now you are wise to check them all out. I am on nothing now for the joint pain, but will see my rhuemy on June14th and like you, will be searching for the right meds. Hopefully by then you will have some great info to share with me. Funny thing my RA bloodtests are not positive, it is just the lupus and fm causing my joint pain. RA can be alot more serious so I will keep a good thought for you and hope for the best.

    Here's hoping for pain free days for everyone!
    Glojer

     
    Old 06-08-2005, 05:20 PM   #6
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    Re: blue needs your knowledge of methotrexate and enberol(sp?)

    I take methotrexate for my rheumatoid arthritis. My rheumie just increased my dosage by 30% to see if it gives me more pain relief.

    My stomach does hurt for the first 24 hours with some nausea. I do think it makes me more tired maybe - hard to tell since I am always tired. But it HAS helped with the joint pain - more than anything else I have tried. I do get my blood work done often and take folic acid every day.
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    Old 06-08-2005, 07:05 PM   #7
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    Re: blue needs your knowledge of methotrexate and enberol(sp?)

    Hey Blue:

    I managed to muster up information about the most popular treatment methods for RA. Of course you know this will probably be a "double" post (I hope ) because I want to give you as much info as I can besides simply posting a list of meds. You ready? Here goes:

    First, here's my usual "disclaminer"! The following info has been gathered from various sources, none of the info is copywrite protected. What is listed here, is meant to be shared. I have paraphrased or added personal comments (in italics) where I felt necessary.

    Rheumatoid Arthritis

    Rheumatoid Arthritis (RA) is a chronic, inflammatory disease mainly characterized by inflammation of the lining, or synovium, of the joints. Rheumatoid Arthritis is considered to be an autoimmune disease - like Crohn’s Disease, Lupus, Multiple Sclerosis and other ailments.I'm curious to know if these "other ailments" could include FM. ??? For reasons that are not yet clear, in autoimmune diseases the immune system loses its ability to tell the difference between foreign substances (antigens) and its own cells and tissues. The immune system then makes antibodies directed against the "self." These antibodies, called "auto-antibodies," react with the "self" antigens to form immune complexes. The immune complexes build up in the tissues and can cause inflammation, injury to tissues, and pain.Normally, our body's immune system will defend itself against an infection (foriegn substance) although when our immune system becomes "confused" the defense antibodies keep building and building until they have nowhere to go, thereby resulting in swelling. Acting like a an over inflated tire, causing it to swell beyond it's capacity. Any type of abnormal "overgrowth" within our body's mess with the natural process of how our internal "defense mechanism" works to protects us. An antibody known as a rheumatoid factor is typically elevated and is typcially the indicator of the disease (though approximately 20 percent of people with RA will have a negative rheumatoid factor test and some people who don’t have RA will test positive.) As most of us know, the RH Factor is determined through a blood test. Most of us with FM have had this test done, most likely more than once.

    Rheumatoid Arthritis affects about 1%of the population, and can affect anyone, including children (Juvenile Rheumatoid Arthritis), although onset usually occurs between 30 and 50 years of age and 70% of those with RA are women. The reason women are more likely to suffer from RA (and most other auto-immune conditions) is not clear, though it appears that hormones like cortisol, progesterone, and estrogen are the most likely causes. I wonder if this could be one of the reasons that more women than men have FM, MS and Lupus?

    There are two basic types of treatments for Rheumatoid Arthritis: those aimed at the underlying auto-immune disease; and those used to relieve pain and inflammation. Treatments aimed at the underlying auto-immune disease include the DMARD medications (disease-modifying antirheumatic drugs) such as the antimalarial drug Plaquenil etc. (Hydroxychloroquine), as well as a new class of RA drugs known as biologic response modifiers such as Enbrel (Etanercept) and Remicade (Infliximab). Rheumatoid Arthritis pain and inflammation relief treatments include nonsteroidal anti-inflammatory drugs (NSAID's) like the COX-2 med Celebrex (Celecoxib) and corticosteroids like Deltasone etc. (Prednisone). Celebrex has been suggested for short term use given the recent FDA warnings about this type of med (Cox2 Inhibitors). IMO, I would talk to your doctor before using this specific anti-inflammatory. There ARE many other anti-inflammatory meds out there that are safer. I use ARTHOTEC for inflammation and it works well.

    A couple of novel treatment approaches also seem able to help some individuals with Rheumatoid Arthritis. Antibiotic Therapy is based on the theory that inflammatory rheumatic diseases such as rheumatoid arthritis, scleroderma, lupus, juvenile rheumatoid arthritis, polymyositis, ankylosing spondylitis, etc. have an infectious cause, namely mycoplasma and other bacterial L forms - primitive bacteria like Chlamydia, Brucella, Borrelia, etc.. Notice how some of these bacterial infections have popped up in people with Fibromyalgia. Using low dose antibiotics, particularly from the tetracycline family, the disease is attacked at its source. Since basic tetracycline does not get into joint fluid in high levels, doctors usually prescribe tetracycline derivatives such as minocycline and doxycycline, which accumulate in high levels in joint fluid. The course of therapy usually begins with a series of daily intravenous antibiotics for five to seven days. After the initial daily series, IV's may be administered weekly, every other week or as the physician determines for the individual patient. The IV's are continued until all lab figures return to normal, at which point oral antibiotics are taken. This is also the method typically used to treat Mono, which, again, seems to a common infection that many of us with FM have encountered at one time or another in our lives.

    Another interesting treatment approach for RA involves a gluten-free diet. Blue, I thought that this piece of info about diet would interest you, as well as other with RA. Also, it is this type of diet that has been recommened for FM patients. See a connection here? Several studies have found that some individuals with Rheumatoid Arthritis benefit from a gluten-free diet. Gluten is a protein found in grains like wheat, rye and oats. Although the exact connection between diet and autoimmune conditions like RA is not understood, clinical observation has long known that inflammation of the gut is frequently associated with inflammation of the joints and vice versa. Some researchers now believe that exposure to certain allergens like gluten and another kind of dietary protein called “lectin”, may actually trigger autoimmune disorders like RA in individuals with pre-existing genetic susceptibly.

    CONTINUED ON NEXT POST:

     
    Old 06-08-2005, 07:07 PM   #8
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    Re: blue needs your knowledge of methotrexate and enberol(sp?)

    CONTINUED FROM PREVIOUS POST:

    Here is the list of information about the most popular treatments for RA.

    Plaquenil etc. (Hydroxychloroquine)

    Plaquenil etc. (Hydroxychloroquine) is an anti-malarial drug that is also helpful for rheumatic diseases such as Lupus and Rheumatoid Arthritis. The use of anti-malarials for rheumatic diseases began in 1890, when European doctors who prescribed quinine for malaria noticed a positive effect in patients with systemic lupus erythematosus (SLE). SLE is the type of Lupus that is most debilitating. This is the type that causes the most damage to the major internal organs, like the kidneys. In the 1940’s, arthritis patients who took a new synthetic anti-malaria pill called Chloroquine reported reduced symptoms. Unfortunately, serious eye problems related to the size of the daily dosage limited Chloroquine’s use. In the 1960’s Plaquenil (Hydroxychloroquine) was introduced, and it has been shown to have less potential than Chloroquine to cause retinal toxicity. However appropriate monitoring of the eye by a medical eye specialist familiar with anti-malarial side-effects is essential. How anti-malarials work for arthritic diseases is not completely understood, though they may act to disrupt the autoimmune reaction which mistakenly targets the cells, tissues, and organs of a person's own body. Compared to other disease-modifying antirheumatic drugs (DMARDs) DMARDs were mentioned earlier in this post. , Hydroxychloroquine does not create significant liver toxicity and doesn't require frequent blood monitoring. I think this specific characteristic of Plaquenil is particularily important, as so many meds we take to reduce inflammation are potentionally dangerous to our livers. Unfortunately, its overall effects also appear to be less dramatic, and it is usually recommended for early, mild to moderate RA. Additionally, it is often combined with other DMARD drugs like Methotrexate to increase its effectiveness.

    Remicade (Infliximab)

    Remicade (Infliximab) is one of a new class of rheumatoid arthritis (RA) drugs known as biologic response modifiers (also known as BRM's or biologic agents). Approved by the U.S. FDA in November 1999, Infliximab works by targeting immune system chemicals known as cytokines, which are proteins similar to hormones and which cause the inflammation and joint destruction seen in RA.If you will remember my recent thread about research that classifies FM as a "DISEASE" rather than a "SYNDROME", cytokines are the proteins that "attack" or "poison" our CNS through spinal fluid which destroys our neurons and allows the transmission of pain to flow freely into our system. These specific protiens are only one kind of many other protiens that are damaging to the CNS of people with FM. ( Refer back to my thread about FM being classified as a Disease) See another connection here? Infliximab, and another BRM called Etanercept, block a specific type of cytokine called “tumor necrosis factor” or “TNF” (another BRM – Anakinra- targets another cytokine called Interleukin-1 or IL-1). TNF is a cell protein that acts as a "chemical messenger" causing inflammation and tissue damage. Usually, TNF is a natural part of the immune system’s attempt to fight off infections. However, in RA patients, there is a persistent activation of the immune system, which leads to an overabundance of proteins like TNF that create structural damage and inflammation.

    Remicade is given as an infusion over a two hour period. After the first three infusions, most patients require treatment every eight weeks. Infliximab is usually used in combination with Methotrexate.

    NOTE: October 2004. Centocor Inc., the manufacturer of Remicade (Infliximab) has sent out a letter to doctors informing them that data from Remicade studies show a sixfold lymphoma increase among RA and Crohn's Disease patients who are taking the drug. However, the risk to patients taking Remicade appears to be quite small. The studies suggest that the combined population of RA and Crohn's Disease patients taking Remicade will have 12 cases of lymphoma for every 10,000 patients taking the drug for one year. Among arthritis patients alone, there would be seven lymphoma cases for every 10,000 patients taking Remicade for one year. Moreover, people with RA and Crohn's disease are already at elevated risk of lymphoma compared with healthy individuals. I would simply talk to your doctor about this risk factor, Blue. This is the current method of treatment that my friend with RA is using and she has told me that it is working well for her, with minimal side effects.

    Enbrel (Etanercept) Here's the info about Enbrel, Blue, that you originally inquired about in your thread.

    Enbrel (Etanercept) is the first in a new class of rheumatoid arthritis (RA) drugs known as biologic response modifiers (also known as BRM's or biologic agents). Approved by the U.S. FDA in November 1998, Etanercept works by targeting immune system chemicals known as cytokines, which are proteins similar to hormones and which cause the inflammation and joint destruction seen in RA.

    Etanercept, and another BRM called Infliximab (Remicade), block a specific type of cytokine called “tumor necrosis factor” or “TNF” (another BRM – Anakinra- targets another cytokine called Interleukin-1 or IL-1). TNF is a cell protein that acts as a "chemical messenger" causing inflammation and tissue damage. Usually, TNF is a natural part of the immune system’s attempt to fight off infections. However, in RA patients, there is a persistent activation of the immune system, which leads to an overabundance of proteins like TNF that create structural damage and inflammation. Data seems to show that 20-40% of RA patients are non-responders to TNF blocking agents like Enbrel. You notice here that Enbrel is very similar to Remicade. It seems that Enbrel works against the same damaging protiens that Remicade does. Enbrel is given by injection. Your doctor prescribes it for you and it comes in prefilled/premesured syringes. You are taught how to self-inject yourself with the medication and how often.

    Okay! There ya go Blue. There is another medication out there: HUMIRA. I can get info for you on that. It's a new medication.

    I also know that you will see the similarities between how RA affects us in many similar ways that Fibro seems to affect us.

    I hope this was helpful to you. I also found info about different methods to treat RA that were rated by RA patients themselves. One specific one was HydroTherapy, Saunas and Steam Baths.

    I'll find out about Humira and get back to you about that. I'll also post more of the preferred treatments (homeopathic) that are rated by RA patients.

    Love you,
    tk
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    Old 06-08-2005, 09:31 PM   #9
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    Re: blue needs your knowledge of methotrexate and enberol(sp?)

    wow! thanks teekers. i knew you would gift me with lot's to absorb. i cannot take anti inflamatories. probably why i felt this before the doctor even knew or suspected. and yes i have been checked now 4 times for ra, lupus and all those other goodies.
    i am leaning toward the enbrel. i know how to poke myself. so far it seems the least invasive of the western meds to my body. the thought of supressing my immune system does not turn me on at all. building it up makes more sense, while giving my body something to munch on besides me. i will be most interested in what you find on the natural paths of healing.
    as you know i do the heated pool therapy, the hot tub (yum!) and moist heat packs with massage. so, it sounds like i am heading in the right direction already, giggle. a more natural approach. yea, it is trippy how fibro and this seem to be walking along holding hands. remember when a kiss from mommy made anything all better?
    thank you so much girlfriend. i know it took you hours to compile this for me. i will print out your reply and read it again, as well as take it to my doc next time. she loves learning too.
    i had a doctor ask me one time how i could be on so little pain med and be so happy. my reply, attitude, meditation and choice. i already have some very cool hand made friends (canes) who help me on my "tipsy" days. i think it would be fun to have a motorized set of wheels too. i could dress it up in pretty purples with streamers and balloons and really give the neighborhood a chuckle or two.
    get yourself some well earned rest my dear friend. thank you again for all your efforts. you my dear are a peach!!
    love you,
    bluelakelady

     
    Old 06-08-2005, 09:53 PM   #10
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    Re: blue needs your knowledge of methotrexate and enberol(sp?)

    Quote:
    Originally Posted by bluelakelady
    wow! thanks teekers. i knew you would gift me with lot's to absorb. i cannot take anti inflamatories. probably why i felt this before the doctor even knew or suspected. and yes i have been checked now 4 times for ra, lupus and all those other goodies.
    i am leaning toward the enbrel. i know how to poke myself. so far it seems the least invasive of the western meds to my body. the thought of supressing my immune system does not turn me on at all. building it up makes more sense, while giving my body something to munch on besides me. i will be most interested in what you find on the natural paths of healing.
    as you know i do the heated pool therapy, the hot tub (yum!) and moist heat packs with massage. so, it sounds like i am heading in the right direction already, giggle. a more natural approach. yea, it is trippy how fibro and this seem to be walking along holding hands. remember when a kiss from mommy made anything all better?
    thank you so much girlfriend. i know it took you hours to compile this for me. i will print out your reply and read it again, as well as take it to my doc next time. she loves learning too.
    i had a doctor ask me one time how i could be on so little pain med and be so happy. my reply, attitude, meditation and choice. i already have some very cool hand made friends (canes) who help me on my "tipsy" days. i think it would be fun to have a motorized set of wheels too. i could dress it up in pretty purples with streamers and balloons and really give the neighborhood a chuckle or two.
    get yourself some well earned rest my dear friend. thank you again for all your efforts. you my dear are a peach!!
    love you,
    bluelakelady

    I have some info about Humira also as well as some "homeopathic" and other kinds of preffered treatments that have been rated the best by other RA patients.

    Humira is also self injected, but not as often as Enbrel.

    I'll be happy to list them for you in another post tomorrow. So keep an eye out.

    Do you have a paraffin wax hand bath? That is supposed to be really good for RA. Like for your feet, hands, or elbows. And I messed up on the Hydro therapy, it's supposed to be HydroTHERMALtherapy/Sauna-SteamBath instead of what I originally put. So, find yourself a good steambath, pour water over those rocks and sweat in the buff! Be sure to sit on a towel so you don't get someone else's butt cooties tho!

    I'll post all that for you tomorrow. I promise it will only take up one post! LOL

    Oh and about a wheelchair...Seriously, if you feel you need one for times when you want to go somewhere that involves a good deal of walking, get your doc to write you a rx for a manual wheelchair. Get a "lifetime" rx. Or it has to be "renewed" every 90 days or so. A medical supply company will come out to your house and measure you then deliver the chair. Your insurance should cover most of it, and you just make small monthly payments until the chair is yours. I know it's not as fancy as the super duper motorized ones, but until, or if you ever need one that will be used permanently, you may just want to go with the manual, as long as you have someone who can push you. I know I always have plenty of volunteers to push me around in my wheelchair. Just for the pleasure of the chance to PUSH ME AROUND! You can decorate the manual chair too. Get those paper streamers that weave around your wheels, and get those hand streamers for the grips, oh and you gotta have a horn!

    Love ya my girlfriend!
    tk
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    Last edited by tkgoodspirit; 06-08-2005 at 10:02 PM.

     
    Old 06-09-2005, 09:08 AM   #11
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    Re: blue needs your knowledge of methotrexate and enberol(sp?)

    THANK YOU SO MUCH T.K.! The info on the RA meds was great. I will be going on the 14th to my rhuemy and he is going to fill me in on all the alternatives to MTX and Plaquenil since I have had to go cold turkey off both of them. Boy do my joints and muscles hurt, but I am determined to make it till the 14th with nothing so I can research and start anew. Kind of like a detox. I don't have to research now you did it for me! I know this was on Blues question but your info is also helpful to me, what a gal!!!

    You know how much we need laughter and sometimes on this board I get such a laugh from the things we say and do. This time it was the butt cooties comment, again thanks T.K. a laugh in the morning is always great.

    Love ya!
    Glojer

     
    Old 06-09-2005, 03:45 PM   #12
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    Re: blue needs your knowledge of methotrexate and enberol(sp?)

    Hey Blue, Hey Glojer!

    Glojer, I'm so happy I could be able to help you! LOL Helping folks has always been a kind of "self healing" for me. I guess that's why I enjoyed waitressing for so long! I also worked in Nursing Home for many years. Matter of fact, it was my very first job, and I did it throughout my highschool years. I stayed at that job for 4 years until I joined the Army. Maybe that's why I didn't "fit" in the Army. My job was dealing with "Intelligence". I wasn't helping anyone, I guess, except for our government! LOL But not really, I was just an information gatherer, kinda like a little squirrel gathering nuts.

    Anyway, back to the RA topic....from what I've read, folks with RA simply cannot get around the use of steroids like Prednisone to help you get relief from the intense inflammation. I know that the word "steroids" has such a negative reaction, but IMO, and from what the research indicates, Prednisone can be a great help to you as long as it's used correctly. Don't be afraid to let it help you. Work with your doctor so that you aren't using it long term. Expect the side effects that go along with using steroids, but let it help you. I don't believe you can go through life having RA without the help of some medications that are going to cause you some discomfort. Reducing the inflammation and trying to slow the progression of this disease is going to be a critical part of your living with RA. Same with Lupus. I'm asking you, both of you, to do whatever you need to do so that you can live as comfortable as possible. I know you said, Blue, that you can't take anti-inflammatory meds. The thing is that ALL of these medications are an anti-inflammatory based med, that's the main component of the treatment for RA. Though these meds, especially the injections or the IV type meds, hopefully will not cause you as much discomfort as the oral meds. Anti-inflammatory meds used for RA are different than the ones given for typical arthritis. They are absorbed differently than through your digestive system. That makes a big 'ol difference in how your body will react to these meds. See if you can talk to other folks who have used Prednisone, their are many support groups out there for RA. Visit the Arthritis board here. I thought for sure there was an RA board, but I see there isn't. I believe that RA is of course, arthritis, but it is entirely different that the usual form of arthritis. RA affects your joints by way of your immune system, regular arthritis does not. I'm actually suprised there isn't an RA board here, since there is a Lupus and an MS board. I know that Prednisone is typically used to "jumpstart" the anti-inflammatory process, and it typically isn't used long term. But it is very effective to help as a precurser to all these other forms of treatment. It kinda get's your system "ready" for the long term treatment methods by reducing inflammation quicker so that when you are first introduced to these RA treatments, your body is more prepared to react to the treatment. I know my friend was first put on Prednisone when she was dx'd with RA. She didn't like it, the side effects are pretty intense IF you aren't careful with yourself. She wasn't on it for long, but she did say that above all the side effects, that it did help relieve the pain from the inflammation. So if your doctor wants to introduce Prednisone as treatment, think about it carefully. Find out how long you will be on it, and get your body ready for the side effects, which is typically weight gain and swelling in your face, called "moon face". Get your diet in order, and take it easy. I worked with a girl who would be on steriods because she had pretty bad tendenitis in both her arms (from waitressing!). She would use the steriods for a short time when the tendenitis flared up, and her face would swell just a bit, but other than that, she was able to work because the benefits out weighed the side effects. I also know, Glojer, that Prednisone is typically given to Lupus patients. I guess, I'm just asking that you have an open mind when it comes to Prednisone, it has such a bad reputation, but it can be a big help to make you feel better.

    So, I'm stepping off my soap box now! LOL I truly hope that whatever treatment you use that it offers you enough relief that you feel comfortable enough to live a full happy life, as pain free as possible. And Glojer, I'm glad my "cootie" remark made you laugh! Hey, I just imagine all the parts of OTHER people's "parts" that have gone before where my "part" is about to be goin'! LOL Even when I had PT this last month and I had to get up on the table to get my massage, if I wasn't sure they had wiped down the table, I took a towel and got the anti-bacterial spray and cleaned off the table so I was sure I would come in contact with as few cooties as possible! You know us "sickies" have to be careful about other people's cooties! If I go on a trip somewhere, I ALWAYS come home and get sick. When I went to Texas this last Christmas to see my son and grandson (aka Poopie Face), I suffered so bad when we got home. The two day drive was awful on the way back home. And it was only two days after I got home that I picked up a nasty viral infection, had to let it run it's course. Same thing happened when I flew up to Iowa to be with my mom when she was dying. The doc said that airplane "air" is the worst, it contains all the "ickies" that just recirculate throughout the airplane and we breathe it in! So the doc said that I must have touched something in a public bathroom or any public place where germs run wild on my way back from Texas. And as you both know, give our immune systems, we catch cooties easily! So I guess if I ever travel again, hopefully I'll be able to travel again, I'll be like Michael Jackson, wearing a mask and gloves and using an umbrella! I think I'll wear regular pants instead of pajama pants though! LOL ***wink wink***

    Glojer, may I ask why you are coming off the Mex and the Plaquenil? Are they not working for you? Is there a course of withdrawl symptoms from quitting those meds? CAN you quit them cold turkey? What causes the w/d symptoms from these types of meds? I know about what causes w/d symptoms from narcotics, but am in unfamiliar territory regarding the meds for RA and Lupus. I do notice that a lot of meds developed for RA are being administered to Lupus patients. Those two conditions seem very similar, tho Lupus seems to mess with the major organs more, and RA seems to mess with the whole skelatal system. And it seems that FM and RA are similar when it comes to what is causing the immune system to go haywire, though RA causes the overgrowth of tissues which causes the inflammation, but the base of these two illnesses seem to be the same. I can certainly understand how someone would have FM first and then develop RA later, same with Lupus. Glojer? Do you also have FM? I think I remember you saying you did. You had Lupus first or FM first? I've noticed that it is usually common for a Lupus patient to have Lupus THEN develop FM, same with MS, people with MS will later develop FM. It's interesting the commonalities these four conditions have isn't it? All of these conditions seem to have the same anomalies within the immune system. I can be grateful to "just have" FM, because as miserable as it is and though having FM seems to interfear with most every other part of the body's system, FM isn't as debilitating as RA, Lupus, or MS. We FMights are not losing the funciton of our joints because of the blood flowing through is "poisoned" with the elevated Rh factor, we don't have to worry about our kidneys failing because of Lupus being a "systemic" condition that literally "attacks" the organs we depend on to sustain us, or losing control of our motor skills because of the damage to the brain that MS causes. Yes, we suffer with all the complexaties of FM, and are frustrated because there is no exact treatment for us, we use "hand me downs" for treatment, but our organs are intact, our joints are not swollen so bad because our body's immunes system thinks there is an "intruder" when there isn't so it turns on itself, and our brain isn't affected to the point that when we tell our legs to move, they ignore what they are being told. I'm certainly not minimizing the pain of any of these conditions, I believe that the pain of each of these conditions is bad enough to make you scream. Personally, and this is just how I feel, if I have to live with FM and CFS as far as autoimmune disorders, I'll take those anyday over having Lupus, RA or MS. And to be one of those people who have one of these conditions along WITH FM, God love ya!

    However, we are ALL warriors, with our own personal battle, and I know that all of us here have within us the power and the will to fight on. Though we will suffer periods of defeat, all good warriors do, we will get up and fight again. We all have that within us, we may not realize it, but we do!

    Love you both,
    tk

    Hey, I'm going to post that info about Humira and the other things I promised you, Blue, in the next post. K?
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    Old 06-09-2005, 03:57 PM   #13
    bluelakelady
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    Re: blue needs your knowledge of methotrexate and enberol(sp?)

    butt cooties, you crack me up, pun intended. i am a patient woman. take your time. i have had a push me chair for 7 years. i never use it. i used it back then. had to. these days it grows cobwebs and such. i think instead of a wheelchair i want a lark when i am old, old, old and need the help. i can picture it now, giggle.
    hey glojer! always happy to see my need serve another. glad you wanted the info too. that way teekers can help us both and who know who else here.
    love ya both,
    bluelakelady

     
    Old 06-09-2005, 04:01 PM   #14
    tkgoodspirit
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    Re: blue needs your knowledge of methotrexate and enberol(sp?)

    Quote:
    Originally Posted by bluelakelady
    butt cooties, you crack me up, pun intended. i am a patient woman. take your time. i have had a push me chair for 7 years. i never use it. i used it back then. had to. these days it grows cobwebs and such. i think instead of a wheelchair i want a lark when i am old, old, old and need the help. i can picture it now, giggle.
    hey glojer! always happy to see my need serve another. glad you wanted the info too. that way teekers can help us both and who know who else here.
    love ya both,
    bluelakelady

    Hey Blue,

    I'm wanted to catch you while you are online. I'm working on getting that info into a reply right now!
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    Old 06-09-2005, 05:50 PM   #15
    tkgoodspirit
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    Re: blue needs your knowledge of methotrexate and enberol(sp?)

    Okay, Blue, here is the info about Humira, and at the end, I'll list the "Self-care" remedies rated most popular by RA patients.

    First let me say, I found that Humira is very similar to Remicade as far as it's components. Humira is administered the same way Enbrel is, tho, Humira does not need to be injected as often as Enbrel. I also found a "warning" by Abbott Labs, the manufacturerer of Humira in regards to an adverse reaction with a certain medication that is used to sometimes treat RA and Cancer patients. I will also list info about that interaction. Though the other RA treatments like Remicade and Enbrel boasted that they work well with other meds. This is the only treatment I found that adversely interacts with this one particular medication. Although, like many medications, there are always precautions and drug interactions that are listed when you recieve your prescription. We all know that we should read that paper, tho a lot of us don't (raising my hand! ). The one "precaution" that kept popping up referred to anaphalaxic as one of those precautions. We also know that you should talk in depth to your doctor about ALL possible reactions and side effects you may experience with any of these treatments.

    HUMIRA is a biologic disease-modifying medicine that interrupts the inflammation process and helps slow the progression of rheumatoid arthritis (RA). The active ingredient resembles an antibody that normally occurs in your body, so it helps your body to fight RA the way it would if it could. HUMIRA can also be taken with pain medications and other disease modifying drugs. It resembles antibodies normally found in the body. As HUMIRA binds and blocks the activity of TNF-a, it reduces the signs and symptoms of RA and slows the progression of structural joint damage caused by the disease.

    How is HUMIRA different from other medications that treat RA?
    HUMIRA is a biologic disease-modifying antirheumatic drug, also called a DMARD. Biologic DMARDS (DMARDS were mentioned in the first couple of my posts referring to the info of how these treatments work ) are among the most recent RA treatments approved by the FDA and are approved for reducing the signs and symptoms, and slowing the progression of structural damage to the joints caused by RA.

    Other biologic DMARDs include Enbrel® and Remicade®. Enbrel is injected once or twice weekly, and Remicade requires a visit to the doctor to administer the medication. HUMIRA is an effective biologic DMARD and was the most widely studied TNF-a antagonist when it was submitted to the FDA.

    HUMIRA can be injected by you or a loved one in the convenience of your own home. And, it usually only needs to be taken once every two weeks - giving you more freedom to live your life without having to always think about taking your medication.

    The most common side effects of HUMIRA are:
    injection site reactions
    upper respiratory and sinus infections
    headache
    rash
    injection site pain

    Anakinra
    A substance that is used to treat rheumatoid arthritis, and is being studied in the treatment of cancer. Anakinra blocks the action of interleukin 1 (IL-1). It belongs to the family of drugs called interleukin receptor antagonists. Also called Kinaret®. (interleukin is one of the protiens referred to in my thread about FM being classified as a disease. This protien is one of the protiens that, when elevated, "poison" your immune system, which regarding FM, damages the neurotransmitters that are meant to block pain. Often when your doc orders a CBC to check your blood, there is a section in the test that reads protien levels, it is normal to see elevated protien levels in FM, RA, Lupus and MS patients )

    Use with Anakinra This is taken from the Precautions and Drug Interactions sections of the information literature that is packaged with Humira.
    Serious infections were seen in clinical studies with concurrent use of nakinra
    (an interleukin-1 antagonist) and another TNF-blocking agent, with no added
    benefit. Because of the nature of the adverse events seen with this combination therapy, similar toxicities may also result from combination of anakinra and other TNF blocking agents. Therefore, the combination of HUMIRA and anakinra is not recommended (see PRECAUTIONS, Drug Interactions). Remember, I said that reports of anaphylaxis was found in reference to the list of severe side effects of any of these treatments. Again, you know to speak in depth to your doctor regarding any of these treatments and their possible side effects. I'm not promoting any particular treatment, I am merely offering you information that is available to the public, your doctor knows you best and will know which is best for you.

    Okay, enough of the technical stuff, here comes the info from a group of your "peers". LOL Sounds like a game show! Here's the top rated self treatments for RA, rated by other RA patients. There is only one list of preferred prescription meds by other RA patients.

    The numbers next to the "treatment" are the rating value from 1 thru 10. 10 of course being the best.

    Self-care Treatments: Top 3 Remedies
    Laughter / Humor Therapy: 10 Blue, I think you've got this one covered!
    Patient Education: 9.6 The list of education may not have been approved by board policy, so I'll just say that "self-education" by any means you have available is always a 10!
    Hydrothermal Therapy: Sauna / Steam Baths: 9.3

    Nutritional Supplements Top 3 Remedies
    MSM (Methylsulfonylmethane) 10
    Vitamin C (Ascorbic Acid) 10
    Multi-Vitamin; Mineral Supplements (combined ratings)

    Complementary and Alternative Therapies Top 3 Remedies
    Bodywork Therapies: Jaffe-Mellor Technique 8.4 I have NO idea what type of therapy this Jaffe-Mellor Technique is! Anyone know?
    Bodywork Therapies: Therapeutic Massage: 7.8
    Chiropractic Therapy 6.8

    Over-the-counter Medications and Products Top 3 Remedies
    Therabath etc. (Paraffin Wax Baths) 9.2
    Magnetic Therapy: Pulsed Magnetic Fields (PMF) 8.9
    Topical Painkillers: Methyl Salicylate Formulas 8.3

    Prescription Medications and Doctor Procedures Top 3 Remedies
    Solganal (Aurothioglucose) 9.7
    Flexeril etc. (Cyclobenzaprine) 9.7
    Methadone etc. (Methadone Hydrochloride) 9.3


    AND FINALLY! Here is a list of the most popular RA specific treatments:
    Top 10 Remedies for Rheumatoid Arthritis Remedy Name Weighted Rating
    (0 = poorest; 10 = best)


    Antibiotic Therapy 8.1
    Enbrel (Etanercept) 7.2
    Remicade (Infliximab) 6.9
    Deltasone etc. (Prednisone) 6.8
    Plaquenil etc. (Hydroxychloroquine) 6.3
    Rheumatrex etc. (Methotrexate) 5.9
    Arava (Leflunomide) 5.8
    Celebrex (Celecoxib) 5.5
    Kineret (Anakinra) 5.2
    Azulfidine etc. (Sulfasalazine) 4.2


    Okay, there ya go! Keep us posted on how your treatment goes, whichever one you choose. You too Glojer.

    Love to you!
    tk
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    Last edited by tkgoodspirit; 06-09-2005 at 05:55 PM.

     
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