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  1. #41
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    Mar. 30, 2009
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    Antibiotics really didn't help me at all. I wish. Its odd to me that some RA docs are suggesting delay of biologics due to childbearing age. My doc just says that I can't be on them if I decide to get pregnant (have to go off like 6 months before or something like that) but has never questioned my being on them as long as I take appropriate precautions (BC).

    I actually am another one with spine involvement, but it is supposed to be pretty uncommon.

    fxhtr- As far as drugs wearing on organs as far as I know the main one that could be an issue is the liver and that is why you should be getting getting regular blood draws to check liver enzymes whenever on MTX. The pain meds can stress your stomach and liver as well. Prednisone can cause other issues too. Biologics, it depends on which one as they have different side effects.

    For MTX the max dose seems to have some variablility as some will do up to 30mg orally or injected, 20-25mg is more standard.
    My blog:

    RAWR



  2. #42
    Join Date
    Apr. 30, 2003
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    614

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    Sorry all - stressful week....

    I'm on 25ml injected MTX once a week with Leucovor 12 and 24hrs afterwards.
    100mg Doxy once a day
    Plus the usual Vit D 25,000 units, Etodolac and Baclofen; Soma on really bad days to help with the muscle spasms.

    I'm another with RA in my back - low back, sacroiliac, cervical spine, plus the usual joints - hips, wrists, hands/feet, etc.

    The 3hr afternoon nap is the only way I can function normally...makes it hard to hold a traditional job...

    Luckily, I have summers off so can take the summer to get as good as I'm going to get before another school year!!



  3. #43
    Join Date
    Aug. 13, 2003
    Location
    California USA
    Posts
    740

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    I do not have R.A. I have osteo-arthritis. I am on pain meds daily. Due to my hip sockets and low back pain I can not ride astride any more.
    I ride a sidesaddle now. I have a modern Western and can ride without hurting. I rode a 1/2 Thorougbred, 1/2 Suffolk Punch and he was a hoot.
    He didn't mind the sidesaddle at all.
    I enjoy riding when I can but the body is getting old and tells me I have to slow down. I do not want to slow down.
    But since I have to live in this body I have to listen to her.
    I am glad you who have R.A. have meds that help.
    Along with the osteo-arthitis I have psoriatic arthritis from psoriasis. I have tried the methotrexate and did not like the side effects.
    I ride when I can but it is less and less often these days.
    But when I can ride it gives me a high for days.
    Kind regards, sadlmakr



  4. #44
    Join Date
    Jan. 4, 2009
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    503

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    sadlmakr, if you have psoriatic arthritis, then you have a disease very similar to RA and you risk joint damage if you don't take a disease modifier. I'll be as blunt with you as I am with people with RA--sure, some of the side effects are inconvenient, and some are downright scary, but lots of people have been doing well on these meds for lots of years. It's a personal choice for each individual, but I would much rather have quality of life now while I'm still young enough to enjoy it. If this stuff kills me at 75, I don't really care (although my opinion may change if/when it happens!).

    I've had severe RA since early '97 and have very little joint damage because I've been on good disease modifiers. I've had no replacements so far--still using all my original equipment. Even with the meds, pain and fatigue are huge issues, but they would be so much worse without the meds.

    Sorry for the lecture, but I just hate the thought of the damage you might be incurring that might be preventable. Please accept it in the spirit in which it is intended. All I ask is that you think about what I've said--obviously the decision on your treatment is entirely yours.

    Rebecca



  5. #45
    Join Date
    Aug. 17, 2006
    Location
    ONTARIO CANADA
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    The modifier meds do make the difference, you just need to find ones that work for you with side effects you can handle. Who knows you may have milder to none. With mine (sufasytozine) i have to check my liver every2 months. You wont believe the difference in pain levels. After starting it 80% of my pain and stiffness is gone, i was literally doubled over in pain before! Still have to figure out a low does painkiller my body can handle. I really think im gonna be in the 10% that have ra but doesnt show markers ya know i have to find a way to be different!
    Beyond the Ring-para dressage, training, coaching
    www.facebook.com/btrparadressage

    Proud Team Four Star Minion! Renegade for Life!



  6. #46
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    Apr. 30, 2003
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    614

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    For the Methotrexate - some things can be done for the side effects.

    For example, the first time I was on MTX, I puked my guts out 4 out of 7 days, but had 3 GREAT days. Went on Enbrel with the MTX and was able to wean down.
    Also had the thinning hair and headache.

    2nd time with MTX (3yrs so far), I've been taking the Leucovor 12 and 24hrs after my injection and it helps MAJORLY with the Nausea!! No more throwing up, just some nausea 2 out of 7 days!
    My hair is coming out in gobs, since my last increase...yes, it's frustrating, especially for a woman, but worth the quality of life!

    Totally agree with RMJacobs on that one!



  7. #47
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    Mar. 30, 2009
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    Ditto to what Jay-n-Jete said pretty much. In my case just switching to injection helped a lot with the worst side effects for me (the actually getting sick). Now it just makes me tired, nauseous, and makes my hair fall out (and I am a bit obesessive about my hair so that has actually helped...I apply the same principle as I do to my horse's tail: mess with it as little as possible! I keep it carefully detangled and up much of the time to avoid needing intense brushing. Condition intensely. Take the Folic acid I am prescribed, and NEVER blow dry. It still falls out but it almost looks normal.)

    Since I had the allergic reaction to a biologic my docs also make sure I take claritin and pepcid (blocks histamine-2s) as well to help reduce any additional reactions. All I can say is don't make the mistake of counting how many pills you take per day
    My blog:

    RAWR



  8. #48
    Join Date
    Mar. 23, 2007
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    4

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    Hi Ladies,

    I just found this thread, it's somehow comforting to find others who struggle with RA AND love their horses. I agree that Kelly at rawarrior is a big help, but combining it with horses is even better.

    I have found that splitting the folic acid ( 1 mg ) in two and taking it am and pm has so far kept me from losing my hair. It seems so silly to worry about this when the other effects from this wierd disease are so awful, but it horrifies me.

    I am on Methotrexate .08ml and Humira. I weaned off prednisone a couple of months ago, so far so good, although there are days I am tempted to load up on it. It was a wonder drug for me, but I need my bones to be strong, and it's nasty stuff as far as long term side effects.

    Hope splitting the folic acid helps some of you.



  9. #49
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    Jan. 4, 2009
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    503

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    It's also possible to raise the folic acid dose to reduce methotrexate side effects. I take two mg per day (one morning and one evening), and it stopped the hair loss and mouth sores for the most part.

    Rebecca



  10. #50
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    Apr. 30, 2003
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    614

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    Leukovor does replace folic acid - really helps with the nausea!!

    The mouth sores are horrific right now...but my hair is starting to grow in spots!! I have a 1" "fro", but it's worth it!!



  11. #51
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    Apr. 30, 2003
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    614

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    Oops - forgot -

    Anyone find anything to help with the fatigue??
    I'm back to work (school year) and, without my nap, I'm really struggling...



  12. #52
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    Aug. 17, 2006
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    ONTARIO CANADA
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    Quote Originally Posted by Jay-N-Jete' View Post
    Oops - forgot -

    Anyone find anything to help with the fatigue??
    I'm back to work (school year) and, without my nap, I'm really struggling...


    Nope, i try to drink powerade, gatorade or orange crush or 7up. Helps a bit
    Beyond the Ring-para dressage, training, coaching
    www.facebook.com/btrparadressage

    Proud Team Four Star Minion! Renegade for Life!



  13. #53
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    Mar. 30, 2009
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    nope. I have tried short naps, long naps, sugar in small doses (this seems to help the most but not as much as I would like) like sipping soda or a juice, caffeine (like coffee and tea)....vitamins....powerade or gatorade....Usually I push like crazy and put up with a lot of pain and exhaustion to get through my week and then crash on at least one weekend day. I am still trying to find a better way.
    My blog:

    RAWR



  14. #54
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    Jan. 4, 2009
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    503

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    The only things I've found that help with the bonecrushing RA fatigue is Humira, and pushing through the fatigue that Humira doesn't fix. I push myself pretty hard all day, have been known to stand at my desk if sitting lets me fall asleep, and when the exhaustion is the worst, I get up and do something physical. Then I collapse at the end of the day.

    Seems extreme, but I found if I didn't push hard, I got nothing done, and still collapsed at the end of the day. At least this way I feel like I accomplish a lot.

    I have to be careful not to drive my pony in warm sunshine. I've fallen asleep in the cart too many times to count. One day was so bad that I parked him in the ditch where he could eat some grass and took a catnap right where I was. Very risky, I know, but at least he was occupied for a bit. I woke up every time he moved, so at least he didn't wander back into the road.

    Rebecca



  15. #55
    Join Date
    Feb. 24, 2007
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    151

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    Since my last post on this thread I took some drastic dietary measures to see if that would help at all.

    For the first few weeks I thought, "yeh, this is a crock"...but I have to say, now a couple months "clean" and tho I can't say it has been miraculous, I have to say, dang, I do feel better!

    I'm off anything white, anything with processed sugars and HFCS, and also eliminating most grains and simple carbs. I've up my omega 3's significantly, and also cut out beef. (most meat in fact...use meat essentially as flavor enhancement to soups etc)
    Not only have I subtracted/eliminated certain foods, I've significantly increased consumption of others.

    I have not forsaken treatment, but in really thinking a lot thru, if we are what we eat, well, darn it, I was a big cup of coffee and carbs all day. Yeh, I was eating whole grains and oatmeal and fruit...but carb, carb, carb.....which in turn just heats up the inflammatory process.

    Diet isn't going to cure RA, Lupus, polymyositis etc....but I can say, using food as a huge part of my treatment has significantly helped with the pain and fatigue. Am I pain free? No. But I don't sit on the side of the bed in the morning asking myself "how am I going to make it to the stairs" either.

    Probably half the improvement is med changes...but I know my body well enough to know the diet change is really really helping.

    I'm back in regular lessons and just went on a three hour trail ride..again, pain free? NO....but functional. I figure, I am in pain whether I ride or not...so I opt to ride. =)

    When I put anything in my mouth, I ask, IS IT WORTH IT...if I am tempted to grab something sugary or carby. Once or twice I said yes...and if I ever doubted that diet made a difference, my hands and feet the next day would scream "YOU IDIOT" as I struggled to hold my coffee cup or tie my shoes.

    If diet isn't something anyone has tried, highly recommend givng it a few month trial. Think of it as part of your treatment and really really stick to it as a way of life. I know it has been very helpful for me, and you have nothing to lose but maybe a couple pounds and some inflammation.
    For the skinny mini's, it is challenging to keep weight ON at first...but I found that my weight balanced out as my body adjusted and I figured out how to get more calories in, without the sugars/carbs.



  16. #56
    Join Date
    Apr. 30, 2003
    Posts
    614

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    For those with canker sores (mouth sores)
    My new doctor (PCP) just told me to try l-lysine
    (must be L-lysine, not just lysine)

    She said canker sores are most often an amino acid deficiency.
    So....I'm going to give it a try!


    Rebecca - I'm in the same boat with getting sleepy, but I commute 2-3hrs a day and I'm SCARING MYSELF!!
    I'm good for the first 15 min, then struggle the rest of the ride, no matter what I do - stop, walk around, eat, drink.
    I can't have caffeine b/c a heart problem or I'd try that!
    What to do - it is very frustrating!

    So - what DO you eat?
    I have IRB and very lactose intolerant, so basically live on cereal and bland foods (mostly white or off white...)



  17. #57
    Join Date
    Apr. 30, 2003
    Posts
    614

    Default -

    I do get some fruits and veggies in, very little meat (chicken) and try to get fish in 1-2 times a week...

    Any ideas would be great!



  18. #58
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    Jan. 4, 2009
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    503

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    JnJ, I would have a tough time commuting that long these days. I don't know how you do it.

    I've been doing a 200 mile round trip every couple of weeks transporting my daughter back to college after a weekend at home (daddy has been picking her up), and I've done OK with it, but I can't take it for granted that I'll always be OK with it. It would suck if I couldn't keep doing it, because I love to drive long distances, and I really enjoy the trips to the university--great random conversations with my daughter on the way there, and wonderful alone time with really loud music on the way back. I can just hope I can keep doing this.

    My work commute, on the other hand, is only 13 miles on back roads. It is very pleasant except in a blizzard.

    I remember when I was having a terrible time with untreated sleep apnea, before I knew what it was. I could fall asleep waiting at a short red light. I was scaring the crap out of myself, in spite of driving with the sunroof and all the windows open in the winter, blasting the radio, singing at the top of my lungs. I couldn't sit through a meeting at work--had to pace around the room instead, which drove everyone else nuts. Getting my sleep apnea treated helped a lot, but it doesn't change the fact that I still have the autoimmune exhaustion to deal with.

    I really think the exhaustion is the worst of the lovely gift that is RA. If we weren't so darned tired, we might be able to cope with the pain better.

    Rebecca



  19. #59
    Join Date
    Aug. 17, 2006
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    ONTARIO CANADA
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    Rebcca, you hit the nail on the heads! I find myself zapped and can barely bring a load of laundry to the basement myself. As for pain tolerance, im a mess 24/7 pain does that. Least i know my endometriosis pain levels are unnafected(can be off the chart morphine deal). I have ibs with the endo so you can imagine the fun
    Beyond the Ring-para dressage, training, coaching
    www.facebook.com/btrparadressage

    Proud Team Four Star Minion! Renegade for Life!



  20. #60
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    Mar. 30, 2009
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    786

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    There have been some times I have almost fallen asleep while cooling out my horse His gaits aren't that good either lol. I often drive with my music up pretty loud as it helps keep me awake. Then of course I go to try to sleep and pain keeps me awake and/or wakes me up a lot. Oh well.

    Diet-wise I tried a few now to no avail (for quite a while each time). And I have some sort of stomach issue so I eat what doesn't make me sick. Usually bland foods that stay pretty consistent and fruits and veggies. It doesn't so much help anything as seems to cause the least issue. I don't eat red meat much as it is though. Occasionally I do, but mostly fish and chicken. I know that dies changes whether red meat free, gluten free etc. have been really helpful for some. Always worth a shot!
    My blog:

    RAWR



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