Wednesday, March 17, 2010

How can something so small hurt so much?

Warning: Rant ahead....

1 week off the prednisone and I am feeling it. I hate to complain because I know so many of you are in more pain that I am. I just got so used to feeling good that this really stinks! My hands are achy, my ankles are stiff and my little toe is KILLING me! Seriously - it's just a wee toe, but it is hurting something awful today. I have erosions in the last 2 toes (the little one and the one next to it) on both feet, but most days with my granny shoes and orthopaedic inserts, I get by. Today my right pinkie toe wants nothing to do with shoes and is barely tolerating socks.

I think the worst part of it is that I kind of have to keep the pain to myself (well, other than sharing anonymously with the world wide web). See, no one other than my hubby and my rheumatologist know about the plan to have a baby. Not my friends, not my mom - no one. So, they don't really understand why I can't try a new medicine, go back to the Arava, etc. I know it's because my rheumy wants to keep me on a regimen that I can keep once we start TTC... but I really don't want to tell anyone that yet.

Why? I guess part of me feels like if I tell, then I'm committed to it. What if I change my mind? I'm 90% there... but life happens. I've got months to go before the Arava is out of my system. Which means months before we can start trying. A lot could happen! I guess part of me also worries that if we try to have a baby but can't for some reason... well, I don't know that I want to have to share that with others. Right now everyone close to me thinks that I just don't want to have kids - and that just seems easier.

Well, easier except when it comes to explaining why I'm limping around in pain. Right now I just use the excuse that the Arava was wiping out my white cells (true) and that my rheumy wants to wait another month or so to give the Plaquenil time to kick in (also true). So, it's not a lie... it's just not the whole truth.

I think if the Plaquenil doesn't kick in, we'll consider a small dose of methotrexate. I initially started on methotrexate when I was first diagnosed in October 2008. It didn't do much on its own, so we added Enbrel in December 2008. I think by that time I was up to 9 methotrexate tablets per week. While that seemed to get the pain and swelling down, the methotrexate left me incredibly tired (other than going to work, I did nothing for 2 days after taking it) and my hair started falling out. So, in March 2009, I swapped out the methotrexate for Arava. All was well and good until the white cells got super low...

Given the history of fatigue and hair loss, I'm not super excited about going back to the methotrexate, but my rheumatologist thinks we could do a lower dose and hopefully avoid the side effects. He explained that methotrexate tends to work well in combination with other medications - like Enbrel and Plaquenil - so you don't necessarily have to take as much.

But as far as pregnancy and methotrexate - they don't mix. You have to quit the methotrexate before you start trying to conceive, but there isn't a long washout period like there is with Arava - only 1-2 months (vs. up to 18 for Arava!!). Methotrexate can cause birth defects and miscarriage. (An injected form of it may actually be used to end tubal/ectopic pregnancies - so it's serious stuff!) So, it would really be a short-term solution to get me through to TTC time.

Right now, I'm just taking my Aleve, keeping my foot up and hoping for the best. Dear Plaquenil - please kick in soon!! And dear Arava, please get out of my system soon!!

9 comments:

  1. There are RA meds that are same during pregnancy like Plaquenil which your doctor has suggested. You might even go into remission as I did. How about natural supplements?

    Your doctor might have some reccomendations. You know your body best and so your rheumy and your hubby have your best interests at heart. The rest the world needs to get rid of their ignorance. You would think that family and friends would make the effort to learn about RA, but they don't but that is family, what ya gonna do?

    Also, some dietary changes might help - you should be able to find a list of arthritis trigger foods and foods that are considered superfoods for athritis that can reduce inflammation.

    Well good luck to you but I am sure you will be fine. You are making a good decision because children are wonderful and a blessing.

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  2. Hey Girl,

    The MTX is always what I had to stop in order to try and get pregnant, but like you are finding with the Arava, I constantly found that coming off the MTX made me so sick that I wasn't even able to conceive of how I would take care of a baby if one was there. It can be a disheartening cycle.

    I am confused though b/c MTX usually takes 6 weeks or so to work really well...so it may not be overnight for ya.

    I know it is frustrating, Girl. Believe me. I know. Hang in there!

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  3. Thank you both for your kind thoughts.
    Living it, Loving it - I do take fish oil and try to avoid foods that cause inflammation. But your post reminded me that I really should look into accupuncture... I think about it every so often, but then forget when I feel better!

    SB - yeah - these meds can be vicious cycle! Hopefully the Plaquenil will listen to my prayers and I won't have to consider the MTX!!!

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  4. Acupuncture could give you some temporary relief, VW. You might also try soaking that foot (if you are at home) in a tub of hot water. While it won't make the flare go, it IS soothing.

    I understand your frustration. I've read that your doc can give you something that will rid your body of the Arava faster, though it takes several days of doses and probably isn't very pleasant. Worth asking about, anyway, if you want to speed the process up a bit. In the meantime, though, perhaps this waiting period is good. By the time it's safe to get pregnant, you'll be more sure that it's the right decision. I've no doubt that you'll do just fine through pregnancy and as a Mom, even with RA -- there are lots of us out there who are either doing it or have done it.

    I hope the flare in your wee toe gives up and goes quickly. I DO know how truly, overwhelmingly painful that tiny joint can be. Sending comfort and calm in your direction ...

    -Wren

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  5. Sorry you are going through this. When you said "some of you are in more pain than I am" that gave me something to think about. You are hurting so your pain to you is real and it doesn't matter what stage someone else is in with their RA...RA pain is pain and is hard to live with. Also, it doesn't matter how long a person has had RA as to what pain they are experiencing. I think I may do a post on my blog about this because I am seeing people compare too much lately. So, all in all I just wanna say that I feel bad for you and the pain you are in and I hope the Plaquenil starts kicking in soon! Methotrexate wiped me out! I didn't realize how bad it was draining me until I stopped it. I thought my RA was getting worse and that was why I was drained all the time. I have thought about accupuncture myself...and Epsom salt baths.. Hang in there...xoxoxo

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  6. I also started to think it was lupus, even tonight as I was doing searches online…until reading this. I’ve had FM/CFS for almost ten years, with light hair shedding every now and then, but recently and quite suddenly I have lost so much it became a crisis.

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  7. Yes, it does add more pain and stress to have a baby and deal with RA, but it is worth it!! Some ideas that have help make my life easier * Line up help * on days when you feel good make 2 meals instead of 1 and put one in the freezer * pace yourself....... Wishing you the best!

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  8. Have you ever considered working with a naturopath? I work with a naturopath who helps me with diet and herbs that can reduce inflammation.

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  9. Came across your blog by accident when looking for info on giving up drugs to concieve...

    It was quite a spooky read! It was like reading something I had written about myself!!!!Different drugs but your story is exactly the same as me. I totally know what you are going through! Like you only myself, my husband and my rheumy know whats happening and that i'm trying to come off certain drugs (methotrexate) in order to concieve. I don't want to tell anyone else family or friends (not even my mom knows which i do feel bad about but its just easier) -Everyone sees me in pain and asks 'why cant they put you on better drugs'. I dont want to tell anyone our plans incase I cant deal with all this pain and have to put my plans on hold, or incase we cant get pregnant etc (the last thing i need along with all ths pain in my joints from my arthritis is people asking if im pregnant yet) My rheumy has told me I have to be off the mtx for 3-6 as a wash out before its safe (seems to be contrasting info on the net i've read reports which vary from as little as 1 month - 12 months. Hard to know what to believe. I'm also on sulfasalazine (which is ok to take during pregnancy - risks out weight the benefits sort of thing) and have been told if needed they will treat me with steriods as well.

    Good luck with it all!

    x

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