First Rheumy Visit of 2013

Taken from Google Images

Taken from Google Images

I’m going to allow myself to have a small pity party in this post, if you don’t mind. My first visit to the doctor this year sucked. I love my doctor, don’t get me wrong. I always tell people that the man is not allowed to retire or die, because I want him to take care of me forever. I just wish he had better news for me today.

Even though I haven’t been in pain much lately, I’m showing signs of joint damage in my hands. If I place my hands on a flat surface, you can see a dip in my knuckles. Now, I’m being forced to make some pretty big decisions.

He wants to switch me to Methotrexate for a few months, then possibly to Enbrel or Humira. He told me he wanted me to put some serious thought into taking the more aggressive approach, so I have until my next appointment in May to make the call. Here’s the dilemma: if I don’t go on the new treatment and stay on the Plaquenil, my joints are going to continue to get worse. If I opt for the new treatment, however, he told me that it’s not very likely I’ll be able to have children, since none of these medications are “baby friendly,” as he calls it. Even worse, it’s possible that we’ll run out of treatment options that much sooner, meaning there won’t be anything left to help me when I’m, say, 40. I’m devastated. Mom’s a mess. My friends are speechless. My family is trying to convince me to freeze some of my eggs so I can become a mom someday.

I thought I was doing so well. As much as I don’t want to start taking chemo drugs or risk my fertility, I don’t see any other option. I need my hands. I’m a writer and, more recently, a jewelry designer. I’m 21 years old, I need to be able to go out and make a living for myself without having to depend on other people to care for me.

I’m too young for joint damage. I need some more time to think and get my emotions in check. I also need to do some research on Eastern medicine. I’ll be damned if I have to get old before my time, and I’ll swallow any amount of roots or barks to slow that process down. Meanwhile, could you send some good vibes/prayers my way? It’s been an awful, highly emotional week for me. Maybe you think I’m being over-dramatic or selfish, but I do realize there are people out there who have it worse. I have a friend with terminal cancer. I know myself, and I know eventually I’ll start looking at this situation with a positive attitude. I just need a little push to get there.

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8 responses to “First Rheumy Visit of 2013

  • My RAD Life

    I’m a 29 year old woman who wants kids someday and is taking Methotrexate and Enbrel for RA, so believe me when I say I understand all the fear you’re going through. I know the side affects sound awful, but according to my research, a lot of women get pregnant after being on Methotrexate and Enbrel. The thing is, you’ll have to get off the Methotrexate months before trying to conceive (but it can be done!). If you get pregnant while taking the drug, it can lead to miscarriage and birth defects, but once you let it clear your body, you *should* be fine. I actually think Plaquenil is similar, but I haven’t looked into it too much. They haven’t studied Enbrel quite enough to know its affects on fertility, but I’ve read about women who’ve had normal pregnancies while taking it. Basically, when you’re looking at getting pregnant, make sure you go to an OBGYN who specializes in at-risk pregnancies. Please don’t give up on any of your dreams because of RA, especially kids!

    • apierce

      Thank you, I really needed to hear this. People in health care have been making everything seem so gloom and doom for me lately, but I guess sometimes they need to in order to get the point across. I just wish they’d take more time to sit down and explain everything. According to what I’ve read and whatnot, Plaquenil is usually the drug they put women on when they’re pregnant because it’s the “safest,” though I’d argue that no drug is really that safe. Anyway, this is why I started blogging, so that I could have others going through what I am keep me in check. Thank you for making my day!

  • Caitlin Pereiras (@Caitlinness)

    Lyss, I’m here for you and I’m sending positive vibes your way. You’re one of the strongest people I know, and I have every reason to believe that you will get through this. Plus, you won’t have to do it alone. This is not where your story ends; this is the beginning. There are bumps on every worthwhile road, but you have the strength to get over them. And I have faith that I will see your name on the bestselling authors list. And I will play with your children and they will call me Auntie Cait. 🙂

    Love you!!!!

  • riceeyd

    If it helps any I’ve been on MTX for 8 years and it is still working. I have increased the dose and now I take it 2x a week but I haven’t progressed to the bigger guns yet. My doctor has been great with playing with dosages and figuring out ways to make MTX work long term.

  • Lynne Hotlum

    Alyssa, I just happened across your blog while looking for info on why I am drinking a cup of ginger tea, when I really don’t like it, but I will persevere.
    I realise this post was a good few months ago now and apologies if you have addressed this again in a later post- I was diagnosed with RA 2 years ago and went straight onto high doses (17.5mg) methotrexate.
    Before I started this treatment I couldn’t dress myself, stand up by myself, pick things up etc etc. Within months my condition improved 90% and now almost 2 years later I can say with my hand on my heart that on a day to day basis I live a virtually normal life. Every now and then I get a stiff finger here and there but, who doesn’t. I live in the UK so I don’t know if the treatment methods differ from in the US. I have also given up meat and generally follow a healthy (no fads) diet. I feel like I have read everything there is to read about MTX and I realise that many people aren’t as lucky as I am and have only a minor reaction to MTX but I am 29 (27 at the time). I have spent hours talking to Drs and Rheumos about it and I came to the the decision that yes it is a strong drug, but I don’t want my joints to degrade to the point that by the time I am 35, I may as well be 55. Furthermore I have a career I want to keep and build on and a dream of having children and wanted to be able to be an active and involved parent when I do. MTX isn’t for everyone, I resent the fact I have to take it, but where it is one of the best treatments around to mitigate the long term damage RA can cause, for me it was a no brainer.
    On the baby front my extensive talks with Drs and Rheumos and ALOT of reading, the idea that MTX can reduce or cause great risk to your actual fertility is a very very unlikely and rare outcome. MTX is not baby friendly when you are on it, but once it is out of your system there is little to say that it causes long term damage to your fertility. Last week I had a rheumo appointment and didn’t have much to talk about in terms of RA stuff so spent an hour talking to my rheumo about having a baby. My partner and I want to have a baby in the next two years- and though there is a bit of a process to go through, I am not worried in the slightest. I am going to come off MTX, have blood tests to see when it is out of my system (within 3-6 months) and then will start trying for a baby as normal- will have some other more “baby friendly” treatments whilst trying. My rheumo said that in 40 years of consulting she has never had an mtx patient who could not get pregnant because of this treatment. I am really surprised as to how much your Rheumo said about the fertility and its is so rare that this happens. Getting diagnosed with an illness has been eye opening to the effect that you become aware of the “scare-mongering” that goes on, when it comes to drugs. If the results of research comes out, it is shouted from the rooftops, regardless of whether or not there are 580 pieces of research which claim the contrary. Don’t take codeine because its derived from cocaine, ditto something else about ibuprofen, blablaba. If you read the horror stories (like I did and scared myself to death) about mtx that are on line, yes, it is strong and yes it can affect lots of things, but in the vast majority of people it does far more good than harm. Reading the list of possible side affects of any drugs would scare most people.

    I hope that you have been able to find something that works for you in terms of treating your RA. It sucks having to make these decisions, doesn’t it- but it will work out in the end! This is a long post… sorry, seems I have a big opinion on the matter!

    Lynne, London

    • apierce

      Hi Lynne,

      Thank you for your comment, and my apologies for taking so long to respond. I really appreciate it when people take the time not only to read what I have to say, but to also offer some advice. Your points are all very valid. You are absolutely right about the scare mongering. The older I get the better I am at recognizing it, but at the time of writing this post I don’t think I could cope with the idea that I might have issues having children. I also think part of my worry was that I wouldn’t find a partner who could accept that we might have a slightly more difficult time having children than other women. I’m sure you would agree that having RA plays with your insecurities in some way.

      My partner and I have talked about this matter a lot, and he’s really put me at ease. As of right now I’m still on Plaquenil, but my next Dr. appointment will tell the tale. I’ve decided that I will just do my part and take care of myself as well as I can and just let things happen as they are supposed to. I wish you and your partner the best!

  • Lynne Hotlum

    Post Note – MTX in the doses used to treat cancer which is something like 500mg is the subject of most of the warnings regarding fertility, for RA treatment it rarely goes about 25mg

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