Lyrica & Lymphedema?????

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LisaBaker
LisaBaker Member Posts: 28
edited June 2014 in Lymphedema

Hi everyone.  Has anyone had a problem with lymphedema while taking lyrica?  I started taking lyrica in Dec. 2012 to treat peripheral neuropathy.  So far, I have gained 20 lbs and am experiencing severe swelling in my right hand (where the nodes were removed).  I have done everything I know to get the swelling down - lymphatic drain massage, compression sleeve, stretching exercises, to no avail.  It finally hit me today (I know, duh) that it might be connected to the lyrica.  I have been feeling terrible about gaining the weight and have been miserable for the past few weeks with the extra weight around my middle section.  I spoke with the pharmacist today who confirmed that weight gain is a side effect of Lyrica but the swelling is just listed as edema.  I am going to call the neurologist tomorrow and see what she has to say about it.  I hate to stop taking it because it is the only thing that has helped with the neuropathy . . . but I can't take a chance with the lymphedema.  Any thoughts would be welcome.  Thanks.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2013

    Lisa, hello!

    I haven't used Lyrica myself, but I was wondering if you had a good lymphedema therapist, and if you're wrapping (at least at night). Hands are so hard, but sometimes night wrapping will do more than other measures to control it.

    Hopefully others with Lyrica experience will be by before long. Any medication that causes edema can make lymphedema worse, as our compromised transport systems just can't handle the excess fluid. Also, weight gain itself can cause havoc with LE control. (Check out the "Kicking LE's Butt" thread for exercise and weight loss encouragement!) I do hope you can find another way to get the swelling under control rather than stopping a med that's helping!Tongue Out

    Gentle hugs,
    Binney

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  • LisaBaker
    LisaBaker Member Posts: 28
    edited March 2013

    Hi Binney4.  Yes, I have a therapist and I see her tomorrow.  I have a compression sleeve and a glove but they actually make it worse.  Honestly, I wasn't making the connection between the lyrica and the swelling because I have SO MANY other issues in that arm.

    I'm discontinuing the lyrica immediately and will be speaking to the neurologist tomorrow for guidance on how to do that.  After reading some of the information and threads on Lyrica, I don't think it's wise for me to continue on the drug.

    I was so hoping to be able to take the lyrica because it was helping with the neuropathy.  But NOTHING is worth the risk of permanent lymphodema if I can help it.

    Thanks for the help! I appreciate it.

    Lisa - Breast Cancer is Not for Sissies!

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited March 2013

    I took it for a while for pain and gained weight like crazy....this was before my LE days...

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  • suzique
    suzique Member Posts: 2
    edited March 2013

    I am having a horrible time with lymphedema.  Overview:  Mamo, Mamo, Sono, Biopsy (Sept 12), Lumpectomy (Oct 12), Chemo going on Round 5 (Taxotere/Cytoxsan) w/Nuelesta, Pet last week...Masectomy in June.....Tried the sleeve: swells hand, will get the hand compression glove on Monday....taking antibotic for 2 weeks/ arm had swelled, turned red and had fever.  It starts to go away and then comes back.  Pain in and around  original incision....very, very sore.  Pain into rib cage.  Any info will help!  Thanks! 

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2013

    Suzique, welcome!Smile

    Yikes! I'm sorry for all you're going through!Frown I sure don't want to overwhelm you, but you seem to be missing some important pieces of information, so I'll try and make it as step-by-step as possible.

    First off, have you seen a well-trained lymphedema therapist? They're the medical professionals who actually evaluate and treat lymphedema. Any doctor on your team can write you a referral, but it's best to do some research yourself first and make sure the therapist you see is thoroughly trained. Here's how to find one near you:
    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    It sounds like you're having a battle with cellulitis (infection). Here's more information about it that might help as you deal with it. If it recurs you might want a referral to an Infectious Disease doctor with experience in lymphedema.
    http://www.stepup-speakout.org/Emergencies_and_Medical_Care_lymphedema.htm

    Taxotere can cause swelling, and it is possible for that extra fluid to trigger lymphedema. Getting prompt treatment now (not just a sleeve and glove) can help lower your infection risk and make on-going lymphedema care easier to handle. If you still have active infection going on, compression needs to be used with the supervision of your lymphedema therapist.

    The rib cage pain may indicate breast/chest lymphedema (it's actually called "truncal" lymphedema). If so, treating that with the proper therapy will reduce the pain and give you back some control of your life!Laughing Here's information on truncal lymphedema:
    http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

    There's more information on the StepUp-SpeakOut site as well, so look around there. And do feel free to ask anything here--lots of kind and gentle gals here who are anxious to help.

    Gentle hugs!
    Binney

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited March 2013

    Welcome Suz, Sorry you had to join the swell gang but seeing that we are so swell that is great news because we are hear to help you. I hope our resident experts come on shortly to guide you. Meanwhile,do visit stepup-speakout.org. some girls here developed that website and it is the best resource to start off with.



    Most definitely you need will compression in the hand. Make sure the glove fits. No bagging or overly tight so that your fingers go blue. Although you don't say, It sounds like you see a PT or LE therapist because someone recommended sleeve to you. Make sure they are certified to ensure quality service.

    The website I gave you will tell you who is in your area. It will also tell you about cellulitis which it sounds you might have seeing that you did antibiotics and had fever and redness. It can be persistent and dangerous. Don't fear but get educated, this is your best defence.

    Your breast my have Lymphedema if it is swollen, sore or not just right. When our nodes are taken from the armpit it can affect the whole quadrant, breast,chest,back arm, hand on that side.



    The best thing you have done today is join us because we live LE daily and our experiences will help you. Docs just don't know or want to treat it properly.



    Drink tons of water, elevate arm but without tiring it. Alos pump your fist above your head straight up, 20-25 times every few hours if can.This moves the fluid up and out of your arm.

    Awe hon,we feel for you, You will get thru and master this LE stuff. Lots of tears are OK and stick with us.

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited March 2013

    Suz, See I knew one of our experts would be along, Binney posted as I was composing my post. Your in expert hands for sure. She is, so not new to the LE game.

    A big HUGZ4U today.

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  • LisaBaker
    LisaBaker Member Posts: 28
    edited March 2013

    I am getting so frustrated with trying to treat this.  Am I over reacting to this?  I started this post when I was trying to figure out why my hand was swelling and the swelling would not go down.  I was able to confirm with the neurologist that it was the Lyrica that was causing the swelling and she admitted that she should not have prescribed that drug for me.  I was weaned off of it at that point and let me just state that that was a little hell all in and of itself to go through.

    My oncologist referred me to the PT for treatment.  It took a week and a half of trading phone calls to get on her schedule which was a week later (so 2.5 weeks to get in to see her after the initial referral).  I went in for the evaluation and she recommended a different compression sleeve and glove which I was able to order on the same day, as the sleeve and glove I was using was making the swelling worse not better.  The paper work for authorization was submitted to my insurance company 5 days after the evaluation.  I was then told that it could take up to 14 days for approval.  Today is the 14th day so I called the insurance company and was told that it is 14 BUSINESS days, so I have to wait another week to find out if it is improved. Naturally, I became upset to hear this news and when I asked why it was taking so long to get treatment for something that is so important, I was told that the PT office did not mark URGENT on the request and that would have reduced the waiting to 3 days. Once I get approval, I will have to start the process over again to get back on her schedule which could take another week or two after the approval.

    I am so upset about this.  I don't understand why the PT did not do this.  Is it normal to expect a patient to wait a month to receive treatment for swelling in the hand?  The swollen hand is 22.5cm compared to 18.5 of the other hand.  It will go down to about 20cm and then swell back up. 

    Any advice?  I am ready to get a new PT, but I am worried that it delay treatment even longer.

    Uggghh!

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  • KittyDog
    KittyDog Member Posts: 1,079
    edited March 2013

    I took Lyrica for a couple of years.  It didn't make my LE any worse nor any better when I quit taking it.  Thinking of going back on it thanks to the lighting strikes that have been awful recently again.  I have been off about 9 months.  

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