Prednisone lowering lymphedema swelling

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cjain
cjain Member Posts: 15
edited April 2016 in Lymphedema

Last week I went in to see the doctor for swelling around my eyes.  The "puffiness" wouldn't go away so I asked the doctor for a prednisone prescription. I work with kindergarteners and looked rather terrifying.  Fast forward one week and my biggest surprise is that the swelling in my arm and hand have been reduced.  I'm seeing knuckles that I haven't seen In a long time!  Wow, does it feel and look so much better.  Has anyone ever been prescribed steroid with similar results?  Wish I had known about this when I had one of my earlier flare ups. 

Now, if I could only figure out what is causing the facial swelling,  It seems to be returning.

Comments

  • LymphActivist
    LymphActivist Member Posts: 64
    edited September 2014

    Prednisone is an anti-inflammatory. Lymphedema involves inflammation. So it is not surprising that it helps your lymphedema. But long-term use of steroids has a number of potentially serious side effects, and should be avoided. What were you doing to manage your lymphedema before you took this steroid? Were you doing manual lymph drainage? Were you wearing compression? Were you doing decongesting exercises? These are safer measures that do not have side effects.

  • Marple
    Marple Member Posts: 19,143
    edited September 2014

    Why would you ask for pred for eye puffiness?  Do you have other issues?  It seems strange to me to be given a px for pred for 'puffiness'.

  • vlnrph
    vlnrph Member Posts: 1,632
    edited September 2014

    Agree with LA above: prednisone feels like a "miracle" drug but can also turn you into a diabetic and weaken your bones, along with other nasty effects, so must be employed carefully.

    Assuming you had a short burst & taper prescription, used in cases of suspected allergies. Depending on where you live, pollen levels can be very high right now until the first hard frost at which point you may see some relief. Do OTC antihistamines help?

    On the other hand (so to speak), facial swelling can also be a sign of angioedema and should not be ignored. This condition might result from new medication sensitivity or have even more obscure causes. Go back to your doctor for further evaluation or get a referral to a specialist. 

    I'm not sure what to think about an MD who would order a potent steroid upon patient request unless it was for a person known to have frequent bouts of severe asthma, etc.  

  • cjain
    cjain Member Posts: 15
    edited September 2014


    I have a history of facial hives that have lead to swollen lips and tongue in the past.  After several days of facial swelling that had gotten progressively worse, I went to the doctor.  My light tone is in no way reflective of a light or casual attitude toward medicine.  That said, I had no idea that the prescription would lead to alleviating symptoms of lymphedema and thought others on this site would be interested or have some insight.

  • proudtospin
    proudtospin Member Posts: 5,972
    edited September 2014

    prednisone is both nasty and a miracle

    I have been battling sinus issues the last year, while on Pred, all is fine, but symptoms return as soon as it is ended

    I recently was told I need a round of pred for a repeated sinus polyp thing, I complain my head off when ever they want me to the dand thing....nasty and scary stuff

  • Binney4
    Binney4 Member Posts: 8,609
    edited September 2014

    cjain, thanks for posting--interesting! We have had others report this response, and also with benadryl. Lymphedema is an inflammatory condition, so it makes sense. Too bad we can't use it on a regular basis! At any rate, do enjoy this unexpected (and for once, beneficial!) side effect. And get well soon!

    Gentle hugs,
    Binney

  • cjain
    cjain Member Posts: 15
    edited September 2014
  • floaton
    floaton Member Posts: 181
    edited September 2014

    cjain, I do think this is interesting as it's not obvious that lymphedema is characterized by so much inflammation. I've found a couple of times when I try to go off my melatonin (also thought to have some anti-inflammatory effects as well as aiding sleep), that my arm swells.  I can't prove it's exactly what's going on, could be coincidence, but it goes back down when I start taking it again so for now I'm not messing with it!!!  So while I haven't had exactly the same experience, I'm not surprised this helped.  Hopefully it won't rebound once you're off your course!  And hope you're feeling better soon - that facial swelling sure sounds uncomfortable :(

  • Marple
    Marple Member Posts: 19,143
    edited September 2014

    Cjain, thank you for filling in the details.  Here's to healing and maybe a lasting effect of the pred for your LE.  This is a good topic.

  • vlnrph
    vlnrph Member Posts: 1,632
    edited September 2014

    Sorry to cjain if I sounded scolding (had to be a little stern with a few patients over the years when I used to dispense the stuff!) I do hope you're getting better and resolve the swelling soon. 

    On that theme, wouldn't it be great if some version of these meds would safely work for us, even for a brief interval, and provide hope for a permanent cure. They could be formulated into a rich dark chocolate and provide antioxidant benefits as well...

  • Binney4
    Binney4 Member Posts: 8,609
    edited September 2014

    Dr. Stan Rockson at Stanford has done studies of an anti-inflammatory as LE treatment. For a while he was ecstatic because it seemed to be working and he was noting no side effects from long-term use. But in the end (maybe predictably!) he apparently quit the experiments and dropped the subject entirely. So, maybe not a direction worth pursuing. 

    Rich dark chocolate, on the other hand, cures a multitude of ills, and all the side effects are beneficial!

    Yum!
    Binney

  • glennie19
    glennie19 Member Posts: 6,398
    edited September 2014


    vinrph:  "dispense the stuff"    rph,, are you are pharmacist??  was wondering that,,  I am Rph. 

    Binney,, everything is better with chocolate. Totally agree with your statement.

  • vlnrph
    vlnrph Member Posts: 1,632
    edited September 2014

    Yes glennie, perhaps my screen name is too revealing! I went back to a part-time job for 18 months post chemo, then quit that a year & a half ago. Don't really miss it too much...

  • carol57
    carol57 Member Posts: 3,567
    edited September 2014

    I just want to pipe up and say how much I appreciate it when forum members share their professional expertise here. We've had MDs, nurses, pharmacists, PTs, OTs and even the occasional CLT give insights and perspectives in the few years I've been seeking LE help here. No one is practicing medicine over the Internet, just helping with information where and when needed.  And then there are the amazingly self-educated on LE, which includes lots of women here.  I feel so fortunate that I stumbled in when I thought I was going crazy and was searching for answers.

  • glennie19
    glennie19 Member Posts: 6,398
    edited September 2014

    hahaha, vinrph,, it's probably not that obvious to those outside the profession,, but rph catches my eye!

    I work from home,, have been doing so for the last 3 years,,, doing order entry and order verification. It's has been great for me, especially after my diagnosis. I don't believe I could have handled the stress of the hospital with treatment and dealing with all the LE, etc. 

    Carol, thank you for your kind words,,, can't say I've been helpful in the LE world here,, you all have been extremely helpful to me!! Paving the path for those with LE that have followed you.

  • carol57
    carol57 Member Posts: 3,567
    edited September 2014

    We sure do need each other!

  • Marple
    Marple Member Posts: 19,143
    edited September 2014

    Ain't that the truth!!!!

  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited October 2014

    I am the opposite. My LE flares up while on Prednisone. Here is what I posted on Sept. 26, 2013.(https://community.breastcancer.org/forum/64/topic/811729?page=1#idx_2)

    On July 31st, I had a mass removed from my lung from hypersensitivity pneumonitis.

    After it was removed, the pulmonologist put me on high dose, long term Prednisone.

    I started in August on 60 mg prednisone a day for two weeks. After that, every 4th day I have been decreasing by 5 mg. I end the prednisione in October.

    I have noticed that my LE in my arms seems to be acting up worse. I have been more actively using my arms for things (after 6 weeks of not doing as much because of lung surgery recovery).

    I know that Prednisone can cause fluid retention ( I can tell my face is swelling. It is literally round now.) and that extra fluid can be bad for LE.

    I really don't have anyone competent enough around here to ask, so I thought maybe someone on here would know?

    Thanks

    NOTE: I was on High dose Prednisone from August 2013-October 2013, then again from December 2013-April 2014.

    Now it's October 29, 2014 and I have been on 40 mg Prednisone daily for over a week now, and I can tell my LE is worse again.

    Kira had responded to my 2013 post with this,"Cinnamon, prednisone, especially at high doses, can definitely cause swelling--like the "moon face" you're noticing. It does reduce inflammation, but has a ton of side effects.

    I think when you finish the wean, your LE will settle down.

    Check out "Cushing's Syndrome" as that is what high dose prednisone does to your system."

    Cjain, I am interested to know how many mg of Prednisone you started out on per day?

  • JohnJoebee
    JohnJoebee Member Posts: 1
    edited December 2015

    I find the prednisone works great to reduce swelling from lympedema. The VA hospital is weary about my long term use . I am on a maintenance dose of ten mg . I take as much as 40 mg during flare ups and I  am worried about possible side effects but misery makes me change my mind. 

    I have a couple auto immune conditions that are confusing to diagnose . The one fact I know for sure is prednisone provides swelling relief that no other drug or herb can match Therefore I do not need more pain pills for gout flare ups and muscle spasms . 

    I know for a fact the worse thing I can do is to stop all activity due to pain allowing atrophy to get worse as well as edema becoming ugly . I use the drugs to get my butt moving and will continue to do so as long as I can still walk. Lymphedema , arthritis and multiple auto immune disorder is no laughing matter but I realize some auto immune conditions are more deadly . The prednisone keeps it from spreading to my organs . Yes prednisone is a miracle drug that could blow up in my face .I am willing to risk it for Quality of Life reasons . 

    I wish everyone taking a risk with prednisone to have the best outcome . After all a genius won A Nobel prize for steroids . Because they can benefit us if we are willing to take the risk of liver damage .I am in my last chapter of life. I will be thrilled for ten more years and want those years to be as good as WE can make them . The WE being me and my doctor .

    Oh I find that cannabis helps before bedtime with nerve pain and anxiety about my condition .I use less prednisone with cannabis they compliment each other . The same with pain pills . High CBD Cannabis concentrates in the oil form have less THC that give you a buzz but more CBDs that heal. 


  • JanLigarde
    JanLigarde Member Posts: 1
    edited April 2016

    what do you mean Lymphedema is not characterized by swelling? Google it

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