GRRRRRRRRR I HATE LE..........
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Purple..I have been weening off the prednisone for quite some time..the first 2 I had I was put on 40-60mgs.on and off.it was uncontrollable so we the dr and I made up this slow weening process..I'm down to 8mgs.a day..why now the ras? I looked up the s/e aon there was nothing about rashes nor headaches.
I did all the right things yesterday and today I'm betta.
I do best with warm showers.
Why can't we figure this thing out...not only for me but we all seem confused over the connection of LE and the rash....
Is there a connection...I wish someone has the answer?or am I missing something?
Grannydukes0 -
Thanks Ladies.
Trust me. I have been keeping a VERY detailed journal. Seems to serve to confiuse things !
Yeah, I guess I have to stay out of the pool, but it meant so much to me, PLUS I just booked a summer vaca and the highlight was going to the pool.Thinking I might juust as well cancel. whine whine whine......
*EDITED TO ADD: The saga continues ! Just had LONG phone consult with derma dr. He says this type of ' rash' is called FLUSHING. He actually does not think it was cause by the pool chlorine (Although he cant rule it out ) because it was well resolved for 3 hrs. later. He thinks , rather , that the pool's cool water temporarirly helped the flushing which has to do with vasodilation/vasoconstriction. Makessome sense as a hot shower would make it more red.
He is thinking it might possibly be related to the LE though he admits he is clueless as to how/why. He just knows where i showed him the MLD was focused on before all this . I am also thinking back to the week prior to any of this ever began, I had a mammo and wonder if it coud have been a trigger, but I just cant imagine. He offered to send me to one of our nearby LE clinics ( NO NO...they cant even do MLD!) Then he did suggest I also call my endo dr and be checked for thyroid cancer (thank you ) etc etc ... nothing good at all.
This is starting to get scary and in the meantime, my LE is not getting treated at all.
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Purple I discovered a rash on my back that has stumped my Dr. too. It sounds like yours in many ways. It is bright pink when I am hot and a light pink-red color when I am cold. My neck swelling has not improved yet so my FP is sending me back to the oncologist. I had till Thursday to wonder what is going on. He still thinks the swelling is only in the tissue but thinks it is time to have it scanned just because of the big C.
I am frustrated tonight with all my issues thanks to the big C. Today I was sitting with my feet down because I had to go back out to school. My foot started throbbing because it was swelling. It got to the point it hurt to move my big toe so I had to take a look. Thanks to the neuropathy, I had gotten a splinter in my to and didn't realize it. I guess the swelling cause it to swell and it had gotten a pus sack. That's the scary part of neuropathy...now I sit and hope I don't get and infection thanks to the LE in the legs.
grrrrrr
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Kittydog, I wish I had a magic wand, but I don't and that's frustrating too, because you are putting up with too much at the moment. But I can send you some cyber brownies--I used Binney's recipe--so here they are, flying your way to fortify you with some chocolate-induced hopeful feelings.
Carol
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Me at this hr.decided to make a fish sauce...ill send some over to all who needs it.yummy...shrimp and scrod...maybe it will cure us all
I'm wearing a compression bra along with a tank bra on top of it...my swelling did go down...now how uncomfortable is that?and sleeping with the arm elevated.
When was the last time I told you how much I hate this damn disease?
Truly the gift that keeps on giving.grrrrrr0 -
Hi all, haven't posted in awhile but things have gone crazy.
If no better after the weekend will need to call LE nurse and get some massage. My hand is bad, round my elbow so swollen and the truncial lot is terrible. I am now all strapped up, best sleeve and glove on having done my massage. GGRRRR I am cross. This has happened since I had pnuemonia and was on prednisone.
Granny I am with you I hate this.
Big hugs - gentle ones to all who c ope with LE. Will be interesting at playgroup this morning as I bet I will get lots of questions wearing this glove.
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Thanks for the perspective check Mariasnow! I had my first bout of breast LE and cellulitis May 8. I've seen the LE specialist twice since then, been doing my exercises, MLD, wearing compression tank and swell spots. Today I told a friend I just want a day without being reminded of my BC. Well, I should be grateful for this day, reminders and all! I love how you and your siblings support each other! (My DH has MS) I'm also grateful for the support and advice i get from everyone here on BCO. ((Hugs)) to all!
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Hi Ladies,
I'm new to this thread. I have suspected Lymphedema for awhile now. I finished Chemo exactly 5 weeks ago today. After each treatment the swelling would get worse, my Oncologist attributed it to the Taxotere. However, it was only on my left side the side I had the nodes removed.
I went to my PS this week for another consult and he told me I have Lymphedema.. most of my swelling and soreness is on the left side, right next to where my left Breast would be. I have an appt with the Lymphedema Therapist on June 12th.. I had 22 nodes removed all negative!
Any advice would be appreciated.
Carla
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Aylson. I think they were mentioning this week on the thread that prednisone causes swelling, That could have tipped the boat.grrrrr
Carlads, Sorry you had to join such a swell group
Make sure your therpist is certified. Go to stepup-speakout.org which some girls here made the site and check for names of qualified therapists.
They really need to know what they are doing.That site is so helpful for us girls. It gives you the power back to control your LE. Do post any questions for us to help you.
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Think it could have 'helped' the LE Hugz and it does make me cross as I though I was reasonably in control of it. LE nurse is away until Tuesday - Maonday is a holiday here so hopefully she will get in touch next week and I can get some help with a few sessions of massage. It is my hand that is a real bother this time. I think wearing my glove is helping though.
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Here is the link for SUSO. Lots of good information. http://www.stepup-speakout.org/
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I had lymphedema therapy scheduled for tomorrow and I canceled it. I just seriously need a BREAK! I only have ONE treatment left. I decided to minimize any other appointments - even those that are good for me until I clear the hurdle of my last Herceptin. I just have battle fatigue and need some sanity!
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I just have battle fatigue and need some sanity!
MariaI can relate !
Sometimes we all just need to take a breather now and then. Life just isn't 'the normal' that it used to be. If a break will help to pick us back up again and dust off, then so be it .Btw, I saw something in one of your other posts about sleeves and fashion.
Have you ever looked into lymphedivas sleeves? www.lymphedivas.com
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How coud prednisone cause the LE?
Can someone explain it it me?
That is supposed to be a cure all for everything.Or so I thought.
Every ache and pain was gone when I was on the high dose...I'm down to 6mgs a day for another week is that why?
I'm confused with the connection.
My LE was under control for quite some time..0 -
Prednisone is one of those drugs that can cause pretty much anything, they use it to help with swelling, but it can cause swelling, they use it to help with allergic reactions, but it can cause allergic reactions, it can make you eat more, or it can make you eat less, it can make your really agitated or euphoric, shall I go on. But I do know that when I was on steroids during chemo they said that swelling was one of the more common side effects, so.... there you go. I think it's really strange that it helps with inflammation, but can cause swelling
they must have different factors involved.0 -
Thank you Linda...I'm so glad I am almost finished with the weening of the prednisone...I'm LE is not more under control only because I upped my exercises,meditation,water,breathing and wearing my compression bra 24/7.I was put on the drug for this horror of a rash that sent me to the emergency room twice...it's still itchy but I can live with that.Not the LE.
thank you for the explanation.
Hugggs grannydukes0 -
Pred reduces inflammation yes, but it also can cause increased thirst and and water retention, edema. (As well as increased urination.)
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Thanks everyone...i have it all....better get off that pred.ASAP...just 1 more week of weening...
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A rant:
No need torespond but I'm frustrated and need to vent.
I took a dramatic leap in my diet at the beginning of the year. Like many of you, I've done a lot of research on diet and saw over time that my LE was dramatically affected by what I ate. I've experimented a lot in my diet and have learned what causes an inflammatory response when I eat it. At the first of the year (finally prompted by my periodontist) I decided to go completely gluten free, cut all dairy out of my diet except eggs, and all refined sugar. Within three days, the lesions on my gums that my periodontist was worried about completely went away!!
As a bonus, my poochy little belly went away and I dropped 2 pant sizes. I've always been thin but as a side effect of treatment and not being able to exercise like before, I had gained weight. Well, I've lost that weight and have a flatter tummy than I've had in 15 years.
My grrrrrr is this: I've had people take me aside and ask me if I'm anorexic or bulemic and they are quite serious. I'm not! I'm just eating clean and healthy. Today I was invited over to eat with some folks from church and I cringed. They were putting butter in everything and I knew I was going to have to eat it or it would feed speculation that I have some eating disorder. And .... Guess what? I'm super swollen, my arm is all achey .... And I was totally fine before. It had to be what I ate ... Nothing else was different.
Eating clean has made a huge effect in the management of my LE. For me, dairy is a huge flare ... I'm not sure why but it makes a difference and it causes some weird side effect on my gums too ... Strange, I know, but it does.
I wish people would leave me alone, would understand that it isn't worth eating the stuff that causes me pain. I'm thin but by no means sickly.
Ugh. Feel extremely frustrated and want people to quit bugging me that I've gone off the deep end on eating. Leave.me.alone. Thanks for getting it.
Grrrrrrrrrrrrrrrrrrrr0 -
Thanks for getting it.
And we DO get it, Dawne ! From now on, maybe you should just tell ppl. you are on a special diet according to DRS ORDERS and if anyone asks why say: " Medical reasons".
I'm sure someone else will come up with a better idea, but I know you werent actually looking for one. Just know, we understand, and I feel your frustration and anger !
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Wow Dawned, that is remarkable. ! BE
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People who take you aside and ask you something so personal are rude. Perhaps some are concerned but I suspect many are rude and nosey. What they are asking you doesn't even rate a reply but when you feel no choice but to eat what's in front of you simply say my Dr. has recommended I don't eat certain things for my good health. Or, I ate just before I came as I anticipated there would be things my Dr. insists I stay away from. Appeasing others is NOT worth the price you have to pay. Quite frankly, it's none of their business. Do you ask people why they are so fat?
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Dawne-Hope - That is great that you figured out about the clean eating. Would you be be willing to start a new thread, I would be interested in knowing how this clean eating works.
Thanks and good luck.
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Get used to it Dawne - and it's a sign of good things. I've been a thin athlete my entire life. I don't have an eating disorder - I'm a competition runner who keeps a normal healthy weight. It just happens to be that as a runner, I am thinner than most. I also have always made very healthy food choices to support my athletic goals. For the past oh...25 years...at least once a week someone with less healthy habits comments on mine and most of the time they somehow make it negative. I just focus on the people who say I look great or who look to me for inspiration in their own desire to be fit. Me getting cancer also made all the unhealthy people justify their unhealthy habits that make them overweight. They all started telling me all my years of dedication weren't worth it. My doctors tell me my immunity and health level kept a very aggressive Her 2+ grade 3 cancer at bay. I prefer to look at it that way! Oh yeah - I'm an executive and I love my job. People like to categorize me as a workaholic and even tell me my employer takes advantage of me - neither of which are remotely true! Rock that new smaller body!!!
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purple - I hadn't stopped to think about it until after I wrote what I wrote above and was fading off to sleep but you're right, it is for medical reasons. My Perio has been telling me for three years that an allergy to something was affecting my gums. I had bigger fish to fry, so to speak, over the last three years so I let it go. When I finally dropped things out of my diet to see what happened, the culprit seems to be dairy ... so yeah ... I'm doing it for medical reasons.
That's a good response, thank you.Marple - The nosiness and controlling nature of others never ceases to amaze me.
And yes, I have often thought of asking that question. GuyGirl - I will consider it but I am nervous to do so. I spent a lot of time on the health and diet threads after I was diagnosed and wow ... there are outspoken people on every board but some of the health food militants over there scared me. I am afraid of gettiing blasted if I do so. As we know with our lymphedema, it is so personal ... and the same is true to some extent with our diet. What affects and helps me isn't necessarily going to help someone else. But I will think about it.
The short of it is ... cut out salt, eat organic meat when you can, eat more fresh veggies (organic if you can)...and stay away from soda and refined sugars. The things that cause me to flare the most are salt, foods with nitrates, and sugar (and strangely and I think this is only me ... dairy products).
Mariasnow - Thank you!
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Dawne, Way to go. Yes I was on a diet for 2 years similar to yours and I never felt better in my life. I have slowly moved back to the diet but sucumb to food traps often. Still I have improved. Glute/wheat products is the devil forsure for me.
The best response to people commenting on your weight is. "Doctors orders and I feel so much better. Sorry the butter, etc. will make me sick." Then flip the conversation to them. "How are you doing with food choices" Either they will become selfcentered and start talking about themselves forgetting about your diet or they will change the subject. You could try to change the subject too.
Marieanna, You are an inspriation to us. Keep it coming!
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If dairy is a no for you then yes the butter on the food would make you flare. Just because you have cut salt intake out and dairy. Most butter comes salted. Thanks for the reminder. I have been eating it on fresh corn. Going to change and see if it helps. All the other are triggers for me to and I love sausage. I have it on rare occasions now.
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I think my salty deli salad caused me to feel extra bulgy at the back of the pit yesterday. We are what we eat for sure.
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Yes we are. I guess I will be a MT. Dew bottle. lol I have yet to cut it out. It's my addiction like some are to coffee. I was good today and bought water.
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I wonder if raw dairy products would have the same effect?
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