Cellulitis epidemic got me too

Katarina

I was admitted to the hospital every time for vancomysin and zyosin IV antibiotics. Out of the hospital though I found augmentum first then clindamycin and Bactrim to work at keeping it clear for weeks following. 

I just went to a Lymphedema specialist and received a massage and learned that not wearing constricting clothes will ease the lymph drainage and not build up so to invite bacteria, which then causes the cellulitis. She recommended wearing compression camisoles to help but not underwire or tight, constricting bras.   

I really believe it's radiation and lymphatic fluid risk factors that play the biggest part and then if you have any cuts or open wounds your creating the perfect storm for cellulitis. I massage around my surgical areas and keep hypervigilant on clean hands. I don't know that any cure has ever been identified, just precautions. Prophylactic antibiotics help too.

Hugs 

purple32

Jo-5

I would not say my breast is swollen. It has a small area that got pinkish 3 weeks after LX and has stayed that way ever since.

It's not just that though. That area ( under the nipple , but not in the fold ) seems a bit " lumpy bumpy' or like a stretch mark is there or ??? DIFEFERENT looking in some way .  The pink does not itch at all , is not rashy etc ... If i never undressed , I wouldnt even know it was there !  :>)  Bear in mind, my mass was at 11'0clock position and my incision was on the top of the areola. I canot see where this area was really touched by the surgery- would be the last place I might expect an issue. It is not IN the fold, but on the bottom half of the breast.

(Does this "different looking texture" sound typical of LE?) 
It all looked aok right after the LX. This began 3 weeks out and has been there for 3 mos. now,  and I have to believe it will always be like this .

I had on a 'supportive' bra- possibly a little tight, and I added a small icepack inside and fell asleep with it. When I woke , the area seemed a tad " bumpy" and pinks. Of coutrse, I thought it would be gone in an hr. HA!

I swear I caused this, and I think that is bugging me more than anything else .

Cindyl

My le therapist frequently mentions pink patches she sees on my back and arms... claims they are "classic" she says they aren't infected just an indication that some fluid is pooled there.

purple32

Jo5

I dont know what to make of it though.  Are you saying you think it sounds like LE then ? It is not swollen and I have not had rads and I dont think that is where any scar tissue should be !  I can actually ignore it because it is not disfiguring ... as long as I can label it. I guess THAT is my issue !

THX

purple32

Hi Jo

No ...no tests. I am scheduled for my 6 mos follow up  DIAG. mammo in OCT. and at this point, I'm just little concerned about having that area ' squished ' now !

THX for all your replies- I appreciate it.

purple32

never goes completely away.

Of course not ...BC , the gift that keeps on  giving!

Katarina

I'm on Clindamycin and Bactrim. Will be on this for at least 21 days. It's easier on me than Augmentum but I still have fatigue. Keflax never worked for me.

I know we can build up resistance to antibiotics in a short time --- IV or pill form. So we take them but really don't know if they're working other than symptoms that "we" are more likely to catch.

I say "get to the hospital" ER whenever you have swollen, red and tender skin areas. 

Also, be your own advocate with your doctor on what is working and what is not. They're so busy they can't remember how long you've been using the same antibiotics. It's like exercise, you need to throw in variety and outmanuever the body's adjustment and resistance to antibiotics. 

Hugs

GmaFoley

Ok Ladies, One more for the group....Ended up going into urgent care.. started out being a insect bite on my lymphedema side and turned into a skin infection/Cellulitis - Looks like we caught it in time... I'm allergic to multilple antibiotics but the doc thought MAYBE Keflex would work... It has grown from pea size this morning to 2 x 3 inches....Thank you Lord for not making me too stubborn to listen to some great ladies that said Go Now!

Anonymous

So sorry to hear this, Gma, but glad you went to urgent care. Take it easy and feel better soon.

Katarina

GMAfoley - good that you took care of it fast. It just progresses. It also seems to weaken your skin area and immunities. I've had many cellulitis attacks and now my incisions won't completely close and heal. I think they've weakened that area so much. Just my gut. I don't regret getting to urgent care asap in all these instances.

I don't have an infection now but oozing and have an open wound the size of a pencil head. Yikes.

Hugs,

Kat

GmaFoley

Jo - I was just wondering about that - no fever, rash is within the lines still, but I now have glands in my neck that hurt and a sore throat - Also a weird burning sensation on my neck and chest, but as I said, you can't see red or rash... Is the antibiotic doing that... I am really starting to feel like crap....

Alyjens

Hi all! Haven't been on this forum for quite a while, but it was a real lifesaver to me when I was first diagnosed with lymphedema about eight weeks after my mastectomy. I'm back again because I have a question about the advice I'm getting since developing cellulitis for the first time.



First of all, thank God for what I learned from this forum when I was first diagnosed, about watching for cellulitis. It was always stressed that it can be very fast-moving, and to get help immediately for it. But wow! My experience was that it's like a wildfire. I fell asleep in my recliner, about 11 PM a week ago Friday, and woke up two hours later because of the pain in my arm. I took off my compression sleeve, and noticed parts of my arm were more swollen and the whole thing hurt. There was no redness so I thought maybe it was the way I fell asleep and that my compression sleeve restricted it too much. So I did some MLD on it (which in retrospect was the worst thing to do). At 1:30 AM, I started with chills and noticed a few red dots on my lower arm and parts of my arm were warm to the touch. I took my temperature it was only 98.6 so I wasn't too worried. Well, by 2:30 my whole arm from wrist to shoulder was bright red and on fire, my temperature was over 100 and I knew I was going to be going to the ER. I took a shower, quickly packed some things that I thought I would need and woke my DH up to take me. By now, my temperature was up to over 101 and I was feeling very sick and dizzy.

I was admitted and was in the hospital for five days on Daptomycin and another IV antibiotic which I can't remember. I was discharged and told to take doxycycline for three weeks. My internist and my ID doctor were not sure how to handle going back to wearing my compression sleeve and glove or doing MLD.



The whole time I was in, I kept asking if they could have my lymphedema therapist (who works in the same hospital) come to see me so I could find out how to handle my LE post cellulitis. And get this, she couldn't come, because my insurance will not cover an inpatient visit from her, only an outpatient visit! Trouble is, their department is so busy that there is a 3 to 4 week wait for an appointment.

I called and spoke to one of the lymphedema therapists on the advice of my doctor and she told me that I could not wear my compression sleeve or do MLD until the antibiotic was finished, even though that was three weeks away. I told her that by then my arm would be really swollen and tender. She said it didn't matter, that all I could do is to try and keep my arm elevated and not use it for three weeks. Huh!!! I need to work and was planning an 80th surprise party for my mom which is next Sunday!



So, I came back to see if there were any guidelines and checked out

http://www.stepup-speakout.org/Emergencies_and_Medical_Care_lymphedema.htm



Seems as if the advice I received may not be correct. So, what should I do? Ignore what the lymphedema therapist said and resume my LE protocol? I'm scared to death of damaging my arm further with negligence and developing fibrosis. I honestly don't know if my sleeves will be too tight now since my arm is so swollen. Should I use an older more stretched out sleeve until I can in for treatment to reduce it? I have Tubigrip, which I used to use at night with finger wrapping- is this the route I should take?



The kicker is, that my regular LT is no longer with the dept since she went part time after having her baby(and I loved her!). There is only one other LT in the department who is listed on the NLN site as certified. Any input would be appreciated.

kira66715

The rule of thumb is no MLD/compression until the antibiotics start to kick in: you can definitely start them before you finish the protracted course of doxycycline.

The concern is that you move infected fluid, but that's now being questioned. And compression could restrict the antibiotic from getting to the infected area. 

But now, you can start MLD and compression--on the gentle side. 

Cellulitis injures the lymphatics, so people end up having a harder time controlling their LE after cellulitis. And you sure don't want that fluid to sit there and set you up for more infections.

The NLN site will list a well trained therapist if they pay for it, on the therapist locator site, you can find graduates of schools where therapists get 135 hours of training.

Ironically, the every two year NLN conference starts this week, so many therapists may be in Dallas for this week.

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Maybe your first therapist has moved to another clinic or opened her own practice?

I vote for resume your LE protocol, and find someone who will start to treat you.

Kira

purple32

Nicks under arm

Hi all

I hope I can cut in here. Still unsure as to what this ' marked' / subtle different area is under breast, but anyway, I was shaving with elec razor this am and all seemed fine.

I just went in to out deo, on and noticed two " pimply marks' where I must have gotten nicked. OUCH!  Should I be concermed ?
I am not sure if I have LE  or not.

My DR is a few hrs away and if this is  a nick that can be ignored, fine.  I really dont want to be an alarmist, ESP since I may not have LE.  I had 2 nodes removed SNB, btw.

 BUT ...well, what are the signs to watch for ?

THX Ladies.

purple32

"  I would wash and rinse it well - put a bit of antibiotic cream on it."

Thanks, JO.
That is PRECISELY what I did . I guess common sense prevails.,

Thank you for responding.  I appreciate your time.

Yes, I no longer trust this cheap elec. razor.  Think I will stick to SHARPER disp. ,. do my legs first and look at results...then go with the arms (?)  We'll see.

Thank you !

Alyjens

Thanks Kira & Jo,



I think I will start some gentle MLD tomorrow when I go back to work and after my dr. appt. My arm is really swelling even with elevation and starting to ache. My sleeves probably wouldn't even fit at this point.



May I ask how long your course of antibiotics was? I was on 2 IV's x5 days and now oral for 3 wks.

kira66715

Alyjens, I luckily had a mild case, and took oral antibiotics for 10 days. Jo has had more episodes.

I was at a lecture recently where they questioned the science behind not treating the LE with cellulitis. I really don't think it's been studied.

Initially, you don't want to move infected fluid, and you want the antibiotics to get into the area, but later, you are dealing with a swollen arm--so it has stagnant fluid--and you sure want that high protein fluid out of there. But gently.

I'm so sorry this happened--I found it terrified me, and made me feel so vulnerable.

I'll look at pubmed to see if anyone has really studied this, or it's just clinical dogma

Kira

kira66715

Well, I searched pubmed, and could not find a single article that said that LE should not be treated during episodes of cellulitis. A google search produced references, but none were studies.

So, it's clinical practice, but it's not supported by scientific evidence.

And the articles did show the lymphatic damage caused by cellulitis.

However, I looked it up in the International Best Practices Guideline and found:

Commence antibiotics as soon as possible (Table 4), taking into account swab results and bacterial sensitivities when appropriate

During bed rest, elevate the limb, administer appropriate analgesia (eg paracetamol or NSAID), and increase fluid intake

Avoid SLD (self MLD) and MLD (by therapist)

If tolerated, continue compression at a reduced level or switch from compression garments to reduced pressure MLLB (multilayered bandaging)

Avoid long periods without compression Recommence usual compression and levels of activity once pain and inflammation are sufficiently reduced for the patient to tolerate

Educate patient/carer - symptoms, when to seek medical attention, risk factors, antibiotics 'in case', prophylaxis if indicated 

 Another page:

Contraindications to MLD and SLD
General contraindications
■ Acutecellulitis/erysipelas

So, this is the best scientific advice/evidence we seem to have: avoid MLD in the acute phase, but resume light compression ASAP, and MLD can be resumed when the acute phase of infection is over.

Kira

ohio4me

Thanks, Kira - this info is going in my "All things LE" doc I keep as a reference.

I'm really glad I can access all my internet resources from anywhere.

Alyjens

Kira, so good of you to go to the trouble of looking all that up for me. You're right, I am feeling very vulnerable. I was really starting to feel acceptance & in control of my LE, but now feeling kind of scared and unsure like I did when first dx'd with it. I'm going to bring this info to my dr appt. tomorrow. Thanks again!

kira66715

No problem: it is an important question--I wanted you to know how to access the huge and very informative International Best Practices Guideline--it's on the web in a lot of places, on SUSO, it's on the right hand side of the home page, under International Concensus

I found the information I posted on pages 24-25

http://www.stepup-speakout.org/

It's kind of too much to take in at once, but it's an amazing reference for lymphedema management. Good pdf to download and copy a page or two if needed--it's huge.

Alyjens--I know exactly what you mean, I never, ever thought I'd get cellulitis (magical thinking is not just for toddlers...), and it really scared/scares me.

Kira

Binney4

Purple, no, very gently do your armpits first. You want it to be as clean as possible in case you do nick yourself. Some women here put their razors in the dishwasher on the hot (sterilize) cycle before reusing.

Alyjens, I'm so sorry! Definitely look around and see who else might be around for therapy. If there's a waiting list be sure to explain that you're just coming out of a serious cellulitis bout and can't wait 3-4 weeks. If they still won't see you quickly ask them to put you at the top of the list and call if there's a cancellation. Get well quick!

Hugs,
Binney 

kira66715

Purple, the feeling was that I got my cellulitis from shaving--ironically while taking a LE therapy class, and had a rash. I'm really cautious now.

Kira

purple32

THX for the many replies ... I may just go without shaving!  :>)

proudtospin

not sure when but the hair on my underarms and my legs has disappeared so  no more shaving,

problem is that my facial hair has grown again after being dormat for years~

proudtospin

Jo--the really stinkie part is that I used to go to a wiz of an electrolysis lady who was great at killing the facial hair, but.....she retired!  can not find her any more but she got rid of mine years ago and only now reappearing~

purple32

LOL ....Okay Jo-5, I'll keep that in mind. 

purple32

hahahhahaha.

Got that right, Jo!  I hear you.

proudtospin

hmmmm, thinking twizzing hairs may be a future job for me in retirement....we are all getting older and more..hairy

something to thing on

purple32

LOL Jo----you crack me up  :>)