Hi i was officially told i had lymphodema today in my trunk and possibly upper arm. Its not very bad at all but as i have had several wound infections and a bad case of cellulitus in december the nurse said shes thinking of putting me on a years ‘prophalacyic antibiotics’ a small dose every day to ward off infection.
I have really mixed feelings about this. I HATE the constant niggling worry every time i feel a bit achy or have a temp that it might be infection again and as im going back to work in a few weeks in a primary school i will undoubtedly have more symptoms due to their pesky germs etc. BUT surely, even at a small dose it cant be good for my body to have antibiotics for a year? and what about after that?
Fantastic to find someone else out there with lymph on trunk! I’m going to the hosp today to see my bc surgeon who will hopefully diagnose it officially, having been batted bak there by Dermatology consultants who say that’s what it is. As it started back in July after an attack of cellulitis, I’m anxious for a definite dx so that I can start managing it.
Do you mind me asking where and how you are affected on your trunk? As far as I know I don’t have an arm problem myself.
Re ABs, I don’t think I’d care for taking them constantly over a year - it seems a bit pointless, surely it would be better for you to be given some to keep “in” that you could start on straight away if you feel you might be having a flare up.
I’ve got lymphoedema in both arms, but to date I’ve never had cellulitis. I’ve been given some antibiotics to keep at home ‘just in case’.
However, from what I’ve heard, and read generally, cellulitis is the pits and the complications can be life threatening.
I have a friend who has taken antibiotics for years in this way. It seems to be the lesser of two evils and I suppose the antibiotics help to prop up an immune system made defective by the lymphoedema.
The LSN (Lymphoedema Support Network) website (lymphoedema.org/lsn) has a copy of the BLS concensus document on cellulitis. This extract may be of interest:
'1.4. Antibiotics “in case”
1.4.1. The risk of further attacks of cellulitis in lymphoedema is high. It is recommended that patients who have had an attack of cellulitis should carry a two week supply of antibiotics with them particularly when away from home for any length of time, e.g. on holiday. Amoxicillin 500mg tds is recommended or, for those allergic to penicillin, clindamycin 300mg 6-hourly. Antibiotics should be started immediately familiar symptoms of cellulitis start but a medical opinion should be sought as soon as
possible.
RECURRENT CELLULITIS
2.1. Antibiotic prophylaxis should be offered to patients who have two or more attacks of cellulitis per year. Penicillin V 500mg daily (1g if weight >75kg) should be the first choice. The dose may be reduced to 250mg daily after one year of successful prophylaxis. Prophylaxis may need to be life-long if relapse occurs when antibiotics are discontinued after a two year period of successful prophylaxis. For those allergic to penicillin, erythromycin 250mg daily is recommended; if this is not tolerated then clarithromycin 250mg daily is an alternative.
2.2. There is evidence that decongestive lymphatic therapy reduces the frequency of attacks. Control of the swelling is therefore important. Patients undergoing intensive DLT and known to have suffered cellulitis in the past may benefit from antibiotic cover in case cellulitis is provoked. Oral penicillin V 500mg daily is recommended during the period of the intensive treatment. For those allergic to penicillin, erythromycin is advised (as in 2.1).’
Also, the lymphoedema website ‘stepup-speakout’, (add dot org) has a very good section on breast/trunk lymphoedema.
Bahons, thanks for the info. I have only had one episode of cellulitus so far so the yearly dose still seems a little OTT. The probs with keeping a set of antibiotics handy just in case is knowing when to take them.
When i had cellulitus I had fluey type symptoms for 5 days before i got any other symptoms. High temp, shivers general feeling crap. By the time the redness and inflammation appeared the infection had really taken hold and it 11 days of IV drugs and another week of oral antibiotics to get rid of it.
That means that every time i feel a bit achy and unwell i have no idea if its infection or a just a bug! How do you know when to take your antibiotics?
GandT My swellings are on my side where the bra strap goes and below it. I dont know if that is technically breast lyphodema or not, i guess it makes no difference! The major probs i had was wearing bras. Every single one i bought, even the specialist fitted post surgery ones, would cause a deep groove on my left side with big sausages of bulge on either side of the strap. I knew this wasnt right but my surgeon just said it would ‘go away’. Thank the lord for lymphadema specialists!
Hi Louise, mine is exactly where the top and bottom bands of my bra goes (not the strap area though) also down my back and side in horizontal stripes to my waistline and I have a large blotch on my abdomen which goes down to my waistline. This is all on the mastectomy side only.
Got nowhere today unfortunately as he wants to do more tests first, not being very happy with the mini boob I still have (which he thought would go down itself)
Louise, sorry, I’m not much help with the ‘when do you take them?’ question, as I’ve never needed to. I took a prophylactic course once, given to me by my GP after my two new Medi sleeves sliced the skin clean off my elbows. My private lymphoedema therapist (who sent me to my GP) suggested I should also ask for some to carry with me when when I travel. But touch wood, so far, I’ve not needed them.
I have a ‘little lymphoedema bible’, which I was given when being treated in Australia a few years ago, and it is a mine of information…
…about cellulitis, it says, among other things. ‘Early and rapid treatment is essential’ and that ‘antibiotic therapy is given if infection is detected or suspected’. So I suppose the answer would be to start them if you think you may be getting cellulitis again and then get a proper medical opinion as quickly as possible. And so if you’d had them to hand before, you’d have started them at the ‘fluey’ stage…?
Both, when you do get to a lymphoedema nurse/clinic, it might be worth asking about compression tops and/or kinesio taping as well as massage techniques. It’s horrible being so uncomfortable, isn’t it?
I read your post on dr mortimer. It agreed with what my lymphadema nurse said that once you’ve had a serious infection it never goes away completely. I saw the consultant surgeon today who absolutley vetoed the year of antibiotics as she said there was virtually no chance of me ever getting cellulitus agin. Dont you just love the mixed messages we get from health proffessionals!
Can i ask how many times you had cellulitus before they put you on daily antibiotics? Also how do you know when you have it? Do you wait for the physical redness and swelling or can you tell before? I’m a little obbsessed at the mo with how to know if itr comes back.
The surgeon today said to stop fussing. “Its trivial. If it comes back it will only mean another bout of iv drugs” Now i know its not life threatening, but 11 days of hospital bound fever and iv drugs followed by several weeks of feeling weak and horrendous thrush from all the antibiotics is hardly what i call ‘trivial’!
Sorry about my ranting i just HATE the way that the top bods dont want to know once the cancer is gone. Any follow up problems are seemingly of little importance to them.
Rants welcome! Perhaps we should make them compulsory down Lymphoedema Lane???
For what it’s worth, I think you’ve got yourself a good lymphoedema nurse and a surgeon who ought to stick to what she’s good at (and paid for), namely surgery and refrain from commenting on something outwith her specialism.
I gave up years ago expecting any expertise or empathy from either surgeons or oncologists on lymphoedema issues. (From what others have written I’m sure there are exceptions out there, it’s just that I’ve never come across one). I’ve therefore decided that, much in the same way I wouldn’t consult my car mechanic about a leaking tap, I’m not going to ask for, or take as gospel, any ‘advice’ about lymphoedema from a surgeon or oncologist should they offer it, as it has always turned out to be complete and utter rubbish. There are fully trained medical professionals (such as lymphoedema nurses) who specialise in treating it. Doctors only specialise in causing it.
I think your surgeon’s attitude is cavalier and supercilious. Complications from cellulitis CAN be life-threatening, altho’ I think these cases are rare. Oh, if only they could be made to experience just once what their patients go through.
You had a really rough time with the cellulitis, lou; she should be bending over backwards to help you not to be so ill again, not obstructing your access to a treatment that may keep you feeling well.
I completely agree with Bahons. I think your surgeon’s remarks were made out of ignorance - ‘trivial’ is not a word anyone with lymhoedema would use to describe it. I have often said that if I had a choice I would much rather get rid of my lymphoedema then have my breast back and nobody would dare to say that having a mastectomy is ‘trivial’.
In answer to your question about long term antibiotics I think I started them after my third episode of cellulitis.
Recognising an attack of cellulitis is never straightforward for me! Each time is a bit different so I’m always uncertain initially. The first time I had intermittent shooting pains down my right arm all evening when watching TV, thought nothing of it, then when woke in morning upper arm had red blotches which then spread. I didn’t feel feverish, just very tired. The most recent episode I started with a sore throat and aching and tiredness at work in the afternoon. I though I was starting with a cold. My temp was raised at 38.2. Then I woke next morning and while showering noticed red patch around my scar on my chest wall. The redness persisted although was not severe. I had quite a lot of discomfort in my arm and chest wall. I didn’t get any symptoms of a cold so therefore assumed it was cellulitis and started my treatment antibiotics (which I always have at home and take away with me on holidays).
I do so agree with you about rather having no breast(s) than having lymphoedema, rowena. I’d trade a lot more too, to be free of it, she says, half-expecting Old Nick himself to turn up and offer me two good arms in exchange for a soul…sorry, flight of fancy there(lol)
After I’d posted to lou yesterday, I had another thought…
Lou, where does that veto by your surgeon leave your poor lymphoedema nurse? Does she have to abide by his decision, or can she get a second opinion from, say, your oncologist? It can’t be doing her morale much good to have her efforts undermined by a fellow ‘healthcare professional’.