Hi all
I developed lymphoedema last year, 10 years after my primary BC surgery! As if that plus liver & bone mets weren’t enough, on Saturday I suddenly found myself with acute cellulitis. Went to my GP’s weekend cover clinic (where the doc was horrified at my arm – very helpful) and got anti-b’s – one week of flucloxacillin 500 mg x four times a day. Will see my own GP later today for a review – hope he’s less horrified and more clued up.
Wondered if anyone on this forum has experienced cellulitis in your lymphoedema arm, and what treatment(s) you’ve had? I also posted on the Lymphoedema Petition thread in the “after treatment has finished” forum, after a search for “cellulitis” pointed me to Chrisjo’s post.
Any help/advice much appreciated – many thanks.
Marilyn x
Hi Marilyn
Sorry to hear about the cellulitis!
I have a lymphoedema medic alert card in my purse, which says that in the event of infection, the following is recommended:
Amoxycillin 500 mg tds for two weeks (Co-amoxyclav is even better tho’ - it is Amoxycillin with a special coating which stops it irritating your stomach).
Or, if allergic to penicillin:
Clindamycin 300 mg qds for two weeks.
Hope this helps
X
S
Many thanks, S for your information – hoping my GP will follow the guidance mentioned on the other thread.
Marilyn x
I had a major cellulitis infection 3 weeks ago that knocked me sideways. had no idea it could happen, it came from nowhere. I haven’t got lymphoedema in my arm but have suspected mild case in the boob that I am waiting a referral on.
I am flying to Turkey on Thursday and am very worried about the flight causing a problem. The GP has given me flucloxacillin and amoxycillin to take with me as a precaution. I just hope everything is Ok cos I don’t fancy trying to go through my history with the language barrier.
BCN wanted me to see the LN before I went away but then a doc decided we should wait and see for 6 weeks. More mixed messages, more confusion
Hi AJXXX
Sorry to hear about your recent experience with cellulitis, and that you’re worrying about a “repeat-performance” while you’re on your hols, but it’s really good that your GP gave you the anti-b’s to take with you – I’ll have to remember to ask mine for some before I go away next month. You should be OK taking those & painkillers if anything happens, but please do find a doctor if you you have a high fever or feel sick – hotels & tourist offices will usually have contact info for English-speaking doctors, dentists, chemists, etc.
Hope you have a great time in Turkey, without any health problems while you’re there.
Marilyn x
Hi Marilyn
When I saw the BCN she gave me a leaflet named Prevention of Upper Limb Lymphoedema produced by The Lymphoedema Support Network which states the following:
“Infection should be treated IMMEDIATELY using appropriate antibiotics. It is desirable to carry antibiotics with you when you travel in case infection occurs when you are away”
She gave me the leaflet to show my GP in case he wasn’t keen to prescribe but there wasn’t a problem so i’m sure you will get them as well.
Hope you got on Ok when you saw him today and the infection os now under control. I am now much better although it took a couple of weeks to get over completely [felt liek I had gone back to square 1 with tiredness] and you can still see where the rash came down my arm but it has nearly gone.
I have got lots of long sleeved kaftans, factor 50 [which I have since found out you can get on prescription if you need it], and a big sun hat so i will find myself a parasol to sit under and read my book, heaven.
I hope you feel better soon
AJxxx
Hi AJ
Thanks for the info about the leaflet – my GP was great when I saw him on Monday, and I’m sure he’ll give me a prescription for “holiday anti-b’s” – we’re staying in the UK this summer, so I’ll just take the prescription with me for if/when I might need some. Feeling lots better today, but didn’t realise how long it will take for cellulitis to disappear – was very downhearted to still have an “alien arm” several days after starting industrial-strength anti-b’s, but your experience has reassured me that it will be a while before the redness, tenderness, swelling, etc. disappears. Many thanks for that!
Have a wonderful time in Turkey, relaxing in your kaftan, with your Factor 50 and under your umbrella.
Marilyn x
hi AJ - am getting confused again about who has got what but think bahons said you need a sleeve to fly - have you got one ? love FB xx
PS Not sure how i get one over here - does anyone know how/where to mail order one ?
Hi Fizbix - where are you exactly?
S
Hi S - sorry but i’m not telling anyone yet - southern europe - and it’s blooming hot - love FB XX I can order it on line and then get it sent here - or a friend can traffik it over!
Sorry, Fizbiz
Didn’t mean to be overly nosey!
Good luck with the mail order - are you using an American site? I’d be interested to hear how you get on buying online - am considering this myself.
AJ, yes, if you can be get a properly fitted sleeve before you fly - it can take time, I know - it’s a good idea ro wear it for the flight.
X
S
Hi S - you’re not being nosey - I’m being secretive! - don’t worry - I’m begining to realise what I good spy I would make should the need ever arise … I have never been one to lie and still don;t but the porkies that have come out to maintain my cover have surprised even me!
I haven’t found out where to get one yet … any ideas appreciated … also might need some help learning how to measure if they come in different sizes…love FB xx
Hi Fizbix - don’t worry about being secretive - I’ve recently left the UK too for somewhere warmer - idly wondered if we were round the corner from each other and didn’t know it(!), but I think wherever you are is even hotter than where I am!
I think googling ‘lymphdivas’, ‘Jobst’ , ‘Juzo’ and ‘Schiebler’ + compression sleeves may be good starting places on your internet hunt. I’ve never bought sleeves over the internet, but the first name is that of an Amercan site that sells sleeves in all sorts of colours and the others are names of manufacturers. You could add ‘Medi’ to the list, as they seem to be standard issue in the UK - I’m not a fan of their sleeves personally, but it’s horses for courses.
As for measuring, I contacted my old lymphoedema therapist in the UK, who has a record of my measurements, she faxed an order off to the German manufacturer (Schiebler), who mailed them to her in the UK and she then sent them abroad again to me! Roundabout, and not cheap, but that way I get exactly what I want in terms of colour and design - AND, most importantly, the right size (both arms pretty stable now). In your position, I think you might have to ask your physio for a set of measurements of your arm - they are supposed to be taken at very specific points - or is it possible she can order a sleeve for you?
Bye for now
X
S
Hi Everybody
I came home from Turkey today and had a fabulous time, near disaster on first evening when I slipped and fell over in my room [and hadn’t even been to the bar yet]. Managed to twist myself before I crashed so didn’t land on my right side although left shoulder was as stiff as right one for a few days and I had the mother of all bruises on my backside LOL!!
Anyway the arm was fine, managed to get bitten on it despite using repellant [wretched thing could have bitten me anywhere, but had to get the arm], it spread more than a bite anywhere else but was Ok with plenty of tea tree oil.
It was too late to get a sleeve for the flight but I kept moving it about and it was Ok. It’s a bit heavy / numb but not seeing the BCN till 7th Aug cos the clinic is Thursday’s which was my flight day and now she is on hols so have to wait.
Had a call from my BCN before I left which was a shock cos I haven’t heard from here since chemo started last July, she was trying to sort out the appt for me and went on to tell me that they had a lady a few weeks ago with very similar situation to mine - infection, mild lymphoedema etc, she saw the same doc as me and [I quote] “they faffed about with her for weeks as well till eventually she got referred to the lymphoedema nurse and now she’s all sorted”. Was that supposed to make me feel better?
Hi AJ
So glad to hear that you had a good hol in Turkey (apart from the unfortunate fall!), and that your arm didn’t give you too much trouble – darned biting flies are a real hazzard everywhere!
Strange that your BCN (a) didn’t understand that you might be distressed by her little story, and (b) broke another patient’s confidentiality. The correct action for her would have been to pass her comments to the doctor concerned, rather than to you.
Do please get in touch with your lymphoedema nurse if you’re worried about your arm – the 7th of August is a long time for you to wait & worry.
Marilyn x
Hello Marilyn,
I developed lymphoedema and cellulitis two days before returning from holiday in Portugal last year. Within hours, I felt unwell, high fever, and red swollen arm. I did not contact local doctor and had no antibiotics. I managed to struggle to airport for flight home and saw my BC nurse on return. I was devastated to learn of my condition and that there was nothing they could do apart from taking antibiotics to cure infection and having to wear support sleeve virtually all day indefinitely. I did this for several weeks and slowly noticed the swelling reduce. I, however, got so fed up wearing this itchy, hot and uncomfortable sleeve, that I decided to do away with it completely and put up with a larger arm. To my delight, the swelling continued to diminish and is now completely back to normal. By the way, that holiday was last year and I have since had insect bites to that arm which has not affected it at all. I put it down to staying in the hot sun for too long. I am now much more careful.
Hi Sophiebubbles
What a shock that must have been for you!! I’m pleased that your arm has returned to “normal” after your bout of cellulitis in Portugal, even after you stopped wearing the support sleeve. I also have a sleeve, but am not fond of it: takes an hour and much grunting & swearing to wrestle it on, then it feels awful and rolls back down my arm, even with the delightful glue I’ve been given. So I don’t actually use it often – like you, preferring comfort, albeit with a larger arm. My week of anti-b’s did the trick for my cellulitis; my arm is back to its “normal” lymphoedema shape/size/mobility now.
So many surprises with BC . . . .
Marilyn x
Hi
just been reading through some of these threads and am wondering what exactly celluitis is/ (sorry for my ignorance) I have lymphodema and just recentley had a problem with my arm, burning sensation, then red blotchy areas, then what looks like blisters, not sure if i have been bitten! but am now on amoxycillin and been given some cream, This is a bit of a problem for me as i now live in spain and have had to deal with the language barrier. I would be gratefull if any one can give me some advice…
Cellulitis is an infection of the fluid under the skin. In my case it came on very suddenly, starting with my arm going very stiff, then a creeping rash, then high temperature, very achy, flu like symptons all within about 3 hours. The rash crept up from my boob to my neck, down my arm to the elbow and round the back of my shoulder with some extra patches round my wrist area. It is a deep bruise like rash that took a good 2 - 3 weeks to fade completely although the other symptons were under control within 48 hours of starting the AB’s. I would liken it to a really bad attack of flu combined with very sore and itchy skin, not nice at all.
I didn’t get blisters but when I got bitten on holiday recently the one on the bad arm spread loads more than any of the others, and I used repellant that didn’t bloomin work.
Hope this clarifies things for you.
thank you …poor you that sounds awful!
yes that clarifies things, at least i now know thats not what has happened to me, it must of been an insect bite, things are slowly improving now. Just resting my arm as much as possible
thanks again