Cellutis again, feeling very upset :(

Morning I have Primary lyphodema in my leg, I have my first appointment on Monday with my specialist nurse, it's such a relief too get my appointment after long battle with gp.But last week didn't feel well, my partner had a cold, so I just thought I had the same, should of known after cellutis before I had it again. Went to my a&e on Sunday morning as my leg was very swallon and the redness looked like it was spreading quite fast, after a long wait was given Iv told I would be in for next couple of days. Then was seen by a consultant who discharged me & give me antibotics late Sunday afternoon I think maybe even thou I don't like hospitals I should of stayed in on the Iv. Now I just hoping my leg clears up too able too see my nurse on Monday.

15 Replies

  • You should be OK to see the l/e nurse - even if she is unable to treat you for some reason, at least you will be on the books! Were you on IV antibiotics for just a few hours or did you stay in for at least 24 hours? Have you been given at least 14 days of oral antibiotics for the cellulitis?

  • I was on Iv for a few hours, then sent home with antibotics. Was surprised I was sent I seen by 2 doctors who both said I was staying in too have more Iv. I wasn't untill I got home I maybe thought I should of something too consultant, at the time I just felt say under wheather, glad too get home too my own bed.

  • Just make sure you take ALL the antibiotics as prescribed......and you should be ok...

  • You know, I quite understand how you must be feeling. Luckily for me, I have only(so far) had to be admitted once with a cellulitis...I had a week in hosp last summer with my arm, when it didn't respond to my emergency supply of clarythramycin. Being a nurse, I tend to worry MORE sometimes and I hated the uncertainty of what was happening. And I hate being trapped in a ward feeling powerless. In your case, it may be(you don't say) that a more senior doctor decided you were ok to go home on antibiotics. He may have seen much worse cases and decided you would do better at home(hospitals sometimes have other people with infections around) what I would do, in your position is, keep an eye on my leg, measure the redness to watch if its getting better, drink lots of fluids ( no alcohol!)and monitor my temperature. Take the meds regularly and rest, but get about at home gently every now and then., if you can, visualise yourself beating the infection, if you ARE worried, and cant see a nurse or doctor,don't be afraid to go back to a+e. thats why the service is there, good luck.

  • Sorry, I note you said originally you did see a cons. In my case, when I had been in about a week eventually saw a cons who thought I should have been treated at home!, wasnt even convinced it HAD been cellulitis, as he hadnt seen it...but believe me at WAS,! By the time he saw it, it was much improved.

  • You may need to be on low dose antibiotics long term to help with cellulitis.....Speak to your nurse when you see her. This has helped me so much

  • We've all had that 'down in the dumps' feeling from time to time so you have my sympathy. Getting used to LE and learning how to avoid/control cellulitis will all help in time to make you feel more in charge. Sometimes GPs with many years' experience won't actually have encountered cellulitis in a patient (my GP was in his mid-50s and I was his first patient with cellulitis but he was, thankfully, still able to recognise it).

    I suppose you are making a list of questions to ask the nurse when you see her. It might also be a good idea to have a small notebook where you can list dates and symptoms and treatments etc.

    Anyway, make the most of your "leisure time" and relax and sing or write or read or listen to the radio (keep the tv for the evening) or throw crumbs at spiders or dream about how you would run a better world! Good luck.

  • Sarah, first of all congrats on winning the fight to get to see a specialist LE nurse, I know they are rare beings.

    As for the cellulitis, you have my sympathy but you should be fine to see your nurse, as long as you are mobile enough to get there. In my experience, the nurse will be able to tell you if the antibiotics are working and if you have a long enough course of them.

    I had to phone my surgery yesterday for an emergency prescription because, despite my best efforts, I feel a bout of cellulitis starting due to a split between my toes. I managed to convince them to give me a week's course, though I have no doubts that that isn't long enough, but trying to get antibiotics at my surgery is always a fight. The last time I had cellulitis I was in hospital for 9 days on IV antibiotics and would much rather have been at home. This time I am hoping I have caught it quick enough to avoid the hospital completely.

    LE can and does affect your mood an feeling low with the cellulitis won't be helping but hang on in there.

    As Hexham said, I would take a notebook with questions you want to ask but it is also useful to jot down the things the nurse tells you. My nurse is great and I can phone him at any time if I am unsure, but it helped me the first time to write down the advice and suggestions.

    Good luck.

  • Hi Sarahj Don't forget to take a look at the management of cellulitis guidelines on the lsn website - print it off and give a copy to your GP surgery so they know the best treatment in case it happens again. lymphoedema.org/Menu3/conse...

  • oh sarah, how miserable

    i agree with all this good advice from everyone else tho, & as i was reading the other posts i was thinking 'must suggest sarah shoves the guidelines in front of her gp'!

    & lruk, sounds like you could do that too - it shouldn't have to be about wrestling antibi's out of the gp's, they should be putting them on your repeats list so you can have them at home & start taking them as soon as you're pretty sure it's cellulitis then take them for a minimum of 2 weeks, cos the infection's in the skin layers & harder to shift than infections elsewhere but more likely to become septicaemia (infection of the blood - potentially fatal but no need to let it get that far) if left to simmer for too long

    that doesn't mean you have to panic, but it does mean don't take chances - make an appt to see your gp & educate them about how to help you self-manage as much as possible; the lsn & bmj have developed a learning module for gp's you could suggest they look at (info's here: lymphoedema.org/Menu4/7BMJ%...

    my habit now with cellulitis is to take a picture with my mobile so i can show it to gp / ld nurse later, draw round it & start on the antibi's (i've learned that, if i get to a point where i feel i need to draw round the edges of the rash with a soft pen to see if it spreads, i should be taking antibi's)

    bear in mind that you need to keep an eye on use by dates with stand-by's - augmentin always seems to have a short date

    & i've had cellulitis loads, ridiculously high temperatures & rashes you could watch spreading before you eyes, but have refused i/v antibi's & hospital - i've doubled up on the augmentin for a couple of days when it's been particularly bad 7 had to stay on them for weeks, but going somewhere that's crawling with bugs to get rid of a bug doesn't make sense to me (& i've got bilateral arms & hands + torso ld & really don't fancy the idea of an i/v in my foot!)

    even on 1g a day of penicillin i still manage to get cellulitis, but it's not as bad or as rampant

    but it is bl**dy miserable, & you have all my sympathy - it's a horrid reminder of how vulnerable we are & how vigilant we have to be, & how much life's changed

    hope you're starting to feel better, & i'm glad you got out of hospital before you could pick up any bugs from there!

  • ITS A SHAME YOU HAVE HAD CELLULTIS BUT IT WONT STOP YOUR APPT WITH THE Sspecilaist nurse they can advise on that as well as planning your treatment, Your legs need the compression to help get rid of the swellinh=g then with all the aspects of care you should reduce the likelihood of cellulitis occuring, I was looked after at practice level initially, It ttok 2 years to actually get to a lymphodema clinic as well, I must say the practice nurses were good but i hear and see comments how surgery care varies so, Good luck with your appt im sure you will feel better once you have had that, We all need the support, liteally!!!. Good luck we are all here to listen and expain aour expoeriances, You arent alone,x

  • Hi Sarahj38,

    Please don't feel down, its all part of learning to live with LD, Norbert is spot on regards drawing or marking your skin. My GP always draws around my line and times the change on each change of line, its to track its movement and severity.

    Please keep your appointment with your LD nurse she needs to see you and she may even help you with a regular course of treatment for the Celulitis. We all know GP's don't like to dish out Antibiotics to stop our bodies becoming immune to them., but in our case its a necessity at times so never feel you are becoming troublesome to the GP.

    Hospital A&E, what can i say, some of them are working to time targets and its a must to get the patient of the unit before a set time, I know its not them all, and I know some are amazing, but it's unfortunate when it happens to you when you feel like crying and all you want is for someone to help you. Each A&E has its own set of rules, as does Consultants once you are on the ward for IV treatment.

    Keep thinking positive and keeping in mind we are all the same, so you will never be short of help and advice if you pop on line.

    Take care and good luck foir the LD appointment. x

  • I had a very serious bout of cellulitis one year and the doctor did not want me anywhere near a hospital with added germs, so I had "hospital at home" treatment and was given IV antibiotics every day. I did not like having a cannula fitted but it has to be done. The nurses said that I was extremely ill and it was touch and go whether or not I was actually admitted after all. Thank goodness I had the correct treatment. I would also like to say that even though our GPs are giving us antibiotics I have now had such high doses for long period of time that they are not as effective as they used to be. The last time I had a flair up of cellulitis my GP said we would experiment and see how long my own body would take to fight it, BUT if the cellulitis was spreading and not receding then to start taking the emergency supply of Clarithryamicin (sorry spelling). It did spread further but decided not to take any tablets. I am happy to say that it did in the end clear up, of course I am not advocating that for anybody it was under GP supervision. Unfortunately we are all as a nation being prescribed too many antibiotics and it does worry me that one day I may have a flare up and they wont work at all. So to have one bout of cellultis and not take a course of antibiotics was wonderful. I am sure i felt better for it too. Sorry for the long response. I wish you well in your recovery and good luck with your appointment.

  • Hi I have been exactly the same I've suffered with reoccurrence of cellulitis since 2001 resulting in 2 hospital stays ,this lymphodema is made worse due to it .I have been prescribed endless amounts of amoxicillin which I'm becoming immune to now ,my GP had put me on dioxcycline for life to keep it at bay but I'm finding it's not helping at all as the dreaded cellulitis comes back constantly .Im finding I'm avoiding holidays to as it's a nightmare finding places to go as I cannot bear the hassle ,you have all my sympathies .

  • I know exactly how you feel. I think you get to a point where you really want a peaceful holiday without any accompanying stress

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