Hi, I am soon to attend my first lymphoedema clinic, h... - LSN


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Hi, I am soon to attend my first lymphoedema clinic, having had problems for just over 6 years.

southwales profile image

I also have chronic cellulitis with constant flare-ups - the most recent has lasted around 10 months. My doctor has tried to help with antibiotics but I'm allergic to penicillin and most of the other antibiotics given for cellulitis. At the moment, the only one I can seem to tolerate is oxytetracyclin and I have to take large doses to get any kind of benefit.

I wondering if anyone here has a similar problem with antibiotics and if they have any advice about treatment and medication please?

It's so good to find a place where people are knowledgeable about this problem and eager to help.

14 Replies

Hello! Chronic cellulitis must be debilitating especially when you are allergic to penicillin so you have my sympathy. I'm afraid that I can't answer your question but perhaps, if no one else who shares your situation responds, you could contact LSN direct on Monday? As you know, preparing a list of facts and questions will be a good prompt/reminder when you do. Best of luck to you.

southwales profile image
southwales in reply to Hexham

Thank you. I didn't realise I could contact them direct. That would be a good idea. Thank you for the good wishes too. I'm feeling more positive than I have for years now that something is finally being done.

hi southwales

same as hexham, sorry - i chomp penicillin & augmentin like smarties & i can't imagine how you cope with cellulitis if you can't, no wonder it takes nearly a year to get rid of

so you have my sympathy but nothing helpful - i suppose i'd be wondering who gets called in if people in hospital are antibiotic-resistant, & whether you /your gp / the lymphoedema team could take advice from them .... maybe the intensive care consultants?

& if there is a lymphoedema service to refer you to, why did it take 6 years???

i hope the lymphoedema team are helpful - let us know how you get on

southwales profile image
southwales in reply to norberte

Hi there. Well, the problem was that the doctor would give me an antibiotic, I'd tolerate it for a while, then have pretty extreme reactions to it. So then I'd get a different one and have the same problem.

I was told that, if I run out of antibiotics I can take orally, they can take me in and put me on intravenous ones, but they haven't done that yet.

It took 6 years because my doctor was treating me for cellulitis and putting the swelling down to arthritis. It was only when I was sent to the hospital for a suspected DVT that I saw a specialist who immediately wrote to my doctor telling him to refer me to the lymphoedema team. The specialist said at the time that many doctors have no idea how to treat this, which seems pretty ridiculous.

I have my first appointment on Tuesday and I've been having compression bandages fitted by the district nurses for a few weeks.now. I'll definitely let you know how it goes.

Thank you to both of your for answering. It's great to feel I have some support at last.

hi Southwales, I had 2 cellulitis episodes last year and have been allergic to penicillin for 40 years, I have multiple allergies, Had yet another reaction and was in A &E for a day(last year) on steroids etc. Went in to hospital with breathing probs and was put on intravenous antibiotic.because I was admitted with the extra prob of cellulitis. It is true that a lot of GP's do not recognise lympho and it does not get treated.

best of luck


southwales profile image
southwales in reply to scottymeg

Hi Scottymeg. I'm sorry you had such a problem but at least I know I'm not the only one who has multiple allergies. I was sent to the hospital mainly because my doctor didn't know what to do with me. Luckily, it seems to have worked out in my favour, because of the referral to the clinic.

Thank you. I wish you the best too.

Hi southwales, First of all, good luck with the beginning of the treatment for lymphoedema. I am going to see for the second time the specialist nurse next week; I wasn't yet referred to an NHS clinic as they told me that my swelling wasn't yet 20%. I saw a specialist privately but stopped as she got I'll. I have swelling in my arm and in my breast, and also, I have the feeling, that I developed fibrosis in the breast. I am mentioning this as I now wonder whether I did the right thing in having had lumpectomy and not mastectomy (as I felt like having the moment I heard my diagnosis) as I wouldn't have had to deal with so many side effects of the radiation of the breast. And who knows if my lungs or my heart (the left side was treated) will not end up suffering because of the radiation. I will appreciate your thoughts on the subject.

southwales profile image
southwales in reply to Rebec

Hi Rebec. Thank you. I'm a bit nervous, but very glad something is being done at last.

It sounds as if you have a lot of problems. It's good that you're seeing the specialist nurse soon. I would definitely ask her about the things you've mentioned here and see what she says. Also,I think you need to talk to your surgeon and doctor about the concerns you have, and as quickly as possible.

Good luck. I hope it all works out for you.

Hi southwales, I must say the antibiotics for cellulitis are quite unpleasant! I am not allergic to penicillin but was terribly nauseous when I took the tabs. I asked to be put on the liquid pen, but ended up with terrible thrush in my mouth!! So I don't know how you cope with yours! You must be at the end of your tether, bless you XX

southwales profile image
southwales in reply to sue32

Hi Sue32. Yes, the side effects weren't pleasant, including thrush. With some of the stuff the doctor gave me, she'd include a prescription for Canesten because I needed it so often. I feel better after being to the clinic though, so I'm hopeful it will improve now.

Hi southwales,

I am also allergic to penicillin and have had recurrent cellulitis, . My hospital recommends erythromycin, which worked well for me until last year, I was admitted to a local general hospital and put on iv something or other, not a drug id ever heard of,but after discharge, my lymhoedema nurse recommended clarythramycin for two weeks to follow up. i also know, that they recommend one tab daily of erythromycin prophylactically for people who have had more than one bout of cellulitis per year.

The other thing I am now very aware of, is that during the summer, skin dries out more and that bacteria can enter it without any sign of a cut. also, dehydration contributes tothis....so its a good idea to massage cream( i use aqueas ) into the limb at night and pre and post swimming, etc, and keep up your fluid uptake! I know cream rots the sleeves, but im afraid, if my inner elbow crease gets red, I expose it for a while, massage aqeas cream into it and wipe off he excess before replacing my sleeve.

Seems to work for me.

southwales profile image
southwales in reply to Bestbrush

Hi Bestbrush.Yes, that's similar to my experience. Erythromycin worked once, then it caused so much nausea that I was dehydrated and had to be taken into hospital. I can't take Clarythromycin either - in fact it's only oxytetracyclin that I can tolerate now. I've been told there is a drug that can only be given intravenously, so that's possibly the one they gave you.

I wasn't aware of that. I'm careful to moisturise but the nurse said I should do it more often. She told me not to use Aqueas but to continue with the Diprobase the doctor gave me. She gave me a couple of small samples of something called QV cream to see if that helps too. I'll remember to keep up my fluid intake too. Thank you for the advice.

Try Dermol lotion and ointment as a shower gel as well as a moisturiser, because it has antimicrobial qualities and although it probably won't stop you getting cellulitis, it will keep the skin as clean from bacteria as possible. It is available from prescription.

i am not allergic to anything so amox-clav 875-125 mg and amoxicillin 500 mg gets rid of it within 10 days.. i cant imagine and then i stay away for sugar and salt .. no processed foods and lots of water good luck

i travel with it as i have ended up in ER simply by bot having my meds and when it is infected it can spread quickly..

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