cellulitis again….: Ugh! Woke up at 5am bank holiday... - LSN


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cellulitis again….

Lyndy profile image
22 Replies

Ugh! Woke up at 5am bank holiday weekend and realised I have cellulitis…

No GP cover so 40 minutes holding for NHS 111 and now on 2 hour wait for GP call back to get some antibiotics.

Why does it always turn up at the most inconvenient time?

Tried to explain to the call handler that, although I can put up with a red leg, untreated it causes awful fever…which is why I can’t wait until Tuesday!

As usual it is in my worst lymphie leg….

Sorry for the moan, will be better once I have got some antibiotics on board! x

22 Replies
Lynora profile image

It might be a good idea to have a 3 day supply on hand, just in case this happens again. GP’s should be on board with this, and it can be a life saver if you succumb to infection on a regular basis.

Lyndy profile image
Lyndy in reply to Lynora

Thanks Lynora… I will ask my GP if they will do that xx

AnneBury profile image
AnneBury in reply to Lyndy

Yes, I was going to suggest that. So far my GP has been excellent giving me a prescription for what they now call 'a rescue pack'. I last got one when I went to Japan last November. I always ask the chemist to give me antibiotics with a long use by date. The antibiotics I got before my Japan trip have an expiry date of June 2024. The Lymphoedema Support Network have excellent guidance on their website.

walk profile image

You should have a 2 week supply of antibiotics at home. Insist on it.

SmallBlueThing profile image

I was refused an emergency supply when my previous pack had date-expired and, within a few weeks, ended up on what turned out to be a three month course of oral antibiotics, finishing with an intramuscular type, which I couldn't tolerate. I was sent to hospital and told it wasn't an infection after all, but stasis dermatitis, and I'd have to live with the fiery pain. Well, I think the intramuscular antibiotic in my system did the trick and, despite leaks, no more infections for over five years.

I hope you are feeling better, soon.

Sushine2461959 profile image

Hi Lindy my name is Linda I have lymphedema in both legs I had the same as you last year I couldn't take antibiotics because they tasted awful I wouldn't eat any thing my legs weeping all the time nurses put bandages on them has soon they went the bandages were wet through again I landed in hospital my legs started with cellulitis the nurse picked my legs up I screamed telling them to put my legs down because they hurt that much I was very deidrited so I had about 4 to 5 drips and a catena in my arm so they put antibiotics in me that way a year on I feel a lot better I haven't had cellulitis again which I don't want again so I know what you are going through hope you feel better soon lv Linda xxxx

Patann profile image

I asked myGP for emergency supply , so every time I have cellulitis I ask GP for more

A/b’s . When ever I go away I again ask GP for more A/B’s .

Always got some .

Never need to worry then.

yorkiebee2 profile image

I hope you get your antibiotics asap. There is no way you should have to wait at the risk of the cellulitis getting a hold.

Lyndy profile image

Thanks everyone, after 24 hours of antibiotics I am starting to feel better, my leg is still ted but fever has gone.

I can see from your stories that acting quickly to get the cellulitis under control is key, so I am going to ask my GP for an emergency supply.

It’s really helpful to hear your stories xx

DeborahS32 profile image
DeborahS32 in reply to Lyndy

Glad to hear you’re on the mend. Like many others, my GP has been great about giving me a fortnight course of just-in-case antibiotics to keep at home. I re-order when they time expire. As recommended by my excellent specialist nurse. Good luck!

Perido profile image

Section 1.5 of the BLS/LSN guidelines for management of cellulitis in lymphoedema give advice about 'in case' antibiotics. Show it to your GP if he/she won't prescribe: thebls.com/documents-librar...

Panda57 profile image

Hi LyndyHope you got your antibiotics and they kick in and start to make you feel a lot better.

I'm not long over a split toe at top and and it was so infected I've never had anything like that before I had to have a nurse in to dress it a few times and I was given antibiotics trouble was I was just finishing a course for a severe chest infection things do pop up at awkward times and your right it causes high temperature bouts.

Anyway all the best take care .


DeadfootMo profile image

I hope you managed to get some antibiotics before the condition worsens.

On_porter profile image

I'm sure others have replied with this but you should ALWAYS have an emergency course of antibiotics (preferably clarithromycin). I had the same thing this weekend, and if I didn't have them, I'd have most likely ended up in hospital on a drip. So just explain to your GP that you'd be saving the NHS a lot of money for the NHS if you have these anti-biotics to hand. And you need a 2 week supply for lymphoedema. Not 3 days, not 7 days and not 10 days. 14 days!

And if you don't get anywhere, start complaining tot he right people.

DeadfootMo profile image
DeadfootMo in reply to On_porter

Hello ON_Porter, You definitely have the right attitude on this subject as all too often people with this problem are turned away, forom GPs and told to lose weight, join a gym and go on the Jamie Oliver mediterranean diet. Which is what I was advised to do about 9 years ago now, What a laugh. I had a real problem with swollen feet, but because I was overweight the advice above is what I was given for about 3 years running. Then in the summer of 2014, I caught cellucitis, so bad I could barely walk. The doctor sent me to the department for tropical diseases for treatment as they thought I had been bitten by a horsefly and that was why I had a severe infection of the dermis. I mean my ankle was all shades of blue to pink on the edges and the texture of my skin was strange to say the least. It was also very hot to touch and agonising at the slightest touch.

The specialist thought that as my pain was two fold that just maybe the infection had gone down to the bone and the suggestion here is that I would need an xray to clarify this or not. I was given a pain killer injection prior to the xray which proved that the infection was not down to the bone, so I ws lucky. However, the treatment to follow was two lots of antibiotics on a drip for 10 days. The first three being in the hospital and the rest at home with visiting nurses. After this I was re-examined and as things had improved a lot I was given some diprobase to keep my ankle and leg moist and germ free and a further course of antibiotics lasting two weeks.

My skin did not look good but it was on the mend. In my final appointment the specialist wrote a letter to my GP to suggest that I should be checked over for Lymphoedema and given a spare supply of anitbiotics and diprobase to keep my skin free of germs as it was very fragile with the years of being plastered with steroid based creams or ointments as a result of eczema.

Another GP a few weeks prior to the cellucitis out break did suggest that she thought I might have lymphoedema and that she would like it checked out. But the main doctors on the panel at the time over-ruled her decision on grounds of cost and again raised the recommendations made earlier, that I should go on a mediterranean diet, lose lots of weight and join a gym.

With the specialist making the recommendation my surgery could not ignore me any longer. So approxmately 6 months after the cellucitis I had my first assessment at a hospice here in Newcastle upon Tyne.

So, I guess had I complained to the right people, I may have been seen earlier.

On_porter profile image
On_porter in reply to DeadfootMo

I’m so sorry to read this! Did you have awful fever as well as bad feet? I sometimes can’t see where the cellulitis is but my fever lands my in hospital. The worst thing about everything I read is the incompetence and lack of Dr knowledge. We seem to have more!

I suppose I was ‘lucky’ that my lymphoedema came around after a BMT at Great Ormond St so was in the system so to speak and referred to at George’s and Professor Mortimer straight away (my GP is also excellent).

However, a med diet doesn’t seem like such a bad idea for someone one with lymphoedema - I may give it a go. But gym (and especially swimming) everyone with lymphoedema should do. Keeping active v important + swimming good for skin.

Hope you are ok now!

Snobie profile image

I would definitely ask for a five day supply of a powerful Keflex. Not a low-dose. You definitely with your Lymphedema qualify as a medical need to have that on hand. And I’m only saying a five day supply because I’m assuming you’d be able to get into a doctor in that time. If you aren’t, then, you definitely need a two week supply

Probably a good idea to make sure that that prescription is always up-to-date so when it goes out of date and you haven’t used it, make sure to get a refill that is valid.

BedfordBoy profile image

Hi Lyndy, just to add to what others have said. I totally agree with complaining to the right people if your GP is unhelpful. A couple of years ago I was in the same position and after reading advice on here, I asked the receptionist to let my doctor know that I required a "rescue pack". I was met by apathy so I repeated my request.. Same not interested attitude was her response . So I said I would like to speak to the doctor about it. Not possible was the answer. I repeated my request once more and was told that I could be barred from the surgery because she didn't like my tone!" No shouting or bad language but she was so uninterested that she was threatening to bar me! I've gone there for help not hindrance. Now as we all know, when you are very ill, the last thing you need is an over officious receptionist making your life a misery. So I played her at her own game. I said I would be reporting her to the family practitioner's association, the area health authority and the local newspaper will be coming to report this story. Guess what? Next morning I had a polite phone call asking me to come back to the surgery to pick up my prescription! I had to go through all that malarkey just to get what I should have got to start with. Why? I hope that my experience was just an isolated case but I hate to think how many other surgeries are putting their patient's life at risk by this attitude. I hope very few!

Good luck and best wishes to you.

kHP22 profile image

The time span for cellulitis developing is often so quick that you need antibiotics on hand . No one should be having to chase doctors for a prescription . When I had cellulitis I went from feeling poorly to being very ill in a couple of hours . My doctor was doing a home visit ( laughable now ) but wasn’t coming until after surgery . After a call from my hospice lymphoedena practitioner he was out within five mins as they were concerned sepsis was developing and I was rushed to hospital direct to a ward , no time to wait for an ambulance . where I stayed for a week . Two different types of antibiotics every four hours intravenously ( 58 in total over the week ) and two weeks of oral antibiotics afterwards . A short course of antibiotics is nothing compared to what you might end up needing so GPs should be prepared to prescribe them as stand bys . If not refer them to the lymphoedema protocol on cellulitis .

walk profile image

You should have a minimum 2 weeks supply of antibiotics on hand as recommended by the Ly.phodema Society. Show your GP the link.

Whiteshirt profile image
Whiteshirt in reply to walk

Absolutely. I suggest to all my Lymphoedema folks to have some antibiotics on hand...also if flying abroad to take some with you....quicker its treated the better..

DeadfootMo profile image

Hello Lyndy,

I wouldn't wait for 40 minutes and then a further two hours for a doctors call. As then you might have to wait a further 48 hours before the prescription has even been sent to the chemist. The quickest way to deal with an emergency like this is going to A & E. I do mean A & E because it is likely that a Walk in Centre can't treat you, not knowing all your details, so a hospital is the best thing to follow through with. You may of course have to wait 6 hours or so, but remember this crisis in the NHS was not created by you.

Something went drastically wrong during the Covid years, as GPs suddenly stopped seeing patients and and instead hoped everyone would have the IT skills to do an online chat about their problem and then to forward photos or a film of the problem which they would then diagnose and forward prescriptions for. You can imagine how many this did not work for, thousands. Then came the telephone appointment and again this did not work for thousands in the population, as people had to negotiate electronic messaging services and they still do.

So desperate patients and seriously ill patients were literally ignored in their thousands,

Health issues were catergorised and sadly this meant for some people delays in treatments or operations, in fact I have a family member who had been given an opportunity to have hip surgery twice in 2020 but because Covid was rampant around the first offer, the surgeon advised her not the have the surgery, because if she caught Covid they couldn't save her. So it was natural she would opt out. They offered surgery again in the October of the same year and this time she was prepped for four days running, and then the surgeon cancelled. Now it is too late for surgery and this poor lady who herself worked in the NHS for 40 years of her life, has been s..t upon. It is too late because what has happened since has resulted in further debilitation fo the muscles and joints and she in fact is bed ridden and unable to do anything for herself.

Sadly she is not the only one this happened to.

So if I was you, I would not tolerate the shoddy service being offered. this country is a wealthy country and can do better. So don't be a wall flower and wait, go to A & E and demand to be seen and don't move until you are.

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