I have been admitted to several different hospitals, in Denmark and abroad, because I suddenly have gotten an outbreak of the infection. And in many of these cases, the problem has been the same: The doctors – whom not educated specifically within the area of lymphedema – think they can treat a lymphedema patient with erysipelas the same way they would treat any other patient with it. And that is normally not the case. In my case, I have been back in the hospital just a few days after ending the short-lasting “normal” erysipelas treatment, because it turned out to take much more to knock down the infection in my system as a consequence of me having lymphedema.
Down below you can read more about my experiences with treatment of the infection and of how the Danish specialists treat the illness when it occurs on lymphedema patients.
- Treatment of acute erysipelas
- Preventive treatment
Treatment of acute erysipelas
The specialists within this area in Denmark have a certain way of treating erysipelas on lymphedema patients.
I have had many considerations whether I should write about this in detail on a website because I run the risk of getting a lot of doctors on my back. But after considering it, I have decided to write in detail about this subject because it seems to be a general problem that many doctors do not know how to treat erysipelas on lymphedema patients properly.
If you should ever get the infection, I would advise you to discuss the matter further with your own doctor; and if he or she seems to have the smallest amount of insecurity in relation to treating lymphedema patients for erysipelas, I would ask him or her to ask the specialists within the area.
The Danish specialists within lymphedema and erysipelas normally treat their patients for 3 weeks. At other hospitals or at other doctor’s I have been put in to treatment for 3, 5, 7 or 10 days and every time it turned out not the be enough to kick down the infection. And that is because the other doctors have not added the complication of lymphedema in the equation.
I myself get two types of treatment, when I get the infection. It is 3 weeks of treatment with either
- 4 daily intakes of 2*1 mill. IE of phenoxymethylpenicillinkalium + 2*500 mg of flucloxacillin
- 4 daily intakes of 2*1 mill. IE of phenoxymethylpenicillinkalium + 2*500 mg of dicillin (dicloxacillin).
As you can see, it is a pretty heavy treatment. But that is – as far as I have understood from the specialists – necessary because of the lymphedema.
So if you have experienced getting the erysipelas infection shortly after having ended another (shorter) treatment, it might be because you have not been treated sufficiently the first time.
At some point the doctors got pretty desperate in relation to my case; I had had the infection more than 25 times within a few years. This resulted in me getting seriously ill on a monthly basis, usually just a few days after having ended the last erysipelas treatment, me not being able to study or work most of the time and my lymphedema worsening for every time I had a new infection which increased the risks of getting the infection yet again. The doctors therefore decided to put me into preventive treatment.
The bad thing about preventive treatment is that you will be putting a lot of penicillin into your body on a daily basis without being sick when taking all the medicine. And putting all that penicillin into the body increases the risk of becoming immune to penicillin. Preventive treatment is therefore not something the doctor are excited about doing with every other patient that shows up with erysipelas infections. But with that being said, as far as I have understood, there is not really that big a risk of getting immune with the regular kind of preventive treatment because the dosis of penicillin in this treatment is at a minimum.
If you suffer from recurrent erysipelas infections, it might be the best way to try and treat it. I have written shortly about my experiences below, but you should always have your own case individually evaluated by a doctor specialized within this area.
The Danish specialists have put me through two different kinds of preventive treatment:
- At this point I am in preventive treatment at home taking 2*1 mill. IE phenoxymethylpenicillinkalium every day. This is a small dosis, but it can be sufficient to keep me from going back into the pattern of getting the infections non-stop.
I was – successfully – on the treatment a couple of years ago, but as I finished my studies and started working 45 stressful hours a week, my body seemed to kneel under the pressure. After being without the infection in 6 months, it stormed back and I got the infection 7-8 times the year that followed. In my case this kind of preventive treatment therefore seemed to have its limits in relation to how much it could do on its own.
- About 6 months back the Danish specialists wanted to try another kind of preventive treatment because I once again suffered from an extreme amount of recurrent erysipelas infections. The Danish specialists consulted with specialists in England. The English specialists told my doctors about a preventive treatment that they had amazingly good results with. The majority of English patients that had gone through this treatment, either stopped completely getting the infections or only had them once or twice as year following the treatment. This treatment requires you to show up every day at the hospital for 3 weeks to get penicillin intravenously injected.In my case it turned out to be impossible to treat me the same way as the English patients. My veins are completely wrecked because of chemotherapy and my veins are practically impossible to find or use. The doctors therefore decided only to have me in for treatment 3 times a week, hoping that they at least could find one vein that could be “re-used” 3 times a week for those 3 weeks. Probably as a result of not getting a treatment similar to the one recommended by the English specialists, I got the infection once again shortly after ending this preventive treatment.
However, it is said that the treatment has helped a lot a lymphedema patients with recurrent infections, so other could probably benefit from this kind of treatment.