A-Z of Corticosteroid Withdrawal: Knee and Joint Swelling

K is for Knee and Joint Swelling:

Swelling, or oedema, is a symptom that many people experience when they withdraw from steroid creams. I do not have a medical background, and have no idea why this occurs, but it cases of oedema are well reported on in the studies by Dr Fukaya MD and Dr Rapaport MD. My theory is that the swelling has something to do with the blood vessels and the flow of blood in the body.

I consider myself quite lucky in that I haven't been too badly affected by oedema. In the first few weeks of steroid withdrawal, I had no swelling at all and though I may escape completely, but a couple of months into withdrawals, I noticed that the back of my right knee was slightly swollen, as if it contained fluid. It felt heavy to lift and the skin felt hard. I found that the best way to deal with the problem was by raising my legs above heart level, which seemed to help the circulation. I found that the swelling was always worse in the evening and it was usually gone in the morning after a good sleep. The problem only lasted a month or two, and now the only swelling I have is on my eyelids in the morning, which I think is to do with hypersensitivity and allergies and unrelated to the joint swelling.

As I say, I feel I have got away quite lightly, as I know that many suffer really badly with swellings during TSW. Here are some comments that people on the itsan forum have made about swelling:

" At the moment my left arm is very swollen, mainly the elbow area which is a pain as I can't straighten my arm nor bend it very much :s hope the right arm doesn't become as swollen or else it'll be hard to even do anything around the house!"


" too had severe oedema in my legs (and arms) and it has all gone now. In months 2 & 3 I had difficulty walking from my bed to the bathroom and my legs ached and ached"


Here are some pictures that a brave lady posted on the itsan site to show how severe the swelling due to steroid withdrawal can be:

The interesting thing about these photos is that you can clearly see the white areas on the fingers and toes that are so characteristic of steroid withdrawal. It is quite clear to see that this is not eczema, as some wrongly conclude. This lady had been on strong steroid all her life and when she stopped, she swelled up like this.

Clearly the system for prescribing potent steroid creams needs stricter regulation. People shouldn't have to go through this kind of extreme reaction when stopping a skin cream.