Useful Information

General Information

First of all you need to find out about Stills disease. As stated before please speak to you Consultant, Doctors, Nurses, Specialist Nurses, Physiotherapists and Occupational Therapists. These people deal with the illness more regularly than anyone else and have up to date information. There is a lot of information on the Internet some good some bad. You cannot guarantee how up to date this information is so speak to the professionals. The one website I would recommend is the Arthritis Research Campaign (ARC) site. It contains a lot of useful information and links to down loadable documents. I found reading about blood chemistry and the function of the immune system very useful. If you are prescribed Methotrexate then you will be required to give blood weekly to check your liver function. A basic understanding of the results helps you to understand the disease activity. It also gives you a feeling of involvement in your recovery.

Joint Pain

The ARC Website has information on dealing with joint pain and pacing yourself through activities. The main thing is to listen to your body and not to overdue things. Once you have pain in the joint I found that heat helps a great deal. You can purchase heat pads (chemical or microwaveable) the can treat the localized pain. I also found freeze gels useful these treatments can be augmented by hot and cold water treatment to alleviate discomfort in the joints. The pads and gels are available at major chemists and certain items are VAT free (UK Only). The worst pain I have is in my hands and wrists, I received some splints from the occupational therapist. These have helped greatly, and have allowed me to accomplish everyday tasks that would otherwise have been beyond my reach. Knee supports have also helped, they have allowed me to walk and reduced the pain in my knees.

Skin Complaints

After my second hospital discharge I started to have problems with my skin. I had general all over itching and irritation which peaked at night. This was a very debilitating condition which affected my general mood and prevented sleep. It is unclear if this was caused by the disease or by the medications. As I have been on, and am still on so many different medications, a process of elimination would be the only course of action to determine the cause. The anti-histamines certainly have helped and it took some trial and error to establish the best one. I found that using a moisturizing cream and using baby body wash helped. I tried various creams from the GP to combat the severest areas of irritation. Eurax anti itch cream certainly seemed to be the most effective. Luckily over the course of one week the symptoms cleared up, this took around ten weeks.

Medication

I found reading about the medication I have taken and its interaction with your body has helped my understanding of the disease process. I have been and still am on a lot of medication to control my symptoms. In the UK you can purchase a certificate from the chemist for your medication. It comes in a four month or one year format. This has worked out considerably cheaper than paying for each individual prescription.