[raggedyann1]

Erskine,

This came up a couple months ago so do a search of this forum and I think you will find the information that Clare had at the time. I will say when it came up I went and checked my scleroderma site and found no new information for sclero which tells me that it hasn't gone anywhere in the last few years. But do search this forum to see. I would find it for you but am not well myself today.

Karen

 

[raggedyann1]

Erskine,

Can you please link us to the studies that have been done on the uva therapy? That is one of the questions here. All credible medical research is available online with Pubmed I believe (could be wrong about the name) and so abstracts at a minimum are available.

You will also find here that most of us have tried various alternative and complementary therapies but having additional experience from someone who has tried them and succeeded or failed is always welcome.

I am very concerned by your statement that you have been flaring for 4 years. It is totally unadvisable for us to exercise thru the pain that will make lupus worse. Working long hours can also be a problem for keeping lupus under control. Just some thoughts that could be part of the reason why you are so very sick and flaring for so long. If symptoms are masked and covered up it makes it more difficult for your rheumatologist to treat you.

I do agree that it takes a long time for general medical doctors to be up to snuff on current treatment practices. However many of us here on this site see top doctors in lupus and connective tissue diseases. If a new treatment is available or a complementary treatment proved successful our doctors will have us try them.

 

[raggedyann1]

Erskine,

thank you for the links I will read them in depth when I have more energy.

I am surprised about exercise, I am guessing that you also checked how you do with just minimal exercise instead of such a big workout? That is not a normal reaction for the majority of lupus patients but we are all different. I do range of motion exercises almost daily and then have a recumbant stationary bike that I ride for varying lengths of time depending on my pain levels that day, it is the one piece of exercise equipment that doesn't aggravate my feet. I know that if I dont do at least the ROM that my pain levels in certain areas of my body increase.

Curious about what medications you have had besides prednisone. Have you been on imuran, cellcept, cytoxan? and are you trying to get insurance approval for Rituxan? That is the newest treatment for lupus that is still off-label but showing good results for many lupus patients already. IF you read thru the med forum here you will see the various discussions of people who are currently or recently had rituxan treatment. Some patients unfortunately have to stay on large doses of steroids the rest of their lives.

Of course every patient should be their own advocate. What I was saying is that some of us have the top lupus docs treating us and those doctors stay up to date on what is going on in the world of lupus. There are hundreds of horror stories on this site of members who had doctors that were clueless about lupus or at least clueless as to current treatment protocol. There are an equal number of replies helping patients find new doctors that will be up to date. We all spend time helping new comers learn to become their own advocates. It is critical that we are partners in our treatment process. I think on that point you simply mis-understood me.

Please understand that my questions to you are not really about you but for the silent member and all the visitors that read posts on this site everyday. While exercise has proved to be good for you that is not true for most lupus patients. Most of the time besides being concerned for the member I am responding to/for I am equally aware of the rest that read the posts.

Take care,
Karen

 

[raggedyann1]

I would also add in regards to windows and how they help or don't help. The problem is that we that have sun sensitivity have it in all kinds of severity. Newer homes in the usa at least are being built with dual pane windows but don't necessarily have the gap you mentioned. It really is trial and error for each of us. I for one don't have the problem with flourscent lights that people with extreme sensitivity do. I rarely leave my home due to other factors of my illness and when I do it is long skirts or slacks and long sleeves if my outdoor exposure will exceed 10 -15 minutes. I also wear a long brim hat if I expect to be outdoors for more than 10-15 minutes.

I have an additional problem with sunscreen since I also have scleroderma, when there is a high concentration of zinc and not really sure what else it is too drying on my face. I have found that sunscreen for baby's is kind to my skin. I don't have the finger energy to deal with lotion and then sunscreen. Most days I put on sunscreen in the morning after I was my face whether I am going outside or not. The one area many people forget about sunscreen is their hands. I make ahead of time if I am going out to reapply sunscreen on my hands when going outdoors.

I have to agree with Lily that many people do not apply sunscreen liberally or long enough in advance of going out of doors. My sunscreen specifically states at least 20 minutes in advance. The other thing I learned in chat one day a couple of years ago is to apply it liberally and wait for my skin to absorb it rather than trying to massage it all into my skin at initial application. I don't know exactly where the research would be on that subject and in this case didn't deem it necessary of research to validate.

Erskine it is a matter of you knowing how sensitive your body is and having the right clothes, window tint, sunscreen etc. to give yourself maximum protection. Many states here in the usa require you to get special approval to apply a dark tint to automobile windows.

Karen