[debh]

Hi

I haven't been on this site for a long time, but thought it was about time I did. I was told by a consultant that I had SLE many years ago and for a while I had a very good GP who tested me regularly. I have never had to have medication and have kind of worked out by research that my Lupus is mild. I am photosensitive and get really unpleasant rashes in the sun, although living in the Midlands, we don't get that much of it and I often get the rashes anyway!

I had a low platelet count when pregnant with my second child and was told that I had a slight fever when i had to go into hospital to have teeth out. I went to the doctors recently (a different one), because I seem to get loads of colds and often just feel unwell. It's that kind of pre flu feeling, which goes away after a couple of days and doesn't develop. I had asked if I could have the flu jab, but have now been told that I have discoid lupus, not SLE. I'm not convinced and think that the two often overlap. So I didn't get the flu jab and still feel pretty grotty at times. I know I'm really lucky and shouldn't moan, as there are so many people worse than me, but I often feel like some hypochondriac (which I'm not!).

Also, one thing that I have thought about - can people with Lupus give blood? I know it's not contagious, but I'm not sure about this. I absolutely hate hate hate not being able to sit in the sun as I love it. It's great that there is so much support on this site, and sorry if I sound like I'm feeling sorry for myself.

Deb

 

[onetay]

Hi Deb,
Welcome back, I am sure I was not here when you were last here but welcome. You are right this site is the best of any site and so helpful and supportive. When I was looking for a place to go this is what I had in mind for people with lupus and here is where I ended up, it was by accident or devine intervention but I am here. I am glad that you have mild lupus and seem to be handling things ok for now. I am not sure about the giving blood thing but if you contact the American Red Cross they will let you know if that is something a person with lupus can do or not. Hope to see you in the chat room some time. Hope you are feeling well.

 

[Maia]

First welcome! It's good to have you here, and I'm glad your lupus has been largely mild. Have your rashes formed lasting/permanent scars after they heal? If not, it's unlikely you have discoid lupus. There are other forms of skin lupus including sub-acute cutaneous lupus --- or you could just have the typical photosensitive rash associated with SLE.

You may find that going on medication can help you with that frequent pre-flu feeling of achiness and fatigue. Most commonly plaquenil is prescribed - you may want to ask your GP or get another rheumatologist referral to look into this.

As to your blood donating question, they don't want our blood. :worried: At least not most places that I've talked to or heard others talk about who have asked. Largely, it's because we do have a potentially serious disease, and they don't really know what causes it other than most likely a combination of genetic susceptibility and environmental causes.