Lately I have been feeling very frightened about what the next step in treatment will be. My GP recommended a new rhuemy because the one I have been seeing has not been very helpful they say it is CNS Lupus and that is the scariest part I find myself struggling with extreme pain nerve wise and painful swollen joint and extremities. It is not just the pain though I seem to be forgetting things and having a hard time thinking clearly. They say a drug called Cytoxin will help but it is a form of chemo and that seems drastic any advise would be helpful feel like my brian is mired in a dense fog that won't lift.

2 Replies

Hi amy35. I'm really sorry to hear you are struggling with pain and lupus fog. Like lots here, I suffer it too, particularly if I have pushed myself too hard and haven't rested enough.

I have been on quite a high dose of imuno surpressant for many years and it has helped me tremendously. It can make you a bit more suseptable to infections and I find colds can hit me a bit harder than a "normal" person, but I haven't found it necessary to wrap myself totally in cotton wool. A bit of common sense is enough. I have blood tests every 6 to 8 weeks and in the 11 years or so since starting the treatment I have had no significant problems with it. I do hope this helps.

Best wishes



Hello Amy35!

I hate to think you are frightened.

I have had this wretched disease for years now. Mostly I didn't know I had it. I just thought it was the result of getting older, loosing hair and working hard at the same time! Then eventually it became clear.

What I want to say is that I am sure that most of us on this site get most of the symptoms in some way or another. Some people get some symptoms worse or better than others and they can be mild as well as severe.

The point I am making is that once you know you have it you seem to be looking out for all sorts of things, and realistically you may have brushed some aside beforehand.

I get the nerve pain in my head and it tends to be more painful before a virus appears. I have had the 'fog' and this seems to be when I am most tired.

If this helps I would suggest that if your body is yelling.....'I'm Tired' then you must rest.

The key to feeling better is sleep and if you can overcome that everything seems to be better for it.

I take CellCept which is an imuno suppressent and it has made me much better.

I was given something to help me sleep and it was worse than useless. Then I was given a bete blocker and it has really helped.

It is just a case of finding what is right for you and I am sure you will start to feel better.

Failing that....have a good moan to us all and we will be on hand to support you. x x


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