New Medication ??

[crjhtl]

I am still having trouble with breathing !!! This weekend, my sister and I went on our annual "road trip". It was wonderful, had to be very careful due to the sun and carrying oxygen everywhere, but we adapted.
Yesterday, I went to the doctor and we discussed the continued saga of my breathing.. since the Lupus has affected my lungs. Anyway, he is sending me for some more testing.. He said if the tests come back the same, he is going to continue to lower the prednisone. I cant say that upsets me.. I am still on 30 mg a day. If it shows that my lungs have gotten any worse, he wants to start me on a "cancer" medication. He said it was powerful stuff, but that is what he thinks should be the next step!!

Anyone, have any experience with this??? I do not have cancer.. just the effects of the lupus...

[Clare.T]

Hi
I am sorry you are having breathing problems . Have you been seen by a pulmonologist.

Cancer drugs are used to treat serious lupus when steroids aren't enough and when steroid doses have to be reduced but the doses are different from those used in cancer.

They have the effect of dampening down the immune system thus stopping the lupus activity just as they supress the immune system to stop the different sort of activity that's cancer.

Cytoxan ( cyclophosphamide) has been used since the early 60's
A number of medications used for transplants to stop rejection are used for lupus too. these are often tried in combination with other meds before using Cytoxan.

So long as your doctor is a lupus expert try not to worry . But I do think you should expect to get explanations from him.
The idea of "chemo" is always scary and oft times a doctor will refer to immunosuppressive or steroid sparing.

Find out what exactly he's thinking of and ask him what to expect. The best treatment is partnership and trust in one's doctor's expertise helps bring the best results from treatment of any kind.

Lots of Luck and All best Wishes

Clare

:flowers: :flowers: :luck:

[Sannie]

Hi crjhtl

Clare.T has taken the words from my mouth :o

I am sure your doctor is trying to do all he can to help you.

Sometimes the immunosuppressant/steroid-sparing drugs we take (imuran and methotrexate) are used to treat cancer in higher doses - so your doctor may be referring to these drugs when he says 'cancer drugs' but they are not the same as chemotherapy as we all know it.

Take care.

Love
Sannie

[pennylp]

Hi there,

I am so sorry you are having such a hard time..... And I sure hope this drug they are going to put you on will help you.....
I am a person with cancer.. and was on chemo for ten months.... when I went on it... my oncoligist told me this would help me with my lupus and Ra..... So I know there is things out there for cancer that will help lupus.... She also said that when I went off of the chemo, I would more than likely go into a bad flare... So far so good.... On this one I was lucky...
I sure hope you start feeling better real soon... Take care... And good luck...

Love Penny (mariea)

[crjhtl]

Thanks to all. I wish I could remember exactly what he called the drug, but I stopped "hearing" right after he started with all the side effects again. Every drug I am taking has these horrible side effects. As you all know, since most are on the same type drugs. I do think it was Cytoxin. When I was in the hospital a month or so ago.. They had mentioned the possiblity of using the drug. I will know next week I guess, right after he gets all the test results back from next Monday. (PFT, and catscan)... Thanks again. :)