TheLupusSite.com banner

1 - 9 of 9 Posts

·
Registered
Joined
·
2 Posts
Discussion Starter #1
Hi everyone, just resgistered,need advice..... i have been told to prepare myself for Chemotherapy as i have renal nephritis due to lupus, i am TERRIFIED!!!! lol has anyone out there had this? did it work? will i lose my hair? any advice would help!!!!
 

·
Registered
Joined
·
14,661 Posts
Hello Kerrie and welcome to the forum :)

I am sorry about your diagnosis kidney involvement and the need for powerful medicines.

Do you now the name of the drug or drugs they are considering? Sometimes the term chemotherapy is used in a pretty vague way and the drugs we use are often used differently from how they are used in cancer treatment or to stop transplant rejection.
Many people here use transplant type disease modifying drugs and quite a few have used one called cytoxan / cyclophosphamide, " the big gun", or a newer type called Rituxan.

I think you would get the most useful feed back if you have the names of the drug/s so people can help you with exact information and encourage from their own experience.

Your post would also get a better response if it started your own thread with an eye catching title, so one of the Moderators might be moving it for you :)

Bye for now

Clare
:)
 

·
Registered
Joined
·
250 Posts
Hang in there, I've been in your position....it was around 15 years ago! Nephritis is what led to my diagnosis (after complaining about things for years!). Wasn't till I started showing blood and protine in my urine that my Doc. decided I wasn't a hypochondiac. Have you had a Kidney biopsy yet? When I went to see a Rumy for the first time he told me on that first visit that I'd need chemo...scared the crud out of me! I started not long afterwards. My condition at the start was horrible. Blood Press was extremely high (I remember readings in the 220/180 range), I was retaining water like crazy, my pee (what did come out) looked like dark beer. I was in very bad shape. Started chemo (Cytoxan) and things improved very quickly, much to my Rumys surprise...as he had warned my not to expect much for awhile. Well about a week or two after the first round I started peeing my brains out (figure of speech :)). I lost about 35lbs of water in a week, it was amazing. I had a total of 10 treatments the first time and by the time I was done I felt better than I had in many years, even got in shape and hiked to the top of Half Dome in Yosemite (17miles,5000' up then down). Nephritis did return about 11 years later. Cytoxan treatments did the trick again...I actually looked forward to it the second time as it had helped me so much the first. Now my worry is that my Doc. says no more chemo, he's worried about the chances of it causing cancer, says I've had enough, so if Nephrirts returns, and I imagine it'll be back someday, I'll be trying CellCept.
Oh, and my hair did thin a bit, but didn't look all that bad. I did get a bit sick, but not too bad. One thing to watch is that about a week or two after chemo your white count will drop, so try to avoid germs at all costs. I caught a cold once when I was down and ended up in the hospital for a week, isolated, till my count went back up. After that I was much more careful and never had the problem again. My Doc. did have me go in for a blood test nearly every other day after chemo to keep and eye on things.
I know it's scary. I was terrified at the start, but feel it saved my life. It worked wonders for me!

Best Wishes,
Eric
 

·
The Other Illinois Tammy
Joined
·
1,193 Posts
kerrie,
Hi and welcome to the site. If you have not done the intro that would be a good place to start by telling a little about yourself. I have not had to do any type of chemo, but there are some on here that have with some positive reaction with chemo type treatments. You will be able to get more help if you are more detailed about what your talking about as far as drug name, dosage, time frame to be doing this, and some back ground like they are wanting to do this now or you have been told at some point you will be doing this? I hope this helps you to post again with a little more information so you can get some better help for answers to your questions. I hope you are feeling well.
 

·
The vortex of insanity!
Joined
·
154 Posts
Kerrie,
Ohhhh yes, the lovely, lovely chemo. If they're talking Cytoxan or Rituxan, that's very different from oral "disease modifying" drugs. My case is slightly weird because I'm so young (well, I was so young, I was on Cytoxan ages 11 through 13). Cytoxan has some nasty side effects, Rituxan less. My hair thinned on cytoxan but not on Rituxan, but it wasn't too bad, as people have said. According to the nurse who administered the treatment, putting ice on your head helps with that. I'm not sure whether I believe her or not :p. Good luck with everything!
 

·
smile xxx hugs to all xxx
Joined
·
77 Posts
hi ive had both these drug twice,, i would take them as i dint take if for my kidneys till it was far to late and am now on dyalsis,,
but i startred to have heart involment last year and it worked wonders my lupus settled down in sooo meny ways,, its just up in flare again now and am going to be haveing some more..


they now give you both drugs togehter as they say if you need it again your less likely to have a reaction to either one of them,,

as for loseing your hair no went bit thin but only i noticed as i was looking for it,,.
the drug is not as strong dose as a cancer paitent so please dont worry,,

good luck (((hugs)))

roxie xx;)
 

·
Duncan
Joined
·
254 Posts
Kerrie,
I've been taking methotrexate for 4 months now. It's chemo for leukemia usually. I was as scared as you to start with, but on a low dose it was fine for me. Some people feel a little sick but I've had no sickness from it. It was a huge help. I went from joint pains in 5 different places every day to almost nothing. I have to have a blood test every 4 weeks to check it's not causing damage and so far all has been well.
It's been well worth it for me as I became mobile again and almost pain free from my lupus-related pains. It also allowed me to reduce the amount of steroids I've been on down to safe levels.
Good luck!
 

·
Registered
Joined
·
3 Posts
I too was diagnosed with Lupus Nephritis and I just started my Cytoxan on friday. Not as bad as I thought. Hang in there. Please let me know if you want to chat on our stories. I am also on a high dose of prednisone (120mg every other day) along with the Lupron depot 4 shot to protect my ovaries from the chemotherapy...
 

·
Jyneal
Joined
·
84 Posts
Cytoxan

Kerri,
For the last 2 1/2 years I kept hearing the word cytoxan, and this past December they actually started me on it. I to have kidney involvement, however right now my kidney's are great. I had a aveol (lung) hemorage in October, and a reoccurance in December. So now I have had 3 cytoxan (chemo) treatments. The first 2 there was no problem. I felt just as bad/good as I did every other day. The third one I felt fine the day I had the treatment, but the following day I felt nausa and tired. I pretty much stayed in bed all day long. Yesterday I noticed a lot more of my hair falling out than normal. I have very thick hair so maybe it will just thin like many other people had happen to them. I am actually feeling better though. I have more energy. I actually have been cleaning the house again. Not over doing it, but maybe a room a day. I have not had the energy to clean or do to much of anyting since August. That is when this flare started. So I think the cytoxan is working for me. I did get sick last month, some doctors wanted me in the hospital, and others said an antibiotic would do the trick. Well I never did go to the hospital, so I guess the antibiotic worked. I do have blood work done twice a month. The first round 1 week prior to chemo, and the next 10 days after. I am not sure what the normal White blood count should be or where they want it to be. Right now mine is at 10, last month it was 19 (but I was sick). All I really know is I think it is working for me, and It isn't so bad.
Good luck with your treatment, and don't be scared. Everything works out for a reason, we might not know that reason, but there is one.
Jyneal
 
1 - 9 of 9 Posts
Top