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sharon309

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 #1 
My adult daughter (35) was DX with lupus about 9 years ago along with a few other things. Fibro, ITP, Raynaud, arthritis, bad migraines  and now class lll lupus nephritis. She has been on all the normal medicines,
 methotrexate, plaquenil, prednisone , pain meds, mobic and antidepressants. When the kidney biopsy came back pos. and class lll  they put her on cellcept and stopped the methotrexate. She had bad reaction to the cellcept and was in hospital for a couple of days. The kidney doctor decided to put her on low dose Cytoxan by IV infusions, 1 infusion  every 2 weeks for a total of 6 treatments. She took her first one on 5/25/17. So far side effects haven't been too bad they gave her IV fluids and Zofran when they did the treatment and Zofran pills to take as needed at home. It took about 2 hours for the treatment. She has been tired, headache and some nausea. I will post updates during this treatment. If anyone else has done this I would like to hear your experience .

Thanks
Sharon309
 

 

hanna24

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 #2 
Sharon, sorry your daughter has developed nephritis.  I was diagnosed with class III about 6 years ago.  Treated with cellcept, prednisone and losartan for about 2 years.  Doctor didn't think there was enough improvement so he also had me do 6 doses of cytoxan 2 weeks apart.  I only made it through 4 of those because I could not tolerate it due to worsening migraine headaches each time.  So we went to plan C which was Rituxan 2 infusions 2 wks apart.  It worked great for me.  The studies they did on it for nephritis weren't that good but it worked.  Unfortunately inflammation has creeped back and I am now undergoing another round of the rituxan.  Everyone is different and I know cytoxan works for alot of people.  Hope it works for her.
pianist

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 #3 
I have been on the oral form of cytoxan since last June. I do not have nephritis; I am taking it for lupus cerebritis. It has helped me a lot but at times I thought it was killing me. My advice is for her to be careful not to be around people who are sick (especially coughing or sneezing and certainly don't touch them), she should wash her hands often, get all the lab work as her doctor requests, get plenty of rest, eat healthy and get exercise as she is able. I'm on a lower dose now, but at the higher dose cytoxan was absolutely destroying my body. It's not fun or easy, but it has helped when nothing else did. Looking forward to your updates.
Good luck to both of you. 
sharon309

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 #4 
Thank you Hanna24 and pianist, this is day 5 since treatment 1 and the main side effect is a constant headache...  but not as bad as the migraines she gets. Also  still feels tired. I thought maybe the headache would go away by now and she could have 1 good week between treatments. I guess we will see. pianist she gets labs done an hour before each treatment. Wishing you both the best.
sharon309

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 #5 
The headache and feeling sick lasted for 5 days and then she felt better so if it stays this way and she gets 5 bad days then 10 good ones that will be great. It won't be so bad doing this treatment for 3 months if the side effects stay like this and it helps her lupus nephritis. I will update after her next treatment.
redhigheels

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 #6 
Hi guys I had been on a very high dose of cytoxan IV yrs ago for the same thing, lupus nephritis, my experience was really bad with this drug. I really thought I was dying, I ended up with some much infections, plus constant blood transfusions, after 6 months of this drug, I was grea!. my kidneys function was stable, my lupus went into remission, it been about 12 yrs now and knock on wood, my kidney hasn't act up at all. I still have kidneys damage but it haven't progress since, I'm still on all the normal meds for lupus, still all the aches and pains but I'm still hanging in there.

Good luck to your daughter Sharon and I hope she gets geart results., I look forward to read more as she progress,
pianist

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 #7 
I wouldn't be surprised if after another round or two your daughter is tired ALL of the time. Cytoxan just wears the body down like that. Nothing you can do but rest.
sharon309

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 #8 
My daughter had her second Cytoxan infusion last Thursday 6/8/17, she had the same effects as the first, tired, headache but the headache didn't last as long. Her depression is increasing and she is very tired. She sees her kidney doctor Friday 6/16/17 and will have urine tested at that time and we hope to see some improvement in the protein levels. She has had chest and head congestion . Will update after her doctors appointment. 
pianist

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 #9 
Good to hear this last treatment wasn't too bad. It's hard to fight depression in a situation like hers. I know the cytoxan has made it very hard at times for me to stay active and do things to keep me mentally healthy. Please continue to let us know how things go!
Cakelady

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 #10 
For cytoxin saved my life. However I was hospitalized while I was given it and I was given other stuff with it. I lost all my heat and I couldn't really keep food down.
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sharon309

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 #11 
Daughter went back to kidney doctor today and after 2 Cytoxan infusions  the protein level in urine is still above 500, we was looking for a little improvement but maybe we are wanting it too fast. Her 3rd. infusion will be next Thursday 6/22/17 then she will have 3 more to go. She has been sick with head and chest cold since her last treatment and was on 1 antibiotic but not better so he put her on Bactrim today. She also has been very tired since the last treatment. Is there any other labs that we should be looking at to tell if her kidneys are  improving ? Forgot to ask the doctor.We can see all labs and all her medical reports online.
Thanks
Robinj

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 #12 
I am surprised he prescribed Bactirm as it is listed as a medication to avoid for lupus patients.

From Johns Hopkins Lupus Center:

(2)    Bactrim and Septra (sulfamethoxazole and trimethoprim)

Bactrim and Septra are antibiotics that contain sulfamethoxazole and trimethoprim. They are grouped as “sulfa” antibiotics because they contain a substance called sulfonamide. Bactrim and Septra are often prescribed for bacterial infections, especially urinary tract infections. They are also sometimes given prophylactically (i.e., to prevent infection), especially in people taking immunosuppressive medications. However, it is very important that you avoid Bactrim and Septra, because these antibiotics are known to cause an increase in sun sensitivity and lower blood counts in people with lupus, resulting in lupus flares. Several medications can be used instead of Bactim or Septra for the prevention and treatment of infection; perhaps the most frequently used substitute is Dapsone (diaminodiphenyl sulfone) to prevent Pneumocystis pneumonia.


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Cakelady

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 #13 
Cytoxin Is a harsh chemo drug she will be tired she will catch severything under the sun if you do not take procautions all of this should have been explained when she started cytoxin
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sharon309

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 #14 
Robinj I was thinking that also, I did not go with her today but I just told her to message her rheumatologist  and tell her and see if she can call in something else. You would think a kidney specialist would know this since he has other people with lupus nephritis. It's a shame we have to research what should 
and should not be taken. Thanks for posting that from John Hopkins , her  rheumatologist has always listened to me because she knows I research stuff.
Robinj

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 #15 
Good call Sharon! smiley: Thhighfive3 - keystrokes: :hi5
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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. 
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