lupus nephritis is worsening..

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AmyTx
Regular Member


Date Joined Dec 2006
Total Posts : 185
   Posted 11/4/2009 7:27 PM (GMT -7)   
any insight??

Curious as to who else has lupus nephritis and the different stages or classes it involves.. curious how your treatment is going and how well your body is holding up to it..

I was diagnosed in 2003 had a fairly easy go of lupus..until nov of 2006 had a pretty severe lupus crisis that almost killed me.. high blood pressure kidney issues and seizures and so much more.. it all resolved for the most part was almost in remission and my kidney s started spilling proteins agin..my kidney doctor redid the biopsy and now its active and i am at stage 3 and 5..more 3 and some signs of 5(inactive) ..they want to start me on cellcept once my respitatory infection is gone. i am extremely nervous and im thinking the worse..


tell me your stories please..

thanks so much im trying to be strong here.. in 2006 it was stage 2
Female: 37 yrs/old DX: Lupus (dx:'03) MCTD, Raynaud's, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage II Lupus Nephritis. mitral valve and tricuspid valve regurgitation, 9 tia's and one pontine stroke('06)Seizures('06), Photosensitivity since childhood, vasculitis, gangrene left thumb had amputated aug of 07,had mediport put in aug '07, Sjogren's, had left toe amputated in june of 2008. COPD dx oct 2008
Meds: Lisinopril,Keppra, Plaquenil,Prednisone 10 Mg/Day,Miracle mouthwash,Xanax, Darvocet, Xopenex inhaler, Xopenex Nebulizer, Spiriva, prevacid


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 11/5/2009 6:01 AM (GMT -7)   
Hey Amy! I started having kidney involment in January and was being treated with Cellcept at 2000mg a day. I went into a brief period where my lupus was very quit but then disaster struck again and I have had kidney failure 2times since September. Right now my kidney function is around 25-30 % depending on the day. Currently I am being treated with 60 mg of Prednisone and Cytoxan (which is once a month IV and I love it). I have had very few side effects from the Cytoxan except all my hair falling out. But it hasnt helped with my kidney problems either. In January after the biopsy, I was at stage 3 pushing 4. We haven't done another biopsy but have a feeling it will be comming if things don't get better. I mentioned something about stages...Lupus Nephritis doesnt have stages, the stages referred to are from the Kidney Disease depending on the severity of Kidney disease for ALL kidney diseases.

I saw the current lists of medicine you are taking and saw you aren't really taking one for Nephritis. Plaquenil has been proven to help prevent kidney involvement but has not proven its self in preventing it from getting worse. 10 mg of predisone is a extremly low dose especially if your nephritis is acting up. Are they going to up your prednisone to get the inflammation out of your kidneys? The cellcept is a wonder drug for most people and kidney involvement. It is becoming the new gold standard for Lupus nephritis. Most people have very little side effects from it but you will need to be careful around infections. Just be extra clean and cautious and you should be ok!



I told you my story with Lupus nephritis but I am not worried about it. I know something will work out eventually. Right now my story is pretty bad but there is a lady on here who has had what I call a miracle happen and hopefully she will pop in and tell her story!!!!



Please keep us posted Amy! I will be praying for you and for the best outcome!!!!

AmyTx
Regular Member


Date Joined Dec 2006
Total Posts : 185
   Posted 11/5/2009 7:39 AM (GMT -7)   
well im going up to 30 mg anything over 40 i get steroid induced phychosis... crazy things..good thing is my kidney function is good for now my blood pressure is doing really good..i need to update my signature some things have been changed.. soo they had mentioned cytoxan to me is it similar to cellcept.. i know you have a chance of hair falling out on cytoxan... but i had one doctor tell me that cellcept is great for kidneys so i will see.. i was saying classes of 3 and 5 then.. from the WHO classes of nephritis..

i appreciate your story as im trying to come to terms with this..

i used to be on lisinopril and hydrochlorithiazide but it dropped my blood pressure once my kidney settled down..but it makes me wonder because 4 days after i quit both meds my kidneys started acting up again..
Female: 38 yrs/old DX: Lupus (dx:'03) MCTD, Raynaud's, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage II Lupus Nephritis. mitral valve and tricuspid valve regurgitation, 9 tia's and one pontine stroke('06)Seizures('06), Photosensitivity since childhood, vasculitis, gangrene left thumb had amputated aug of 07,had mediport put in aug '07, Sjogren's, had left toe amputated in june of 2008. COPD dx oct 2008
Meds: Lisinopril,Keppra, Plaquenil,Prednisone 10 Mg/Day,Miracle mouthwash,Xanax, Darvocet, Xopenex inhaler, Xopenex Nebulizer, Spiriva, prevacid


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 11/5/2009 7:55 AM (GMT -7)   
To me Cytoxan is complelty different than Cellcept. Cellcept is pills and Cytoxan is a montly IV. Cytoxan is normally used to help treat breast or lung cancer but has shown great help for nephritis sine the 70's. I have had very little side effects, hair loss and nausesness (but pills help greatly for that) from the Cytoxan and I love the fact that its an IV so one less drug I have to take every day and I can't forget to take the Cytoxan. It has also helped my migraines and other stomach problems disappear. I love it!!!


The cellcept is a organ rejection drug so it helps your body not reject the organ you have recieved. It is also a immunosuppressant like Cytoxan. I had tons of issues while on cellcept, I had a lot of the side effects listed on the parmacy paper. But I am an odd ball when it comes to medicine. I usually respond the opposite than what normal people do.



I was also on Hydoclorothiazide but, ok, I know your gonna laugh, I developed the rare side effect of gout so they had to take me off of it. Yes, I am 21 years old and had gout. HAHA...The lisinopril I was on at 40 mg but has caused my potassium to go through the roof so they put me down to 20mg. My bp is now 110-94...Don't you love Kindey issues...Did you ever think you would be monitoring what your urine looked liked? LOL. Yes, comming of the Lisinopril could have caused more protien...I know it helps with Proteinura or how ever you spell it! Please keep me posted and its nice to meet you Amy [img]/community/emoticons/turn.gif[/img]

AmyTx
Regular Member


Date Joined Dec 2006
Total Posts : 185
   Posted 11/5/2009 9:38 AM (GMT -7)   
they had suggested cytoxan are you completely bald or has it come out in stages... i wouldnt mind the cytoxan at all... i hope its something i could do..i am allowed to take 2.5 lisinopril daily but honestly my bp is too low already ... ugh lupus smoopus lol
Female: 38 yrs/old DX: Lupus (dx:'03) MCTD, Raynaud's, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage 3 & 5 Lupus Nephritis. 9 tia's and one pontine stroke,Seizures, Photosensitivity since childhood, vasculitis, left thumb and toe amputated from raynauds, Sjogren's
Meds: Plaquenil,Prednisone 30 Mg/Day,Miracle mouthwash,Xanax, Darvocet, Xopenex inhaler, Xopenex Nebulizer, Spiriva, prevacid, aspirin 325mg


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 11/5/2009 9:45 AM (GMT -7)   
The spots that my hair fell out, it fell out over a weekend. On Thursday I had a full head and then Monday I was bald from my hair line to about 2 inches up all around my head but the top of my head it pefectly fine...except it has been shaved off now. I will say for me the hairloss wsnt a big deal, I had pretty short hair as it was and I have had a blast buying wigs! Oh yeah, I forgot since the Cytoxan, I have not had a problem with my hands, feet, or nose turning blue...It has truly been amazing for me as far as everything except the kindneys!

AmyTx
Regular Member


Date Joined Dec 2006
Total Posts : 185
   Posted 11/5/2009 11:16 AM (GMT -7)   
ahhh do you have raynauds too?? or vascular issues..i have had amputations from raynauds and vaculitis... i dont mind losing hte hair that much except when i was a kid i had an abnormally large and odd shaped head lol...im waiting for rheumy and kidney doctor to talk to see what i need
Female: 38 yrs/old DX: Lupus (dx:'03) MCTD, Raynaud's, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage 3 & 5 Lupus Nephritis. 9 tia's and one pontine stroke,Seizures, Photosensitivity since childhood, vasculitis, left thumb and toe amputated from raynauds, Sjogren's
Meds: Plaquenil,Prednisone 30 Mg/Day,Miracle mouthwash,Xanax, Darvocet, Xopenex inhaler, Xopenex Nebulizer, Spiriva, prevacid, aspirin 325mg


lupieMC
New Member


Date Joined Dec 2009
Total Posts : 2
   Posted 12/4/2009 11:27 PM (GMT -7)   
Hi Amy and Aimsgirl!! I'm also a lupie patient with lupus nephritis. I was diagnosed last december. Since then my rheumy put me on a cocktail of medications just as you both have. I started out with cellcept 1500 mg twice a day, 60 mg of prednisone, lisinopril, hydrochlorothiazide, micardis and some other meds i don't remember. since then it's changed though..well, the cellcept is still the same at 1500 mg twice a day, micardis, steroids are being tapered slowly (now on 40 alternating with 5 mg), sotalol, aciphex, simvastatin and bupropion.

I used to really hate having this disease because of all the fatigue. Even if i sleep 15 hours a day it still never seemed enough. have u guys experienced this?? I just simply can't get things done. holding down a job is simply impossible. But now, I feel like i'm on top of the world!! just this sept. my friend introduced me to a product called monavie. it's the single product that turned my life around. now i'm working full time as supervising nurse at a home health agency and being able to do the things i was before. and happier than ever!! when i was diagnosed my protein spilling was at 6. 5 months went by and things didn't really change much..but just drinking movavie for a month drasticly brought down my protein spilling to 0.83!! and aside from the really good lab results, i could really feel the difference. have you guys heard of the product?? maybe it could do wonders for you too!!

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 12/5/2009 8:07 AM (GMT -7)   
Hi LupieMC. As of recently I get exhausted but because of the steriods I get very little sleep! I am glad you feel like you are doing better. A bout monavie, one of my church buddies tried to introduce it to me. IF I am correct isnt it a immune booster? Why would you take an immune booster when you are on immunosuppressants? To be honest, I did try it for about 2 weeks doing 2 shots a day and my joint pain got worse! My kidneys didnt improve either...actually that is when it started going down hill it could just be I was getting ready to go into a flare but I don't want to risk it now especially since I am slowly starting to see improvement! I am glad it has help you so much!

lupieMC
New Member


Date Joined Dec 2009
Total Posts : 2
   Posted 12/5/2009 10:24 PM (GMT -7)   
oh, i'm so sorry to hear that..with all the steroids, i went through the same thing..always fatigued but never getting enough sleep. I guess there's a different response with everyone..i agree with you though, don't risk it. Especially now that you're doing better.

In some ways, when i was newly diagnosed and i was going through "HELL" ( i mean, being having to crawl just to get up, and not being able to take showers on my own was terrible) I would've paid anything and everything to get my life back. I really wanted to reach out to others and see if it would make a difference with them. The freedom I have now is truly priceless and i want others to feel the same freedom that I am. Would you know of any other programs that reaches out to lupie patients??

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 12/6/2009 9:25 AM (GMT -7)   
Lupie, Amy and Amy, lupus nephritis must be a scary thing to go through & I hate to hear, Amy, that your is getting worse. The drug companies all need to be doing more R&D and figure out how to get you guys well.

(((Hugs)))

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, lyrica, tri-est, cymbalta, acifex


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 12/7/2009 6:40 PM (GMT -7)   
Hi! I"m Judy! I've been fighting with Lupus nephritis for 10 years. I've had all of the drugs available along with massive steroids (up to 120mg daily) and failed them all. Last September ('08) I was at the end of my rope. My creatine was through the roof and my kidney function was 6%... I was placed on dialysis and told to prepare for a transplant or prepare to spend the rest of my life on dialysis. They gave me ZERO hope of my kidneys recovering. In March of 09 my creatinine began to improve and eventually got up to 27% and I was taken off dialysis! I still remain off of dialysis...almost 10 months...and my kidneys steadily improved and now i'm holding my own!

In January of THIS year, I was so sick; on dialysis, Lupus raging, one major infection after another and I could not imagine anything but laying down and welcoming the rest and relief that would come with my own passing. But...thankfully...God had other plans. I am not 100% but comparatively speaking I am GREAT! I'm able to walk in Walmart instead of being in a wheel chair...I can cook for my family....I can sing at church...all the little things I used to take for granted.

The moral of this story??? NEVER GIVE UP!!!!!!!!!!!!!! THERE'S ALWAYS HOPE!!!!
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