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High does prednisolone/ high protein levels FLU SHOT ands H1N1 SHOT

lovemykayla
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I have scheduled Makayla twice for a flu shot and each time she relapsed right before her appointment. Neph doc said NO to the shot during her relapse. Now she is telling me to go ahead with it..... Kaylas on 15mg/ml oral, 6mls 2 x a day everyday and is spilling a 3+. Has anyone given their child the flu shot under these conditions? I'm concerned with how it will effect her? Neph is also pushing H1N1 which I worry about too. I understand it's necessary though. Advice and experience is appreciated.
3+

Explore topics in this discussion:

Lasix CellCept Cytoxan Prednisolone Pain Cyclosporine Prednisone Papilledema Pseudotumor cerebri Fever

20 replies

L-L-B

I am an adult with FSGS. I haven't talked to my Neph about the H1N1 vaccine yet because he is on vacation for another week. But personally I am very worried about getting this shot. I have read that it will weaken our immune system. I realized that this is what my Neph wants to do with the meds that I am on. But do I really want to weaken my immune system at this time with H1N1 going around. I don't think I am going to take the shot even if He wants me too. Plus I also think they have thrown this vaccine together too fast with not enough research in to the long term effects. i think I will take my chances with the flu. Mind you I am an adult and can make that decision for myself. You on the other hand have to out way the pros and con's for your precious child. Good luck with your decision.

D-Marie

Sorry I don't have any advise - because I am in the same boat. Very undecided about the shot. My son always gets a relapse when he is sick, so I am so afraid to inject him with something not well researched. He is 15 and has never had the flu shot ever. His old doctor said don't - so I felt it might give him another relapse. But with everything going around I am so worried - just keep praying for the right answer. My Doc now says get it - but my son doesn't want to.

CatherineL

Are you registered for our Lunch and Learn Patient Seminar coming up on November 7? It will be in Brentwood and you can ask questions of physicians who will be there presenting information. Let me know if you'd like information on how to attend.

Catherine Lepone, NephCure Foundation

BABYWITHFSGS

I am very nervous for my son to get the H1N1 shot also. His neph dr. said we had to wait for him to get the shot until his pred. dose is tapered some what. I am not sure why but i think it is so his immune system won't be so low. He is also on cellcept 2x a day. We will be getting him the shot asap. There are too many children getting really sick from this flu and a few are in my daughters school.

duker

hi,

My daughter got both shots. She got the regular flu shot back in sept and was fine. she has gotten them every year during relapses or in remission. my nephs do not think that a relapse and the flu shots are related- at least for my daughter's type fsgs.

She did relapse 2 weeks later this year. BUT , we are quite confident it was b.c of her rapid B cell return(she is on rituximab) not an immune response to the shot.

last sunday she also got the h1n2 vacc. (dead). Clearly the best thing to do in my eyes. My older daughter (13) got h1n1 flu and it was severe. lasted 10-12 days before she had the stamina to go back to school. she still has lingering leg pain from the illness - makes it difficult for her to walk at certain times of the day. they put my nephrotic daughter on tamiflu prophylacticly during that time.

my 10 yr old son has it now. we were on to it quickly (w/in first 36 hours) so they have put him on tamiflu too. we were really hoping it was strep (!), but it wasnt. His fever is only 100.9 (for last 2 days) , but severe sore throat and pains (minor cough for my son's swine flu--was much worse for my older daughter's). I hope the tamiflu will shorten the duration for him.

I am very happy with my decision to get my nephrotic vaccinated for both. she is even still relapsing since early oct, but I personally think when weighing the pros and cons it was best for her to get the h1n1 vacc. I have seen the swine flu and it really can be scary. It is very difficult to find out here, but my ped managed to get a few doses for his sickest patients.

good luck with your decision

pepper

Sorry, I haven't been on this site in a while and just happened to read this today. No, I am not registered. Could you please send info. to me? My email is
amyculpepper@bellsouth.net
thanks!
Amy

lovemykayla

Thank you for your response. Our neph is also pushing us to make a decision between cyclosporine and cytoxan. She said yesterday to make a decision by monday because the pred is not lowering her protein. She's been in relapse for 8 days now spilling a 3+ and on 6mls 2x a day. Has your neph ever mentioned those meds? And how is cellcept? Does that go along with pred?
3+

Sarretta

Hi,
My daughter, Lauren has NS and relapsed in mid-Oct. We have her on Pred and CellCept, which got her to remission before and they raised the Pred dosage to get her back (which worked the last time we relapsed). She's gone from 4+ last week to 2+ this week, but it takes time! We just got her the H1N1 shot yesterday -- the minute it was available. Her Ped/Neph agreed it was the best course -- losing protein is one thing, you can get Albumin and treat it, but if the H1N1 hits a kid with a lowered immune system/compromised system it could be very dangerous. Lauren got the seasonal shot back in September and she did relapse about 5 days later. We're not sure if it was related. You have to make your own judgment. The docs don't think that the "dead" flu shot should cause a relapse, but it's certainly possible in my opinion. You have to balance that against the risk of getting the flu. If she's in school or around lots of kids each day her chances are higher, but if you're keeping her at home, it may be that you're not at significant risk. Either way, I would have the rest of your household get the seasonal and H1N1 mist/shot so that you don't carry it and expose her at home. Our whole family got both flu vaccines. Good luck! (BTW, are you in Los Angeles?, we're in Santa Monica).

lovemykayla

Hi, were in the southbay, not too far at all from santa monica. Will you be attending the seminar next saturday? Also our neph is pushing for cyclosporine or cytoxan? Never mentioned cellcept? She tells us its bad for kayla to be on high dose pred. And to make a decision by monday. Kaylas been in relapse for 8 days now and is not responding to 6mls of pred. Shes starting to retain water so I am also giving lasix. Any advice on those two drugs and the one your child is on? We are fairly new to this she was just diagnosed in July.

Sarretta

Lauren was diagnosed in March. CellCept has one of the lowest side effects for these types of drugs. Because it worked with the initial treatment with Pred (she was Pred resistant), we've kept her on that course. I'm not familiar with the other choices, although I know many people on this site refer to those as well.
We'll be at the seminar next weekend and at the walk the following week -- are you the Kayla's Kidneys team? We're Lauren's Legion!
Who is your doctor? We have two -- Dr. Yadin at UCLA and Dr. Kamil at Cedars.

lovemykayla

IS Cellcept a steriod? I wonder why our Neph never mentioned that? Those two meds I mentioned have horrible possible side effects, kidney damage, hair loss, and could cause her be sterile :( I am scared to death of both those meds. Our Dr. is Janita Russo shes out of Millers Childrens Hospital in Long Beach. And Yes! We are Kaylas Kidneys! And we will be at the walk! Can I ask why you have two docs?

BABYWITHFSGS

I personaly think cellcept is the best medicine for this disease as far as side effects go! The cytoxan wasn't that bad just a little hair loss and monitor w.b counts once a week. I am just shocked your neph is pushing these meds so soon!!! Does your daughter have a lot of swelling?

lovemykayla

BABYWITHFSGS was your son put on cytoxan? And yeah checking blood counts really steers me away from that drug. Nephs saying it can put her into remission for quite sometime and keep her drug free. Kaylas considered a frequent relapser and is been on high dose pred since July. Shes not too swollen but the pred sure has given her chushing goid. My poor baby doesn't even look like herself anymore :( Oh and neph also said cyclosphorine, those are our two choices.

BABYWITHFSGS

My son first got sick when he was 8 months old that was in june of 2007 he had two biopsys by december to confirm fsgs! He was on high dose steroids for 10 months before they started the cytoxan! The cytoxan didn't work for him. After that we tried the cellcept which has helped him alot. The cytoxan has helped alot of other children I think that is why alot of the neph doctors choose that drug first. My sons neph doctors just thought they would give the steroids time before they wanted to start the cytoxan and we would have to go for albumin infusions 3x a week back then.

levismom

Good morning,

My son Levi was diagnosed with NS/MCD in August 2007. We did the predisone and he would never go into remission. We did a kidney biopsy in December of that year. In January we got the results. He also develped high blood pressure. After many hospital stays, and also 6 albumin infusions Levi started the cytoxan, and did 12 weeks of the medication. I have to say on April 15 2008, he went into remission. We did keep him as isolated as possible during those 12 weeks, because we did not want him to get sick. It was a long journey, and too see him suffer so much was horrible. I know the decisions about the medication are rough, but for us it was the right one. Levi has had more side affects from the predisone than the cytoxan. PLEASE, when you wean your daughter off of the Predisone, do it slowly. Levi developed Papilledema (pseudotumor cerebri) which is fluid on the brain. He has since had to indure 3 spinal taps, to bring the pressure down. While all medications have side affects. I never would have thought he would have suffered this, I thought it would have been more with the Cytoxan. Praise God, he is still in remission. I hope this helps a little. If you have any more questions please ask.

shawny816

Hi my son is 3 dx with ns taking 30 mg daily prednisone for a month complete remission started tapering to about 20mg every other day. Today for the first time in the morning his urine was dark yellow and cloudy and there was a trace tested an hour later clear urine and no protein. I know you have gone through this journey yourself should i be worried at this point.

shawny816

Hi my son is 3 dx with ns taking 30 mg daily prednisone for a month complete remission started tapering to about 20mg every other day. Today for the first time in the morning his urine was dark yellow and cloudy and there was a trace tested an hour later clear urine and no protein. I know you have gone through this journey yourself should i be worried at this point.

BABYWITHFSGS

My son's urine is always dark yellow foamy and cloudy in the am he always tests trace! Hardly ever do we see a neg. I honestly wouldn't be too worried about it his neph dr's said once it gets to 1+ then to call. Good luck

BABYWITHFSGS

My son's urine is always dark yellow foamy and cloudy in the am he always tests trace! Hardly ever do we see a neg. I honestly wouldn't be too worried about it his neph dr's said once it gets to 1+ then to call. Good luck

BABYWITHFSGS

My son's urine is always dark yellow foamy and cloudy in the am he always tests trace! Hardly ever do we see a neg. I honestly wouldn't be too worried about it his neph dr's said once it gets to 1+ then to call. Good luck

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