Steroids

[SN23]

My son’s nephrologist is of the view that steroids have too many side effects and their benefits are not always evident. He is currently being treated only with Losartan for proteinuria which is stable. I recently read that steroids help in remission. I don’t want him to not get the treatment that he should. Would love to hear the opinion/ experience of this group. Thanks!

[Dixidude39]

Sounds like it's time for a second opinion. Hopefully you live in a large enough community that has at least 5 nephrologists .... and that you have insurance to cover this vital appointment. In Richmond, VA (where I live), I would go to a nephrologist at our local university medical school.

If young men without a medical condition take steroids to build muscle, I believe the medical community would warn about substantial side effects.

[SN23 in reply to Dixidude39]

Thanks so much! Yes we have insurance and access as well. The way forward is confusing as there is such divergence of conditions and treatments. But I agree it’s worth taking a chance and getting a second opinion on the steroids.

[Zazzel]

I have heard steroids can help certain types of kidney disease particularly nephritis and if one has lots of swelling. My cousin had a type of nephritis ( though she can't remember the type as it was 20 some years ago) and was swelling quite a bit in her ankles. She was given some sort of steroids and went into remission 6months later. She now has issues with joints and bone thinning which she feels is a result of the steroids. She says now that she is in her late 50's, she wishes she had known more at the time as she may have opted not to take the steroids due to the side effects.

My doctor has also opted not to give me steroids and is trying to control my protein with lisinopril. She feels that since I'm not having swelling and I still have a descent GFR last time I checked, I should not take it. She thinks it's a last resort option. She didn't say this, but I think it might be because my type of kidney disease is IGANephropathy and I have a weakened immune system, so I'm guessing it might me harder on me. I tend to be sensitive to medication.

At one point I was on a forum, though I can't recall where, and many of the patients had taken steroids. Some were in remission, some had terrible side effects such as face swelling and pain. Google " side effects of steroids for kidney disease." And you will find forums with people telling their stories.

A second opinion from a doctor is always good, but stories from patients also helps.

Best of luck !

[Zazzel]

Does your son have IGANephropathy? That is generally where steroids are used. If so, let me know and I'll send you some info via private message.

[SN23 in reply to Zazzel]

Thanks and yes he has IGAN. Grateful for any information. Please send.

[SN23]

Thanks so much! My son has IGAN too and does not have swelling. His doctor too says that it’s a last resort thing! I agree about patient stories and that is the reason why I posted in this very helpful group. Thanks so much for your response.

[Zazzel in reply to SN23]

I haven't found a lot of people on here with IGA Nephropathy. Thus, my suggestion to search on other forums. About a year ago when I found out I had IGAN I was able to find forum after forum of people saying good and bad things about steroids. The bad things scared me, so I didn't argue when my neph didn't want to go there. But, now it seems that Google has changed their algorythms and it is no longer easy to find this information, so I can see why you are asking.

There are also several groups on Facebook that is specific to IGA Nephropathy. I think there were quite a few people there who tried steroids. I decided to opt out of the group as it was taking up too much time and energy. I think this will be the fastest and best way to find your answer as everyone has IGAN and the group has 1.9K followers. This group is the largest. facebook.com/groups/1115522...

Here are some sites with stories of people who used steroids.

nephcure.org/connect/patien...

ihatedialysis.com/forum/ind...

Here's a good study on it ncbi.nlm.nih.gov/pmc/articl...

I also sent you a private message with more info.

Good luck!

[SN23]

Thanks so much for your detailed and prompt response. I also saw this study ajkdblog.org/2017/05/04/spi... This suggests that steroids may help iga patients.

As you said every case needs to be evaluated and addressed taking everything into account.

Again really appreciate all your help,

[kinzBravo10]

Hi SN23 - I have IGAN and my nephrologist had placed me on a steroid treatment during a time when my numbers were steadily declining, so it made sense for us to go ahead and give it a try. He is always up on the latest studies and knew of the possible positive effects it could have on the disease. I was on it for a few months, but unfortunately, it was not having any positive effects on my numbers, so my doctor took me off.

But as with all of these experimental treatments, how the treatment effects one person, does not necessarily mean that that is how it will treat everyone. So, as Zazzel had mentioned, I think you will get a better idea of the odds of it helping by speaking to as many people as you can that have tried it already.

Unfortunately, I am now on steroids for the rest of my life, due to my recent transplant. While I can say that the side effects are not always easy to copy with, I will say that the side effects I experienced all those years ago were much milder than what I experience now (perhaps due to duration and dosage).

I hope you are able to find all of the information you need to help your son make a sound decision. If you have any other questions, don't hesitate to ask!

Good luck

[SN23]

Thanks so much! Really appreciate your taking the time to write this. So very helpful!

[Blackknight1989]

My guess is the doc is worried about the long-term impact of putting your son (22-40 years old??) on steroids. Unfortunately they (steroids) seem to be the best med (currently) to provide any type of real longer-term relief or benefit for the CKD issues. Currently, steroids and a couple of other types of med types are all (as you know) that are available for any kind of real treatment for our issue. This, I’m sure (or really I’m guessing) the doctor doesn’t want to start the immersion into such treatment at such a young age with the potential to need the meds (off and on at least) for the next couple of decades. No idea really just my guess. Take care!