Just want to follow up with my experience of using steroids, traditional chinese medicine (TCM),  and acupuncture in my treatment of IgAN.

After about 1 month combined treatment of those listed above, my last 24 urine test results showed a protein level of 0.4 g and good level of BUN and creatinine.  The steroid must have some effects which everybody knows.  But long term use will definitely have some side effects.  So sooner or later, you need to stop using the steroids.  In this case, you take the risk that the protein might come back.  I know the TCM and acupuncture definitely have effects on me.  Only thing not sure is that how much effect they have comparing to the steroids, since they are combined.  Maybe this question can be answered after I start to reduce the steroids.  My neph still wants me to take it for next 3 months.  But I might reduce some amount myself.

I told my neph that I am taking TCM and acupuncture.  He warned me the first time he heard about this.  Since things turned out to be good, he did not say much last time I saw him.  Actually, he took a clear note that what time I started the TCM stuff.

Not quite sure what can happen if I fully stop the steroids.  Hope the TCM works this time.

Take care, Fu

Hello,
I just happen to stumble upon this site only now. I am 36 years old and have been diagnosed with IGA Nephritis over 2 years ago. They should have found out earlier, but the doctors mis-diagnosed it. Let's face it, you don't normally have a urinalysis done on our own, unless we have a check-up. If you're working, it's standard for the company to have an annual physical check-up done on everyone. So year after year, my urinalysis always showed a minute trace of RBC, which for a guy is not normal. Almost all of the doctors who saw the results thru the years said that it's just a kidney stone, so I should drink lots of water and take some medicines to flush it out. Again after 2 weeks another urinalysis was done. Some of the results would show 0 RBC and some would show a decrease. So the doctor would say "see, i told you!" But what i didn't know was that I already had IGA Nephritis. I started working when I was 20, so you can imagine that every year i was told the same story, up until 2 years ago, when I was telling my medical history to this doctor, he became suspicious about the whole thing and asked me to see a Nephrologist instead. I did and after showing him all the tests done on me, he ordered for a biopsy, and that's when he told me I have the disease and that only 0% to 60% of my kidney was functioning. I was started on the Fish Oil treatment, like what is mentioned nelow;

I was given 12 softgels a day or equivalent to 1200mg of Omega 3. The treatment was for 2 years. The problem with taking a high dose of fish oil is that your cholesterol shoots up, so Then I was also given meds for the management of my cholesterol and blood pressure levels.

After 2 years of fish oil (and monthly or fortnightly blood and urine work) the doctor saw that my creatinine level went up, so he prescribed that i take steroids. The treatment with steroids was intra-venously and then followed up orally (Prednisone). I had a high-dosage treatment and the side-effects were bad like : development of acne in my back and arms, which I treated with acne lotion, become bloated,(has anyone seen the NUTTY PROFFESOR??? - well...almost that bloated) and the most terrible side-effect is to the bones specifically that of the knees. Prolonged use of steroids can eat up the calcium in your bones. In my case, it just seemed that i had no choice so I opted to do what the doctor told me. But after fishing through this site, I can learn more about the disease and at the same time try helping others out too. I was facsinated by the person who wrote about acupuncture, and I might try that out. i'm also watching my diet; Low salt, low fat. Moderate protein, moderate calories. I have also stopped drinking beer and liquor, coffee and softdrinks. If i can't avoid softdrinks, i just take 7-up or Sprite and not the ones that have caffeine. I have also read that cranberry juice is helpful, but water is best for me.
I'm also looking out for some alternative/herbal medications. My friend is referring me to this alternative doctor who by profession is like a chiropractor. He told me that the treatment was like accupressure. Well, I hope there is no jarm trying that? Another friend is also taking me to a herbalist. I am not sure of what this person does but if ever i go for it, i'll post another message about it.

Hope my experience helps.

Greetings,

I was diagnosed with IGA at age 16. that was 12 years ago, I'm 28 now. I understand that IGAN is the most common type of Nep. 30% of people who have it end up needing to do dialysis and/transplant. I hope I am in the other 70%. I had my blood and urine done recently and they were that of a normal person.

Once in a while I get visible blood in my urine when I'm coming of a cold.I try not to get sick. I take a lot of Vitamin C when I feel sick. and start to take Echinasia. I recently started fish oil, on advice from the doctor. I started it as soon as I was diagnosed by quit it for about 12 years afterward. I also started ace inhibitors as high blood pressure is hard on kidneys.

I eat a totally normal diet and avoid fast foods. I recently cut back on salt and spice because of the blood pressure

I think there is probably people out there in that 70%, who probably don't even realize they have IGA. I just hope it has not affected me and thank god it has not affected my life for the last 12 years.

That's me, hope it helps.