I'm a 31-year-old male who was diagnosed earlier this year with IGAN with rare crescents. I have no family history with this autoimmune disease, so I've been trying to navigate adjustments to my lifestyle with advice from my nephrologist and from the great people in this community.
I recently finished a sequence of chemotherapy and have been staying very isolated due to my immunocompromised state. I'm not sure how much longer this state is supposed to last, but I have read/heard that even after the latent effects of chemo wear off, I am particularly susceptible to other illnesses (e.g., COVID, flu, other upper respiratory infections), which could "re-trigger" my autoimmune disease's inflammation.
With those things in mind, I'm very curious about how others with IGAN move through daily life. Right now, I pretty much stay in my house and only go outside to walk or ride my bike. When going outdoors, I'm always bringing a mask and putting it on when approaching another person. I am not going inside except for required hospital visits. I definitely don't relish the thought of continuing like this after the chemo's effects wear off. Do others regularly wear masks or avoid contact with people? How do you manage the fear of catching an infection that could exacerbate your IGAN? I know everyone's comfort level is different, but I sincerely appreciate all perspectives.
Thanks all.
Written by
tomjohn109
To view profiles and participate in discussions please or .
I can empathize with the challenges that you are facing; bear in mind that this is a process and you will get through it.
Although I am not an IGAN patient, several of my friends in the community are and we support each other.
I was diagnosed with idiopathic Membraneous Nephropathy; a similar autoimmune kidney disorder in 2018 , so I understand any concerns and frustrations that you may feel.
Despite being double boosted, I social distance, always wear a mask when around people; especially in a close congregate setting; markets, pharmacies, etc.
I don't know the name of the specific chemo medication that you were given to reduce your protein spilling and try to stop the progression of the disease.
To begin, I would carefully read the directions for the chemotherapy that you were given as well as google the drug and look at the write up from the company as well.
I would also look them, and any other medications that you may be taking up on Drugs.com.
I have the APP on my phone; it shows you mild, moderate and severe interactions as well as possible side effects. There is also a place to which will identify medication interactions of drugs that you take.
Most importantly, I would make an appointment and have this discussion as well as any other lab and medication related questions with your nephrologist. He/ she have recommended and prescribed your medications and knows you and your individual case well.
I would also print out copies of your labs before appointments. I add in prior results next to my present results to show any trends as well as check off any areas which may flag high or low according to the lab ranges and discuss them; do not leave the office without having all questions or concerns addressed.
Remember that each person is different and their bodies and immune systems are also different.
If you aren't doing so tweak your diet a bit.
Low sodium ( 1200- 2000mg per day) low protein; avoiding red meats, fatty foods as sausage, bacon and cold cuts as they are also high in sodium , as well as prepared foods as canned soups. Watch potassium found in various vegetables and foods as well as phosphorous, found in grains, and dairy.
Avoid the use of NASID pain relievers such as Advil, Aleve and Motrin as well as dark colas if possible.
Eat a diet filled with fresh or fresh frozen vegetables; grill, steam or roast, drink plenty of water as well as add fresh fruits such as berries, apples and pineapple to your diet.
Because IGAN and MN are autoimmune disorders also avoid foods which initiate inflammation such as sugar, sugar sweetened cereal, refined carbohydrates, such as white bread and pastries as well as fried foods.
Below are a couple of links to take a look at.
Please feel free to reach out again and let me as well as other IGAN patients in the community; will let them know as we are happy to support.
Thank you for the message and for the helpful tips. The medication I was on is called cytoxan, and I will look it up on drugs.com. I've been following a low-sodium and low-animal protein diet (slowly moving to plant-based) in response to my dietician's recommendations, as well. Thank you again for your message.
Hang in there as this is all a process which takes time; I'm just glad that you are under good care and moving forward.
I have heard of Cytoxan as a friend was given this drug successfully to com Minimal Change Disorder; another autoimmune kidney disease. She was advised to wear sunscreen, no grapefruit juice and common sense; this was pre- pandemic.
At this point, I would ask your nephrologist and PCP their thoughts on the boosters and any specific accommodations that they recommend while you are on this medication.
You are doing all of the right things to keep yourself safe and protected by social distancing, masking and sanitizing as well as washing your hands. I also spray the bottoms of my boots with Lysol when I come in.
As far as diet; I have been totally plant based for years and love it. It's a lifestyle for me and has helped tremendously with both my MN and overall health.
Just remember that every person is different and will respond differently to both particles in the air, medications etc.
That is all very interesting. I was diagnosed with CKD & Biopsy showed IGA Nephrology but was never told to avoid sugar, sweets or fried foods specifically...just to eat healthy and ok to have once in awhile. I have these things weekly and perhaps I should avoid all the time. I'll check into this further.
I'm not surprised that you weren't told to avoid or modify certain foods as to try to prevent inflammation.
My first nephrologist gave me the same answer that you were given; eat healthy. I did some reading on Membraneous Nephropathy, kidney disease and diet to learn more.
Check out my post to tomjohn.
At my initiative and choice, saw a renal dietician after my biopsy who gave me great tips and suggested food choices to help put me in a healthier position.
Since, I have found a wonderful nephrologist who will talk food with me; I brought in a list of foods from my diet for him to look over on our initial visit, which was appreciated. If he hears of something new or I do in the way of goods, we share.
Basically both the RD and my present nephrologist told me the same thing.
Low sodium ( 1200- 2000mg per day) low protein; avoiding red meats, fatty foods as sausage, bacon and cold cuts as they are also high in sodium , as well as prepared foods as canned soups. Watch potassium found in various vegetables and fruits such as tomatoes, potatoes, avocado, white beans, brussel sprouts, broccoli and bananas, to name a few. If your potassium levels are normal; blanche and even consider beans which is plant based protein.
Also watch phosphorous, found in grains, and dairy. I have a 1/2 cup of Lite and Fit Greek Yogurt with Chia Seeds every morning and fat free ricotta cheese when cooking for a special occasion.
Grill, steam, bake, roast with great spices which do not contain sodium; this is for vegetables as well as chicken and fish. Watch sodium levels on salad dressings, fried foods, alcohol and tobacco. What I was told.
NKF and AAKP have great sites as well as Mayo Clinic.
Yes, I appreciate the information and will be discussing this further at my next appt. My biopsy was about 2.5 years ago and my GRF dropped from 28 to 6 during that time. I'm going to be probably be starting dialysis soon( discussing next step at my upcoming appt) Where are you at as far as GFR and any dialysis? Take care💕
I wish that I could be of more support to you at this challenging time.
Your medical team are there to assist you and provide the most comprehensive care possible with compassion.
Write down questions and don't leave your nephrologists office until they are all answered in basic, clear language; especially regarding diet, dialysis and a plan moving forward.
As far as myself; last appointment my labs showed stable and no progression. I thank God for this blessing.
Know that you are not alone in this journey. Reach out at any time.
I just wish here on the UK we had access to all the info that you do on the United States. Though I have a single kidney and now stage 4 nobody has ever advised diet or what I should do to make changes apart from avoid some pain relief and only paracetamol at a push. I'm still waiting for the results of blood tests I had done at the beginning of month which were sent to renal department and a urine test Still waiting for a vituial clinic phone call or letter from the specialist regarding recent results.
Hi Ruthy, I can' t even begin to imagine what you are going through at this time, but know that you are not alone.
I have friends in the UK who have shared their frustrations with lagging ability to see their GP and also a consultant without feeling unwell and a visit to the ER.
Even here in the US, many
GP 's and consultants do not suggest that patients alter their diets or see a Renal Dietician.
The important thing is that you have found us; and now can advocate for yourself when you get your results.
Below are some links to read which should be of help:
I will take a look at these links and try contacting the hospital for latest results quite scary information and nobody is helping. Just lately feeling really tired bloated but not over eating or drinking. If do hold any urine I have to make myself go when need to when ready.
Ruthy, I am sure that the information can be overwhelming at first. Pick out what you deem the most important things that you want to know and feel that you were not told such as diet and treatments.
Remember, these articles spell out all case senarios; good and bad. Every person is different as what may apply to or be good for one person, may not another.
Let your doctor know that you are feeling tired, bloated and unwell.
He/ she knows both you and your case and have been treating you. It is their job to care for your health; this includes listening well, explaining labs and other issues in plain language. Additionally, based on labs should be setting up a medical action plan designed to meet your individual needs; discussing it with you and providing advice going forward.
Ring him or her up and have a chat. Will be waiting to hear.
I’m a 34 year old woman diagnosed with IgAN last year. Did you have chemotherapy for your IgAN? If so, that’s pretty extreme. What’s you GFR and proteinuria?
I wear a mask around people. I’m not immunocompromised but I didn’t get a Covid booster yet because of a reaction to the first one. I’m waiting for the more traditional Covid vaccine to come out this summer. You can get addition treatments to protect from Covid. Have you gotten those? In addition to the boosters there’s something else. I can’t recall right now but can look it up.
I also pick and choose what I’m willing to risk. I decided to travel abroad last year and will do it again (checking things off my bucket list!) but I’ll wear an N95 mask and be very cautious.
Speaking of picking and choosing what you’re willing the risk… there is a conference in mid July for people with IgAN. You can go to IgAN.org to learn more. Everyone will have to wear a mask and will be tested. If you can’t afford the airfare or registration, the foundation will pay for you. Feel free to ask me if you have more questions. I’ll be attending and I volunteer for the foundation.
I recommend joining the iga Nephropathy Facebook group. This page is great but there aren’t a lot of people with IgAN on here.
Thanks for your message. Yes, the chemo (cytoxan) was intended to address the IgAN. My GFR had dropped by 50% in <2 months preceding my diagnosis down to around 37, but it's now around 52.
I've gotten 2 COVID boosters at this point but still feel anxious about being around crowds for the moment. I saw that IgAN Foundation had a convention in Nashville this year, but I don't feel comfortable traveling on a plane for right now (I wish it had a virtual attendance option!).
How do you handle any concerns about catching infections day-to-day? Do you just socially distance, don't go indoors and wash your hands? I might be overly concerned right now because my diagnosis still feels very new, but I really do appreciate your help. I'll also look into the FB group. I had deleted my FB last year, but maybe it's worth signing back in just for that.
Do you mind me asking what country you're in? I ask because KDIGO (which provides recommendations each year on how to treat IgAN) doesn't recommend Chemo. And only recommends steroids as a last resort. What are you on now? Sorry to be nosey! You don't have to share if you don't want to. I must admit your drop in GFR was very severe so maybe they needed to resort to that.
The other shot I heard of is Evusheld. I've heard of many transplant patients getting it because they're immunocompromised.
I'm very cautious. I don't eat indoors. I work remotely. I go inside for necessities and otherwise only socialize outside. That being said I have friends and family who are willing to mask indoors for me and even get tested and quarantine. My biggest risk is my husband. He's a college professor but he required masking in his class last year and he never brought home COVID (knock on wood!). I feel a little better because there is medication should I get COVID. There are IgAN patients who don't wear masks, eat indoors, aren't vaccinated, etc. It depends on who you talk to. I've decided to risk the things that are most important to me (primarily travel), but only wearing an N95 mask.
The IgAN Facebook group is great for getting information especially on new treatments but with everything on social media, I take it with a grain of salt.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
CKD & autoimmune disease
Dangerous Transplant or Dangerous HD. That is the Question.
Can general illness affect your egrf
Can Contrast used in a CT scan cause you efgr numbers to drop?
Post Transplant Side Effects
