Okay, so 3 years ago, the Hypertension Consultant suggested recent urinalysis showed I may have possible glomerulonephritis.
3 months ago, I started to experience 2-3 day flare ups of right sided kidney pain, right leg weakness and groin pain. These instances occured with oedema in thigh, arms and hands. Urine tests again showed proteinuria and haeminuria and blood tests showed unusual spikes in bad cholesterol. On Christmas Eve this latest flare up started, but never left?! Was in A&E for 7 hours, had CT scan and although no stones were seen, was given dihydrocodeine to help with the pain "as stones passed".
My GP is now referring me to a Renal Specialist. But with this pain continuing, along with joint pain, mouth ulcers and generally feeling terrible, what can I expect to happen next?
Guidance and advice would be much appreciated
Jo
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Missjosefina
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Welcome ! I'm fairly new to this site, and have found it very informative and helpful. I was recently diagnosed with FSGS ( Focal Segmental Glomerular Sclerosis ) and MN(Membranous Neuropathy). Both are kidney diseases where the glomeruli are attacked by the immune system, resulting in scarring. The glomeruli are the filtering membranes in the kidney. Symptoms include high blood pressure and cholesterol, protein in urine, edema, abnormal levels of creatadine and more....I have a nephrologist, and a renal dietician. I have also been taking steroids, and getting an infusion of Rituximab every 6 months. The Dr is all about trying to get each separate symptom under control with medication and diet. There are many things they can do and treat to help you down a path to better health ! I would suggest reading info you can find through the National Kidney Foundation website. It will be up to date and accurate. Best to you.
So, I've definitely been diagnosed with glomerulonephritis and/or IgA Nephropathy (unsure if it's a separate or same diagnosis). My consultation happened 4 months after the major flare up and I was pleased to report I'd stopped taking the codeine 3 weeks prior as the pain had finally become manageable. I had blood tests (including all the autoantibody ones because my half brother has Lupus), urine samples taken and clinical check up (no signs of oedema in wrists or feet)
Despite my explanation that I follow Low FODMAP, I'd still been experiencing water retention throughout the day (that makes my bra and waistband uncomfortable), the consultation summary stated 'no oedema'. The diagnosis was low grade glomerulonephritis (G1/A1):
- persistent haematuria associated with hypertension
- ACR 4mg/mmol (isn't this A2?)
- eGFR >90 (the test before came back 84)
- fluctuating lipids
- all other examinations proved unremarkable
The consultant concluded that I probably had an idiopathic nephropathy that is very common, so shouldn't need kidney biopsy until my grading reaches CKD Stage 3.
I'm therefore wondering if you have any advice about getting diagnosed for the specific type of nephropathy I'm experiencing? With the warm weather, my skin sores have flared up but, instead of reassessing my bloods for Lupus, I've just been given antibiotics and microbial wash/lotion to treat that. My candesartan has been raised to better control the blood pressure but other than that, I'm not on any treatment to mitigate the risk of further CKD progression. I continue to suffer with 2-3 reoccurring mouth / tongue ulcers at any one time and have had 4 bouts of cold sores in the right nostril since Dec 2020.
I don't know if I'm dreaming of a magic pill to help me feel less run-down or waiting to go up the staging before the nephropathy is taken more seriously.
As usual, your thoughts and guidance will be much appreciated!
Welcome to both you and kindsong to the community; you are among friends here.
Firstly, your feelings are absolutely normal. The words kidney disease can be frightening. Although there is no cure, kidney disease can be controlled with the goal to stop progression.
Most importantly, put together a medical team who listens to you and will communicate openly with you in basic terms and also consult with your GP and other doctors. They will keep an eye on your cholesterol, BP , blood levels among other things.
I would also ask to be referred to a renal dietician who will take a look at your labs and put together a meal plan which is appetizing and nutritious based on your needs.
Kidney patients eat a low sodium( 1200- 2000mg a day) low protein diet which excludes red meat and other high sodium meats as cold cuts, sausage and bacon. Potassium which is found in many vegetables and fruits is also monitored along with calcium and phosphorous which is found in dairy.
Avoid NASID pain relievers such as Advil or Motrin and replace dark colas with water and light colored beverages.
I am a Membraneous Nephropathy patient as well. Stress and such things as a even a cold can off set your immune system, so be mindful. I also pay attention to foods which will promote autoimmune health such as omega 3 oils, gluten free when possible and try to take a walk every few days.
Remember that every person is different and what may be recommended for one, may not be good for the other. Have a meeting with your doctor which should be your first line of communication.
Here are a couple of links about diet and nutrition to get you started.
I've been a long time sufferer of IBS so control that eating low FODMAP foods. But the mention of red meats makes me think that could be the source of my flare ups. I shall remove that from my menu and keep away from potassium rich foods.
Hi Jo, No thanks ever needed. I am happy to support!
As you know our kidney issues are a bit different than those of members with CKD as ours is autoimmune, which means that it could flare and then calm down.
As mentioned, a cold, illness, stress, it can cause your immune system to react and irritate your kidneys. This includes medication.
I also have IBS C, and take calcium, magnesium citrate +D3 liquid to address that and also provide calcium.
Remember that you can't cut out food groups but you can make good choices and modify.
I read labels well and most importantly watch my sodium level. My breakfast is 1/2 cup of Greek yogurt with Chia Seeds and flax as suggested by my nephro. I also may have some Cream of Wheat ( yellow box) often mixed with gluten free oats. Breads are light wheat, if that.
I eat a lot of salad with onions, peppers and cukes. I use oilve oil and vinegar or Bolthouse Farms Honey mustard or Hickory dressing as recommended by my RD years ago.
I steam, roast or grill onion, peppers. cauliflower, cabbage and green and yellow squash.
Spices such as onion, garlic powder, black pepper, turmeric and organic smoky paprika are great to cook with and no salt.
I also eat strawberries, blueberries, apples. rasberries and pineapple.
I have been plant based for a number of years now and love it.
I eat a lot of hummus with cukes and even put the hummus on toast. I just watch the sodium on the package. I cook with kidney, black and garbanzo beans, but that is fine for me. Pasta is veggie or wheat.
I avoid tomatoes as they are high in potassium.
I do eat a small amount of smoked salmon in the am at my nephro's suggestion to keep my albumin up.
Basically I look to not aggravate my immune system.
Hmmm
I found another link that may help with food choices, which is below.
So I've finally had my consultation and I'm G1A2, low grade glomerulonephritis. The consultant suspects it's IgA Nephropathy and made recommendations for primary care to implement...that letter was sent to them electronically on 12 May, I've spent 3 days chasing for an appointment but now have to wait until next week.
I've come back to this thread for inspiration on what I can do for myself. When I saw the consultant, I was actually feeling markedly better than I have been for the first 4 months of the year. Even then, my ACR was 4, my BMI has risen +5 and my cholesterol levels had spiked again. Admittedly, I am a bonnie lass, but because my Low FODMAP food choices have always kept my LDL <1, I really need my GP to help me tackle this spike, as well as address my concerns about blood clots. Likewise, my glucose levels are always low due to the low carb nature of managing my FODMAPs. I don't drink, don't use salts (I found that spice mix like Peri Peri or Jerk blends had hidden FODMAPs that would cause flare ups, so I now make my own blends), and choose chicken or fish over red meats.
This week, I've started to feel under the weather again. My mouth ulcers are back (2 new ones), my BP is rising (166/96 average) and I've now got coldsore blisters on the tip of my nose
🤦 . I drink a LOT of water - usually about 3 litres a day - but only add lemon slices or cucumber to flavour it. Should I reduce my water intake as I'm definitely retaining at the minute.
As always, your advice and guidance to useful websites is always appreciated.
Hi Jo! I also have glomerulonephritis, mine is stage 3B and egfr of 44 which is slowly declining. I don't get cold sores but I do get mouth ulcers and frequent infections in general, I'm on medication but genuinely the only thing that makes me feel better and less lethargic all the time is daily exercise and a good diet!
With regards to restricting water intake, I believe they only recommend to do this in later stages when you're under a renal dietician as they work out how much water to drink per day - not sure where you live but even at stage 3 I'm still not under a renal dietician yet but I do suffer with oedema which changes daily, tends to be my hands and face that suffer most with it.
Glad to hear you're doing all you can to stay active and keep your spirits up. Turns out I do have glomerulonephritis, as well as Sjogren's Syndrome. Seems like there's an underlying autoimmune connective tissue disorder that's the root cause. Still waiting for my Rheumatology referral, which means I'm also still waiting for treatment options. My hypertension meds have been increased and now I'm on a daily station because the cholesterol spikes even though I eat a strict low FODMAP menu to control the inflammation in my digestive system (this was diagnosed as IBS but most likely the Sjogren's, which has dried up most of my fluid-producing glands).
Apologies, I sound more negative than usual. I've been suffering a flare up. But I am hopeful that, with a diagnosis and a treatment to control the inflammation, I can start to feel better real soon. I used to love dancing and gadding about. I look forward to being well enough to get dance-fit, which always lifts my spirits.
Which hypertension meds have they got you on Jo? They seem to think mine started with preclampsia during pregnancy but not 100% sure, but my brother has since been diagnosed with severe urticaria which is autoimmune so does make me wonder if there is something underlying in our genes for us both to have autoimmune disorders!
Hoping you get your results soon and have a pathway to feeling better, I think even knowing there is a light at the end of the tunnel can make everything seem more manageable.
Pregnancy can definitely be a trigger, and family history of autoimmune disorders also makes us susceptible.
I'm on Candesartan 16mg and Amlodipine 10mg for my Hypertension, as well as Atorsvastatin 20mg to control the spikes in cholesterol. I've also had my first appointment with a Rheumatologist who is taking things seriously. She recognised that - certainly my hands and wrists - confirm that I am swollen (not just overweight
😀 ). She also explained that pain I'm experiencing from the inflammation will not be eased by 'painkillers'. So I've stopped taking the codeine prescription and paracetamol. Instead, I'm trying to ease the pain with ice packs and arnica gel.
Obviously, the point still is to identify the cause of the inflammation and regular flare ups. I've had blood taken for 18 different blood tests, a urine sample and x-rays on both hands. Tomorrow, I have an ultrasound appointment for both hands. Soon after, I hope to hear back from the Rheumatologist about whether anything is found.
I'd see if you can get a free genetic test. Turns out my kidney disease is more than likely due to the gene mutation what is also causing my retinitis pigmentosa and Sensio neural hearing loss.
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