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Membranous Glomerulonephritis
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ChloeAlexis posted:
I'm a 28-year-old female. Due to persistent proteinuria and hematuria, I had a kidney biopsy a few days ago. My doctor says preliminary pathology report points towards membranous glomerulonephritis. I've done some research and learned that this disease progression and prognosis are very unpredictable. Its course of treatment is highly controversial. I'll receive my definitive biopsy result next week. Currently, the doctor has put me on 30mg of Prednisone a day. If there's anyone out there who could share his/her experiences with this disease, I'd greatly appreciate it. My main concerns are: if i decided to start treatments with immunosuppressive agents (e.g. CellCept or Cyclosporin), what are the side effects? Are there other options of drugs with less side effects? Would I be able to continue to work and carry a normal life style (I'm a practising dentist)? Thank you for anyone who could offer me any advice.
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John-SKPT responded:
I don't have MGN but have taken Prednisone/CellCept/others for years.

Prednisone is an effective drug but has an ugly side effects profile. Fortunately you probably won't be on 30+ mg for long, it should be tapered down fairly soon. Watch out for odd and unpredictable moods, and just try to handle it with the knowledge that it is only the drug. Goofy hunger is a given with corticosteroids, the brain just thinks that the body is hungry all the time. You just have to be aware of this and consciously override the nearly constant desire to eat something.

CellCept/Myfortic (mycophenolate) is a really good drug, and most people tolerate it well, though a few have really severe GI distress with it. I've never heard of anyone who has GI problems getting fewer side effects with lower doses, so if that turns out to be the case, start pitching the case for anther drug. Myfortic is supposed to be better with GI issues because of microencapsulated delivery, but it still causes some people great problems. Azathioprine is a very old drug but can be used where mycophenolate is not tolerated; I've take this for years with zero complaints.

Cyclosporine/Prograf class drugs are heavy duty, but have few short term side effects. Long term nephrotoxicity is a big drawback, but probably is insignificant in the short to medium term.

Cytoxan (cyclophosphamide) is maybe the 'biggest' drug often used for MGN/MPGN. Lots of side effects reported, but sometimes works when other things fail. It's an old line chemotherapy drug, but it does get used in cases of autoimmune or severe inflammatory reactions in renal tissues.
 
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ChloeAlexis responded:
Thank you for such helpful information on the drugs. It gives me a better idea when I speak to my doctor.
 
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emgiles responded:
Hi! I'm a 28-year-old female who has been diagnosed with MGN for 3 years now. I have had about every treatment in the book and am currently very happy with my almost full remission, finally. Did you just start the prednisone? There are a lot of side effects that can come with that medicine, maybe you are familiar with those already. I'd be interested to know how much protein you are currently spilling in a day and if you are on any other medicines for this. My highest protein levels were 10g/day and now I am down at .5 gms. I am on an arsenal of meds to treat the symptoms caused by the disease and am on Prograf as my immunosuppressant.

I can't tell you a whole lot about the side effects of cyclosporine because I only lasted 5 days and had vomitted so much my doc decided to go a different route. Then I tried the CellCept. I would have a headache the first couple of weeks, and my stomach was slightly upset, but not to the point of vomitting. Overall, the side effects of this one was manageable and I was able to go to school and manage with two young kids just fine. Unfortunately for me, it didn't work at all for me, even on the higher doses.

If you are on immunosuppressives, it is very important to be careful around people with infections.

Emily
 
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ChloeAlexis responded:
Hi! It's such a relieve to hear from someone whom I can relate to. I've read that MGN is a rare disease that happens predominately in male around 40 so I didn't get my hopes up in finding someone who's in my similar situation. Thank you for sharing your experiences with me.

As of last week, my daily urine protein is at 2.89g/day. As of now, I don't have much physical symptoms. No edema (but i'm limiting my fluid intake to about 1.5 liter a day). BP is normal. No weight gain. The one thing that really bothers me is that I'm urinating frequently (every 2-3 hours) but always in low urine volume. Does that happen to you? I'm going to see my doctor next week for my definitive biopsy result as well as another 24-hour urine test.

Emily, has your doctor spoken to you about the impacts of all these drugs on pregnancy? You see, I got married less than a year ago. My husband and I are planning on having kids in the next couple of years. Does it mean once I start using a variant of immunosuppresives, our family planning needs to be put on a long hold, or worse, can't even be a possiblity? Are immunosuppressives and toxic chemodrugs absolutely necessary for treatment of MGN?

If you'd like, you could email me at migno123@hotmail.com. Thank you
 
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bendix responded:
Prednisone is the standard initial treatment but as others have commented does have some unpleasant side effects. Your dosage seems relatively low so you may not experience them. Cyclsporine is a next possible treatment. At least one trial has indicated that Rituximab is effective which is a relatively safe drug but generally not used for this.

I have found that flying exacerbates my edema problems as do long car trips. I have much less tolerance of alcohol. Exercise is helpful as are foot massages (and they feel good)

I have had this disease for four years learned to live with it. Good luck!
 
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DaveP1980 responded:
ChloeAlexis,

I am a 28-year old male. I am also a stubborn person, at least in the past. I tested +++ for proteinuria on a simple urine dipstick in 2002 (passing 10g protein/day). I did nothing until my blood pressure rose into severe hypertension (175/105) in 2007, when I had myself checked and was diagnosed with Membranous Glomerulonephritis. it is proven by biopsy.

Websites give a cynical prognosis, but I would not let that discourage you. treat the disorder as aggressively as your body & physician will tolerate. I initially took 80mg prednisone, and 2g cellcept daily. Also, I took Lisinopril, Lopressor, and benicar for blood pressure.

The prednisone was wildly mind-altering until the dosage was tapered below 20mg. I presently take 10mg prednisone/1g cellcept daily, and I can hardly tell I am on them. My kidney function has been stable (based on blood count) since diagnosis, and my proteinuria has fallen by an order of magnitude (now 1g/day). If anemia is an issue for you, aranesp is an excellent drug that was given to me, though it may take a few months to fully work, and is very expensive (a typical 200mcg shot cost about $2500 without insurance). I take testosterone enanthate instead, but being a female you probably won't want to do this. Most insurances will not cover aranesp for mild anemia, but you can take iron, B12 and hormones to boost it naturally. Slight anemia is something your body will (may already have) adjust to. Blood pressure must always be controlled because kidney damage causes hypertension, and hypertension causes kidney damage. You may need multiple classes of BP medication in high doses. Words of encouragement:

Carrying out a normal life: I am in stage four of the disease, and I continue to install mining equipment in underground coal mines (a very exhausting profession), in spite of my troubles. Keep pills in your pocket if you have trouble with potassium, anxiety, arrythmias, etc. All can be dealt with.

Side effects: Prednisone at high doses (>20mg) is pretty wild. I began having panic attacks, erratic apetite, irrational aggression, and tremors. cellcept: I had one outbreak of shingles about 3 months after starting cellcept. Otherwise, I cannot tell I am on it. I have begun taking myfortic as it is about 20% cheaper. Cyclosporine: Many nephrologists stay away from it now that drugs with fewer side effects are available. Lisinopril--this will push your potassium up. You may have to combine with a thiazide or furosemide to compensate. High Potassium is quite bizarre for several reasons: 1) symptoms are almost identical to low potassium. 2) It is often associated with loss of coordination and tingling/numbness. Prednisone can cause the same. Have your potassium checked regularly and follow your doctor's dietary recommendations.

I feel better and more able to work today than I did at diagnosis. I have gained 40 pounds (lean) thanks to the anemia treatment, and I can eat or drink anything, in moderation (including alcohol).

Faith in God is also of great importance. The divine capacity to heal and stabilize is quite unmatched, though its precise impact is unmeasurable by human accounts. Just because you have a disease does not mean you should abandon your faith in God if you have any, or refuse to have faith if you do not already. My own Christian faith provides great assurance and strength.

The biggest key to leading a normal life is to live normally when you feel well, and play hurt when you don't. Forfeiture of your normal life is acceptance of defeat. Kidney disease can only take your life--it cannot take your soul. With faith and proper management, it may not take either.

God Bless,

dap1255@yahoo.com
 
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ChloeAlexis responded:
Thank you so much for your kind words and advice. They're extremely helpful!
 
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pyao88 responded:
It is to my great sadness to report that my cousin ChloeAlexis has committed suicide. It seems that she went into a depression last week.

We are trying to make sense of it. It seems she was still positive with her reply on 1/12. You had mentioned that Prednisone at high doses (>20mg) is pretty wild. Has it been linked to suicidal behavior or severe mood swings? I see a few warnings from you guys in the posts.

I have not learned of her struggle with her disease but the news of her death was shocking.

 
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Byroney_WebMD_Staff responded:
Dear pyao88,

I am very saddened to hear of ChloeAlexis's death. As you noted, she seemed quite positive and upbeat during her week posting here. I am sorry that I have no answers for you about medications.

My condolences,

Byroney
 
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John-SKPT responded:
I'm very sorry to hear this; any death is tragic but a suicide seems--at least it seems to those of us left behind--extraordinarily tragic.

I have seen scattered reports of patients who committed suicide while on prednisone; however there is not a very strong pattern: the patients have been young and old, some had previously diagnosed depressive episodes and some did not, their diagnoses and the prognosis for each varied widely.

So I suspect that if the patient had other symptoms of depression beforehand, then prednisone might have made some depressive symptoms temporarily worse. But I don't know that there is any way to be sure if it had any effect, and if it did, to what degree.
 
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Free2dance replied to DaveP1980's response:
You account of the disease was very helpful. My husband is 65 and is in the process of being diagnoised with a kidney problem. His Protine in his urine was 13.5 and he is very swollen in his legs and feet. They are doing a biopsy on his kidney on Friday. The doctor has stated the problem is either Focal Segmental Glomerulosclerosis or Membraneous Glomerulonephritis. I started noticing he was producing frothy urine about a month or so ago. His previous labs that he had 6 months ago were just fine. Then I noticed he was gaining weight rapidly. He went from 250 to 275 in about two weeks. The doctor feels it is all water weight. She gave him some Lasix but there hasn't been much of a change. He states his legs feel like a "tight skin on a drum". So, for now, we have to wait until Friday when he has the 4 hour biopsy. Did you have to wait a long time for the results or did they tell you right away? My husband has had the 24 hour urine test, the chest xray and the aditional blood tests already. I am very afraid for him because he also suffers from Type 2 Diabetes and high blood pressure. He is a smoker and has been for 40 years. I mentioned to him that this clean chest xray was a gift from God and that he should listen to Him and quit smoking immediately. He stated that he felt I was right and that he hasn't been acknowledging the more than a half dozen chest xrays that have been clear as God's word to him to take heed and stop. I asked him how long will you wait before you listen and obey? He stated that he is very scared and knows he has to quit now. I told him that God will help him quit if he askes Him to help and he said that he knows it will be hard but is ready to put all of it in God's hands now. I love him so much and don't want to lose him early. I have asked God to spare him his life and I believe He will do what He must. No mater what happens, I will remain by my husband's side and I will never stop trusting my Lord and Savior Jesus Christ. Were you pretty sore from your kidney biopsy? Thanks for listening. Freedancer50@aol.com . Pam C.
 
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john-skpt replied to Free2dance's response:
Biospy results usually only require a day or two; however there are a number of different tests that can be done on the biopsy sample, and some--for example immunfluorescence studies--can require a bit more time.

The main concern with a kidney biopsy is to make sure that there is no bleeding after the procedure; patients usually have to lie around the hospital or imaging center for sevreal hours just to be safe. Generally patients are advised to avoid heavy lifting or strenuous exercise for a number of days, but you will be given very specific instructions when you leave.

I had some discomfort after the biopsy, but it was not all that bad and faded in a day or two. The 'mark'--it isn't really an incision, just a big needle mark--takes a week or two to totally heal up. Again they will give you very specific instructions about wound care.
 
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dancingbearsart replied to DaveP1980's response:
Dave, I really appreciated this post of encouragement. My husband has been diagnosed with the same kidney disease and it has been a challenge for him and me. He is currently working also and takes his medications to work with him. He had an appointment yesterday with the kidney doctor and was told he was in partial remmission still. He was dissappointed but I thought the fact that he was holding his own after one year was good news. He is taking a slew of drugs including tacrolimus and prednisone. Your letter was encouraging to me as we have been up and down since his diagnosis. He is a "tough guy" so it has been really hard for him to take all these medications. Thankfully he is still very active and runs as well as works full time. Val
 
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wpooh27 replied to Free2dance's response:
That sounds very familiar to me because i am in the same boat with my husband right now. he has diabities is a smoker has been for about 30 years, and they are fixin to start dialysis on him. They have already put the shunt in for the dialysis. I am scared as well but i know that it is in God's hands but i two am like you and dont want to lose him early. We have only been married for 2 1/2 years now and he is my life my everything i cant and dont want to lose him. My husband after they told him the news about the dialysis said he wanted to quit. He was in the hospital already when they told him that he had several many strokes, and went completly numb on his left side. He talked to his pcp and his pcp told him to try to quit on his on instead of taking something to quit because anything he could give him to quit could cause another stroke. Keep me posted about your husband and you both are in my prayers. Thanks for listening.


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