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Membranous Glomerulonephritis - just diagnosed

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johnboy1954
johnboy1954

I am. 60 year old male, newly diagnosed. I have been treated quickly and am currently on a 6 week course of Irbesartan as a starter to see if they have any effect. I work full time. I have been told the disease is in the medium category of mild, medium, severe. My question is about fatigue. What symptoms do people experience and how are they managed? Does anyone experience shooting nerve type pains?  Any responses appreciated. I am finding it hard to 'place' the disease and how much of a threat it is or isn't . Any sources of information appreciated. Thank you johnboy

 

0 likes, 21 replies

21 Replies

  • eric31962
    eric31962 johnboy1954

    Posted

    Sorry, to hear John.

     I had very much same experience but was just diagnosed with thombosis in legs.

    After 5 weeks in local hospital I was ambulanced into kidney unit.

    That was 5 months ago and I'm still leaking protein. 

    I suspect all we can do is keep taking the pills so to speak. The crying baby gets the milk(!) so complain loudly to GP and specialist if you feel nothing is being done.

                                              Regards,    Eric 

    • johnboy1954
      johnboy1954 eric31962

      Posted

      Hello Eric. Sounds like you had a rough ride. I am still on Ibersartan. Last visit in November showed a small drop in protein leakage- back in a few weeks. 

      My problem at the moment is dealing with fatigue (I think that's what it is).

      i am unable to work full time at present and spend a lot of time feeling unwell with nausea, tiredness and my body in 'stress' mode. Have you experienced this effect?

      Anyone thoughts from anyone welcomed. 

      How are you doing at the moment?

      regards

      john

       

    • JB950
      JB950 eric31962

      Posted

      My husband also suffered DVT in his left groin Dec 2015. Put on high blood pressure meds and cholesterol meds, of which he never had a prior problem.  Also eliquis. But too low of a dose because DVT happened again in April of 2016. Finally through tests and University Hospital in Chapel Hill, NC, he was diagnosed with idiopathic nephropathy that caused membranous glomulonephritis.  Put on a 6 month treatment plan of prednisone and cytoxan, alternating months.  We're in month 3 now and told 1/3 remission, 1/3 chronic and 1/3 doesn't work.  But his lab numbers have been better and he is feeling better.  Still dumping protein.. about 7g but it is half of what it was 4 months ago from today August 4, 2016. Slow process, hoping for best.  He just gets so depressed.  Always hard working, go to gym, 50yrs old,   What bugs me is that although they've diagnosed what caused the hypercoagulation and thyroid issues is an unknown (idiopathic) origin, which they said is common?  sad  It's so hard to see him struggle and we just wish could get more definitive answers as to why and are we really doing the best to 'reset' his system so this unkonwn autoimmune, which is what they say, will go away. sad

  • eric31962
    eric31962 johnboy1954

    Posted

    I saw the specialist today. But it's just a matter of, 'keep taking the pills.'

    Anything to do with the kidneys is going to be serious . I Don't think anyone knows very much about these conditions. I'm handling this, by trying to be as healthy as I can. No alcohol, trying to keep weight down, stress minimal, reasonable exercise. 

                                    Regards, Eric

  • susan42245
    susan42245 johnboy1954

    Posted

    I had nerve pain which I was told was due to some meds i was taking once I stoped it went, the only problem I have now is just confirmed I have nerve damage in my hands which is really painful not sure what they are going to do about it 
    • johnboy1954
      johnboy1954 susan42245

      Posted

      Thanks. Can I ask what meds you were on? So far I have low dose Ibersartan and a statin.

      did you have to deal with fatigue at all? My body seems to be going in to stress mode still and it's affecting my ability to drive at times and also to do e wry day things at work.

      off to the consultant tomorrow so 'lol see what that brings.

      good luck.

    • susan42245
      susan42245 johnboy1954

      Posted

      Sorry I cannot remember but it was to do with my potassium levels being low I get very tired in bed by 7pm working some days better than others I suffer with really hot sweats as well I am due to see a few more doctors in feb so will let you know more
  • eric31962
    eric31962 johnboy1954

    Posted

    When I was actually in hospital and until I came off dialysis I was on 

    Bisoprolol Fumerate  2.5 mg

    Furosemide 4x           40 mg   (Huge dose )

    Lansoprazole             15 mg

    Prednisolone              60 mgs ( several times of day )

    Calcium Carbonate    1.25g    (twice a day )

    Calcium and Colecalciferol   

                                       1.25 (twice a day )

    Ramipril                       1.25 mg 

    I'm not fit, but can do a few miles, would really be pleased to get off pills.

    Very easily get tired if I push myself.

                                                      Regards, Eric

                                             

     

    • johnboy1954
      johnboy1954 eric31962

      Posted

      Thanks. I guess then that I am doing relatively well at the moment.

      it seems that every individual has such a different experience and course of events.

      keep well.

      john

  • eric31962
    eric31962 johnboy1954

    Posted

    For the majority of medical staff, what we have here is a rare condition. So getting the correct diagnosis is the first step to recovery.  

    I'm aware that these sites are public but there is a lot more I could write about my experience with medical services.

     

                                               Regards all , E R

  • sally38223
    sally38223 johnboy1954

    Posted

    From what I know of Membranous Glomerulonephritis (MG), exhaustion or pain are not from the 'disease' but perhaps from the meds or could possibly be a different health issue altogether. Do you have a primary doc you have spoken with on these issues? Or perhaps start a different medicine regimen.

    First off I am 41 and female. I found out I had this just under 2 years ago after admitting myself to the ER with severe chest pain. Turns out I had multiple pulmonary embolisms on both sides of my lungs. I've never been sick or ill and had just delivered twins a year and a half earlier with no issues during pregnancy. Although I did have 3 similar separate episodes of chest pain the year and a half before diagnosis, symptoms would always go away within 24 hours. I figured it was a consequence due to the preghancy or aging or something. Needless to say this was a surprise, the clots. They realized I was leaking protein right away and after various tests and then kidney biopsy, MG was my diagnosis. I took and still take warfarin do deal with the clotting. I was taking a statin but didnt feel good on it at all so took myself off. Fatigue, muscle ache or cramps, I was also forgetful. Hated it. Doc then gave me niacin to take, took sporadically. Just tried to better my diet. 

    SO my case is different for not only is this a rare issue, but I am a rare patient. youngish healthy femaile, no high blood pressure, no thrombosis. So I am not taking any other meds than those above. I can't. 

    I had a protein number of 6-8000. It's now down to 370. I had cholestrol number of over 500 it's now down to 223. It takes time but so glad to see a decreasing trend on these numbers. 

    Again, I'd suggest having docs look at these symptoms you have, run blood tests, and figure out what else it may be, besides the kidney issue. Or change the meds. As for how serious MG is, give it 18 months and see if it worsens or improves to know if it's a threat or not. I think for a third of folks, it can get worse, for another third, stays the same, the last third, goes away. If it gets worse, it can impact your kidney function.

    Also, please watch your diet. Eat better! Less cholestrol, less red meat, dairy, less salt, more greens, more water. 

    Keep in touch with updates.  Hope it starts to turn the tide soon for you.

  • JB950
    JB950 johnboy1954

    Posted

    I see you've posted this a year ago. I was wondering how you were doing.  My husband also diagnosed with Membranous Glomerulonephritis.  He's doing 6 months treatments of steroids +   He gets tired from the disease as well as medicine.  I make sure he drinks pure cranberry juice... Not the stuff you usually buy in the store, but regular juice that tastes very sour.  I mix an inch in a glass and fill with 8oz of water.  Once a day to help flush kidneys...  When toxins build up due to kidneys not working well it can make you feel bad and tired.  There are other things we have been doing if you would like to know.  How are you doing now?  Have you been on any kind of treatment plan?  I have tons of information, but don't want to give you info on stuff you already may know.  Look forward to hearing from you.

    • susan42245
      susan42245 JB950

      Posted

      I have just been given the all clear for another 6 months in remission feeling great they just dont know if my condition was primary or secondary so making the most of feeling well for now its just a case of wait and see.  PS off all my meds now part from my treatment for my tyriod and Vit D tablets
    • johnboy1954
      johnboy1954 JB950

      Posted

      Hello. Thank you for asking. I think I am doing well realtively speaking. I have remained on a course of Ibersartan, aspirin and Ezetrol to try and keep my cholesterol levels down.

      Each time I see the consultant - about once every 12 weeks - it appears that my protein levels are improving. The decision is made at each appointment to keep me on the same medicine regime.

      I still have a problem with fatigue - this time at a lower level but it is constant. My problem is that I also have broncectasis and previously the fatige appeared to be a direct result of this. 

      The statins that I was originally given for the cholesterol made me really unwell - I was shocked how much. I worked through 3 types. The Ezetrol apprears to be working  - we'll see.

      The consultant is trying to look at the fatigue - they feel that the disease shouldn't be causing the fatigue. Just been checking cortisol levels - waiting for the outcome of that.

      I was interested to hear that your husband is also dealing with tiredness. what does the consultant say about it?

      I feel happy with the treatment I get - I realise that I have been lucky with the progress of the disease so far.

      Always happy to hear of anything that you feel maybe supportive.

      I hope your husband keeps well.

      Johnboy

    • johnboy1954
      johnboy1954 susan42245

      Posted

      Hello Susan,

      May I ask what meds you were on?

      Did you ever experience fatigue/tiredness?

      I have been told that I will take Ibersartan for life becuase of its protective effect on the kidneys.

      Will you still be monitored regularly?

      Glad you are doing so well - long may it last

      Johnboy

    • eric31962
      eric31962 johnboy1954

      Posted

      Dear Johnboy, from eric31962. Hope you are better ?

      I'm still on 2.5 beta blocker at A.M> and Ramipril at night. But no steroids or nothing nasty . Still got fatique: Just knackered, but world better than two years ago.! Hope your doing well!?

    • johnboy1954
      johnboy1954 eric31962

      Posted

      Hello Eric - glad to hear that you are doing well.

      Have you been told that the fatigue is a symptom of the diease?

      May I ask how it affects you?

      Glad to hear that otherwise you are doing ok.

      Take care

      Johnboy

    • susan42245
      susan42245 johnboy1954

      Posted

      I did get extremely tired when I was first diagnosed and when on the full set of meds now still get  tired every now and then but unsure if this is due to lack of vit D however I am back at gym 5 days a week 3 of them spinning never felt better over the last 3 years it has really helped me,  I am 56 now so don't give up fight all the way there is light at the end of the tunnel but it can be hard getting back on your feet as it is a horrid illness I don't think the people around you realise somtimes and it is really scary  

    • eric31962
      eric31962 johnboy1954

      Posted

      No one has told me anything about the future course of the condition.

      What the specialist said, is that I've had this condition my whole life.

      I'm not seeing the specialist again until the end of the year and he has said this will be my last visit, because I'm not losing any protein. I haven't lost protein for the last 8, or so months. I must say I am very apprehensive about the future because 2, years ago I was suddenly and inexplicably seriiously ill. This was a new experience for me because I've never been ill in my life before.

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