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Minimal CHnage NS. Relapse

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Nicson
Nicson

Hi all,

I’m 31 years old and had my last relapse in 2014. I’m recently having another relapse. The relapse started 4 days ago.

At the start of the relapse I tried taking crushed garlic clove with honey to see if that would help. But eventually I saw the doctor and gave me prednisone - 10mg daily dose. I was given the 5mg tablets. My current urine reading is +3. I have no swelling in my wrist and my ankles. I do have puffing around my eyes in the morning, but it goes down throughout the day.

I have a few questions:

a) Will the swelling come in the next few days or later in the week?

b) Should I take prednisone in the morning or at night?

c) Should I take the 10mg in one go or 5mg in the morning then 5mg at night?

Thanks for your help.

0 likes, 10 replies

10 Replies

  • sue80045
    sue80045 Nicson

    Posted

    My son is 16. He has been relapsing since last Thursday. He is taking 80mg daily until he goes into remission & will then be on 60mg alternate daily for about 4 weeks. Your dosage sounds very low. He takes his tablets in the morning as they can stop you sleeping if you take them later in the day. The swelling will take 1-2 weeks to settle down. I would definitely get the dosage checked if you don't get lower readings soon. 

    • jemj3ms
      jemj3ms sue80045

      Posted

      Hi sue, I was just wondering how old your son was when he was diagnosed with this condition. My son  is 5 and he frequently relapses. He has been taking prednisone for the past year on alternative days, which has worked, until the past couple of days in which he has had a reading of +4. So now he has been told to take 50mg until he is remission. The trouble I find with my son is his behaviour when he is on these tablets. I was just wondering whether you had similar issues with your son? 
    • sue80045
      sue80045 jemj3ms

      Posted

      My son was diagnosed last year in May. This was during his gcse exams & he ended up in hospital doing them there!! He relapsed twice last year, once immediately after having the flu jab. Each time he was put on 80mg until his protein levels started dropping & then on 60mg alternate daily for 4 weeks. After xmas he went on 20mg alternate daily & had recently dropped to 15mg. But now he has relapsed again & back on 80. He says they make him feel very angry & short tempered. But at least he is old enough to understand what is going on. Your little boy is so young to be dealing with this & is on a high dose too. It must be so upsetting for you. I hope you have a good doctor looking after him. We are lucky that ours is so kind & available. She has put my son on 3 study programs to hopefully help kids in the future. Xx

  • cph
    cph Nicson

    Posted

    Hi Nicson.  Sorry to hear about your relapse.  When I was on steroids I was told to take them all in one go, and I took them in the morning, but I don't know if it is ok to take them all at night.   Have you seen your consultant?  If you now only have puffy eyes, you might be able to reduce the steroid dose, but normally your consultant would be making those decisions, not your GP.  Prednisone must be reduced gradually, and not just stopped, but the longer you're on them, there is more chance you will have a puffy steroid face and possibly gain weight.  Are you on other medication for your NS? Good luck.  Colet

  • cph
    cph Nicson

    Posted

    Just as a follow up, having read Sue's message, I've had two bad relapses during the past 5 years, and the highest dose of steroids I was ever on was 30mg (as an adult), along with my NS meds being increased also, but the steroids were reduced over the course of the next 6 months.  Your swelling symptoms do not sound too bad, which is probably why you are on a lower dose.  Once your consultant has seen full blood test results he/she should be able to sort your medication. 

    I'm sorry about your son Sue, such a young age, and high dose of steroids, hopefully that is a short-term dose for a quick fix for him, and possibly even with the hope of curing it.

  • eric31962
    eric31962 Nicson

    Posted

    Me too ! Sorry no solutions ! 10mg sounds like a small dose. I was diagnosed over three years ago, but probably had this all my life. 

    Good luck with it !  Ex

  • Nicson
    Nicson

    Posted

    Thank you all for the messages. I really appreciate it.

    I am now on 50mg. Been on it for a week now if positive signs. Protein in the urine is now at +1 past two days. I will be seeing a specialist next week. The swelling in my eyes have gone down dramatically. At the moment I'm left with the side effects of the prednisone. Water retention in my legs and swelling of the wrists.

    Thanks

    • sue80045
      sue80045 Nicson

      Posted

      Glad to hear you are going into remission now. My son is also now in remission after 10 days of taking prednisone. We are going to see his consultant tomorrow to talk about a biopsy. He was going to have one before after a bad reaction to Levamisole but it was cancelled when his creatinine levels settled down after stopping the levamisole. Apparently this medication works well for some but not my son!! He has also decided to go on a gluten free diet to see if this has any effect. His dad is a diagnosed coeliac which is also an auto immune condition so this could be connected. Good luck ongoing with your journey. 
  • eric31962
    eric31962 Nicson

    Posted

    Your young and on a small dose. so don't worry time to grow out of this with luck. 

    Anything you post in these forums is publicly visible. Don't include information you're not comfortable sharing in public. As the above warning i've had people trying to sell me cures. It won't work and may hurt your pockets. I don't think it matters when the drug is taken, I'm a morning person ,

    I had almost three years off then it returned this June.

    , good luck for the future. E

  • eric31962
    eric31962 Nicson

    Posted

    Dear Nicson, 

                           I don't know if this article is of any interest? I'm not in Medicine, and please don't accept these views 

    as being valuable in any way. But interesting in any case, the Nephrologist I see is very good and sympathetic, but there seems to be limited amounts that can be achieved with this condition.

     

    [Medscape Logo]

    Thursday, August 24, 2017

    NEWS & PERSPECTIVE DRUGS & DISEASES CME & EDUCATION ACADEMY VIDEO NEW

    Coverage from theEuropean Renal Association–European Dialysis and Transplant Association (ERA-EDTA) 54th Congress

    Surge of Kidney Failure Deaths Blamed on Heat Exposure

    Pam Harrison

    August 18, 2017

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    This story is also available in Spanish.

    MADRID — A lethal epidemic of chronic kidney disease not associated with any of the usual risk factors, such as hypertension and diabetes, is claiming the lives of relatively young men who work outdoors in hot spots around the world, and some experts are blaming the phenomenon on long hours spent in high temperatures without proper rehydration.

    An estimated 50,000 people have already died, Richard Johnson, MD, from the University of Colorado Hospital in Aurora, reported at the European Renal Association and European Dialysis and Transplant Association 54th Congress.

    From the podium in Madrid, Dr Johnson questioned whether "global warming and water shortage" might be contributing to the problem.

    "Of course, it's possible that toxins are involved, but we now think that the disease might be driven by repeated bouts of acute injury to the kidney," he told Medscape Medical News.

    "Over time, this worsens kidney function, and patients can then develop classical signs of kidney failure with nausea, poor appetite, and high blood pressure," he explained. "And since dialysis is rarely available in these areas, the disease can progress, leading to death."

    One of the hardest-hit areas is Central America, where it is estimated that 20,000 people working in sugarcane fields have died from kidney failure.

    In Central America, the illness has been dubbed Mesoamerican nephropathy. It is also referred to as heat stress nephropathy and chronic kidney disease of unknown etiology.Most strikingly, the disease does not appear to be due to any of the common causes of end-stage renal disease.Dr Johnson described a mouse model of recurrent dehydration that he and his colleagues developed to study the possible mechanism for the disease (Kidney Int. 2014;86:294-302).

    Ermando de Jesus Hernandez from El Salvador, age 39, suffers from heat stress nephropathy. Both his father and brother died from the disease. Hernandez continues to cut sugarcane to provide for his family, earning $2.26 per ton cut. (Tom Laffay)

    Typically, young men present with an asymptomatic rise in serum creatinine in association with low-grade or no proteinuria, explained Carlos Roncal-Jimenez, MS, from the University of Colorado Denver in Aurora.

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