Duff kidneys...stopped meds. Now need them

[Megahertz]

I stopped my meds on advice because of chronic renal failure. I think I need to start again. I'm worried they will ignore my kidneys and focus on my epilepsy but I feel scared of total renal failure at a young age (I'm early 40's)

Anyone else in this position?

 

[Nakamova]

Hey megahertz, welcome!

What meds were you on? Some meds are harder on the kidneys than others. When you stopped, did you do so under the supervision of your neuro? Your neuro should be able to recommend an appropriate AED -- make sure they know of your kidney issues.

What kind of seizures do you have?

 

[Megahertz]

Hi
I was on carbamazepine successfully for complex partial (although I think they call everything by different names now)

They then tried me on Gabapentin because I had neuritis from a spinal injury, then Lamictal. TBH I had no fit activity whilst on any of these so wondered if there was any point in taking it. Neuro did EEG prior to withdrawal and it was abnormal but I was fine. So in view of declining kidney function I came off. That was 4 yrs ago.

I've had one isolated big grand mal (generalised tonic clonic?) since and have several myoclonic jerks a day and also feel a bit spaced/detached/confused/disorientated.

Friends are telling me it is not epilepsy but I feel that it might be. Seeing neuro early next year and imagine they will repeat EEG and offer meds.

I wish to be a fit healthy active independent mother who confidently goes out alone and is safe to be left with my children ...oh and can work effectively at fulltime high pressure job. Neither epilepsy nor renal failure nor drug reactions seem appealing

I am not sure in view of my current head injury that coming off meds was successful. Going back on and wrecking my kidneys, gaining weight, mood changes etc seems pretty rubbish as well........ I don't have faith in these things mattering to neuro but they matter to me

 

[Endless]

Hi, Megahertz,

Welcome! I'm glad you found us here in the forum!

I'm so sorry for what you are going through. What a tough set of choices you have right now. And seizures don't make anything easier.

How much of your kidney function do you have left?

Nak is right - different AED's have different effects on your kidneys. If you had low kidney function, I think Carbamazepine may not have been the best choice for you.

If you decide to go back on meds, it may be a good idea for your nephrologist and your epi to work together to find the best drug for you. I wouldn't do it just with an epi alone. Oh - and I'd see an epi (seizure specialist), not just a general neurologist. The kidney issue complicates things, both with which drugs are easiest on your kidneys, and in getting the dosage right due to reduced clearance out of the body.

Here are some of the kidney-related warnings for Carbamazepine:

Carbamazepine may cause kidney disease.
This drug may also cause the following symptoms that are related to kidney disease:
Acute kidney failure Acute kidney failure
Tubulointerstitial nephritis (a type of kidney inflammation sometimes seen with lupus, rejection of a kidney transplant and sensitivity to methicillin antibiotics) Tubulointerstitial nephritis

http://doublecheckmd.com/EffectsDetail.do?dname=carbamazepine&sid=11994&eid=4888

Here are some of the warnings/side effects for Lamictal:

You should talk with your healthcare provider prior to taking Lamictal® (lamotrigine) if you have:
Liver disease, such as liver failure or cirrhosis
Kidney disease, including kidney failure (renal failure)

http://epilepsy.emedtv.com/lamictal/lamictal-warnings-and-precautions.html

Accumulation in Kidneys: Lamotrigine was found to accumulate in the kidney of the male rat, causing chronic progressive nephrosis, necrosis, and mineralization. These findings are attributed to a-2 microglobulin, a species- and sex-specific protein that has not been detected in humans or other animal species.

In other words, during research studies they haven't detected this in humans. But were they looking? (They'd have to take a kidney biopsy, I'd think)
http://www.healthyplace.com/other-i...ctal-full-prescribing-information/menu-id-72/

Lamictal is cleared through the kidneys so must be adjusted for people with kidney disease.

http://blogs.psychcentral.com/bipolar/2008/08/bipolar-medication-spotlight-lamictal-lamotrigine/

 

[Megahertz]

Thank you. That is all really useful.

Lamictal sounds more promising.

I have Stage 3 CRF but only just Stage 3.... and am hoping to keep it that way

 

[Endless]

There may be others that are better than lamictal. What does your neurologist and your nephrologist say?

 

[Megahertz]

Seeing neurol soon but no contact with nephr because I've been handed over to general practitioner