22 years on lithium -- all good until hypertension

[22goodyears]

Where can I go to get a referral to a clinician who has experience with LONG TERM lithium use and kidney issues? I have had wonderful success with lithium for 22 years -- no recurrence of the BiPolar -- but started having a lower kidney function -- estmated GFR -- it has been bouncing up and down for 6 months -- and now my blood pressure is up (first time -- I am turning 50) ... I would really like a practitioner who has experience to help sort all this out.

I have NO desire to stop taking the lithium...I have had 22 good years!  But do need to be making good health choices. Any recommendations on how to find a good experienced ally? I like my local doc very much, but he is young and never treated someone like me.

[ILADVOCATE]

This can happen on occasion from long term use of Lithium. The FDA does keep track of statistics but that one is well known. Look at the package insert. That was approved by the FDA.  If doesn't as long as your blood levels are within the normal range and remain so there's no reason to be concerned. If it does at that point, I would speak to your psychiatrist about changing it. Depakoate is one option as mentioned. I personally found Lamictal to be more tolerable . But are 3 of those are FDA approved as first line mood stabilizers. Psychiatrists would feel comfortable using any of them. For more information on mood stabilizers google "Depression Central" and as for medications that are approved used off label as mood stabilizers here's a list:
http://www.psycheducation.org/depression/meds/moodstabilizers.htm

[maggie1of4]

Congratulations on the 22 good years.  But I really want to caution you about lithium.  I was on it for 10-11 years and developed kidney problems and thyroid problems - I have to take thyroid medication now everyday.  But the kidney problem is more serious.  There's no pill you can take to compensate for diminished kidney capacity.  When my kidney disorder was first diagnosed, they (NIMH drs.) said that while most people have 10 times the kidney capacity they need, I had 6 times the kidney capacity I need.  Well, fast forward to today, 20 years later, I have stage 4 kidney disease.  That's stage 4 out of 5, where 5 is when you need dialysis or transplant.  Most of the literature says such severe kidney disease is "rare" but I know 5 people who have it.  The thing is, the dysfunction is progressive even when you go off lithium.  The healthy part of the kidneys have to work harder to compensate for the damaged part, so they gradually decline as well.

A year ago I was at stage 3; in December I was told I am at stage 4.  At that time the kidney specialist told me I would probably be a candidate for dialysis or transplant within 5 years.  Now they're telling me I should plan ahead for either/both now before it becomes a crisis, so things are in place should I need either.  There are options in dialysis (home or medical facility) and of course transplant is another whole issue.  

At any rate, I'm on a mission to let people know that while lithium can provide good mental health results,  the long term consequences may be more severe than you realize.  I had 10-11 years of stability on lithium, but also almost 20 years of stability on other medications.  Since there are other medications that work, please be an informed consumer and make educated decisions about your long-term health.

If you are having similar problems, please let me know.  I want to find out how common it really is, and if anyone like NIMH or FDA or CDC is keeping track.  I don't think the stock literature is as accurate as it should be about the potential problems.

[Pills404]

I too have been on lithium for approx. 22 years and had little problem unless I stopped taking it or didn't have my blood level tested.  But I question your doctor, eventhough you like him and he is a nice guy - nice guys finish last!  He should know that lithium over a long period of time will hurt your kidneys and that can be fetal.  Sorry but that's true, you don't want to fool around with this problem and you need to see someone who knows the long term effects of lithium..  I now have a slight kidney problem but nothing serious- so they say.  But now I'm gradually taking "Divalproex" along with lithium until I can eliminate lithium altogether.
Good luck to you and make a switch in doctors and Med's

[ames67]

Bravo to you for having 22 stable years under your belt. In terms of negative side effects of long term lithium use I would look to the medical community. You can google it but may have more luck if you go to a local university library and do a medline search for long term lithium use. Then once you find some articles, you may be able to contact the authors and they could let you know if there is anyone in your area who specializes in treatment with lithium. Just a little suggestion. Congratulations again on your 22 years. I look forward to having a year without symptoms (going on 7 months since last manic episode and subsequent depression)!!!!