New Lithium based therapy announced
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scuba114
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My wife who has ALS started taking lithium carbonate 150mg twice a day. Since starting, her speech and left side motor skills seem worse. In addition she has become very depressed. Has anyone else experienced any negative symptoms?
AHands
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My doc started me on 150mg x 1/day for three days, then 150mg x 2/day for five days, then blood test. the blood test showed negligible seum Li, so I upped it to 150 x 3/day last Friday. Over the weekend, I felt depressed. I can't say for sure it was the Li, but I was despondant, my hands and neck so very stiff and I just felt useless, incapacitated and didn't see much point in going on. I drank a bottle of wine and went to bed. This morning, I still felt bad physcally, but my spirits were MUCH better. The weather was nice so I went out and exercised. Now I feel terrific! Nobody has listed "depression" as a symptom on the spreadsheet, but I feel like my brief depression may have been a reaction to upping the dosage. I'd ask your Dr about cutting back to 150mg for a few days, then going back to 300mg so that you can better adjust.
AHands:
Apparently, drinking alcohol can change the level of lithium in the blood. You may want to contact your doc regarding alcohol/lithium interaction.
Have you noticed any positive effects due to the lithium yet?
Apparently, drinking alcohol can change the level of lithium in the blood. You may want to contact your doc regarding alcohol/lithium interaction.
Have you noticed any positive effects due to the lithium yet?
AHands
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Lithium effects
positive effects...around the time i started lithium i developed a problem: you know how when you wake up in the morning the first thing you do is stretch in bed? those stretches were starting to cause my legs to cramp painfully and i'd have to try to remember not to stretch while waking. since lithium, those stretches don't seem to be a problem. i still get painful cramps when doing things like taking off winter clothes, but not durring that morning stretch.
fasics are...different...less i think, but maybe larger? before it seemed like little tiny muscles twitched, now it seems larger muscles jump a bit.
its probably too early to tell--it will be 2 weeks tomorrow. lab test last thursday reported 0.1, but apparently "0.1" means "0.0 - 0.1":
positive effects...around the time i started lithium i developed a problem: you know how when you wake up in the morning the first thing you do is stretch in bed? those stretches were starting to cause my legs to cramp painfully and i'd have to try to remember not to stretch while waking. since lithium, those stretches don't seem to be a problem. i still get painful cramps when doing things like taking off winter clothes, but not durring that morning stretch.
fasics are...different...less i think, but maybe larger? before it seemed like little tiny muscles twitched, now it seems larger muscles jump a bit.
its probably too early to tell--it will be 2 weeks tomorrow. lab test last thursday reported 0.1, but apparently "0.1" means "0.0 - 0.1":
hopingforcure
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I know that it is so early on in the Lithium study, but I was wondering if we are getting any kind of feeling yet on the outcomes.
I have read the Italian study, and am following the graph that many of the pals on here are on, but wanted opinions from those taking lithium or have info on others taking it.
OH how we hope...
I have read the Italian study, and am following the graph that many of the pals on here are on, but wanted opinions from those taking lithium or have info on others taking it.
OH how we hope...
AHands
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yes. i believe everybody is shooting for 0.4-0.6 or as close to 0.4 as possible without being under. from the italian study:
You saw mikko's video, right?
YouTube- Improving PALS
ilgal
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I too am taking lithium. Started out at 150 mg bid but increased to 3 times a day. On 2/11 blood level was 0.6. On the positive side I have the slightest bit of movement in my right pinkie finger which I previously could not move at all. On the negative, my speech continues to deteriorate and my legs are becoming involved (fascilations and tight muscles). I've not experienced any negative side effects except minimal stomach discomfort when I was in a hurry and didn't take the capsule with food/milk. I am hopeful. I don't think it's hurting me and maybe it will help.
I am also in ceftriaxone trial (med or placbo) and when I told the study people yesterday that I'm taking lithium they said I might not be able to continue. I understand completely and hate to mess up their research, but I may only be getting placebo so... It also wouldn't be bad to get rid of this central catheter.
I am also in ceftriaxone trial (med or placbo) and when I told the study people yesterday that I'm taking lithium they said I might not be able to continue. I understand completely and hate to mess up their research, but I may only be getting placebo so... It also wouldn't be bad to get rid of this central catheter.
disbeliever
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Dad went on lithium today
I haven't posted since my initial few back in November regarding my Dad's diagnosed...just been dealing with it, I guess...but since then he has started experiencing weakness in the left arm and hand (started on the right). He has tried a combination of supplements for the past two months, and today went to a specialist and received a prescription for lithium.
The study certainly sounds promising, although from some anecdotes on this thread may not be all the study seemed to promise.
He's still in pretty good shape, considering he's had this for a year now, although the diagnosed wasn't made until November. Similar to others who said you wouldn't pick him out of a crowd as having ALS, though he's slowed down some over the course of the year.
I hope, hope, hope the lithium gives him some more quality time...that's all.
I haven't posted since my initial few back in November regarding my Dad's diagnosed...just been dealing with it, I guess...but since then he has started experiencing weakness in the left arm and hand (started on the right). He has tried a combination of supplements for the past two months, and today went to a specialist and received a prescription for lithium.
The study certainly sounds promising, although from some anecdotes on this thread may not be all the study seemed to promise.
He's still in pretty good shape, considering he's had this for a year now, although the diagnosed wasn't made until November. Similar to others who said you wouldn't pick him out of a crowd as having ALS, though he's slowed down some over the course of the year.
I hope, hope, hope the lithium gives him some more quality time...that's all.
AHands
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...and an appointment to get his blood lithium and salts levels checked, i hope?
Remember:
- the goal is 0.4,
- do NOT limit sodium,
- do not take any ACE inhibitors.
Is he starting on a low dose and easing up?
when i made the jump from 150mg twice daily to 150mg three times/day, i felt depressed for 48 hours. i do not know for sure that the Li had anything to do with my mood, but i suspect it did. Two days later, I felt fine.
disbeliever
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Thanks for the reminders and concern!
Yes, he had blood tests run in advance to check his levels. He's seen several doctors throughout this process, including having a thorough analysis at the Cleveland Clinic back in January.
I guess I made it seem like it was a spur of the moment thing in my post..."give me lithium in a vacuum"...but that wasn't the case. This specialist has some other ALS patients on lithium, too.
So he's begun on a low dosage to ease into it.
Thanks again!
Yes, he had blood tests run in advance to check his levels. He's seen several doctors throughout this process, including having a thorough analysis at the Cleveland Clinic back in January.
I guess I made it seem like it was a spur of the moment thing in my post..."give me lithium in a vacuum"...but that wasn't the case. This specialist has some other ALS patients on lithium, too.
So he's begun on a low dosage to ease into it.
Thanks again!
stevef
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negative view from alstdi
There is alot of negative reaction from that forum about Lithuim. I truely hope and pray that Lithuim works. This is just one comment about it and I hope ALS reasearch does not get blacklisted becuase there still is hope that a cure or slowing of progression will come.
In my opinion, the greatest take-home message to be had from the Toronto international ALS meeting was made by Frank Walsh of Wyeth, during the (as usual) poorly-attended, closing remarks. He noted that ALS was in danger of being blacklisted, essentially, in the commercial world as a no-go therapeutic development area. That risk that was in proportion to the number of failed clinical trials; crossing such a threshold would be another impediment to therapeutic development that a tough row-to-hoe like ALS just doesn’t need. So, multiple clinical trials on lithium (alone!) and on other poorly pre-clinically validated therapeutics does matter.
John McCarty, PhD
Treatment Investigator,
ALS Therapy Development Institute
There is alot of negative reaction from that forum about Lithuim. I truely hope and pray that Lithuim works. This is just one comment about it and I hope ALS reasearch does not get blacklisted becuase there still is hope that a cure or slowing of progression will come.
In my opinion, the greatest take-home message to be had from the Toronto international ALS meeting was made by Frank Walsh of Wyeth, during the (as usual) poorly-attended, closing remarks. He noted that ALS was in danger of being blacklisted, essentially, in the commercial world as a no-go therapeutic development area. That risk that was in proportion to the number of failed clinical trials; crossing such a threshold would be another impediment to therapeutic development that a tough row-to-hoe like ALS just doesn’t need. So, multiple clinical trials on lithium (alone!) and on other poorly pre-clinically validated therapeutics does matter.
John McCarty, PhD
Treatment Investigator,
ALS Therapy Development Institute
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