Just DX'd

[PDaddy]

Hi all,

This morning I got the news that I indeed have ALS. What a pisser. The dr has prescribed rizuloe and lithium. Now to find a pharmacy that has them the first one I checked didn't have it.

My legs are strong but do have MND, my left hand is about 60% of normal (maybe less) and the right hand is about 85%. I'm still working full time and need to keep working. Will those drugs take me out of commission for a while??

Thanks

Pat

[Al]

Hi Pat sorry about your diagnosis. While both drugs can have some side effects they shouldn't take you out for a while. Some of us don't have any side effects that are too bothersome at all. Use the search feature to look up both drugs. There is quite a lot of info there.
AL.

[CindyM]

I am sorry to hear of your DX, PDaddy. You seem to be kind of matter of fact- how is the rest of the family?

[PDaddy]

Hi Cindy,

That's just the way I always have been, almost too literal too! My wife is taking it the hardest, but I am ready for anything. I just gotta find a pharmacy that carries the drugs and get started on plateauing this or slowing it...

And two nights ago I took my first Lexapro and couldn't sleep at all, literally! My wife will call my Dr today and see if I even need it now that I will be on R&I.

[Rob Kerr]

I .have been on Lithium for about 2months with no side affects. I was able to work for 3 years after my dx. I took good care of myself and got plenty of rest. I learned how to get things done without getting to fatigued which is what finally made me retire at age 43 Take care Rob

[sharonca]

Pat - I got Rilutek and Lithium at CVS pharmacy in Redlands - so I'm pretty sure they would have it at any of their stores. Lithium was less than $20. Hope you have insurance for the Rilutek - it's a bummer - $1,000 for 30 days.

I could have kept working but the PT suggested I not type so much in order to save my hands. Since I worked for my husband as an office manager I quit right away and applied for SS. I start getting that in June - along with Medicare.

Even though I quit my hands continued to progress until I started on Lithium and then they went back to normal. Not everyone has that kind of response. Hands fine for the last two months.

Good luck find the Rx.

Sharonca

[PDaddy]

Thanks Rob and Cindy. I have about 12 years on you Rob but that is great info about the Lithium. It is calming me a bit.

Cindy - I have always been pretty calm and stable. I am also very literal, almost to a fault. My wife is taking this harder than I, but she is strong too. I want to get on those meds and start the treatment... The odd thing is, I was more distraught when I got laid off from my great job in 2002 after 11 years with the company. Only 3 years ago I found my present job which is somewhat comparable to my last job. ALS, I will handle.

[PDaddy]

Thanks Sharonca,

The CVS in Pomona was out, but my wife called the 24hr CVS in Upland and they do have the drugs but COSTO does NOT carry it. I do have insurance, but don't know what management will say once we fill them in. I sure my hands recover! ;-) I know nothing about SS and Medicare, but my wife will dig into that soon.

Pat - I got Rilutek and Lithium at CVS pharmacy in Redlands - so I'm pretty sure they would have it at any of their stores. Lithium was less than $20. Hope you have insurance for the Rilutek - it's a bummer - $1,000 for 30 days.

I could have kept working but the PT suggested I not type so much in order to save my hands. Since I worked for my husband as an office manager I quit right away and applied for SS. I start getting that in June - along with Medicare.

Even though I quit my hands continued to progress until I started on Lithium and then they went back to normal. Not everyone has that kind of response. Hands fine for the last two months.

Good luck find the Rx.

Sharonca

[juliesmile]

Husband dx in march. Dr. informed us of Ritulex, which he sort of dismissed saying it would only net a couple extra months and was very expensive. But I see a lot of people here using it. Is that the same thing as Rizuloe? He didn't offer a lithium perscription, but mentioned some trials. Can any Dr. perscribe that? What the heck is Lexapro?

On work: My husband is a farmer. And right now he seems to be holding his own, he has a leg brace on his left leg. But he does tire much easier. By the end of the day he is just wiped out. Is he harming himself. I hear so many people saying things like they are saving their hands etc. Does continuing to work wear one out sooner than if they were to just take it easy? Our Dr. said "do no less, do no more" but I seriously wonder if he isn't breaking down faster by working so hard. He does try and take it easy. Our son works with him and he does most of the heavy stuff etc. but Steve still has to walk a lot, lift, bend etc.

Anyway we're just a little confused.

Thanks,
Julie

[PDaddy]

Hi Julie,

I understand about Ritulex only adding a few months, I will reconsider if my insurance gets drastically changed. But Lithium along with Ritulex has been found to slow or stop the degeneration and more. Do a search here to turn up some details.

And Riluzole is the generic name of Ritulex.

And Lexapro is a antidepressant which was prescribed to me for my uberemotionalibility. If I get any emotions at all my jaw drops and locks. But, Ritulex and Lithium are also antidepressants, another question for the doctor.

[andyvaughn]

Pat.. I am sorry to hear about your diagnosis. My husband was diagnosed 2/20/08.. like your wife I think I am having a much harder time than him. I was just going to share with you that my husband was really wiped out the first couple of weeks on rilutek. We went back on the dose, cutting him to 1/2 a pill at night for a few days, then a full pill at night, then 1/2 in the am and a full one at night, until he finally was able to tolerate taking the full dose. It took about 2 weeks. The lithium however has had absolutely no side effects for him, which is nice. He just started last week, his levels got to 0.3 the first week, so he is now on 450mg daily, and still no side effects, maybe a little more sleepy than usual but not bad. .. Many people suggested at first that if my husband was so wiped out on the rilutek that he shouldn't take it, but he decided that if it added even another 30 days to his life that it was worth trying. I am glad he hung in there with it.

Julie.. as far as your husband working, I have heard both versions, that exercise strains the muscles, and everything in moderation. My husband is a contractor, and our doctor told him he could work no more than 4 hours a day, because his job is very physical. He already is off work ... he feels better not having to be physical all day.
andrea... wife of Pals Jim.

[PDaddy]

Thanks wife of PALS Jim,

I started on the Rilutek and Lithium last night and took the next dose this morning, so far, no side effects at all. I hope every day is like this!! :???::-)

[andyvaughn]

I hope it keeps working like that for you too!!! Did you put yourself on the lithium spreadsheet? I am sure that links to it are somewhere in this forum. Since there is so little research to date on lithium there is what appears to be a type of grassroots effort to document the use of lithium with ALS patients around the world.
I am really hoping that the lithium works - I have read a lot more good than bad about it!
Andrea - wife of pals Jim

[PDaddy]

After a whole week, I am happy to report that I still have ZERO side effects with the Rilutek and Lithium twice-a-day medications. Tomorrow I have the first blood test to check liver and Lithium levels. Prayers must be working!

[sgilbert]

Hi PDaddy,

I am truly sorry to hear of your dignosis, my Dad was just diagnosed himself and is still working as well because he has to.

You mention that you were prescribed Lithium and I am wondering if you are taking it as part of a study or were you just prescribed by your Nuerologist? The clinic that my Dad goes to in Phoenix mentioned an upcoming Lithium study they want him to participate in, but I am wondering if other neurologists (such as your and others contributing in this forum) are just prescribing it, then why would they not just give it to him up front. Doesn't make sense to me so just curious how you or others were given a prescription.

Thanks,
My thoughts are with you all.

[PDaddy]

Thanks for the post. I am seeing a Dr. at Loma Linda and he prescribed Lithium right off the bat. I did register for that "spreadsheet" for Lithium patients, other than that I don't think I am part of a formal study, but I have been known to be dense! ;-)

[jimercat]

I would find a doc that is willing to prescribe the Lithium right away. To participate in a trial would mean your dad could possibly get a placebo, and you won't know til the trail is over whether he he received the placebo. The amount of Lithium prescribed is low enough that there are hardly any side effects for most people. So, there should really be no reason why a doc cannot prescribe the stuff for your dad.

[andyvaughn]

Jimercat and Sgilbert
I don't believe there are any lithium studies currently dosing placebo. I could be wrong, but haven't found any. It appears that all studies are open label, meaning that the doctor, the patient, and the research funding all know what the patient is taking. The reason that the doctor would be pushing for use of lithium in a trial, rather than just prescribing it, is two fold. The first, and most obvious, is the pressing need for data related to the use of lithium and ALS progression. This provides real time data to be analyzed in a statistically viable way, and gives valuable information to the scientific community. While the ALS lithium spreadsheet is a valuable tool, scientific research and FDA processes are very complex, (the FDA is often NOT our friend) and require certain procedures, processes, etc, to consider anything legit. The second reason is funding. If your physician has submitted for IBR funding/approval, they would gain financially, which ISN"T a bad thing, from lithium trial studies. So having their patients in a controlled trial is financially beneficial, as well as scientifically beneficial - to the clinic and the researchers. But, the most important asset to be gained from a trial study is the ability to analyze over a broad patient spectrum the benefit of lithium, proper dosing, etc.
That being said, my husbands doctor presribed lithium without the formality of a study. Our clinic is fairly new, and her patient population fairly small, so in that sense we were lucky to get lithium early.
I don't know if that makes sence, I worked for many years in HIV research, and these are very complex processes, that even after a decade in the field I only have a marginal understanding of.
Andrea - wife of Pals Jim

[jimercat]

Thanks for shedding the light Andrea. Makes sense!

[MtPockets]

Just wanted to let everyone know about this program if you are taking Rilutek, which is also called Riluzole.

If you qualify you can get 3 months supply just for paying the shipping costs and the same with many other medicines.

https://www.pparx.org/Intro.php

"The Partnership for Prescription Assistance brings together America’s pharmaceutical companies, doctors, other health care providers, patient advocacy organizations and community groups to help qualifying patients who lack prescription coverage get the medicines they need through the public or private program that’s right for them. Many will get them free or nearly free."