Going off of Dilantin, gradually

8 Posts | Page(s): 1 

Going off of Dilantin, gradually

by Fluffy on Tue Jul 17, 2007 12:00 AM

Quote | Reply

I was just wondering if anyone has any experience with getting off of Dilantin. My husband was diagnosed with GBM in August of 05 and has good MRIs ever since. He has a little inhancement that they are pretty sure is just radiation damage and hasn't gotten bigger or smaller in a year. The doctor said he could go off the Dilantin if we did it gradually, so we are lowering the dosage one a little each week for six weeks.

 Does this sound like a good plan?  Did anyone get off of Dilantin and not have a problem with seizures?  Once we start this, my husband is not supposed to drive for four months.  I'm a little nervous about the whole thing.

 Thanks for any advice you can give.

 Fluffy

RE: Going off of Dilantin, gradually

by Brete on Wed Jul 18, 2007 12:00 AM

Quote | Reply
My wife was dx in Nov. 06 w/gbm. They weaned her slowly off dilantin but had her start taking keppra at same time. She has had 3 seizures since Jan. when rad ended so that is why they wanted her to change to keppra from dilantin. All 3 times she has felt seizure coming and they lasted only 1 to 2 min. She has been fine since April but she was told by Dr that she had to go 1 calender year w/out seizure to be able to drive again. We have had 2 clear MRI- March & April then Dr. had us wait 3 months for next one, July that will be read this thurs...

RE: Going off of Dilantin, gradually

by Fluffy on Wed Jul 18, 2007 12:00 AM

Quote | Reply

 

On 7/18/2007 Brete wrote:

My wife was dx in Nov. 06 w/gbm. They weaned her slowly off dilantin but had her start taking keppra at same time. She has had 3 seizures since Jan. when rad ended so that is why they wanted her to change to keppra from dilantin. All 3 times she has felt seizure coming and they lasted only 1 to 2 min. She has been fine since April but she was told by Dr that she had to go 1 calender year w/out seizure to be able to drive again. We have had 2 clear MRI- March & April then Dr. had us wait 3 months for next one, July that will be read this thurs...

Thank you very much for your reply.

 My husband's doctor isn't replacing the Dilantin with any other medication as my husband has only had one seizure, which was in Aug 05 and was the way we found out that he had the tumor.  He wasn't allowed to drive for six months after that seizure. They were expecting him to have a seizure after his brain surgery, but he didn't have one.  I guess each state must have different laws about driving.  It will be interesting and very scary to see if he has any while he is withdrawing from the Dilantin.  At least he will not be out driving a car if that happens.  He has been having MRIs every three months also.

 Best of luck to you and your wife.  It sounds like she is doing very well.

Fluffy

RE: Going off of Dilantin, gradually

by lostconfused on Wed Aug 01, 2007 12:00 AM

Quote | Reply

Hi, I know I am a little late replying.  I hope all is going well with your husband.  My prayers are with him.  My mom was dx with GBM IV in 2/07.  They put her on dilantin directly after surgery.  She has never had a seizure.  But on Thursday of last week the oncologist told her to stop taking her dilantin because it would interfer with the new treatments of Avastin & CPT-11 we started on Tues.  I didn't realize you had to be weaned off of this med.  Do you know if I should worry about my mom having seizures since we had to just completely stop?   Please keep me posted on your husband's health.  I will pray for your family daily.

Tammy

RE: Going off of Dilantin, gradually

by Fluffy on Tue Aug 07, 2007 12:00 AM

Quote | Reply

 

On 8/1/2007 lost&confused wrote:

Hi, I know I am a little late replying.  I hope all is going well with your husband.  My prayers are with him.  My mom was dx with GBM IV in 2/07.  They put her on dilantin directly after surgery.  She has never had a seizure.  But on Thursday of last week the oncologist told her to stop taking her dilantin because it would interfer with the new treatments of Avastin & CPT-11 we started on Tues.  I didn't realize you had to be weaned off of this med.  Do you know if I should worry about my mom having seizures since we had to just completely stop?   Please keep me posted on your husband's health.  I will pray for your family daily.

Tammy


Tammy,

Thanks for your interest in my message.  Sorry it has taken me so much time to notice that you answered my message.  I so seldom get any answers that I eventually quit looking.

Yes, it is important to wean your Mom off of Dilantin gradually, unless they have perhaps put her on another anti-seizure medication (?).  I would ask her doctor about this. Our doctor said and I've read, that stopping Dilantin suddenly can cause non-stop seizures that may result in death.  Pretty scary stuff!  We started weaning my husband off very gradually, lessening the dosage by one pill/day per week.  An example of how we are doing this is:

His normal dosage was 300 one day, 400 the next.  The first week it changed to 300 each day, 2nd week 300/200, 3rd week 200/200, etc., until we are down to zero.

The doctor says he can't drive for 4 months to see if he ends up having a seizure. So far he hasn't had any problems, in fact, people are noticing that he is standing up straighter and is more allert.  I've noticed he is more steady on his feet and is spending less time sleeping in his chair and more time reading.  The joint pain he has suffered has almost totally gone away.

 I've also read that some clinical trials won't incude people who are on Dilantin.

Thanks again and my best to you and your Mom. 

Fluffy

RE: Going off of Dilantin, gradually

by Memah on Tue Aug 07, 2007 12:00 AM

Quote | Reply

I think my reply will not fit into the thread, but wanted to post anyhow.  I take Dilantin, not because of GBM, but because I have epilepsy.  I have been on this medication for 50 years.  (Sheesh, makes me feel old to say that, but, hey, I guess I am, at 62, although don't feel it and don't like admitting it).  I am on the standard dosage of 300 mg per day.  I also take a second anticonvulsant med.

My state doesn't allow driving for six months following a seizure, and I have been through that so many times I don't care to count.  However, I want to say that my neurologist would never allow me to come off Dilantin, especially suddenly.

Once, with my previous neurologist (I call him my "ex," and shudder to think that I was under this man's care), after three seizures and I was in the hospital, he took me off of all my medications cold turkey because he didn't know what was going on.  What happened was one for the books.  I had a manic episode, and I had never before had such a thing, nor have I since.  But coming off those meds suddenly caused it, and from the description of the medical personnel and my husband, it wasn't a pretty sight.  Nuff said.  It was the fault of this doctor, and I still can hardly think about it without becoming very angry.  I am considering having this episode expunged from my medical record, as I feel it was "caused," rather than a descriptor of who I am. 

I am extremely sensitive to medication changes, even slight dosage changes, and that is why my current (wonderful, fantastic, lifesaving) neurologist won't change me to any of the newer anticonvulsants.

If this helps at all, I am glad.  I do understand I'm not exactly answering your questions.

But I agree with the person who said that coming off suddenly could cause status epilepticus, which is a medical emergency.  I was once close to that.  I happened to be in my neurologist's office at the time, and he did an EEG on the spot.  He later told me I was "firing them off."  Not good.

Take proper care, and make sure this is being supervised intelligently.

Maggie

On 7/18/2007 Fluffy wrote:

 

On 7/18/2007 Brete wrote:

My wife was dx in Nov. 06 w/gbm. They weaned her slowly off dilantin but had her start taking keppra at same time. She has had 3 seizures since Jan. when rad ended so that is why they wanted her to change to keppra from dilantin. All 3 times she has felt seizure coming and they lasted only 1 to 2 min. She has been fine since April but she was told by Dr that she had to go 1 calender year w/out seizure to be able to drive again. We have had 2 clear MRI- March & April then Dr. had us wait 3 months for next one, July that will be read this thurs...

Thank you very much for your reply.

 My husband's doctor isn't replacing the Dilantin with any other medication as my husband has only had one seizure, which was in Aug 05 and was the way we found out that he had the tumor.  He wasn't allowed to drive for six months after that seizure. They were expecting him to have a seizure after his brain surgery, but he didn't have one.  I guess each state must have different laws about driving.  It will be interesting and very scary to see if he has any while he is withdrawing from the Dilantin.  At least he will not be out driving a car if that happens.  He has been having MRIs every three months also.

 Best of luck to you and your wife.  It sounds like she is doing very well.

Fluffy


 

RE: Going off of Dilantin, gradually

by lostconfused on Tue Aug 07, 2007 12:00 AM

Quote | Reply

Fluffy,

First things first.  I am so happy to hear how well your husband is doing!!! That is such good news. 

I am grateful for your information on Dilantin.  I didn't know this.  Mom's doctor just told her to stop taking this.  Now I am worried about this.  She quit taking it on Aug. 1st.  So far I haven't noticed any affects.  But this is scary.  

Again I am glad to hear how well your loved one is doing and thank you so much for the info.

Take care and keep me posted on how your husband is faring.  I pray each day gets better than the last.  God be with you both.

Tammy

RE: Going off of Dilantin, gradually

by Fluffy on Wed Aug 08, 2007 12:00 AM

Quote | Reply

Thank you to Tammy, Maggie and others for answering my messages.

 Maggie, I think your information was very valuable for myself and for Tammy.   I don't think I mentioned that our oncologist told my husband he could go off the Dilantin originally in August of 2006 and I went on-line and read that you should go off of it gradually. Fortunately, we didn't start the process when the doctors said we could and the doctor called back a day or two later and said NOT to go off of it for another year.  I think he did some checking with other doctors and found out his mistake. I really like this doctor, but I know not to take what doctors tell us at face value anymore.  I always like to do a little checking or get another opinion if it's anything really, really important.  Doctors can make mistakes; they are only human.  I've found some pharmacists to be very helpful and knowledgable where medications are concerned.

Maggie, you are certainly a trooper for staying on this medication for so long.  I'm sorry you have had to go through so many seizures in your lifetime.  My husband only had one and let me tell you, they don't look like a good time to me!

My very best wishes to all who visit here.

 Fluffy

8 Posts | Page(s): 1 
Subscribe to this message board discussion

Latest Messages

View More

CancerCompass Survey

If you were considering traveling for cancer treatment, which headline would you find more interesting?

Get $75 for taking a research survey

We care about your feedback. Let us know how we can improve your CancerCompass experience.