[Wild Coyote]

A friend of mine now has Tardive Dyskinesia from taking a low-dose antipsychotic for her stubborn depression. She is now more depressed than ever!

I have seen her and she is suffering badly. Going off the med has not helped her.

I am so sad for her.

I'd talked to my pdoc about this. My pdoc says only 7 percent experience TD.

Well, that is 7% too many!

There is a new med out for treating TD. I forget the name. It is soooo very expensive, she and her H cannot afford to even consider going that route, and they have excellent insurance. The pharma company has not priced it within reach of many suffering!

Most of us take risks because we need the med(s).

Why can't the big pharma companies come out with meds that do not put anyone at risk for conditions like TD?

Why do they offer a remedy for TD which is so highly priced?

My heart goes out to anyone suffering TD.


WC

[downandlonely]

Hi Wild Coyote,

Has your friend tried appealing to the drug company? I think sometimes you can get a letter from your doctor saying that you need the drug and they will provide it for a lower cost. There is lots of paperwork involved, but I think it is possible.

[wildflowerchild25]

You’re so right. I’m on haldol which has a higher chance of TD but it works so well I’m afraid to go off of it. I’m considering asking pdoc if I can lower to 5mgs with the intention of going to a PRN basis in a few months. I don’t want TD but I don’t want to be unstable either! Sometimes it’s a no win situation.

I hope your friend finds a solution for her condition.

[Wild Coyote]

Originally Posted by downandlonely

Hi Wild Coyote,

Has your friend tried appealing to the drug company? I think sometimes you can get a letter from your doctor saying that you need the drug and they will provide it for a lower cost. There is lots of paperwork involved, but I think it is possible.

Thank you for your response and your suggestion!

She and her pdoc have appealed once. As I understand this, under her insurance, she can continue the appeal only once more. I have suggested she seek an urgent appt with a neurologist and get her/him to join in on the appeal, if possible.

I truly appreciate your help trouble-shooting!


WC

[jaysmotogp]

I have a good friend who also has TD.
I don't recall which AP med it was he was on. He wasn't taking it for BP either. Not sure why, but it was for OCD. He has been off it for almost a year. Its improved but still very noticeable.

[still_crazy]

its a very real risk. shrinks -hate- talking about it. i try to reduce my risk with Orthomolecular. Each person's Orthomolecular protocol is a bit different, but mine involves massive doses of C, natural form E, b-100, and now fish oil. so far, so good, but..the big what if is still there. honestly, I'm thinking I want to try to manage my "issues" without the neuroleptics/tranquilizers.

long term, it looks like steady intake of these drugs might make psychosis worse. I don't know of much long term data on non-psychotic conditions, but in Mad in America, there were cases dating back to the early 60s of people on Thorazine for anxiety and such developing psychosis as they went off. -scary-

i write all this as someone who is currently prescribed a full dose "atypical." I just...don't think I want to keep on with it, that's all. there's got to be a better way...

[*Laurie*]

It has occurred to me that decades of taking meds has actually worsened my mental illness. It's much worse not than it was in my 30's, say. I'm tired of being poisoned. I'm actively looking for another way. And that might mean being on meds for shorter periods of time, rather than staying on them constantly, year after year.

And my favorite one is pdocs prescribing AP's for anxiety and sleep because benzos are "addictive". Never mind the weight gain, health issues, TD, and the fact that AP's are also addictive, but no pdoc wants to admit that.

[Blueberrybook]

Originally Posted by downandlonely

Hi Wild Coyote,

Has your friend tried appealing to the drug company? I think sometimes you can get a letter from your doctor saying that you need the drug and they will provide it for a lower cost. There is lots of paperwork involved, but I think it is possible.

This has been the best method for me to access drugs my insurance wouldn't cover or that I couldn't afford.

[Wild Coyote]

Originally Posted by downandlonely

Hi Wild Coyote,

Has your friend tried appealing to the drug company? I think sometimes you can get a letter from your doctor saying that you need the drug and they will provide it for a lower cost. There is lots of paperwork involved, but I think it is possible.

Oh! I was so torn up, I'd missed your point! Please forgive me?
She has been appealing to her insurer.

You make an excellent point! I will ask her if she has tried appealing to the drug manufacturer.

Thanks again!


WC

[BeyondtheRainbow]

I've had good luck with getting meds from insurers when mine doesn't cover it so that I can afford it or doesn't cover it. It's definitely worth a shot for her. The application for patient assistance is usually online on the drug manufacturers' webpage and I just include a letter explaining my financial situation. It's always worked for me.

[Wild Coyote]

Originally Posted by BeyondtheRainbow

I've had good luck with getting meds from insurers when mine doesn't cover it so that I can afford it or doesn't cover it. It's definitely worth a shot for her. The application for patient assistance is usually online on the drug manufacturers' webpage and I just include a letter explaining my financial situation. It's always worked for me.

Thank you!
I will share this info with her! This may well open a new avenue for her to explore. This may give her some hope!

Thanks again!

WC

[TheSeaCat]

I'm sorry Wild that your friend is going through this.

There is a lot of issues within our healthcare system and unfortunately overpricing medication is one of them. I truly hope you friends insurance or drug manufacture is able to see that you friend truly would benefit from this medication.

I honestly wished pharmacy companies would think about the dangerous side effects some of the meds can cause.

It is a catch 22 from both sides. I hope you friend is able to get the medication and starts to feeling better.

[BeyondtheRainbow]

Also, if she isn't seeing a good neurologist with experience with TD please suggest she find one.

I once had a patient who developed TD from a non-pysch med. I'm not sure they even figured out the cause. But the neuro he saw at first apparently didn't know how to treat it and gave him haldol. That worked about as well as you'd expect and it took a while to get to another neuro at a hospital that treats psych patients and then he had to be switched around to other meds that might have worked better without the delay and haldol. I never understood the choice of haldol. So strange.

I'm glad she has you; a friend with knowledge with this kind of thing is invaluable.

[Wild Coyote]

Originally Posted by BeyondtheRainbow

Also, if she isn't seeing a good neurologist with experience with TD please suggest she find one.

I once had a patient who developed TD from a non-pysch med. I'm not sure they even figured out the cause. But the neuro he saw at first apparently didn't know how to treat it and gave him haldol. That worked about as well as you'd expect and it took a while to get to another neuro at a hospital that treats psych patients and then he had to be switched around to other meds that might have worked better without the delay and haldol. I never understood the choice of haldol. So strange.

I'm glad she has you; a friend with knowledge with this kind of thing is invaluable.

Thanks again!

Yes! Her pdoc has suggested she go back on the med which has caused this. While I am sure her pdoc was hoping to give her some relief, it's just tough to think about going back on it!

I agree with you re: her need for a neurologist!
Some neurologists specialize in movement disorders. I think this is the type of neurologist she should head for?

I love my pdoc; yet, if I ever get TD, I am heading to neurology!
I have suggested this to her; yet, will mention this again.
Thanks for confirming what I have been thinking.

I do try to be a good friend; so thanks for that!


WC

[liveforsummer]

WC, I’m sure your friend is so thankful to have a good friend like you. I certainly hope she receives the appropriate care soon.
Also thank you for this thread. It’s been very informative

I never knew the statistical likelihood. I'd say that 7% is quite disconcerting, too.

I once saw an elderly woman in the cafeteria at a psych hospital I was in that had TD. She had a very terrible case! It was frightening. Really!

My psychiatrist told me that Seroquel tends to be a bit friendlier when it comes to EPS than other antipsychotics. So far, it has been friendlier for me. So many AAPs gave me akathisia. Really nasty akathisia. One 1st generation gave me a dystonia. My psychiatrist lowered that medication's dose quickly, then took me off it soon after. Risperidone and paliperidone gave me hyperprolactinemia. That was bad! I believe paliperidone even caused a pituitary microadenoma to develop. The endocrinologist I went to really scared me about that. Miraculously, six months after going off paliperidone the tumor disappeared.

I have taken an antipsychotic all 14 years I've been on bipolar medications, save only one day - the first day of my first hospitalization. The fact is, my bipolar illness seems to require an antipsychotic. It's usually always the antipsychotic that curbs my mania best.

Hopefully better medications (or who knows, someday a cure) will be developed.

[Blueberrybook]

What's really frightening is when you get TD (I get it on Wellbutrin, it goes away when I quit Wellbutrin) and you have a history of Parkinson's disease in your family. My paternal grandmother died of that. It was just horrible because her mind was still there 100%.

[Wild Coyote]

Originally Posted by Blueberrybook

What's really frightening is when you get TD (I get it on Wellbutrin, it goes away when I quit Wellbutrin) and you have a history of Parkinson's disease in your family. My paternal grandmother died of that. It was just horrible because her mind was still there 100%.

I am not sure I understand correctly.
You had written you get TD with Wellbutrin. Bupropion is on your current med list. Bupropion is the generic form of Wellbutrin.

I'd never again touch any med which gave me TD, even temporarily.

Sorry about your grandmother.

[Wild Coyote]

Originally Posted by BirdDancer

I never knew the statistical likelihood. I'd say that 7% is quite disconcerting, too.

I once saw an elderly woman in the cafeteria at a psych hospital I was in that had TD. She had a very terrible case! It was frightening. Really!

Thank you for your entire post!
I am glad you are okay!

I have seen many people with TD, all quite severe.
These were people taking 1st generation and/or 2nd generation antipsychotic meds.
From what I understand, the idea was that 2nd generation antipsychotics were not supposed to cause as much TD. I also understand that the 2nd generation antipsychotics have caused a lot of TD.

My friend was on a low dose, 2nd generation antipsychotic. My friend's TD is also severe. She does not have control over her mouth and tongue movements. They both move rapidly and in different directions. She is also having difficulty walking. It's tough to describe; it really takes witnessing it in person to understand what it looks like.

I hope the antipsychotic meds show us all a lot of mercy.

Thanks again, BirdDancer!

WC

[~Christina]

This is one of my biggest fears and often has me on a ledge about going medfree again.

I did okay for about 18 months then I went down in flames.

I hope your friend finds some help, Neurologist for sure!

[Wild Coyote]

I've never wanted to drop a med so quickly as when I saw her and spoke with her.

I'd wanted to share without creating a lot of fear.
I guess we might as well talk about it. Those of us using/needing antipsychotic meds tend to fear this potential side-effect.


WC

[Sunflower123]

Thank you for this thread. I knew what it was and I knew it was a potential side effect but I hadn’t really thought about it before you made this thread. I researched it and it’s heart breaking! I’m so sorry for your friend!

I’ve benefited from a few patient assistance programs with pharmaceutical companies. I hope this works out for her.

You are a good friend.

[Lefty Seven]

Originally Posted by Wild Coyote

She and her pdoc have appealed once. As I understand this, under her insurance, she can continue the appeal only once more.

You don't necessarily have to go through your insurer or comply with their protocols; you can negotiate with the pharma company directly. I had to do this when I was prescribed a cardiac drug which cost $2000/month. I got a fat discount and my insurer was none the wiser. I also raided my cardiologist's office for samples, but in a completely legal and non-shady manner. PC is anonymous, right? Another route would be to prescribe a drug which doesn't cause TD. Pdocs get kickbacks for prescribing certain medications. Hint.

[Blueberrybook]

Originally Posted by Wild Coyote

I am not sure I understand correctly.
You had written you get TD with Wellbutrin. Bupropion is on your current med list. Bupropion is the generic form of Wellbutrin.

I'd never again touch any med which gave me TD, even temporarily.

Sorry about your grandmother.

Well, I was first on it with Effexor and blamed the Effexor. It stopped when I stopped the Wellbutrin. (but I'd also stopped the Effexor too, and the Effexor had bad withdrawals). The tremors were worse the first time I took it, with the Effexor. I was using the free county mental health system and and they didn't care much about side effects, unless you had issues like fainting or an obvious allergic reaction. They didn't even tell me about the tremor side effects.

I've taken Wellbutrin off & on many years now. I get the tremors but actually less noticeable than when I was in grad school. I want to get back on to Cymbalta if I need an AD (think I do for the holidays) but am not sure pdoc wants to make a switch over the holidays. When I went cold turkey off the Wellbutrin, sure, no more tremors, but I was depressed and wanted back on it. If only these things were easy.

[Wild Coyote]

Originally Posted by Blueberrybook

Well, I was first on it with Effexor and blamed the Effexor. It stopped when I stopped the Wellbutrin. (but I'd also stopped the Effexor too, and the Effexor had bad withdrawals). The tremors were worse the first time I took it, with the Effexor. I was using the free county mental health system and and they didn't care much about side effects, unless you had issues like fainting or an obvious allergic reaction. They didn't even tell me about the tremor side effects.

I've taken Wellbutrin off & on many years now. I get the tremors but actually less noticeable than when I was in grad school. I want to get back on to Cymbalta if I need an AD (think I do for the holidays) but am not sure pdoc wants to make a switch over the holidays. When I went cold turkey off the Wellbutrin, sure, no more tremors, but I was depressed and wanted back on it. If only these things were easy.

A lot of different meds cause a tremor as a side-effect.
I get a tremor with bupropion, too. I also get it with other meds of various types.

Is the side-effect of a tremor a part of TD?


WC