Requip - Not a Promising Start

It's so hard when our body doesn't respond to meds the way others (and even we) expect it to. Even if other meds aren't an issue, sometimes medical conditions cause meds to act differently. Maybe Requip will work out for you, maybe not. My concern is that no one thought you had a leg issue till you brought up the test results, then they decided to try you on Requip just to see what would happen. They didn't even explain to you what could be behind your limb movements being while in REM. Just seems to me that is significant in the big picture.

I just hope you get some good sleep on a regular basis, however you have to get it. I've had periods of relief from my limb movements with Sinemet, Mirapex and Requip. No help from Neurontin. But the side effects were a high price to pay for me, and once augmentation kicked in (pun intended), outweighed the benefits. I can say that the initial side effects tended to lessen once my body adjusted. I would not have had the periods of relief I did have if I hadn't been desperate enough for sleep to persist in spite of the side effects. As we talked about in chat, I've been down this road enough to know that increasing these meds too soon prevents one from learning if a lower dose would have eventually been effective. I could go a few weeks thinking a med wasn't going to work, when all of a sudden it started working. I'm so glad to now be off these meds and using the TENS, but I'm wondering if your medical condition might make using a TENS not an option for you. Let us know how things progress with you and Requip, if you choose to continue taking it.

Madalot wrote:I really had such high hopes in November of 2009 after my titration study, thinking that using a cpap/bipap machine would give me a boost of strength and solve an issue to make me feel like living again. Not only has that NOT happened, I'm more tired and feeling worse than when I started all this.

The only reason I've not given up is because I cannot breathe when I lay down. I feel it. It's uncomfortable and it's scary. The machine DOES make that better and I can usually breathe. I told my husband this morning that if not for the kids being up (I heard them) I think I could have stayed in bed all day and slept all day. So, I get up every day...but the price I'm paying in daytime fatigue -- it's not worth it. I'm turning into a vegetable and it's no way to live.

Maddy, This may be such a stupid question, but that typically does not stop me, so here goes. You talk about your pulmonologist and your neurologist. Do you see both about equally? Is one more your primary doc than the other or is it about equal? The only reason I am asking is that I truly wonder if either of these docs really understand what an impact all this is having on your quality of life and I am asking about your opinion on that question.
It just seems like there is a certain amount of grabbing onto anything...you were on your back during the sleep study (bc you were told to be) so let's tell her to sew a tennis ball onto her pjs...leg movements come up, so let's throw a pill at it, etc etc. I get the feeling everyone is just reacting to whatever happens to pop up.
Don't get me wrong, that approach can have merit and problems are probably often solved that way. I just wonder if these folks have lost sight of the big picture....namely, YOU and your quality of life. It almost seems to me as though someone needs to review this from the beginning (and I DO understand there is even some uncertainty about your exact diagnosis).
I care, as it clear so many folks on this forum do, and I find myself thinking that it is time for a real "get down to the bottom line" talk with whatever doctor you feel would be more receptive to it. You cannot stop the treatment because as you said, you can feel that breathing is very difficult when you lie down. Yet you are becoming so fatigued that your LIFE is becoming so compromised. Do they feel this is to be expected or do they feel. given your disease process, that it is NOT unreasonable to think your quality of life should (and could) be better than it is? I know I am asking a lot of questions and I do not mean for ANY of this to be intrusive, so I apologize if it is. I also realize getting these folks to contact you seems to be a feat in itself at a time when you don't feel like doing anything. Is there a scheduled appointment in the near future in which you might be able to just lay this on the table?
Once again, I apologize if any of this seems intrusive or just unbelievably simple-minded, but reading the post I quoted from above just breaks my heart for YOU and precipitated the questions I am asking.

Jeanette

kteague wrote:It's so hard when our body doesn't respond to meds the way others (and even we) expect it to.

I just hope you get some good sleep on a regular basis, however you have to get it. I've had periods of relief from my limb movements with Sinemet, Mirapex and Requip. No help from Neurontin. But the side effects were a high price to pay for me, and once augmentation kicked in (pun intended), outweighed the benefits. I can say that the initial side effects tended to lessen once my body adjusted. I would not have had the periods of relief I did have if I hadn't been desperate enough for sleep to persist in spite of the side effects. As we talked about in chat, I've been down this road enough to know that increasing these meds too soon prevents one from learning if a lower dose would have eventually been effective. I could go a few weeks thinking a med wasn't going to work, when all of a sudden it started working. I'm so glad to now be off these meds and using the TENS, but I'm wondering if your medical condition might make using a TENS not an option for you. Let us know how things progress with you and Requip, if you choose to continue taking it.

I agree about the side effects. Some medications I take to just fine, but there are others that I seem to get every side effect in the book! If not for the bleeding issue (significant enough to warrant concern), I would have kept taking Requip and tried to get through the other issues, hoping it would settle down. And since my doctor's associate never got back to me, we had to make a decision and that was to stop it after only one dose. And since the bleeding has totally stopped as well, it seems likely that Requip was the cause.

newhosehead wrote:

Madalot wrote:I really had such high hopes in November of 2009 after my titration study, thinking that using a cpap/bipap machine would give me a boost of strength and solve an issue to make me feel like living again. Not only has that NOT happened, I'm more tired and feeling worse than when I started all this.

The only reason I've not given up is because I cannot breathe when I lay down. I feel it. It's uncomfortable and it's scary. The machine DOES make that better and I can usually breathe. I told my husband this morning that if not for the kids being up (I heard them) I think I could have stayed in bed all day and slept all day. So, I get up every day...but the price I'm paying in daytime fatigue -- it's not worth it. I'm turning into a vegetable and it's no way to live.

Maddy, This may be such a stupid question, but that typically does not stop me, so here goes. You talk about your pulmonologist and your neurologist. Do you see both about equally? Is one more your primary doc than the other or is it about equal? The only reason I am asking is that I truly wonder if either of these docs really understand what an impact all this is having on your quality of life and I am asking about your opinion on that question.
It just seems like there is a certain amount of grabbing onto anything...you were on your back during the sleep study (bc you were told to be) so let's tell her to sew a tennis ball onto her pjs...leg movements come up, so let's throw a pill at it, etc etc. I get the feeling everyone is just reacting to whatever happens to pop up.
Don't get me wrong, that approach can have merit and problems are probably often solved that way. I just wonder if these folks have lost sight of the big picture....namely, YOU and your quality of life. It almost seems to me as though someone needs to review this from the beginning (and I DO understand there is even some uncertainty about your exact diagnosis).
I care, as it clear so many folks on this forum do, and I find myself thinking that it is time for a real "get down to the bottom line" talk with whatever doctor you feel would be more receptive to it. You cannot stop the treatment because as you said, you can feel that breathing is very difficult when you lie down. Yet you are becoming so fatigued that your LIFE is becoming so compromised. Do they feel this is to be expected or do they feel. given your disease process, that it is NOT unreasonable to think your quality of life should (and could) be better than it is? I know I am asking a lot of questions and I do not mean for ANY of this to be intrusive, so I apologize if it is. I also realize getting these folks to contact you seems to be a feat in itself at a time when you don't feel like doing anything. Is there a scheduled appointment in the near future in which you might be able to just lay this on the table?
Once again, I apologize if any of this seems intrusive or just unbelievably simple-minded, but reading the post I quoted from above just breaks my heart for YOU and precipitated the questions I am asking.

No apologies necessary, Jeanette. The questions are NOT intrusive and are valid. I see my pulmonologist every 4 months and I WAS seeing my neurologist yearly, but he moved my appointment up by 4 months and has said that I have too much going on at this time to go that long without seeing him. I'm guessing I'll see him every 6 months for a while.

I told my pulmo a lot of what you said, both on the phone and in an email - this situation is compromising my quality of life. And she told my neurologist that too (they're former colleagues and know each other well).

Part of this IS my fault, at least from my neurologist's end. I try to be cheerful and positive and not over complain about issues. I also try to understand things from their end, understanding that no matter what's going on with me, they have their problems too. In the end, I sometimes choose NOT to bitch and complain as much as I should, trying to be a "good" patient.

But I am so tired. It's sad that there is absolutely NOTHING I feel up to doing anymore. Nothing.

[/quote]
Part of this IS my fault, at least from my neurologist's end. I try to be cheerful and positive and not over complain about issues. I also try to understand things from their end, understanding that no matter what's going on with me, they have their problems too. In the end, I sometimes choose NOT to bitch and complain as much as I should, trying to be a "good" patient.

But I am so tired. It's sad that there is absolutely NOTHING I feel up to doing anymore. Nothing.[/quote]

Maddie, It IS sad. I think I, for one, would be far better off if I had your capacity not to bitch and complain! However, maybe you should think about it this way. Part of being a good patient is giving your doctor(s) the information they need to really know what is going on in your day-to-day life. It is not, IMO, bitching and complaining to let them know what a terrible price you are paying. If/when we do not let them know how we really feel, we are in a way handicapping them from really trying to get some answers. If you really put all this out there and you hear, "well, that is to be expected given a, b,c etc." that is one thing, but if they do NOT think it should be this bad, then perhaps something different will happen. I am, as always, wishing you the best outcome possible.

Jeanette

In the same vein as Jeanette's post, do you have perhaps a local Primary Dr who knows you well that you can make an appt with to just sit down and "talk". We've been fortunate in that regard and sometimes when we've been with too many "specialists" and no one gets the real picture, he is able to evaluate the whole situation and put some things into action that were either missed or the others were unaware of. I'm not sure I'm making myself clear but do you have a "captain of the ship" so to speak?

Madalot wrote: I appreciate your sharing this information, Rebecca. I don't think you have any clue how validating it is, for me, to hear that somebody else had problems with Requip. The way that doctor spoke to me (not MY doctor, but the one that called on his behalf) had me believing that I am truly insane.

But I really do appreciate your saying that Rebecca. It gives me a bit of a boost -- I'm not crazy, they just aren't listening.

You know the best person to check with about drug interactions and effects is a pharmacist. That is what they train for. Doctors mostly take the salesmans word, thye are trained in diagnosis not in drug therapy so take what they say with a grain of salt, it is NOT their field of expertise.

Good point, Black Spinner, we always check with our pharmacist if we're not sure, they have knowledge and tips that Drs don't have. We were just told by the urologist to take 2 of the same pill he prescribed in the morning but our pharm told us we'd get better results taking them one AM/PM and explained why. They're also more aware of interactions and side effects as those are the calls they get daily.

Talking to a pharmacist - that might be a good idea. Maybe I'll call tomorrow. I looked online to see if the bleeding problem was related to the Requip. I DID find one reference about it, but that's it.

I have an appointment with my Primary Care (regular 6-month checkup) a week from tomorrow. Maybe I'll try to talk to him then - if he seems receptive to it.

I just don't know what to do anymore.

I hate all of this for you. I wish i could do something other than wring my hands and assure you of my affection. If I feel frustrated, that must be only 1/100th of what you feel.

I hope you had a good mother's day.

((( hugs )))

snuginarug wrote:I hate all of this for you. I wish i could do something other than wring my hands and assure you of my affection. If I feel frustrated, that must be only 1/100th of what you feel.

I hope you had a good mother's day.

((( hugs )))

You're sweet, snug. Thank you.

In truth, my Mother's Day stunk. Both my kids decided to pull a stupid stunt that they know makes me mad, but did it anyway. We were all supposed to go to my husband's grandmother's house to celebrate, but I felt too sick to go. I sent my husband and kids and I spent the day, sitting in my chair, watching TV, half crying and dozing off, sick to my stomach.

They did bring me some dessert and a huge plate of food that will last me 3-4 days to finish it all. I can only eat very small portions at a time these days since my stomach muscles aren't able to move the food properly anymore.

But -- it is what it is.

Madalot:
I have been following your saga for a long time, but not posted because i did not feel I had anything to contribute. I have to agree that if your PCP is willing, he needs to be the conductor. A good example of your problem was an episode of the home remodeling show Holms on on Holms. The homeowners hired a general contractor to remodel their home (aprox $2000,000). The subcontractors did excellent work, but the general contractor was never there. The result was the job took longer and was never finished. Mike Holms came in, learned what was expected on the job and then organized the subcontractors to get the desired end result. This is also like "I cannot see the forest for the trees." Your PCP needs to see the Forest and direct the specalist to the Trees. I think that if your PCP is willing he can communicate with your other Doctors better than you as a patent could.
Thinking of you,

Steve

scbeaver wrote:Madalot:
I have been following your saga for a long time, but not posted because i did not feel I had anything to contribute. I have to agree that if your PCP is willing, he needs to be the conductor. A good example of your problem was an episode of the home remodeling show Holms on on Holms. The homeowners hired a general contractor to remodel their home (aprox $2000,000). The subcontractors did excellent work, but the general contractor was never there. The result was the job took longer and was never finished. Mike Holms came in, learned what was expected on the job and then organized the subcontractors to get the desired end result. This is also like "I cannot see the forest for the trees." Your PCP needs to see the Forest and direct the specalist to the Trees. I think that if your PCP is willing he can communicate with your other Doctors better than you as a patent could.
Thinking of you,

Steve

Thanks Steve. I won't rule it out, but have dealt with Primary Care physicians in my area since 2004 and don't have high hopes that he'll be willing to take control of this for me. I know I've said this before, but I live in a very bizarre area when it comes to medical care, especially dealing with Primary Care doctors. My experience with him has been that IF the situation requires a specialist, he immediately refers me and doesn't do much beyond that.

However, when I see him next week, I will feel him out and see if his being move involved and taking more control would be an option.

I took the advice about calling the pharmacy and was told that they had never heard of the "other" problem, but the pharmacist said that it could be from the Requip and strongly suggested I report the problem to the FDA MedWatch. She was really nice and said that many of the side effects that some people experience don't come out until AFTER the drug has been approved. She said that based on the timing of it and the fact that it resolved after stopping the medication, it seemed very likely it was the cause and said it was my responsibility to report it. And I did.

I called my neurologist's office this morning and spoke with his assistant. Rest assured that I did NOT understate my situation nor my frustration. Believe me, she understood and promised to get a message to my doctor immediately.

He called me back within two hours - himself this time. While it wasn't the most comfortable conversation I've ever had, he asked me to describe the "other" problem in detail and asked pointed questions to guage how bad it was. He also feels I should report it to my primary, which I will do when I see him next week. He reiterated that it was NOT something they'd heard of before, but also stated that the human body can sometimes react strangely to medications so we can't dismiss it. He agreed about stopping it doesn't want me trying it again.

He still believes that if we can get the limb movements under control, my overall sleep will be better.

He wants to try Mirapex, which is very similar to Requip, but he said this time, we will start on an even lower dosage and not increase it quickly. He said it may seem that it's not helping, but if I can tolerate it without the nasty side effects, he'll consider that a victory and we'll move on from there.

If I have the same type of problem, he said to stop it immediately. If that happens, he said there ARE other medications we could try. He also mentioned a non pharmaceutical approach we could take, which is the things you have in the hospital that inflate to keep from getting clots (I had them the last time I was hospitalized because of my mobility issues). But I already have enough trouble at night with muscle weakness and now a hose and mask on my face -- and he agrees that would be just one more thing to make me uncomfortable and possibly disrupt my sleep. But we're keeping it on the back burner as something we may try if it becomes necessary.

So..we're trying a different medication tonight, low dose and slow increase, and see what happens.

Madalot wrote:I have an appointment with my Primary Care (regular 6-month checkup) a week from tomorrow. Maybe I'll try to talk to him then - if he seems receptive to it.

I just don't know what to do anymore.

If he is NOT "receptive to it", then you NEED to ask him WHO he would suggest to be the coordinator of your care. It is very common with people with multiple specialists involved to have one main medical person to be the "care coordinator". As Steve said, this person would direct the specialists to "see the trees". There needs to be someone that you can call when you have a problem that is not being addressed by the specialists. There needs to be someone who can keep track of all of your different needs, and make sure each is being met properly. This person needs to be a medical personnel, so that they will actually be heard by your other specialists/doctors/therapists. There may be some HIPPA paperwork that would need to be done to allow the communication by all involved. But I really feel it is important that you have someone who can be your advocate, besides you and your husband. This is becoming too much for you, especially when the doctors seem to be dismissing what are legitimate problems. I would also like to see a "care conference" where ALL involved medical personnel come together, with you and your husband, to look at your overall situation. But I realize that probably is not going to happen. But please consider finding someone who can be the coordinator of your care, and who can answer questions for you (or get them answered for you) when the specialists don't respond appropriately (like telling you to sew tennis balls to your pajamas, or ignoring your calls on a Friday when you have started a new medication).

I wish there were some easy answer for you, but just know that we are still here, we still love you, and we still CARE!!! Hang in there, Maddie! You've got a crowd here supporting you when you feel like you can't go on.

Madalot wrote:If I have the same type of problem, he said to stop it immediately. If that happens, he said there ARE other medications we could try. He also mentioned a non pharmaceutical approach we could take, which is the things you have in the hospital that inflate to keep from getting clots (I had them the last time I was hospitalized because of my mobility issues). But I already have enough trouble at night with muscle weakness and now a hose and mask on my face -- and he agrees that would be just one more thing to make me uncomfortable and possibly disrupt my sleep. But we're keeping it on the back burner as something we may try if it becomes necessary.

Maddie,
My mom had a similar approach when she was issued a hospital bed for home use while on hospice. It was basically a mattress pad that was like a thin air mattress. There was a small "pump" (for lack of a better word) that hooked on the back of the bed. This allowed the amount of air within the mattress pad to change, slowly, over time, increasing and decreasing the amount of air. As the DME was hooking it up, I was afraid of 1) the noise, 2) the comfort of sleeping on "plastic" and 3) the comfort of sleeping on something that was always changing. I should have had NO fears! The "pump" was nearly silent! We put a thin cotton blanket over the mattress pad (and under the sheet), and Mom never complained either about sleeping on plastic or about the bed "changing" as she was lying on it. I think my Dad even tried it out once, and said it was rather comfortable. If this is the same type of thing the doctor is talking about, I wouldn't hesitate to try it. It may even help you to be able to sleep longer on your left (good?) side for longer times without the resulting pain.

jbn3boys wrote:

Madalot wrote:If I have the same type of problem, he said to stop it immediately. If that happens, he said there ARE other medications we could try. He also mentioned a non pharmaceutical approach we could take, which is the things you have in the hospital that inflate to keep from getting clots (I had them the last time I was hospitalized because of my mobility issues). But I already have enough trouble at night with muscle weakness and now a hose and mask on my face -- and he agrees that would be just one more thing to make me uncomfortable and possibly disrupt my sleep. But we're keeping it on the back burner as something we may try if it becomes necessary.

Maddie,
My mom had a similar approach when she was issued a hospital bed for home use while on hospice. It was basically a mattress pad that was like a thin air mattress. There was a small "pump" (for lack of a better word) that hooked on the back of the bed. This allowed the amount of air within the mattress pad to change, slowly, over time, increasing and decreasing the amount of air. As the DME was hooking it up, I was afraid of 1) the noise, 2) the comfort of sleeping on "plastic" and 3) the comfort of sleeping on something that was always changing. I should have had NO fears! The "pump" was nearly silent! We put a thin cotton blanket over the mattress pad (and under the sheet), and Mom never complained either about sleeping on plastic or about the bed "changing" as she was lying on it. I think my Dad even tried it out once, and said it was rather comfortable. If this is the same type of thing the doctor is talking about, I wouldn't hesitate to try it. It may even help you to be able to sleep longer on your left (good?) side for longer times without the resulting pain.

He was talking about these things that actually go on your legs, that inflate and deflate at regular intervals (I'm too tired right now to try to find the technical term for them). I had them after surgery about 3 years ago (before breathing problems) so I was flat on my back with them. There is no way I would be able to easily move or turn over with something like that on my legs, which is what he said as well.

Interesting that they have beds that do that though...