neuro appt.

[cdoesc]

So this is my second visit to my neurologist. I have failed trials of requip, neurontin, mirapex, and the neupro patch. So now I am taking klonopin with 0.5mg of mirapex (cant tolerate a higher dose) iron supplements, and allowed 2 (50mg) of ultram daily. I guess my question is how to I bring up the need for more or different pain meds without looking or feeling guilty for asking for pain meds. I have it in my arms and legs 24/7 im desperate for relief.

[ViewsAskew]

cdoesc, you mention three dopamine agonists in your list. You said it's 24/7.

Was it that way before you started taking these drugs? Has it worsened in intensity, duration, or location since you started taking these drugs?

When I see three dopamine agonists and that you've failed them, I have to wonder, why? Did you start one first and have it go downhill from there?

Help us understand what it means to fail them? In another post, I think you said that Neupro made it worse. That is a classic sign of augmentation. When you have augmented (the drug actually makes your symptoms worse) and you try a different dopamine agonist, you often can have out of sight symptoms!

The only way to help you is to know what your history is.

[cdoesc]

I started having symptoms in my 20s. I am 43 now. I didnt have to start taking meds until my early thirties. The first drug was requip which didnt provide much relief on an average dose so the md took me off. The sinemet I couldnt tolerate I would literally throw up 30 minutes after taking it whether I had eaten or not. Neupro patch made me
Worse my legs were getting tight with my muscles in knots. The mirapex helps me minimally but if I increase the dose I am throwing up. Last but not least the neurontin was extremely sedating and was taken off by the doctor. The sinemet and neurontin I was not on long enough to tell if it helped my symptoms, my body didnt tolerate it. The best relief I have is klonopin and tramadol but its literally like pulling teeth to get even that. I was also diagnosed with periodic limb movement disorder.

[ViewsAskew]

Thanks - just a couple more questions....

Have your symptoms worsened over time? If so, how were they originally and when did they worsen?

Did you try the Neupro either during the time you tried Mirapex, or right after using Mirapex?

[cdoesc]

I tried the neupro right after mirapex. It has gotten much worse in the last 2 years. But the past year my arms became involved, where I just want to cry. It has become more thsn an incovenience, I feel like im in chronic pain all the time.

[ViewsAskew]

Were you taking Mirapex when your arms got involved and when it got worse in the last two years?

If the answer is yes, you likely are suffering from augmentation. It's when the medication makes the symptoms worse - the vast majority of the time when the arms get involved, a person is augmenting. The reason you need to know if you are augmenting is because your doctor may not know what it is or how to treat it. And, the treatment is very specific- you have to stop the Mirapex and use another drug - usually an opioid - to help you get off the drug. Then, you can see what drugs will work for you.

If you have seen this neurologist before and he/she hasn't noticed the augmentation (if that is what it is), you may have to help him/her learn about it.

There are some good articles about how to treat it. Take this article with you: http://www.rls.org/Document.Doc?id=1985

You can also give him this information, including the printout info so the doctor can access the full article and ask him if you are augmenting. If so, he/she should change the treatment plan.

Neurotherapeutics. 2012 Oct;9(4):776-90. doi: 10.1007/s13311-012-0139-4
Strategies for the treatment of restless legs syndrome
Buchfuhrer MJ, Solo Clinical Practice, Downey, CA 90241, USA
Abstract
Restless legs syndrome (RLS) is a common neurological disorder of unknown etiology that is managed by therapy directed at relieving its symptoms. Treatment of patients with milder symptoms that occur intermittently may be treated with nonpharmacological therapy but when not successful, drug therapy should be chosen based on the timing of the symptoms and the needs of the patient. Patients with moderate to severe RLS typically require daily medication to control their symptoms. Although the dopamine agonists, ropinirole and pramipexole have been the drugs of choice for patients with moderate to severe RLS, drug emergent problems like augmentation may limit their use for long term therapy. Keeping the dopamine agonist dose as low as possible, using longer acting dopamine agonists such as the rotigotine patch and maintaining a high serum ferritin level may help prevent the development of augmentation. The a2d anticonvulsants may now also be considered as drugs of choice for moderate to severe RLS patients. Opioids should be considered for RLS patients, especially for those who have failed other therapies since they are very effective for severe cases. When monitored appropriately, they can be very safe and durable for long term therapy. They should also be strongly considered for treating patients with augmentation as they are very effective for relieving the worsening symptoms that occur when decreasing or eliminating dopamine agonists.

[badnights]

I will add one comment to Views'. It's not just Mirapex you need to avoid. While you're augmenting and getting off the Mirapex, you need to avoid all drugs of that class, ie. all the dopamine / Parkinson's drugs: ropinirole/Requip, pramipexole/Mirapex, rotigotine/Neupro, levo-carbidopa/Sinemet. All of those drugs can cause augmentation, which is a worsening of the symptoms, defined as earlier onset in the day (eg. they used to start in the evening but now they start in the afternoon), invovlement of more body parts than before (eg arms), or increase in intensity.

Your doctor might say (as mine did) "but my Parkinson's patients have had no such problems". That is true; it's not an issue for Parkinson's patients. Augmentation happens to RLS/WED patients taking Parkinson's drugs, but not to Parkinson's patients.

The only way to stop the augmentation and bring symptoms back to your normal level is to stop the dopamine drug completely and wait til it has been cleaned out of your system. During this time, your symptoms usually get EVEN WORSE, which makes stopping unbearable if you don't know it will end. Even knowing it will end, it's a cruel form of torture, and can be prevented by a 2 or 3-week prescription for a potent opioid, which will kill the worst of the symptoms during withdrawal.

If your doctor doesn't know this (many don't. even neurologists, who really should) then as Ann said you will have to help him learn, at this point go back to her post and print the abstract, and the link, to take to your doctor.

[cdoesc]

Saw the neurologist. Placed me back on neurontin 100mg three times a day, which is a lower dose than I was previously on. Still makes me soo sleepy, feel like Im livimg in a fog. She also referred my to a hematologist because of my low ferritin level (9). I see her on the 27th. Still having symptoms in my arms and my leg is throbbing as I type. Im taking tramadol 50mg three times a day for the pain, Just would like to find a combo that gives me back my quality of life!!

[debbluebird]

You might find that after awhile you will get used to the neurontin and not be so sleepy. They should have started you slowly, maybe one a day, then two and finally three. If you ever go off of it you will need to do the same thing, wean off slowly. Right now I am weaning off of Neurontin. I'm at two right now.
Hope you can get a better opioid. That should give you relief. Once you get over the augmentation it should stop in your arms. ( I hope) I have both WED and PLMD. I only had it in my arms during augmentation.
I am very sensitive to drugs. I only take Mirapex 0.125 mg one tab. Years ago they started me on two tabs. I have found that one is enough.
Also, have you stopped caffeine, aspartame, cold medicine. There is a whole list on this site.

[Polar Bear]

Ferritin at 9 is really low for a WED sufferer, I hope you get your appointment as soon as possible.
I also take tramadol to supplement my requip/ropinerole but they just don't do it on their own. Evening time and bedtime I add 30mg co-codamol and this makes all the difference. The co-codamol is actually prescribed for neck pain which has eased but I haven't made my GP any the wiser.

[ViewsAskew]

Good thing they tested the ferritin - no Mirapex or Requip or Neupro until that level is up over 100!

[badnights]

The reason for what Views said is that augmentation is more likely (almost inevitable) when ferritin is low and a person takes any of the dopamine drugs.

You might even take iron pills on your own, before you see a hematologist! (how long will that takes?)

Did you give your neuro any of the information about RLS/WED and augmentation that we posted for you?

[cdoesc]

Hematology appointment in the morning. Nervous, I dont know why just a consult. Maybe because the receptionist said " just a consult to see if we are going to do anything." Sounds like the story of my rls life!

[ViewsAskew]

Hematology appointment in the morning. Nervous, I dont know why just a consult. Maybe because the receptionist said " just a consult to see if we are going to do anything." Sounds like the story of my rls life!

Please make sure you let the hematologist know that low serum ferritin is VERY common with WED patients. They often do not know this. SUggest he/she do some research on it to learn more, if he/she isn't familiar.

The studies at Johns Hopkins in using blood transfusions is a good place to look.

I found these in just a couple minutes, so I know he/she can find many if he/she knows to look.
http://www.sciencesleep.org/ziliao/CSF% ... ndrome.pdf
http://www.medicine.ox.ac.uk/bandolier/ ... /iron.html
http://www.news-medical.net/news/201301 ... drome.aspx
http://www.ndcenterfornursing.org/wp-co ... ndrome.pdf

[cdoesc]

Saw hematology. She wasnt impressed with ferritin level (9) wants me to continue on my supplements for 3 more months, Then we'll consider infusion therapy. Not sure what to think. Basically sitting in neutral AGAIN.