Medications

Hi Doug, On the CIDP forum, page 6, there is a thread about Provigil. I myself was given it to try many months ago. I used it one day. It made my heart race(pulse got up to 160). I’m on a beta-blocker that keeps my HR around 60, but that didn’t help. I know other’s have had good results from it. Take care, Vicki

Hey Doug,

I had the same exact issues as you. Because of the cost of Provogil I was put on Ritalin instead. I have been on it almost 2 years, it has made a world of difference for me.

Jerimy

Doug,

Just brought up the Provigil thread for you. As Vicki said, there is also one on the CIDP section.

Doug,
just a few comments of the effects now. It still helps me stay awake throughout the day, but I still feel the underlying body fatigue in a way. It is very hard to explain …. This year on vacation I was able to do so much more with my family than I have in the past, it was a difference of night and day. Its almost as if your mind wont let your body rest, and you feel yourself straining, but you push on. I have been overdoing it because of the Provigil, I just need to remember that I still cant do the things I did. Its almost as if my mind is trying to overide my body – as a result my body feels battered at the moment, but at least I behave normally (sorry, I just dont know how else to explain it). Remember, as said before, if you do take it, make sure its early in the morning as you will even have a harder time trying to fall asleep.

I didnt want to take this medication, but now, realizing what a much better quality of life it gives me, I wont easily stop taking it.

Hi, this may help:

The following article was published in the Fall/Winter 2001 edition of [I]THE COMMUNICATOR[/I] A Fact Sheet on GBS for the General Practitioner/Primary Care Physician by Joel S. Steinberg, MD, PhD

These are followed by Pain: Weakness is the major feature of GBS. However, many patients also experience some degree of paresthesias (abnormal sensations), such as numbness, tingling, formications (a sense of insects crawling under the skin) and even pain. These may be felt in the feet, hands, and elsewhere. They may become more prominent when the patient is fatigued. Of the various paresthesias that the GBS patient may experience, pain is the most problematic and thus usually merits treatment. Several options may be tried. Treatment should be customized.

(I) Over the counter analgesics usually offer a safe initial approach to pain relief. Choices include acetaminophen (Tylenol); aspirin or ASA, including formulations to reduce the risk of upset stomach (enteric coated aspirin [Ecotrin], aspirin with antacid (Ascriptin); ibuprofen (Advil) and naproxen (Aleve). In addition, other non-prescription approaches, such as moist heat or cold applications may be considered.

Of prescription drugs, the following products are sometimes helpful to relieve pain. The more popular medications, in part reflective of results of formal studies are bolded.

(II) Prescription analgesics. Several drugs are available in this group. These include propoxyphene (e.g. Darvocet N-100), tramadol (Ultram; Ultracet), non-steroidal anti-inflammatory drugs (NSAID’s), pentazocine (Talwin Compound [with aspirin]) [watch for dependence], opioids, the local analgesic lidocaine, applied as a 5% patch (Lidoderm) and topically applied capsaicin (applied to the skin up to 4 times a day). Long acting analgesics, such as fentanyl (Duragesic Patch), a narcotic analgesic, may reduce the risk of addiction. As a generalization, opioids may not be that helpful for neuropathic pain. Furthermore, a potential for addiction and constipation may limit their practical use. The latter may be addressed with sufficient dosing of senna concentrate (e.g. Senokot tablets) or lactulose syrup, to obtain a comfortable daily bowel movement.

(III) Tricyclic antidepressants are attractive in part due to low cost, as they are available generically. An example is nortriptyline (Pamelor). It can be started at a low dose, 10mg q. h.s., and doubled every few days to weeks, as tolerated, until pain is reduced or side effects become too annoying (dry mouth, etc.) A maximal dose is 150mg. Other tricyclic antidepressants, e.g., amitriptyline (Elavil, Endep), desipramine (Norpramine, Pertofrane) and doxepin (Sinequan), a dibenzoxepin, may also be considered. Nortriptyline and other tricyclics can be combined with the anti-seizure medications described below.

(IV) Selective serotonin uptake inhibitors (SSUI). Among this class of antidepressants, paroxetine (Paxil) has been used to suppress pain.

(V) Anticonvulsants. Several drugs originally developed and marketed to treat seizures (anticonvulsant or antiseizure drugs) have become popular to suppress pain. Historically phenytoin (Dilantin) and carbamazepine (Tegretol) had been found helpful to reduce pain. However, untoward side effects have led to a preference for newer, safer antiseizure medications.

1. Gabapentin (Neurontin) (available as 100, 300, 400, 600 and 800mg capsules) is perhaps the most popular medication in the anticonvulsant group. It can be started at a low dose, of 100mg a day, and doubled, every 4-7 days, in a bid to tid regimen, to doses as high as 4,000mg total daily, until pain abates. If dizziness, somnolence or other side effects develop, decease to the prior dose for 1-2 weeks, until side effects abate. Other potential anticonvulsant options are listed below.

2. Topiramate (Topamax) (available as 25, 100 and 200mg tablets) is typically started at 25-50mg and increased, every 1-2 weeks, as a bid regimen, to total daily doses of 50 (as 25mg bid) to 400mg (200mg bid) dosing. If drowsiness or weight loss develop, decrease the dose for 2 to 4 weeks until side effects abate.

3. Lamotrigine (Lamictal), another antiseizure medication (available in 25, 100, 150 and 200mg tablets) should be started at a very low dose, 25mg every other day, to reduce the risk of severe skin rash. It can be increased, every other week, to two times a day, and then doubled every other week, up to 250mg twice a day. At least one study (Aakrzewska, Pain73:223; 1997) supports its potential ability to relieve pain.

4. Zonisamide (Zonegran: 100mg capsule) is a newer anticonvulsant agent. Initially started at 100mg daily, the dose is increased after a steady state is achieved at two weeks (due to its long half life), at 100mg increments, to 200 and even 400mg daily. Potential side effects include somnolence, anorexia, dizziness, headache, nausea and agitation/irritability. Formal study evidence for pain reduction capability iw wanting.

5. Oxcarbazepine (trileptal: 150, 300 and 600mg tablets) also a newer anticonvulsant agent, is reported to have efficacy comparable to Tegretol. It is usually started at 300mg bid and increased as may be warranted, at weekly intervals, to 600mg bid and then to 1200mg bid. Potential side effects include headache, somnolence or fatigue, dizziness, viral infection, nausea and asymptomatic hyponatremia.

6. Valproic acid (Depakene: 250mg capsule, Depakote) is a carboxylic acid type of anticonvulsant that has been used to suppress pain. The recommended dosing for seizures is 15mg/kg/day (1,000mg for a 70kg [150 lb] patient, and can be increased every week by 5-10mg/kg/day (about 250-500mg/70kg), to a servative dosing has been recommended, starting at 500mg per day, and increased by 100mg per week. Various studies suggest its value to relieve pain. A potential for liver toxicity warrants monitoring of hepatic function during the first six months of use.

7. Clonazepam (Klonopin, 0.5, 1, 2mg tablets), in the benzodiazepine group of anticonvulsants (along with chlordiazepoxide [Librium], etc.), has helped suppress pain in a small percentage of patients. Divided day doses, raised slowly up to 3mg total per day are usually tolerated, and a daily dose as high as 8mg have been successfully used. Potential side effects, drowsiness, fatigue and lethargy, tend to subside with continued use.

(VI) Cardiac antidysmythmia agents. Some drugs, marketed for cardiac dysmythmias (arrhythmias), have sometimes been used to treat pain. An example is mexiletine (Mexitil).

Non-medication treatments. In addition to medications, several other methods have been employed to relieve pain. These include acupuncture, pool therapy, transcutaneous electric nerve stimulation and nerve blocks. As is true for most aspects of medicine, treatment approaches should be individualized for each patient.

Jethro

Jethro,

Thanks so much for your post. It was published before I got GBS, so I had not seen the article until you put it up. Things like this are great to take to doctors.

Thanks again.

Hi Everyone,

Wow, Jethro, that was a great typing effort – you did great. Doug, I would like to mention that I took amitryp. for about 3 years. It was pretty good but I gained a bunch of weight. I took klonopin at night with it and did sleep fairly well. Oh, and I took Paxil during the day.

I recently switched to Cymbalta hoping for some miracle relief, and it has been good, but sleeping is still goofy even though I am taking some ambien now.

That’s all 🙂

Thanks Chrissy.

I enjoy typing. In fact, I took typing two years in high school and typing has been associated with my career employment prior to retirement. I have sensory nerve damage in my fingers and can’t feel nearly as well as I could before GBS/CIDP, but I can still type well, which is a blessing.

When the glare of adversity is blinding, we have to watch for the evidence of God’s presence and grace in less obvious ways. Regardless of our afflictions – we need to recognize our blessings one by one.

Jethro

Jethro,

Thank you for your words of wisdom. I’m a bit frustrated with life right now for several reasons, including GBS, and as you may remember, my father passed in Feb. so I don’t have him around for advice.

Your words reminded me of my Dad and I want to give you a big hug!

Hi Doug,

The longest lasting residual with GBS is fatigue. You describe a classic way of how it operates for awhile until energy management is adjusted enough to handle your complete day.
Think of a car tachometer. From zero to red-line. Red-line being normal.
From zero, like getting out of bed in the AM, it arks upward as you increase speed, body working now, then instead of going up to red-line at 7000rpm, it flattens out at 4000rpm, like hitting a govenor, and now the ark quits going upward, and takes a flat 90degree turn right, and stays that way for another period of time, which is the GBS residual(govenor), the maching will still run, but as time goes by, like getting home from work, it starts going straight down, like falling off a cliff, in a hurry, back to zero. I always start there with any fatigue issue, then see what is being added to lower rpm, or that flat line that I can have some effect on. Like changing or adjusting meds.

Just wanted to report on my recent prescription for Provigil. I started with 100 mg in the morning, and it did seem to help my fatigue from GBS, but not a huge amount.

My doctor then upped the dosage to 200mg in the morning, and it really is helping. I echo Ali’s earlier post about the feelings this generates.

My stamina is back, but I have to be careful not to overdo. Payback is rough when your mind pushes you to do more than is good for your body. I’m learning to pace myself better, but at first, I was so happy to have the energy to do things again, that I really did too much.

Ali put it very well in her post. Your mind doesn’t want to let your body stop.

Hope this will be of some help to others.

Thank you Jethro for typing the list of medications and your remarks regarding God’s prescence in our lives. Like you, typing was part of my career work, first as an executive secretary then as a District
Foreign Language Coordinator. Your long well-typed message has encouraged me to try to type the correct way, instead of two fingers. I also have sensory nerve damage. Thank you for showing me there is hope, and not to give up trying to get back that skill.

Peg

[QUOTE=Swimm]Thought I might start up a thread regarding different medications, as I have seen many questions scattered throughout.

Does anyone have any experience with a drug called Provigil? My wife (a physician) has suggested I talk with my doctor about trying it to help with two issues:

(1) I continue to have a great deal of trouble sleeping at night. Hopefully an increased dose of 50mg of Amitriptyline will help this, too.

(2) I have a great deal of fatigue, especially by the time I get home from work at night.

If you dont mind my asking, for those that have experience, what were (a) the effects and (b) the side effects of the Provigil?

Thanks![/QUOTE]

Miller Fisher – I have MF (3/06) and get very tired through out the day – please let me know if anyone who has had MF has tried this drug.

Doug,

So happy to hear that you are getting good results with Provigil. Sounds like you are being cautious and using it carefully, so I’m sure you’ll do fine. Great news!

Suzanne

Dear Friends,

Time is the best medicine for this disease. However, the last 10 years I have learned that divine spiritual and family love heals, restores, and uplifts life more than anything else on this Earth.

Warmest regards.

Jethro

Jethro, I need to be added to the list of those thanking you.
The info on the meds is a wonderful tool for our GP’s.

I am in a small midwestern area and specialists and neurologists are a long way off. I am very pleased with my GP but understand her place in not being able to keep constantly current just for my GBS. I’m definitely copying your post.

Thanks for taking the time and for the insightful personal thoughts.

JayDee

JayDee and All:

GBSFI (Guillain Barre Syndrome Foundation International) sends out a Newsletter 4 times a year – It’s called [I]The Communicator.[/I] Each year they publish a special Doctor’s Medical Edition…which is good to share with your doctor. Or, your doctor could request to be put on the mailing list too.

If you are not getting [I]The Communicator[/I], you can call GBSFI and request your name be put on the mailing list: (610)-667-0131

Warmest regards.

Jethro

One of our members wrote that he takes Rytilin (spelling is wrong on this) instead of Provigil because it is less expensive.

Can anyone tell me the differences between the two meds, besides cost?

Suzanne

Suzanne,

I am the one taking Ritalin instead of Provigil. I am on medicare/medicade and couldn’t afford the additional cost to take the Provigil. The way I understand it, they are both CNS stimulants and they are not sure exactly how they work to do what they do. Since Ritalin had been in use much longer my Neuro was more comfortable prescribing it versus Provigil. One thing to note and I am not sure if this is true with Provigil or not, I have to go every month to my Primary Care and pick up the written prescription to go have it filled, I cannot get more then a months worth at a time as it is a controlled substance, same is true with my Tramadol. It is a major pain, but has been totally worth it for how much Ritalin has helped me.

Jerimy

Thanks Jerimy,

Glad you have something that is working for you. The Provigil is doing a good job for me too, but fortunately, my HMO pays for it, so cost isn’t an issue.

However, a friend of mine who needs it for a different problem isn’t so fortunate, and found out that Provigil is very expensive. I told him about one of our members taking Ritalin instead.

Do you mind telling me what your dosage is? I’m taking 200 mg per day of Provigil.

Many thanks,

Suzanne