I have just signed up to participate with this forum. I was diagnosed with RSD two years, 13 stellate ganglions, a carpal tunnel release ago following rotator cuff surgery. I have gained 30lbs - I take Neurontin as one of the meds. Has anyone found an alternative drug to treat RSD that will help reverse the scales?

Also just received second denial of SSD - hearing is next step. Time to engage legal help. Any advice how to find a really good attorney for this disease?

Thanks much!!

perhaps this will prove helpful on the Neurontin. not sure about the SSDI.

GABAPENTIN: NEUROPATHIC PAIN AND WEIGHT GAIN
Wise Young, Ph.D., M.D.
W. M. Keck Center for Collaborative Neuroscience
Rutgers University, New Brunswick, NJ 08854
10 March 2006

Gabapentin (Commerical name: Neurontin) was first developed to treat epilepsy and recently discovered to have some beneficial effects for neuropathic pain. The drug is remarkably non-toxic. Studies of developmental toxicity in pregnant animals at doses of 500-3000 mg/kg (mice) and 60-1500 mg/kg (rats and rabbits) revealed no adverse maternal or fetal effects in mice or rats but at 1500 mg/kg, one rabbit died, four aborted, and the rest had reduced food consumption and body weight gain, while the rabbit fetuses showed no significant effect of the drug (Petrere and Anderson, 1994).

Early clinical studies suggested that gabapentin can cause weight gain in a small percentage of patients. In 1995, Morris (Morris, 1995) studied 100 patients (47 men and 53 women) who took a variety of anticonvulsant drugs, including gabapentin. Gabapentin reduced seizures by more than 50% in 72 patients and 23 patients had 75% reduction of seizures; 57% continued gabapentin treatment and 5 remained seizure-free on gabapentin monotherapy without complication. The mean daily dose was 2107 mg. Transient fatigue was the most common side-effect, affecting 20 patients. Seven patients had ataxia but 6 of these were taking another anti-seizure drug (carbamazepine). Two of the patients experienced wight gain.

Long-term exposure to high-dose gabapentin may suppress weight gain in rats. In 1995, Sigler, et al. (Sigler, et al., 1995) did a 2-year tumor bioassay in male Wistar rats, fed 250, 1000, and 2000 mg/kg doses for 104 weeks. While treatment resulted in 8-16% incidence of pancreatic acinar neoplasia, there were no increase in other tumor types and there was no tumor increase in female rats. The tumors were not invasive, did not metastasize, and did not increase mortality. Rats receiving 1000 and 2000 mg/kg showed body weight suppression.

Long-term gabapentin causes weight gain in epileptic patients. In 1997, DeToledo, et al. (DeToledo, et al., 1997) reported that epileptic patients who received gabapentin doses greater than 3000 mg/day for 12 months or longer had weight gain. In 44 patients, 10 (23%) had greater than 10% body weight gain, 15 (34%) had 5-10% body weight gain, 16 (36%) had no change, and 3 (7%) lost 5-10% body weight. Body weight gain occurred in patients taking gabapentin with other drugs but also in those taking gabapentin alone. In 1998, Baulac, et al. (Baulac, et al., 1998) studied 610 patients receiving 900-2400 mg/day of gabapentin for 6 months and only 8.8% of the patients showed weight gain. Postmarketing surveillance of 3100 patients in England suggest similar results (Wilton and Shakir, 2002).

The weight gain produced by gabapentin is similar to that produced by other drugs such as propranolol, atenelol, verapamil, and valproate, affecting only a modest number of patients (Maggioni, et al., 2005). A greater weight gain at 6 months was found in patients taking pizotifen, amitriptyline, and propranolol. Other psychotropic drugs can cause weight gain, such as clozapine, alanzepine, and some antidepressants such as amitryptyline, mirtazapine, lithium, valproic acid, carbamazepine, topiramate, zonisamide, and and some serotonin inhibitors (Ness-Abramof and Apovian, 2005), as well as pregabalin (Hamandi and Sander, 2006) and other new antiepileptic drugs (Marken and Pies, 2006).

If a person with neuropathic pain has weight gain from gabapentin, what alternatives are there? Gabapentin is structurally related to the inhibitory neurotransmitter gamma-aminobutyric acid (GABA) and readily crosses the blood brain barrier (Morris, 1999), affecting presynaptic calcium channels to influence neurotransmitter release (Cheng and Chiou, 2006). As an anti-epileptic drug, gabapentin is not particularly effective as a monotherapy but may be useful in combination with other drugs (Harden, et al., 2005). Gabapentin relieves neuropathic pain in some patients, but a recent literature review suggest that amitriptylline and carbemapazine may be more beneficial and cheaper (Cepeda and Farrar, 2006).

Pregabalin, a structural congener of gabapentin, is a new anti-convulsant that was provisionally approved by the US Food and Drug Administration in December 2004 for treating neuropathic pain (Guay, 2005). In doses of 50-200 mg three times a day, pregabalin was superior to placebo for treatment of diabetic peripheral neuropathy and postherpetic neuralgia (p<0.001 to p<0.049) in several clinical trials. Weight gain was seen in about 14% of the patients at the highest dose of 600 mg/day (Hamandi and Sander, 2006).

In summary, gabapentin seems to cause weight gain in a modest proportion of patients. The weight gain appears to be more common with higher doses exceeding 3000 mg/day and longer term therapies of 6 months or longer. Many other drugs that may be useful for neuropathic pain also seem to induce weight gain in 8-10% of patients. It may, however, be worthwhile to try these other drugs.

oh yea, and welcome to the site!

Thank you for such a complete medical response. I guess I need to start researching alternative drug therapies to see if on might be kinder to me and still assist with symptoms!

I was denied twice but had a local attorney. He did not specialize in this but I was lucky he was good. The hearing was very short and just in a small room. It took 5 min. And I got my award. And I got retro from when I stopped working. Hang in there and get an attorney. You should not have to pay one. They will take a percentage of your settlement. If they ask for money, run away. Good luck

Not sure where you are at but I would check the rsdsa.org website for an attorney.

I also have weight gain of about 30 lbs on neurontin and have found that the more I am able to do the better off I am.
Welcome to the forum!

Hello 1sadhaka......Welcome to NT !

I gained some weight after starting on Neurontin, then developed type 2 diabetes. Because of my weight (which was too much even before the Neurontin), that may have been in store for me anyway......but I expected it 20 years later (based on my family history)

For me, Neurontin is also very binding......and makes me even more tired.

I'd call that some pretty undesirable side effects, BUT......I still take it because it helps A LOT with the pain.

Lyrica is in the same class as Neurontin. It has many of the same side effects.....for SOME people. My insurance won't cover Lyrica.

Some people get some relief from the tricyclic antidepressents, like Elavil/Amitriptyline/Nortriptyline (? spellings)

Narcotics have helped me a lot.

Water therapy has been my savior.

Ice is a 'known' no-no for rsd'ers. I can definitely see that it has caused rebound pain for me, but if I've taken/used everything else in my arsenal......an icepack can be my best friend.

ALL meds have side effects. Which ones will be an issue for which patients is anyone's guess. It's weighing the pros and cons for each person's case.

Just to add......make sure to get an attorney who specializes in SSDI cases.

That worked for me at the ALJ level. Best of luck in the battle with SSDI and RSD !

Thanks for all the input. I reached out to local rsdsa group for the first time. I am meeting an attny who specializes in ssd that they recommended. That has become my focus.

And yes the weight gain has raised concern about diabetes here as well.

Thanks again for suggestions and feedback!!

I reached out to RSDSA and found the name of a group leader and councilor in my city. She in turn reached out to her community and provided me the name of an attorney in town. Of the three SSDI attorneys I contacted, I hired the referred lawyer. It feels really good to have a plan, to have the support, to hear that I really should win.

I don't talk very much about my RSD to anyone - this feels like a very positive step.