Question
I am 30 years old and have Neurofibromatosis.  In 1989 I had neurosurgery for a bilateral optic nerve glioma.  Since the tumour was inoperable, I had radiation theraphy, a calcium crust formed around the tumour  That has been stable since.

In 1992 I started getting pains in my face.  An MRI revealed a mass in my cranial nerves.  I had surgery in 1993 to remove this mass.  The 9th cranial nerve was severed on one side.  the pains came back, so did the tumour.  In the summer of 1995 I had another surgery.  The pains came back again and in the spring of 1996, another surgery.  The pains came back and in 1997 I had a massive surgery. I had an allergic reacticon to heparin, I was unable to swallow and my voice was very weak.  Because i was tube feed for 3 months, I lost a lot of weight.  I put it all back on while leaving in residence (University).

In about 1999 the pains started comming back again.  It was decided that we would wait and see.  I think it was in 2000 I tried acupuncture to aleviate the pains.  In 2003 my neurologist put me on Neurontin.  That helped a bit.  

Last spring my neurologist put me Lyrica.  That seemed to help; however, I gained 10llbs in about 2 weeks.  (I have struggled with weight loss for a number of years).  I was down to 190 (from 120).

This January I was admitted to the hospital with TTP.  Luckily the first round (5 days) of plasmapherisis (sp?) worked.  My platlites had been down to 11.  I believe they are now in the 200's.  I was also diagnosed with an underactive thyroid.

My question/concern is about my weight.  I am not "really" active, but I walk most places (or take a bus) because I am visually impaired.  I also use some equipment I have in my apartment.  Most days I eat about 1600 calories.  I don't eat a lot of fried foods or junk food.  I try and make healthy food choices.

Do you have any ideas or suggestions.  (Next time I see my GP I will talk to her about it).  Any comments or suggestions would be appreciated.

Answer
Hello Judith and thanks for writing,

My sincerest apologizes for my delayed response - unexpected "family stuff" which took me out of town for a week. Below is some information which I hope will be helpful for you.

Weight gain with Lyrica seems to be very common - see: http://www.medicalnewstoday.com/youropinions.phopinionid=7681 for posts from others experiencing the same issue.

Hypothyroidism also causes weight gain (along with Fatigue, Weakness, Coarse, dry hair , Dry, rough pale skin, Hair loss , Cold intolerance (can't tolerate the cold like those around you), Muscle cramps and frequent muscle aches, Constipation,, Depression, Irritability, Memory loss, Abnormal menstrual cycles & Decreased libido).

I am sure that your physician will most likely start you on Levothyroxine once s/he has completed the necessary blood tests to confirm Hypothyroidism and that should help with some of the weight loss.

You should speak to your physician about the health risks associated with excessive weight and discuss whether Lyrica is the best medication choice for you; if it is, then you will simply have to increase your caloric burn every day through cardio workouts to minimize the weight gain for you.

I hope this answers your questions and I wish you all the best in your future; please write again anytime. Again I apologize for my delayed response - that is very unlike me, I always do my best to answers all my questions the same day.

All my best,

Margot

excerpts from:
http://www.endocrineweb.com/
http://www.emedicine.com/