[fern]

a nice lady on my television set is pitching Lyrica for treating Fibromyalsia. that's new to me...but it helps my TOS. She says one side EFX is weight gain. I have that and am wondering what the weight gain is due to ? I'd like to keep taking the drug but would like to reduce those extra pounds. Is the weight gain due to increased appetite or lower metabolism or what? Someone (tam?) said her blood sugar went up due to Lyrica and when I asked a doctor he said he hadn't heard of that but offered to let me take a blood test.

I am wondering if I were to cut back the amount I take would that reduce the side effect?

so... how about a "Biggest Loser" show for people with advanced TOS?

[annhere]

My doctor offered me Topmax instead beacuse I was concerned about weight gain. Topamax actually has weight loss as a known side affect....
Just a thought.....

Ann

[tshadow]

The Topamax weight loss effect is early and temporary. This is both MY experience, and THREE other specific people I know. (I don't want to list them here.) So don't assume the weight loss will last forever, or, even that it actually turns to a weight gain drug!!!

From my reading, (and I'm not God here, haha), Topomax stops having that weight loss side effect when your system corrects itself and battles the Topomax and goes towards weight gain. This is common with a lot of antidepressants - what starts off helping you lose weight then turns into a weight gain problem, which makes sense if you think about the body trying to work to correct itself and battle a new drug in its system. (I read a LOT on these things, folks, more than the average person, and I read stuff from the pharmacies themselves, articles from accepted medical periodicals only. I'm not talking about NET message boards.)

Also, be very wary on your doseage - we've all discussed that some people (like me) have had manic episodes where I've felt like I'm "ok" and can't sleep and then I CRASH, can't breathe, walk, move, don't remember the last couple of days, talked weird or slurred words, and suffer a huge impact depression. This happened three times while I was trying to get my dose to 125, which my body just said NO. The best I managed was 50 mg.s a day...and that was really no effect on my disease. OCgirl saved my life by noticing my emails were weird / spelling was off, and she visited me when I had such a bad crash. Thank God for her doing that.

As for Lyrica - well, I am a BIG hater of that drug. I had 47 years of perfect blood sugar and within 3 months my blood sugar was 500 (over 100 is bad.)

The work comp docs IGNORED this result so I walked around with 500 blood sugar as my eyesight went almost totally blind with blurry vision - I couldn't even see the t.v. anymore...and my weight went up another 40 lbs. or so, from the gain I'd already had from TOS and Topamax. (Topamax took off 30 then put on 40 quickly when it turned on me.) (And that's without eating hardly anything, drinking skim milk basically.) At the end, I was gaining like 2 lbs, EACH DAY! Without eating anything but skim milk. I was so shocked. My pictures then showed my face all bloated.

So finally one doc and I talked about the Lyrica because I brought it up, and the blood sugar, and I'd ended up in ER. So I went off of the Lyrica, (which had NO effect on pain btw.) BUT the diabetes II was still there!

It's been about 7 months now off of Lyrica, and I've had to take Metformin every day, which then caused it's own set of side effects. Now, with meticulous diabetes dieting, (and still gaining weight cuz of Metformin), I am now trying to get off of Metformin as I get rashes, have those breathing difficulties which could be exacerbated by Metformin, and Metformin causes weight gain and/or difficulty in any weight loss. I also went off of Cymbalta, and I never took the seroquel hardly ever, because the side effects on that "antipsychotic" are so strong - it was not something I was willing to risk!

I try to swim once per day (our pool is now kept warm after I bugged the association relentlessly) and I take a short walk, (which I then freeze up and can't move / walk until I get into the pool again.) Every day, and almost every hour, I am trying to push myself to get into that pool and move my legs. I use a swimming board to keep my upper half from moving. But like I've said before, when I used to use a stationary bike, with NO movement at ALL on top, at minute 6 every time my upper right body just swells with fluid, I get all red and patchy on my chest / face, etc. So it has something to do with circulation, even if I am not moving my upper body.

So Lyrica DOES say on the side effects (as does Seroquel if anyone has been prescribed that) that it can "interfere with blood sugar control." or "diabetes blood sugar control." This is the language I have seen from the company inserts I've gotten from the pharmacies. Well, I'll go one step further based upon my own actual experience, and say, I believe it CAUSED my diabetes II situation.

I can also say, which my fiance used to say and be bewildered by, I eat very, very carefully. I eat organic meats / chicken / fish, all fresh - my aides go and get me organic vegetables, which they prepare and steam. My only "cheat" was if my fiance made me homemade ice cream. We didn't (don't) ever eat like frozen stuff, or drive-thru at all - even our Thai delivery was told "no extra oil" and I just wasn't indulging in carbs (bread, white stuff) because that's how I've always eaten. We use the extra virgin olive oil, etc. I mean, I don't know how anyone could eat any more perfectly than we always did - and yet, this diabetes II came, and I really, really see it as being from the medication, despite being bedridden a lot. I know exercise is an important component, but even being bedridden, like I said, when I COULD move, I made myself try to do the bike or swim or walk with someone.

Sorry to write so much, but this Lyrica situation really bothers me as we've already got TOS, so I am mad about being a guinea pig for a new med that didn't do poop for me. I feel that some of these "new" meds are being given / used, and not being monitored by the doctors at all! How else could MONTHS have gone by with that incredibly high blood sugar being unnoticed?

If you've got work comp docs, or even just TOS docs who don't really LOOK at our blood results, be aware that we MUST get our blood work done, regularly, and READ the results ourselves - looking for anything out of line, and ASK the doc, what IS THIS? We're at risk for low thyroid, (which doesn't always go with the bloodwork by the way, it can be symptom-diagnosed only), liver disease, kidney disease, hormones being off mark, anemia, and then the blood sugar issue. Most of us are on meds. You'd think the pain mgt. doc would be ON TOP of this - well, in my case, not a bit.

Get your blood work and READ it, post here as many here have knowledge about the itemized codes.

[fern]

thank you tam and ann- i appreciate your posts.

what exact bloodwork should i ask for? the pain doc (who doesn't see people a 2nd time...i am very annoyed as he said he'd research for me the name of a physiatrist and a TOS surgeon for me...but when i have phoned his office MANY times i have not gotten any response. they give you over to a NP who "monitors" you after that initial visit. they even write the perscriptions and then initial w/the doctor's name. i think it's how they do it in this silly state as Melissa had the same experience. SO I am back to my search for a treating doctor.)

Luckily the pain doctor i found for that one-time-visit was willing to re-prescribe my Lyrica which is for "up to 6 100mg pills a day". the TOS neurologist who originally prescribed it is retired and all i can seem to find are temporary docs who will re-subscribe my meds but don't engage in intelligent discussions of what meds and what strengths are appropriate for me right now. As i said this pain dr told me that blood sugar problems are not assoc. with Lyrica but offered to allow me have the fasting test for blood sugar. This is why I would like to know what ELSE to ask for. I will try to find a treating doctor to order the tests I desire.

If my thyroid is an issue and it doesn't show up on the regular T3, T4 tests I'm not sure how to find out if I have that problem. Any suggestions?

And my initial Q? remains. Is the weight gain on Lyrica due to something in particular or can it be due to multiple factors? I do have an increased appetite so I wondered if it was due to that or something else. I think from what Tam says for her it may have been due to fluid retention?

Lyrica isn't really an anti-depressant. Are you saying Tam that it operates as one?

Tam, I'm w/U on the exercise front. I do go in a pool or walk daily and I limit my exercise to my lower body. Even so my arm can swell; it's a circulation issue--that the fluids get damned up in the BP (PeterEdgelow's description) and of course the occlusion in the subclavian vein. That's why I was told to not exercise vigorously. Warm water is great I find but I don't think it really gets my heart rate up much--however the good side of that is that I don't get much swelling w/a moderate water workout.

[marabunta]

I've had success relieving TOS pain with Lyrica...I still know it's there...just doesn't hurt...feels a bit weird.
I watched my diet closely after starting it...I did have cravings to eat more. One reason I stopped taking it because of the short term memory loss side effects. I also wasn't able to work effectively while taking this drug.
The main reason I stopped is because my wife and I wanted to start trying for a second child. It's quite overlooked, but the manufacturer clearly states Lyrica should not be taken by men trying to conceive.

marabunta

[momzpeachy]

Be careful with Lyrica! I was seeing a Dr who just handed me the meds and said "take these". I got no explanation of this medication or any discussion of the side effects. He didn't ask any questions or anything. I asked what kind of medication it was and all I got was "it's a nerve medication so it will help". Well I started taking it and I did feel a bit better. It helped with the pain but mant he side effects SUCK! I got super dizzy (and I was already having dizziness issues that hadn't been diagnosed yet). Also, with being in less pain I started doing more and that was a MISTAKE! I then needed to have surgery (laparoscopy) and needed to go off it they said). Well, once I started going off of it ...oh my the pain was BAD! I was in more pain that I was before the meds! It masks the paiin so then you do more and can injur yourself! You have to be careful! Also, ask lots of questions. The Dr's don't seem to tell you much. I had to learn about it by way of the net. Amazing. Now I have a circle of Docs who are trying to find a med that will work before I have surgery so I will have it afterwards. I can't take the lyrica even though I was told it's a good med for TOS if taken the right way. The problem with me is,..I have vertgo and innear ear nerve damage thanks to this TOS.

Just my 2 cents...hope all is well

[tshadow]

Originally Posted by fern

thank you tam and ann- i appreciate your posts.

what exact bloodwork should i ask for? the pain doc (who doesn't see people a 2nd time...i am very annoyed as he said he'd research for me the name of a physiatrist and a TOS surgeon for me...but when i have phoned his office MANY times i have not gotten any response. they give you over to a NP who "monitors" you after that initial visit. they even write the perscriptions and then initial w/the doctor's name. i think it's how they do it in this silly state as Melissa had the same experience. SO I am back to my search for a treating doctor.)

Luckily the pain doctor i found for that one-time-visit was willing to re-prescribe my Lyrica which is for "up to 6 100mg pills a day". the TOS neurologist who originally prescribed it is retired and all i can seem to find are temporary docs who will re-subscribe my meds but don't engage in intelligent discussions of what meds and what strengths are appropriate for me right now. As i said this pain dr told me that blood sugar problems are not assoc. with Lyrica but offered to allow me have the fasting test for blood sugar. This is why I would like to know what ELSE to ask for. I will try to find a treating doctor to order the tests I desire.

If my thyroid is an issue and it doesn't show up on the regular T3, T4 tests I'm not sure how to find out if I have that problem. Any suggestions?

And my initial Q? remains. Is the weight gain on Lyrica due to something in particular or can it be due to multiple factors? I do have an increased appetite so I wondered if it was due to that or something else. I think from what Tam says for her it may have been due to fluid retention?

Lyrica isn't really an anti-depressant. Are you saying Tam that it operates as one?

Tam, I'm w/U on the exercise front. I do go in a pool or walk daily and I limit my exercise to my lower body. Even so my arm can swell; it's a circulation issue--that the fluids get damned up in the BP (PeterEdgelow's description) and of course the occlusion in the subclavian vein. That's why I was told to not exercise vigorously. Warm water is great I find but I don't think it really gets my heart rate up much--however the good side of that is that I don't get much swelling w/a moderate water workout.

Ok - first, you're right, I jumped subjects and started in on the antidepressants, which are NOT Lyrica - I just was sort of free rolling there...

Next, blood tests are the usual. You don't need a fasting to show high blood sugar / diabetes. Also, normal blood tests will show elevated liver enzymes. And, the blood tests I get have computerized norms, so when something is high or low, it has an "H" or "L" next to it - that's what I suggested you post here, so that people can help you figure out what coded name the blood test is referencing. Does that make sense? If not, keep asking questions - I do NOT mind trying to help.

For thyroid, I don't know how my internist analyzes the figures, but, I do know that when I was diagnosed with Hashimoto's thyroid (low, immune system attacking thyroid also) that it was NOT off of blood test numbers, but was because my skin was extra dry, (feet, hands, lips, mouth), my metabolism seemed very slow, (no bowel movements, if I threw up my food was a day old), and tired, slow hair growth, slow fingernail growth, and more. And then what was really weird, was that I could sleep from Friday to Monday - just on & off, all the way through. I never felt like I'd slept enough. My typical was 12 hours. AND I had trouble falling asleep - but once I started on thyroid med, I fell asleep at 11 and was up by 8, like clockwork, I finally felt "normal" like the t.v. ads. I also had a low grade depression and for the life of me, I had nothing to be depressed about. Fiance used to pick me up on a motorcycle and take me to the beach cliffs to try to snap me out of it. Immediately I felt relief from that, and complete recovery, by using the thyroid med.

Now with TOS, my thyroid is screwed up again, but I had many years of being very good with the thyroid med.

I CANNOT BELIEVE that a doc wants you to get up to 600 mgs. per day!!!

The weight gain from Lyrica is quite simple - the drug makes the body gain weight. Again, I was hardly eating anything - I was living off of a few glasses of skim milk per day. But my body was clinging to every calorie and every pound. In fact, at the end, I was practically gaining two lbs. per day.

The Lyrica also causes blood sugar to rise. If you get the full literature from the pharmacy, and / or check JAMA (journal of american medical association and search for old articles) I read that at the LEAST, Lyrica "interferes with successful management of blood sugar in diabetics. Diabetics should be warned of this complication." But other articles go a step further, and say that it causes diabetes II. That is what I BELIEVE with ALL OF MY HEART, in my case.

I suffered no rebound pain or significant change in pain either ON Lyrica or going off or staying off of it. This is not to say I do not believe others - merely that we are all individuals, and these drugs can and do behave differently on each.

Ok - hope this answers all.