MSNik
11-19-2007, 08:55 PM
Triglycerides and MS- its something Ive been wondering about...
I have been studying up on Triglycerides- I have been told over and over they have nothing to do with liver function, (which was what I was addressing in the other post.) And, I have been told that they are genetic- as far as being prone to having high ones....another interesting fact, is that over 200 is considered high, yet mine are only 184, and my lab marks that as high...
Interestingly enough too, they are part of the lipid panel, which measures cholesterol, etc....and the most interesting part of all is that I dont fit any of the criteria which usually leads to higher levels of triglycerides. No fat around my waist, no high cholesterol at all- actually Im healthy as can be, if you forget I have MS ! I did call my doctor, and we did talk about this, Im not going to be able to see him until January, but he honestly doesnt think its Rebif related at all- he is more prone to thinking that having been on B/C pills for so long might be the culprit. Taking care of that issue in January, too.
I guess the only reason I felt compelled to post this is to find out what you get from it, but also to clarify, that although having blood work done regularly while on any interferon, its not always going to elevate one's liver function and also on the insert, it states very clearly that it MAY elevate your liver panel in the first 3 months, however, this usually reverses itself as the body gets accustomed to the drug.
I wanted to pass this along to you, and I do think its ok to post, as it is a WebMD link..
http://www.webmd.com/cholesterol-management/tc/high-triglycerides-overview[
From what Im reading on their site, this really isnt liver function related...do you get something different from it?
Meanwhile, PT is starting to help my neck....can I get to the GP about my fat cells in January? Things are alittle rough right now!;) Have a wonderful thanksgiving Bearygood. (and everyone else reading this!)
Hugs,
N
I have been studying up on Triglycerides- I have been told over and over they have nothing to do with liver function, (which was what I was addressing in the other post.) And, I have been told that they are genetic- as far as being prone to having high ones....another interesting fact, is that over 200 is considered high, yet mine are only 184, and my lab marks that as high...
Interestingly enough too, they are part of the lipid panel, which measures cholesterol, etc....and the most interesting part of all is that I dont fit any of the criteria which usually leads to higher levels of triglycerides. No fat around my waist, no high cholesterol at all- actually Im healthy as can be, if you forget I have MS ! I did call my doctor, and we did talk about this, Im not going to be able to see him until January, but he honestly doesnt think its Rebif related at all- he is more prone to thinking that having been on B/C pills for so long might be the culprit. Taking care of that issue in January, too.
I guess the only reason I felt compelled to post this is to find out what you get from it, but also to clarify, that although having blood work done regularly while on any interferon, its not always going to elevate one's liver function and also on the insert, it states very clearly that it MAY elevate your liver panel in the first 3 months, however, this usually reverses itself as the body gets accustomed to the drug.
I wanted to pass this along to you, and I do think its ok to post, as it is a WebMD link..
http://www.webmd.com/cholesterol-management/tc/high-triglycerides-overview[
From what Im reading on their site, this really isnt liver function related...do you get something different from it?
Meanwhile, PT is starting to help my neck....can I get to the GP about my fat cells in January? Things are alittle rough right now!;) Have a wonderful thanksgiving Bearygood. (and everyone else reading this!)
Hugs,
N
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Bearygood
11-19-2007, 09:23 PM
Gee, I'm sure not an expert, Nikki, but I do know the liver is involved in fat metabolism so that's why I thought (and thought that YOU thought) that it's possible that Rebif might be responsible. I'll take a look at the link and see if I can find out anything else on the subject.
As far as ranges go with anything though, what is "normal" might not be normal for everyone in question. In other words, if there is a big difference between what someone's level is usually and then it shoots up (or down) there's something going on. So, I think one thing you should definitely do is compare it to your earlier tests and see if there's a big variance or there's been an upward trend since starting the drug. If it's just off a few points from where it was before, chances are that it might just have been a fluke. Make sense? (And sure, it's possible that if there IS a culprit, it might be something other than the Rebif -- although I don't think it's the fish oil. ;))
As far as ranges go with anything though, what is "normal" might not be normal for everyone in question. In other words, if there is a big difference between what someone's level is usually and then it shoots up (or down) there's something going on. So, I think one thing you should definitely do is compare it to your earlier tests and see if there's a big variance or there's been an upward trend since starting the drug. If it's just off a few points from where it was before, chances are that it might just have been a fluke. Make sense? (And sure, it's possible that if there IS a culprit, it might be something other than the Rebif -- although I don't think it's the fish oil. ;))
Bearygood
11-19-2007, 09:44 PM
Couldn't find a thing except as you said, possible elevation to to BC pills. You know what though, wouldn't hurt to put in a call to Lifelines, just to see if there have been any reports. Even though it's not listed as a side effect in their info., they might be able to give you some more insight.
Let's hope it was just a fluke -- it's possible!
Let's hope it was just a fluke -- it's possible!
MSNik
11-19-2007, 10:07 PM
Hey girlfriend. Thanks for your thoughts. I do appreciate it. I have spoken to the Rebif nurses, my MS specialist and everyone else involved, there isnt any apparent link between elevated Tri's and Rebif, but anything is possible. Like MS, Rebif can affect people differently.
As for the trend you pointed out, thats where all this started, and you are correct, I did think it was due to Rebif...my tests came back from 148 (normal according to WebMd reports) to 155 to 179 then 184 over the course of a year...big jumps- no, which is why my Neuro isnt freaking out...but noticable enough ( I pay attention to these things) that I was concerned...
So, now we look into b/c? Possible...also genetics...I did turn 40 last year, its possible that this is just something that as I age, my body is experiencing. I also did switch b/c pills about a year and a half ago- onto a lower dose estrogen, and a continuous cycle pill...my gyn says not to worry until Im off of the pill for 6 months and if it continues climbing, we do more tests then...my GP says "who knows?" and my Neuro says its not high enough to be concerned...meanwhile, Im juggling way too much (wonder if stress affects it?) and until January, everything besides general MS care is put on hold...Im scheduling my relapse for February! (wouldnt it be nice to be able to schedule those things?)
I dont know...its all too overwhelming...the good news is I feel great overall..
Hope you are having a feel good week too...and seriously- thanks for getting back to me on this, I value your opinion.
Hugs,
Nikki
As for the trend you pointed out, thats where all this started, and you are correct, I did think it was due to Rebif...my tests came back from 148 (normal according to WebMd reports) to 155 to 179 then 184 over the course of a year...big jumps- no, which is why my Neuro isnt freaking out...but noticable enough ( I pay attention to these things) that I was concerned...
So, now we look into b/c? Possible...also genetics...I did turn 40 last year, its possible that this is just something that as I age, my body is experiencing. I also did switch b/c pills about a year and a half ago- onto a lower dose estrogen, and a continuous cycle pill...my gyn says not to worry until Im off of the pill for 6 months and if it continues climbing, we do more tests then...my GP says "who knows?" and my Neuro says its not high enough to be concerned...meanwhile, Im juggling way too much (wonder if stress affects it?) and until January, everything besides general MS care is put on hold...Im scheduling my relapse for February! (wouldnt it be nice to be able to schedule those things?)
I dont know...its all too overwhelming...the good news is I feel great overall..
Hope you are having a feel good week too...and seriously- thanks for getting back to me on this, I value your opinion.
Hugs,
Nikki
Bearygood
11-19-2007, 10:32 PM
Interesting. Because of the climb over the course of the year, to me that's actually more reason to think that a drug might be the culprit. (I don't think it's because you turned 40. ;)) Just keep an eye on it and see what happens when you go off the pill and in the meantime, I've asked some other people on Rebif and will let you know what they say.
MSNik
11-20-2007, 08:36 AM
Hey Beary, thank you for inquiring of the others...I would like to know. Ive put out a shout before on this subject, but no one seems to keep their bloodwork. I get everything sent to my house!
Meantime, yoiur logic on this, is exactly what mine was...which is where all this started; however Im just being told over and over that a. Tri's arent life threatening unless they are in conjunction with high cholesterol (nope) and b.that being the case, and them not being THRU the ROOF, not to worry.
As you know, there are other things to worry about right now, like surviving this weekend!
I did increase all my supplements, beyond the change in the b/c pills...I am now taking lots of Omegas (fish oil, evening primrose and Flax seed), as well as all the others we have talked about. I do have to wonder if those oils have done something to throw my system offf; however everything points towards Omegas LOWERING the fats in your system! THey even suggest taking them for this reason.
I have to go off all of them in the beginning of December for a few weeks, surgery scheduled on Jan 10th, doc said no oils for at least 3-4 weeks...this should be interesting, huh? I wonder how Ill feel.
ANyway, off to work. Hugs to you. and yes, please let me know what people you know have said about this!
Nikki
Meantime, yoiur logic on this, is exactly what mine was...which is where all this started; however Im just being told over and over that a. Tri's arent life threatening unless they are in conjunction with high cholesterol (nope) and b.that being the case, and them not being THRU the ROOF, not to worry.
As you know, there are other things to worry about right now, like surviving this weekend!
I did increase all my supplements, beyond the change in the b/c pills...I am now taking lots of Omegas (fish oil, evening primrose and Flax seed), as well as all the others we have talked about. I do have to wonder if those oils have done something to throw my system offf; however everything points towards Omegas LOWERING the fats in your system! THey even suggest taking them for this reason.
I have to go off all of them in the beginning of December for a few weeks, surgery scheduled on Jan 10th, doc said no oils for at least 3-4 weeks...this should be interesting, huh? I wonder how Ill feel.
ANyway, off to work. Hugs to you. and yes, please let me know what people you know have said about this!
Nikki
Bearygood
11-20-2007, 08:53 AM
Nothing yet and because of what we've both read, at least at this point I'm inclined to think it might well be your change in BC pills. As far as high triglycerides without high LDL, I'm not certain that it's still okay -- (I read something somewhere) but I'm sure not an expert in this! But regardless, you won't be on the pill much longer so it will be interesting to see if they go own after you stop.
Re: the blood thinning aspect, I agree it's wise to go off those supplements before surgery. I know that Omega 3s are good to improve LDL/HDL numbers but I actually THINK I saw something on fish oil that said it's not really effective on triglyercides. Sorry I can't recall accurately -- I was up way too late last night and up way too early this morning so I'm a bit fuzzy! :confused:
Re: the blood thinning aspect, I agree it's wise to go off those supplements before surgery. I know that Omega 3s are good to improve LDL/HDL numbers but I actually THINK I saw something on fish oil that said it's not really effective on triglyercides. Sorry I can't recall accurately -- I was up way too late last night and up way too early this morning so I'm a bit fuzzy! :confused:
MSNik
11-20-2007, 09:05 AM
Hope whatever kept you up, was worth it! :D
Im not sure either whats what with the fish oils and tri's...but im also not going to stress over it for now. I feel fine, my most important blood tests are coming back normal- my cholesterol,liver, and white/red counts are normal. I think Ill live for another year!
I have repeat everythings in March...MRIs, physicals, blood work before then (feb, I think), along with MS specialist visit and Neuro visits...then, honestly, I think Im going on a vacation! Its been one heck of a year, and out last jaunt was in March- so why not? How bout you, planning any getaways this winter? This is starting out to be a miserable winter for us, huh? Snow before Thanksgiving does not make me happy! We only got a dusting, but its miserably cold and wet this week...I know youre getting much of the same.
Thanks again for all this talk on the subject. I really do value what you think and have to say....
have a good day.
N
Im not sure either whats what with the fish oils and tri's...but im also not going to stress over it for now. I feel fine, my most important blood tests are coming back normal- my cholesterol,liver, and white/red counts are normal. I think Ill live for another year!
I have repeat everythings in March...MRIs, physicals, blood work before then (feb, I think), along with MS specialist visit and Neuro visits...then, honestly, I think Im going on a vacation! Its been one heck of a year, and out last jaunt was in March- so why not? How bout you, planning any getaways this winter? This is starting out to be a miserable winter for us, huh? Snow before Thanksgiving does not make me happy! We only got a dusting, but its miserably cold and wet this week...I know youre getting much of the same.
Thanks again for all this talk on the subject. I really do value what you think and have to say....
have a good day.
N
taosdaphne
11-20-2007, 03:21 PM
I was just taken off Rebif because my liver enzymes had zoomed way high. They consider the danger zone 5x the normal limit, and I was there and beyond. Rest of bloodwork was AOK. Going to see my neuro (I hope) in December and see if we want to try a lower dose of Rebif or maybe Tysabri. The only trouble w. Mayo is that is a 2 day drive and scheduling can be difficult. I'll work on that today.
There was also an article in the NY Times this week--corroborated by the Avonex website--that Avonex is also highly toxic to the liver and has caused a couple of deaths. Won't be going on that either!
There was also an article in the NY Times this week--corroborated by the Avonex website--that Avonex is also highly toxic to the liver and has caused a couple of deaths. Won't be going on that either!
Bearygood
11-20-2007, 03:59 PM
Daphne, this is driving me nuts! I searched the NYT again just now and didn't find a thing! The last article they seem to have about this was from 2005 -- at least that's all I'm finding.
I'm aware of the liver concern with all the CRABs (including Avonex) but I'm confused because I can't find the new article you're talking about! Can you supply the exact date?
I'm aware of the liver concern with all the CRABs (including Avonex) but I'm confused because I can't find the new article you're talking about! Can you supply the exact date?
MSNik
11-20-2007, 05:10 PM
Daphne, I spent all last night looking for this article, too. And I cant find it.
You dont seem to be aware that Rebif and Avonex are exactly the same drug, just administered differently. Rebif is actually the stronger of the two.
If you can tell us where this report is, Id love to see it. I actually called my Neuro today and he said that nothing has been published that he is aware of.. I called avonex's hotline as well and they denied any new information and simply reinstated that with any Interferon, having liver enzymes checked regularly is important, they also told me that usually when they are elevated, they come back to normal within 3 months, when the body adjusts to the medicine. The Rebif people told me the same thing when I started rebif. I havent had a single liver related issue to date....
FYI, I verified today from two people that triglycerides are NOT CONSIDERED LIver function! This from my Neuro, as well as the Avonex nurse!
Hugs, please send more info if you can..
Nikki
You dont seem to be aware that Rebif and Avonex are exactly the same drug, just administered differently. Rebif is actually the stronger of the two.
If you can tell us where this report is, Id love to see it. I actually called my Neuro today and he said that nothing has been published that he is aware of.. I called avonex's hotline as well and they denied any new information and simply reinstated that with any Interferon, having liver enzymes checked regularly is important, they also told me that usually when they are elevated, they come back to normal within 3 months, when the body adjusts to the medicine. The Rebif people told me the same thing when I started rebif. I havent had a single liver related issue to date....
FYI, I verified today from two people that triglycerides are NOT CONSIDERED LIver function! This from my Neuro, as well as the Avonex nurse!
Hugs, please send more info if you can..
Nikki
tuckersmom
11-20-2007, 05:35 PM
Nikki... you know research is right up my alley so I went looking as well... found one other MS **** type website where there was something posted saying Biogen and FDA sent a "dear dr." letter on Nov. 5, 2007 about the effects of Avonex on the liver and how bad it is. On the Avonex.com website it states "some have developed severe liver injury". What all that means is speculative to me. Not sure if the website has always said that.
I have looked high and low and haven't found an article in NYT other than the one you have already talked about.
Lisa:)
I have looked high and low and haven't found an article in NYT other than the one you have already talked about.
Lisa:)
MSNik
11-20-2007, 07:04 PM
Love ya Lisa! Thank you. I saw what you saw on the Avonex website, and YES it has always been there....kind of coincidental that the same warning is also on Motrin, Aspirin and Tylenol! You know that if any side effect has EVER happened, it has to be listed. This is nothing new with Interferons...
As for the other post you read, read that too. I appreciate that you went to all this trouble. Having called Avonex today as well as my doctors- theres still nothing really new to report..nothing has changed as far as the warnings go. But you are the very best for taking this to another level and checking it out! Honestly, Ive serached the NYT high and low....nothing that I can see comes up in the past year about liver enzymes.
Big hugs..
Nikki
As for the other post you read, read that too. I appreciate that you went to all this trouble. Having called Avonex today as well as my doctors- theres still nothing really new to report..nothing has changed as far as the warnings go. But you are the very best for taking this to another level and checking it out! Honestly, Ive serached the NYT high and low....nothing that I can see comes up in the past year about liver enzymes.
Big hugs..
Nikki
MSNik
11-20-2007, 07:22 PM
Hey everyone. I just went onto the Lexxus legal computer and found the article. Its dated March 17, 2005 and its less than a paragraph long, basically stating exactly what is stated on the website about the warning that liver enzymes will be elevated....it also talks about Tysabri being pulled from the market from Glaxo....this is really old information. Please disregard if any of you were scared into thinking this was something new and relevant. Its not relevant beyond what your doctors have already told you. Continue to have blood work done regularly and watch for any increases in levels and talk to your physicians if you have any other concerns!
The good news is that even more recently, Avonex and Biogen released a study talking about how after 2 years on Avonex, relapses and progression were conclusively lower for patients with MS as compared to patients who were not taking MS Therapy drugs...hope this applies to Rebif, too!
wishing you all a happy holiday.
Nikki
The good news is that even more recently, Avonex and Biogen released a study talking about how after 2 years on Avonex, relapses and progression were conclusively lower for patients with MS as compared to patients who were not taking MS Therapy drugs...hope this applies to Rebif, too!
wishing you all a happy holiday.
Nikki
Bearygood
12-09-2007, 02:00 PM
Nikki, someone answered this question, saying that they thought it was not out of the question because of the liver's role in fat metabolization. They are NOT a doctor though -- I explained that you think it's the BC pills now.
I know you don't want to pop another pill but they suggested lecithin. This does make sense for this -- it's one of the things I used when I was trying to avoid surgery for my gallbladder (still have it and have been attack free for almost 10 years, YAY! :))
Anyway, please keep us posted when you're retested.
I know you don't want to pop another pill but they suggested lecithin. This does make sense for this -- it's one of the things I used when I was trying to avoid surgery for my gallbladder (still have it and have been attack free for almost 10 years, YAY! :))
Anyway, please keep us posted when you're retested.
MSNik
12-09-2007, 02:32 PM
Hi Bearygood. Lecithin, huh? Thanks for thinking of me and posting this. Ill have to do some research on Lecithin today- I know very little about it, but as always, your info is appreciated!!
Hope you are having a good day.
Nikki
Hope you are having a good day.
Nikki
Bearygood
12-09-2007, 03:18 PM
Good you're researching it but I do want to add that the most important thing is to get to the ROOT of the problem, whether or not lecithin can be some sort of "fix". (I'm sure you agree. ;))
Good luck!
Good luck!
MSNik
12-09-2007, 04:00 PM
You are so right! I have surgery scheduled for Jan 10th, Im having pre-op tests done in late December...that will include blood tests. Ill talk to my doc then, AGAIN about thoughts on this. I also need to do a complete fast and have my cholesterol counts done again in Feb..by then, Ill have been off the pill for almost a month....it should all come together by then.
I did research Lecithin alittle, and did see where it might be a very good thing to reduce tri levels; however I think what I read points towards this being an Omega, and Ive been told no Omegas or oils for one month prior to the surgery...so, that probably means that I shouldnt start adding this at this time. Omegas and oils, thin the blood and they want me off them from this Monday till Jan 10th when surgery is to happen...does that make sense that I should wait?
Im also trying to exercise more...>I had gotten kind of lazy with that for 2 months. Ive started back on trying to do more each day...might help alittle, but I dont know for sure...I do need to get to the route of the problem, for sure!
Thanks Beary..
nikki
I did research Lecithin alittle, and did see where it might be a very good thing to reduce tri levels; however I think what I read points towards this being an Omega, and Ive been told no Omegas or oils for one month prior to the surgery...so, that probably means that I shouldnt start adding this at this time. Omegas and oils, thin the blood and they want me off them from this Monday till Jan 10th when surgery is to happen...does that make sense that I should wait?
Im also trying to exercise more...>I had gotten kind of lazy with that for 2 months. Ive started back on trying to do more each day...might help alittle, but I dont know for sure...I do need to get to the route of the problem, for sure!
Thanks Beary..
nikki
Bearygood
12-09-2007, 09:30 PM
I didn't research it in regard to high triglycerides but it doesn't appear to be Omega like to me but I do agree that it would be good to go "au natural" for now! IF it does anything for you, it might mask what's really going on. Let's see what the next results bring -- hopefully it was just a fluke. :)
MSNik
12-09-2007, 09:49 PM
Thanks Pal...will keep you posted after the tests.
Im scared, bearygood. Really scared. The thought of going off the pill after 20 years on it, and what it might do to my MS symtoms has me terrified...surgery alone is scary, and Im panicking over that, but even more so worried about the MS effects of no more hormones! Ive weighed this thru, I think- and its the right thing to do, but its still freaking me out...Between getting off all my supplements and going thru with this surgery, I am not myself these days...and to think, I have a month to go! I see my doc the end of December, hopfully he can reassure me that this is the right thing to do....
hugs and thanks for caring.
Nikki
Im scared, bearygood. Really scared. The thought of going off the pill after 20 years on it, and what it might do to my MS symtoms has me terrified...surgery alone is scary, and Im panicking over that, but even more so worried about the MS effects of no more hormones! Ive weighed this thru, I think- and its the right thing to do, but its still freaking me out...Between getting off all my supplements and going thru with this surgery, I am not myself these days...and to think, I have a month to go! I see my doc the end of December, hopfully he can reassure me that this is the right thing to do....
hugs and thanks for caring.
Nikki