Symlin 8: Mar/Apr 2006
Bill the diabetesdoc
wwq@diabetesmonitor.com
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Bill and Steph Quick
Debby,
The 50% reduction in insulin you mentioned varies by individual and also by how you titrate (increase) your Symlin dosage. I found it better to let my bs run a little high (rather than risk lows) while I was getting used to Symlin.
The directions say "30 grams or 250 calories". It seems logical that, if you are eating at least 750 calories a day, you can use Symlin 3 times a day, which would be in the normal use range. You may wish to call Amylin in CA @ (800) 349-8919 and discuss it with them.
The Babe
PS - I have called the Symlin hotline several times during the last 8 months. The company will connect you with someone with REAL expertise relating to your questions.
(Comment this)
Maggie,
The full feeling is normal. It is also what helps people to lose weight when on Symlin. Over time I found that feeling faded into the background.
I don't have a good answer relative to alcohol. I have a beer or margarita maybe 2 - 5 times a month with no problem whatsoever.
Nausea is a common side effect when starting Symlin. It varies widely. In my case, it lasted about 4 days for about a minute each day and was just an inconvenience. I also had some loose stool off & on for a few weeks. Some people have no nausea, others find it to be more of a problem.
It appears that you do not have much info on Symlin. I suggest that you read the label in the Symlin box and try www.Symlin.com. You may also wish to read the previous months on this blog - you will find many questions and answers.
Symlin is not an easy drug to start using - there is a big learning curve. The more research you do, the easier it will be. For most people the results are well worth the time spent. Occasionally someone just can't use it, which is true of any drug.
Welcome aboard!
The Babe
(Comment this)
I am type 1, on the pump for 6 years and on symlin for 4 months. I used to have the same problem you mentioned with exercising, having to eat carbs, and spikes later. I run 3-8 miles or bike 30-40 miles regularly. I found I have not really had to changed anything to workout since being on symlin. I wait at least an hour after eating so I won't get nautious. I would get so frustrated working out so hard and then eating to keep my blood sugar up. Finally, I found something that works great for me. After 30 min of intense exercise before I start to drop I eat a GU or Power bar gel. It has a great mixture of carbs/sugar and my body absorbes it quickly. I do not have the spikes later, and I don't have to eat nearly the calories for a much more efficient work out! I eat one (90-110 calories) every 30 min. This save me eating around 500 calories. During an intense workout. By the way, I have tried everything to loose a few puonds and nothing worked until I got on Symlin. I don't have that intense full feeling like I used to, but I don't feel like I am starving all the time either. I have lost around 15 lbs and don't really want to loose any more. I did increase my units up to 15 to help with better bs and weight loss. (Comment this)
To reinforce what The Babe said, I drink wine with dinner about three times a week and have for many years. I have not noticed a difference with or without Symlin. It's important to remember, however, that even without Symlin alcohol makes a hypo more likely, and more difficult to recover from.
JohnK (Comment this)
Have many people commented on headaches? As I said before I am only using it with dinner at this point and each morning I have awakened with a headache. Wine in the evening and coffee in the morning are not very appealing right now. Is it common to feel hours of nausea of to have waves of it throughout the day? My stomach feels "ify" all of the time. (Comment this)
Maggie,
Be sure you are making the distinction between feeling full and nausea. Some people think they are the same.
The Babe (Comment this)
I had intense headaches during the titration period. They finally eased up after I was on the full dose. However, I still occasionally get them, especially right before meals, eating usually eases it up.
I had no nausea for the first 3 months. Now it is intermittent with no discernible pattern. BS's are better so I live with it.
Debby,
Pump users vary, most of us check the BS, bolus for highs, take symlin, eat, then square wave (1-2 hours) for the carbs that we ate when we are finished eating. (Comment this)
Also, it doesn't seem to want to *draw* well into the syringe. It is probably me, but I have never had any trouble with Lantus. The Symlin leaves a *space* where there is no insulin sometimes. I am being very careful, thumping the syringe, but I don't dare take it out to do that, and have to reinsert. OUCH! I am using a 31g needle.
I have had some nausea, but nothing I can't handle. I am only on 5u each meal for 3 days, then will be on 10u each meal for 3 days, then to the full 20u per meal dose on the seventh day. My BG's are up some. I have not cut my Novolog dose in half as my endo suggested because I knew they would be higher until I reach the full dose of Symlin.
I am pleased so far that the nausea is not too bad. I hope it does not get worse as I increase the dose. And, so far, I have had no headaches. I do, sometimes, feel my heart beat in the back of my head, but that could be something else, like hormones. (Comment this)
Headaches on arising in the morning can be the result of a nightime hypo while sleeping. If I get recurring morning headaches, I set my alarm for 3:00am to catch the lows.
JohnK (Comment this)
My son is 23, diagnosed with thryoid & Addisons 5 yr ago, T1 diabetes 3 yrs ago.
He has been using a pump for past 18 months, takes dexamethasone, tricor, niaspan, levoxothyrine(sp?), and *lots* of novalog.
His bs, a1c, ldl, triglicerides are way out of control, so the endo is suggesting he try Symlin.
The combination of diseases and meds is a touchy situation.
Anyone have a clue if there is anything "unusual" he may expect or need to anticipate with adding Symlin into that mix?
Thanks - All help is greatly appreciated!
(Comment this)
This is my first post on this part of the blog.
I have been reading & posting on the Byetta blog since October.
My endo put me on Byetta at the end of OCt. 2005. I did find on it until Jan. 2006. From then until until Narch 3 I had severe nausea & vomitting. So severe that it depleted my body of all vitamin D & I became dehydrated. Even with the severe nausea & vomitting I continued to take Byetta because my numbers were fantastic. My endo said no more Byetta for me. He said it was rare but some do fine with it for a couple of months then have a reaction to it the way I did.
Now I am back on Lantus & glucophage & use Novalog in case it is needed.
After someone on the Byetta blog suggested I look into Symlin, I have called & asked my endo about my trying this. He said he would look into it. I do not see him again until June.
I am type 2 but endo says I am more of a type 1.5 since I have properties of both 1 & 2.
I loss 20# on Byetta. Since coming off Byetta & back on insulins I have put on 8# in 2 weeks.
I do not want to gain more weight. I want to lose weight so I do not have to have gastric bypass done.
So what are the main side effects of Symlin? Does it have the same nausea & vomitting side effects like Byetta?
Is there a possibility that Symlin will help me?
Is there hope out there?
Sorry if this post is not proper. If there is another place I should be posting please let me know.
Any & all info would be greatly appreciated.
I am headed now to the Symlin web site to read what ot has to say.
Thanks,
Paula
(Comment this)
Paula,
Symlin has a completely different action than Byetta. Although nausea is experienced by some people during the starting period, there is no reason to think you will have nausea with Symlin because you did with Byetta.
If I were in your situation I would definitely try Symlin. Just keep in mind that it is not an easy drug to use - the learning curve is pretty steep.
Since you are very concerned with weight, I suggest you see your endo immediately about getting on Symlin.
The Babe
(Comment this)
Nancy,
Once a person is taking several meds, it is impossible to predict if there will be a drug-drug interaction with a new drug. I am currently on about 14 meds. Each time one is added, I try it ... very, very carefully!!.
If he starts on Symlin, don't be surprised if he has some nausea for a few days. And don't confuse the nausea with the " feeling of fullness" which is normal for Symlin.
Adjusting the insulin during the learning curve on Symlin is not easy - when I did it I let my sugars run a bit high rather than take a chance on a serious low.
The Babe
(Comment this)
TO ALL
I have mentioned the importance of keeping a good logbook during your Symlin startup. I kept mine for two months starting 27 June 05. I lost weight really fast on a "low-carb" diet for 29 days. I then talked to a nutritionist and switched to a "perfectly balanced" diet. The weight loss stopped, then rebounded, with a net loss of 20 pounds.
In early March I asked myself the question: "balanced diet -or- get rid of the other 50 pounds?" I am now in Day 5 of my second round of weight loss by using a "low-carb" diet.
To re-start I went to my log book and set up the new program based on the one week period where I had the best bs and weight loss results. Within the first four hours on Day 1 *everything* fell back into place - I am making only minor daily adjustments to the program. Here are the numbers from my current logbook:
Carbs = 130/day, calories = 1200/day, Lantus = 45/day, Humalog = about 35/day, Symlin 20/meal. During the five days I have had four minor low bs, which I have handled with glucose tabs. My weight is dropping quickly and I have not been hungry at all.
ADA says the the minimum carbs per day is 130. I am able to do that without eating any bread/starch/pasta by carefully counting the carbs in my fruits, veggies, etc.
As Martha would say "Logbooks are a good thing!".
The Babe
(Comment this)
Thanks for your insight.
I tired calling my endo to see if I could get in to see him. I was told he is booked up solid & I would have to wait until my June appointment. :(
I was hoping to have heard back from him about Symlin. He called to give me my thyroid results & to let me know whether to change the amount of Synthroid I was taking. That is when I ask him about Symlin & he said he would check into it for me.
Since I haven't heard back I guess he is waiting until I go back in June.
Wish there was another endo close by me but there is not. I drive 51 miles to see him. I like him but he is one hard person to get in to see.
As far as nausea goes I can handle mild nausea. I just can't handle to the debilitating nausra I had with Byetta. From what I have read it does appear people are not having that kind of nausea on Symlin.
I want a way to better control my numbers & be able to lose weight.
Paula
(Comment this)
I understand Symlin needs to be kept refrigerated. I travel 60%+ of the time and there is now way I could be assured I would have refrigeration facilities available to store Symlin while I'm on the road.
Does the usage pattern for Symlin need to be consistent? Could I take Symlin while I am at home and not take it when I'm on the road?
Tom (Comment this)
Tom,
While on Symlin, I travelled a majority of the time for 3 months last fall. I had no problems with Symlin, but I gained weight and my bs was generally higher when eating in restaurants and visiting family. General diabetic control is just more difficult on the road.
At home I keep Symlin in the fridge until I open a vial, then it is not refrigerated until it is empty (about 6 days for me). There are travel packs you can buy that will keep vials cool when travelling. (Obviously I didn't leave Symlin on the dashboard, etc).
Under no circumstance would I attempt to start Symlin when travelling ... there are just too many factors involved for that to be successful. If you are hypo unaware, your biggest problem will be insulin dosing, not Symlin. I would not travel until you have that pretty well sorted out (According to my log it took me about 10 days).
I take a bunch of meds, and I don't know of any of them you can go on/off at will.
The Babe
PS - "As we speak" I am sitting here at 4 in the morning dealing with low bs. I cannot maintain good control on a continuing basis without occasional low bs, but Symlin does "flatten out" the curve somewhat. I have used 20 units of Symlin (I am T2) with *every* meal for about 8 months and my Lantus (long insulin)dose is also "fixed". But my Humalog (fast insulin) varies quite a bit ... therein lies the problem.
(Comment this)
I don't think it is the Symlin keeping it down, but am not sure. And, I may spike tonight from the injection. I would think if I had it at 9am this morning, it would have already affected me,(3:45pm) if it was going to. Kenalog may not be as strong a steroid as decadron, therefore not raising my BG (blood glucose). Does anyone here know?
The nausea has been a little worse today, and I have not felt as well, but that could also be the steroid injection.
I am still having trouble getting needles into the bottles and then into my skin. It is very rigid. I am using a new syringe each injection.
I have not reduced my insulin dose much because I am not on the full dose yet. I am hoping to reduce it as much or more than I did on Byetta.
I am T-2, very insulin resistant. (Comment this)
Sandra,
I have not heard Kenalog or Decadron mentioned on this blog.
The rubber on top of the Symlin vial is thick. I heard that was going to change, but I have not noticed it.
I use one syringe to injection Symlin, then Humalog - I then trash it. Some of the newer needle gauges are so small (to reduce discomfort) that they bend easily. Also, the tip gets damaged, creating discomfort on additional uses.
Last week I switched back to the bigger, longer needles to see if I can reduce bruising.
The Babe
(Comment this)
I, too, have changed my syringe..... from a 31g x 5/16 needle to a 28g x 1/2. It has helped some, but not much.
It is odd to me the rubber is so thick and rigid. Hopefully, you are correct in that they will change it.
I am on day 5, and the nausea is present, but still not to an extent it is unbearable. I am looking forward to ending my titration and being on 20u per meal. I am hoping to lower my Novolog dose in half. I have already lowered my Lantus dose by 12u when I was on Byetta and did not increase it when I began the Symlin.
I like your *name*. My dad and mom have called me babe since I was a kid. And, that has been a long, long time!
Sandra (Comment this)
Sherry,
You should have at least 250 calories or 30 grams of carbs each time you inject Symlin.
Symlin typically gives a person a "feeling of fullness" anywhere from 10 minutes to 45 minutes after injecting.
That feeling seems to come on strong during the first few weeks, then it becomes more of a background thing - but still there.
Theoretically your bs maxes about 90 minutes after you eat. Testing then and also just before you eat are good starting points.
Symlin is not an easy drug to start - you will need to work at it, especially when determining fast insulin dosing. You may encounter some nausea - but that is not caused the same way as the nausea you had with Byetta. The two drugs act in different modes.
The Babe
(Comment this)
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(Comment this)
When injecting insulin I used to use a needle 3 or 4 times before throwing it away, now with Symlin I use it only once. (Comment this)
Thanks for the response on the correcting glucose, then Symlyn, eat and bolus. I started it today at the 2.5 units and did not correct my glucose, only took 1/2 of my glucose correction and carbs...needless to say, did not do well.
Are people noticing a difference at the 2.5 units? I already have the bruising and I have only taken 2 injections.
Debby
(Comment this)
I'm going to call Amylin today and listen to anything they say, and certainly talk with my CDE. I don't have an endo, and cannot reasonably see one where I live (there is 1 endo between Salt lake City, UT and Denver, CO). My doc isn't real diabetes knowledgable, but my CDE is awesome. And this board really has the most up to date experience anywhere, IMHO. Let me know what you think!
Joe (Comment this)
I started it 2 months ago, since then I have had spotting (not normal) pheumonia (despite vac)the next week after getting better from that I got the flu (despite vac) then after that I caught a tummy virus from a co-workers kid all of this in a 4 week time. Did anyone find that it comprimised your immune system more than normal? AND After 2 months I am still sick! It lasts about 2-3 hours, i cant do anything! Usually when I take it in the morning I am not hungry until later in the night and then I dont usually eat, so am I not taking it frequently enough? What about using it when I dont eat to correct a high? (Comment this)
I am calling it nausea when the smell of anything or thought of a certain food makes me want to vomit. It is the acid that continues to rise into the back of my throat. Fullness is the ache in my stomach all the way through my back.
I have been sleeping better. Formerly, I was getting up 3-4 times per night to use the restroom. Now I sleep through. I am awaking with more energy overall even though I have the crud from the kids! I am looking forward to reporting to my endo. (Comment this)
Does the BG control get better the longer you are on Symlin? I have just titrated to 20u per day. I do hope it will get better.
I am not having much nausea, nor am I having a really full feeling. It figures for me.
Thanks. (Comment this)
I am on Lovastatin for high cholesterol and my thyroid doesn't work so I am on Synthroid. I have no problems with the Symlin and these meds. Hope this helps.
Alicia (Comment this)
Alicia (Comment this)
Sandra,
An interesting comparison of Symlin and Byetta. I read everything I can find about Symlin and I also read a fair amount of info about Byetta - I have never heard this mentioned before.
For me the bs control got better, over time, when I went on a full dose of Symlin ... but it was mainly because I got better at "handling" my short acting insulin.
The Babe
(Comment this)
Alicia,
There is an engineering calculation called the L/r ratio that applies to building columns as well as needles. Basically the longer the needle, the thicker it must be. Sorry 'bout that.
The Babe (Comment this)
Grandma Jean,
Symlin is the synthetic version of amylin. Amylin was discovered in 1986. It is a hormone produced in the same human cells as insulin. Amylin and insulin work as a "team".
In diabetics, there is a shortage of both insulin and amylin.
Symlin came to market a year ago. It is currently FDA approved for use in improving blood glucose control in diabetics, with the side effect of helping them lose weight. There are more applications being discovered for symlin such as osteoporosis and Alzheimer's, but it will be years before the related clinical trials are complete.
Try www.Symlin.com for more info.
The Babe
(Comment this)
Thanks for the information. This is my second day on the full dose of Symlin. I am taking it 3 times per day with a meal. Didn't I read where you take it 4 times per day? That could be the difference.
I am eating some of the same meals I did while on Byetta and am having to use more short acting insulin to cover the carbs. Fat also causes a rise in my BG, but usually the next day.
I am still hoping the Symlin will do its' work. I am having trouble with this rigid, thick rubber. Wow, it is hard to get the syringe in and then hard to get it into me! I changed from a 31 x 51/6" to a 29 x 1/2" syringe.
I talked to the Symlin folks and they say they are *working on the issue*. I asked them to get us a pen. That would be even better. They are not planning to do this, according to the lady I spoke to. But, she did say she would send my request to the *powers that be*. (Comment this)
Misc Notes:
The 28 ga needle is actually thicker (bigger diameter) than the 31 ga needle. Ga (gauge) gets bigger as you reduce the number.
Go figure!
The 29 ga needle, which is longer, causes me less bruising.
Amylin announced several months ago that they will make a pen available for Symlin. Some of the people in the clinical trials actually used a pen. Sounds like you got a person on the phone that should not have been.
Sandra, you have a good memory! I actually used Symlin 4 times a day as well as 5 times a day for extended periods of time. I am now at three times a day.
The Babe
(Comment this)
I am also going to try the thermos with the plastic ice cubes when I take a 3 week trip out of the country. (Comment this)
Does anyone feel different "mentally", like you are experiencing a low BS level, but you are not anywhere near that range? This bothers me more than any other side effect. Please respond if you have read something about this on a prior blog. (If it wasn't for this site, I would be lost!)
Thanks, Debby (Comment this)
Debby,
I have never read of anyone feeling that way "mentally". I would call the Symlin hotline.
The Babe (Comment this)
LoraLee,
Welcome to our little club :>)
I found that, after a few weeks on Symlin, my energy level improved. And then, a few weeks after that, a "feeling of well being" kicked in that has continued since late summer of 2005. Hopefully this will all happen to you in due time.
I do not recall reading anywhere about eye problems that might be related to Symlin; however, every couple of days I get a burning irritation in my eyes that seems to be related to fast blood sugar changes. My wife use eyedrops on a regular basis. A couple of drops in each eye and the problem goes away. Please post again after you have worked on this eye problem for a bit.
It feels good to have an RN on board. I hope that, when I screwup, you will take me out behind the woodshed!!
The Babe
(Comment this)
How long until a dose is typically changed? Does it all depend on symptoms or is it a combination of side effects and bg control? (Comment this)