Symlin 4: Nov/Dec05
This is the 20th in a series of discussion forums at Diabetes.Blog.Com, and is the mid-November/mid-December forum for discussions about Symlin. This Symlin forum was activated to allow comments on November 14, and deactivated December 15 to prevent more posts to this forum. However, you can still read the earlier comments, and search for information throughout any forum, by using your webbrowser's FIND or SEARCH feature while at the earlier forums, or by searching at the advanced search feature that is at the Diabetes Monitor.
The Dec-Jan Symlin Discussion Forum is located at http://diabetes.blog.com/451577/.
Bill the diabetesdoc
wwq@diabetesmonitor.com
Diabetes.Blog.Com is a blogcompanion to our main website, the Diabetes Monitor, which you can find at www.DiabetesMonitor.com.
These are the same symptoms I experienced pre-Byetta when I ate sugar free foods containing sugar alcohols such as mannitol, which is one ingredient in Byetta. I also had occasional vomiting so I stopped eating them long before I started with the monster.
Has anyone noticed this connection?? I won't eat sugar free candy, but I would tolerate just about anything for this wonder drug.
My numbers are amazing but the weight loss is disappointingly slow even though I am eating much less and being careful with my choices. I am still on 30mg of Actos but do not notice any significant water retention. Need to
lose forty-five to fifty pounds and have only lost a few
so far.
Thanks for all the helpful hints.
Cat mom x 5 (Comment this)
1. Is anyone trying Symlin and Lantus only? Lantus at night and Symlin before meals.
2. When using Symlin and Lispro together, how do you decide the amount… sliding scale of 10 - 20, units of Symlin, and how much Lispro?
3. Has anyone had better results with NPH 2X day as opposed to Lantus 1X day...either one in conjunction with Symlin and Lispro before each meal of over 250 calories?
Any information on the above will be greatly appreciated.
(Comment this)
Stacey,
I just called the Symlin "hot-line" (800-349-8919) and review dosing with them. The "official word" is 20 U-100 units max with each meal for Type 2.
The Babe
(Comment this)
Sharon, cat mom x 5
Your questions relate to Byetta, which is not covered on this blog.
Before you leave us, could you explain the interesting name?
The Babe
(Comment this)
RML,
1A) I tried to use just Lantus (evening) and Symlin (meals) and could not make the numbers work.
1B) The "dawn phenomenon" requires me to add a substantial amount of "short insulin" at my first meal of the day.
1C) Lantus only works for me for about 21 hours. Accordingly, if I normally take Lantus at bedtime, I need some extra "short insulin" with my evening meal.
2) I never vary my Symlin. I find that is much easier to fix the dose of one med and just have to learn how to vary the other.
The Babe
(Comment this)
I'm taking your suggestion and will stay with the 10 Symlin before each meal and adjust the insulin.
On a related topic. Have you ever tried Regular insulin en lieu of the Lispro (fast acting) before meals with the Symlim? I thought of trying this to see if they matched up better.
Thanks again ...RML (Comment this)
RML,
There are some people who have switched to R from Humalog and find the slower action works better for them. I am not familiar with LisPro but it might be worth a try.
If you are T2, have you talked with your doc about going to the full dose (20 U-100) of Symlin with each meal?
The Babe
(Comment this)
(2) Also: if you haven't yet answered our polls to tell us more about yourself, we'd encourage you to please do so:
(Comment this)Hope this helps. (Comment this)
Sue B (Comment this)
Has any other type ones tried symlin and found that it did NOT help ? (Comment this)
I'm a type 1 of 41 yrs., take mdi (Humalog & Humilin N), and currently have been using Byetta for 33 days. (Comment this)
Jess (Comment this)
(2) Also: if you haven't yet answered our polls to tell us more about yourself, we'd encourage you to please do so:
(Comment this)You are a type one in Byetta? I didn't know they prescribed it for type ones. Can you give us more info? How much insulin are you taking now vs before byetta? What are your numbers? How do you feel?
I have heard that it causes beta cell regernation and am anxious to tryit...but didn't know that they gave it to type ones...
I am curently on Symlin, whihc works well for me...but if byetta is better I'd like to try it.
Thanks!
Dia (Comment this)
jill (Comment this)
If symlin works well for you, by all means continue using it. Unfortunately, I did not have good luck with it, my BG levels were mostly high and I felt horrible.
Since starting byetta, my BG levels are better than with symlin, but still not perfect. I fluctuate from normal to the low 200's and that is a little better than before I started symlin except I have more energy now. I will continue to adjust my insulin until I get it right. Prior to symlin I was taking Lantus & Humalog (approx. 33 units btwn both) and now with byetta I am taking Humulin N & Humalog (approx. 24 units btwn both). (Comment this)
I am Type 1 for 20 years and on a pump for 6. It sounds like you need to increase your bolus insulin but change your % of the dual wave. If yur totoal bolus is 4 and you are taking 2 and 2 over an hour, try increaseing it to 6 and taking 2 and 4 over an hour. (Of course these numbers are just examples.). This will definately help with the spikes 2 hour later. It takes time to fine tune it!
Alicia (Comment this)
I have also noticed that I'm not as thirsty as I used to be. I used to drink 3-4 liters of water a day and now am only drinking about 2. The swelling in my ankles (from Actos) has also gone down, so have stopped taking my water pill.
I do not relish increasing the symlin units as I remember when I used to inject insulin, anything over 5 units caused a burning sensation. As for pump users, you might want to bolus before meals to correct high BS and then after eating do an extended bolus (1-1.5 hours) for the carbs that you eat. I've been doing this for the last 4 days and have not had any unexplained lows or highs.
No change in weight yet, but feeling full after eating is different. There are plenty of leftovers for me to take for lunch now. (Comment this)
Alicia (Comment this)
Anoyone else a type 1 on Byetta?
Thanks! (Comment this)
Also, many on this blog seem to be doing real well on symlin. They might be able to offer other suggestions for you to help get you through the tough times. (Comment this)
Just wondering how long the "magic" lasts. I have only been on Symlin for 5 days. I can't believe how full I feel after eating so little. My blood sugars are incredible. Do you loose the full feeling after a while with Symlin?
Right now I am at 5 units (Type 1) and doing great. I don't know what the benefits are of increasing to 10 since I am doing so good.
Also, is there anyone nursing while on this? Thanks!
Alicia (Comment this)
(2) Also: if you haven't yet answered our polls to tell us more about yourself, we'd encourage you to please do so:
(Comment this)Alicia,
I have lost most of the the feeling of fullness. That happened gradually.
I was at home and very careful with my food, Symlin, blood sugar, etc. for 3 months. I have now been travelling a lot for 2 1/2 months. I find it impossible to be "very careful" when travelling. Weight, blood sugar, etc. are not doing well.
I now feel good almost all of the time, but "the magic" seemed to be limited to when I really had things running right.
I am now at home for an extended period of time and - as we speak - I am doing the things necessary to once again get "the magic" - I hope!!
The Babe
PS - The "magic" is not the feeling of fullness and, at least for me, did not happen right away. It is a wonderful feeling of well-being that occurred a few weeks after starting Symlin and then seemed to last as long as I was doing everything right.
(Comment this)
Thanks. I really appreciate all of your posts. I have learned so much from what you guys have been through on Symlin. My blood sugars since starting Symlin are incredible. I have never felt this good. I think you are right. The magic is more than just fealing full but having everything right! (Comment this)
To all,
The following is some misc info that each of you should keep in mind:
!!!!! No medicine works for everyone !!!!!
On this blog we have seen some people using Symlin unsuccessfully who have successfully switched to Byetta. (That is a diagnosis error by the doc).
We have seen some people who did not get enough info from their doc. (Keep in mind that the docs are learning about this "new generation drug" just as we are).
We have seen some people who did not take Symlin seriously (It is not an "easy" med to use).
We have seen some people ("bashers")who are trying to affect the stock price of AMLN.
And, yes, we have seen some people who just CANNOT use Symlin successfully.
If you look up the prescription fill rate for Symlin, you realize that it is being VERY WELL RECEIVED. Even the few people who post problems on this blog usually seem to get their personal Symlin program "worked out".
And if Symlin just will not work for you, realize that it was worth trying. This is a damn' nasty disease we have, and all of us should realize that we can - and should - spend the rest of our life trying to live a high quality life style - while continually try to beat this thing!!!
The Babe
(Comment this)
jill (Comment this)
Jill,
I currently use Symlin three times a day or four times a day. The difference has to do with when I get up in the morning. I adjust my food accordingly. As far as "tolerating it", my system is neutral.
I tried 5 times a day for awhile and felt it was too much hassle.
The Babe
(Comment this)
I experienced extreme fatigue when I first started taking Symlin. During the first month of taking Symlin, I also noticed that whenever I skipped a dose because I did not eat, I experienced extreme fatigue again. It was so bad that I literally did not feel like doing anything but lying down and sleeping (which is very hard to do with a 3 year old). I have learned not to go more than 12 hours without taking a dose. If I do not feel like eating, I will have a small snack and a glass of milk so I can take a dose of Symlin to avoid the fatigue. I have not had any episodes of extreme fatigue in the last two months since I have stuck to three doses a day (generally at 7 am, 12 pm, and 7 pm). Hope this helps.
Julia (Comment this)
at injection sites. Has anyone else had that problem? I have had no other side-effects,but redness has not gone
away,I am using Symlin at room temp. (Comment this)
Thanks for your comment. It gives me hope. I am taking 3 shots a day and they are fairly evenly spaced. Tomorrow I start on the full dose and will stick with it. Hope my fatigue goes away also.
Lynn,
I havn't noticed redness, but I am getting slight bruising. When it starts to sting as I'm injecting, I pull the needle out just a little and the stinging eases. Make sure you let the skin dry after cleaning it and before injecting, you might be getting some of the alcohol in there.
deb d. ;-) (Comment this)
I posted earlier the problems with Symlin. In short, imagine controlling your diabetes only with a rapid acting insulin. All we have right now is a rapid acting amylin product. In short, that is why so many people have difficulty with this product. Amylin research is clear--Amyline mimics insulin over a 24 hour period with peaks at meals.
This product is good but far from great. All we can do is continue to struggle until a formula is established that gets us closer to what the Islet cell are truly doing. Lantus and pumps do this for us in regards to insulin.
In short, it will be difficult to manage your blood sugar on the symlin we have now.
Dan (Comment this)
Bob,
Typical T2 starting dose is 10 U-100 units per meal. I started on that and used it for about a week.
Typical T2 full dose is 20 U-100 units. I have been on that since the start of the second week for the last 5 months.
My blood sugars were weird until I got stabilized at the full dose of Symlin.
I refuse to talk in terms of the other units - it is too easy to make a mistake. I really believe that Amylin screwed up using two different sets of units. (Syringes are based on U-100 units).
Dividing my food into 4 meals a day and, therefore, using Symlin 4 times a day has worked best for me.
I use my Lantus in the evening.
I also found that I cannot get good control without using a fast insulin such as Humalog with each meal. There are too many factors - such as the Dawn Phenomenon - for me to use only Lantus and Symlin.
The Babe
(Comment this)
(2) Also: if you haven't yet answered our polls to tell us more about yourself, we'd encourage you to please do so:
(Comment this)I was taking 10 units and had good control, but it made me sick. I went down to 8 units, and had good control, but it didn''t make me sick. I can only imagine that the extra Symlin may affect your system in other ways, but not with your blood sugar. I can''t imagine why you would want to take more if your therapy is working. (Comment this)
A peice of advice- I bolus insulin 1.5 hours after I eat. I had problems with lows if I gave insulin with food/symlin and problems with highs 2.5 hours after food/symlin. Waiting to give insulin has worked for me..
good luck everyone, stick with it (Comment this)