Aa
Discontinued my DMD :(
Hi Everyone -
I haven't been lurking around as much as my baby girl just turned 6 months and I am completed enamored by her! I hope you all are doing well.
As I posted a few weeks ago, I fired my PCP for his lack of concern. My new PCP is an internist who has referred me to a new neuro as well......
Story:
I was off oral medication for Type 2 diabetes a month after the birth of my child. My glucose was in non diabetic ranges and I had lost all of my pregnancy weight. I was DX'd with MS; began Copaxone and immediately noticed an increase in sugar as I was still checking to ensure nothing was out of balance no longer being on medication.
Since only 1% of patients report increased blood sugar, my Neuro was in denial as well as Shared Solutions. My breaking point came last Wed when my morning fasting sugar was 185. EEEK! The highest I had ever seen it was 99, 1 time as my normal morning range was 70's. To me, it was indisputable that Copax was the problem. However, my PCP seemed like he could care less and my neuro refuses to change DMD's until my next MRI. Which is due next month.
So, once I explained the situation to my new PCP, he was very concerned that I cannot get anyone to listen. He did labs. No thyroid issue - which is what my neuro was blaming the glucose on. My blood sugars have dropped every day since I've been off the shot. Today it was 125. Still high for me, but much better than 185. I fear that a lifetime of Copaxone would send me into a diabetic coma and feel as though I am treating 1 disease at the expense of another. Both are equally important, in my opinion.
So, I thank you to whomever has read this far and for listening, since that is my biggest problem by far. I am concerned about being off of therapy for at least the next month. But I am no longer stressing out each morning that my glucose raises to levels never seen before :(
I am going to request the oral medication - does anyone have any thoughts they would like to share regarding it? Since it is still so new, I realize the track record is still unproven; but I'm willing to take the chance. I am nervous but optimistic.
I hope you are all doing well, thanks again for your time and friendships. They mean the world to me!
I haven't been lurking around as much as my baby girl just turned 6 months and I am completed enamored by her! I hope you all are doing well.
As I posted a few weeks ago, I fired my PCP for his lack of concern. My new PCP is an internist who has referred me to a new neuro as well......
Story:
I was off oral medication for Type 2 diabetes a month after the birth of my child. My glucose was in non diabetic ranges and I had lost all of my pregnancy weight. I was DX'd with MS; began Copaxone and immediately noticed an increase in sugar as I was still checking to ensure nothing was out of balance no longer being on medication.
Since only 1% of patients report increased blood sugar, my Neuro was in denial as well as Shared Solutions. My breaking point came last Wed when my morning fasting sugar was 185. EEEK! The highest I had ever seen it was 99, 1 time as my normal morning range was 70's. To me, it was indisputable that Copax was the problem. However, my PCP seemed like he could care less and my neuro refuses to change DMD's until my next MRI. Which is due next month.
So, once I explained the situation to my new PCP, he was very concerned that I cannot get anyone to listen. He did labs. No thyroid issue - which is what my neuro was blaming the glucose on. My blood sugars have dropped every day since I've been off the shot. Today it was 125. Still high for me, but much better than 185. I fear that a lifetime of Copaxone would send me into a diabetic coma and feel as though I am treating 1 disease at the expense of another. Both are equally important, in my opinion.
So, I thank you to whomever has read this far and for listening, since that is my biggest problem by far. I am concerned about being off of therapy for at least the next month. But I am no longer stressing out each morning that my glucose raises to levels never seen before :(
I am going to request the oral medication - does anyone have any thoughts they would like to share regarding it? Since it is still so new, I realize the track record is still unproven; but I'm willing to take the chance. I am nervous but optimistic.
I hope you are all doing well, thanks again for your time and friendships. They mean the world to me!
Thanks sweet Cann and Corrie! I'm so grateful for you both and for the forum!
XOXO
XOXO
Oh Lizzie, that is wonderful! A big sigh of relief. Now you can take that off your stressor list. :-)
Corrie
Corrie
Update:
This morning I want to jump for joy. Morning glucose was 98! Wahoo. It's the first time I've seen it under 100 since I began Copaxone! I knew I was correct all along, I'm just glad I've finally found a PCP who agrees. Let's hope the 2nd Neuro goes as well too.
Thank you all for caring enough to join in on the post!
Happy Football Saturday!
Lizzie
This morning I want to jump for joy. Morning glucose was 98! Wahoo. It's the first time I've seen it under 100 since I began Copaxone! I knew I was correct all along, I'm just glad I've finally found a PCP who agrees. Let's hope the 2nd Neuro goes as well too.
Thank you all for caring enough to join in on the post!
Happy Football Saturday!
Lizzie
Hey Eric!
I would still like to hear about your follow up if you wouldn't mind sharing! I will do the same and we can compare notes!
Also, thanks for the anniversary comments and hope you and your lovely bride are enjoying vaca! Enjoy your time away and Happy belated 1 yr!
~Lizzie!
I would still like to hear about your follow up if you wouldn't mind sharing! I will do the same and we can compare notes!
Also, thanks for the anniversary comments and hope you and your lovely bride are enjoying vaca! Enjoy your time away and Happy belated 1 yr!
~Lizzie!
Hi, Lizzie:
I've not had a follow up MRI since starting treatment. Although it doesn't help you now, I will update you when that happens. Wife and I are doing great. Thank you. Hope you and the family are well.
Eric
I've not had a follow up MRI since starting treatment. Although it doesn't help you now, I will update you when that happens. Wife and I are doing great. Thank you. Hope you and the family are well.
Eric
Hi Jude
Thank you for sharing your experiences with your medication! You are doing a great job at self monitoring, I hope you can find a new Neuro ASAP.
Thanks again for the info, hope you have a great week and best wishes!!!
Thank you for sharing your experiences with your medication! You are doing a great job at self monitoring, I hope you can find a new Neuro ASAP.
Thanks again for the info, hope you have a great week and best wishes!!!
I can share with you all I know and experience from my treatment with Aubagio, Teriflunimide, oral medication. I am on the second month of therapy, I do not experience any side effects, although this was my major concern in my struggle of starting DMD or not.
My neuro has no concern about me or my treatment (I do consider to change him as soon as possible) so I am kind of self monitoring. I performed blood tests at the beginning of treatment and an abdominal complete scan. I did blood tests two weeks after the beginning of treatment and then monthly. The major concern when considering Aubagio is liver failure, so there is a special attention of blood tests with relation to this. I also have a co-medication, namely a herbal liver protection, just in case ... Next Monday, I have the second set of blood tests, I let you know if there are any changes.
Take care of you :-)
My neuro has no concern about me or my treatment (I do consider to change him as soon as possible) so I am kind of self monitoring. I performed blood tests at the beginning of treatment and an abdominal complete scan. I did blood tests two weeks after the beginning of treatment and then monthly. The major concern when considering Aubagio is liver failure, so there is a special attention of blood tests with relation to this. I also have a co-medication, namely a herbal liver protection, just in case ... Next Monday, I have the second set of blood tests, I let you know if there are any changes.
Take care of you :-)
That would be a great addition to the forum. Unfortunately, I didn't necessarily research all of the drugs. But, I'm interested if such a magical spreadsheet exists :)
Woud anyone have a single handy chart to describe the effectiveness of all the various DMDs?
I agree Jen and I hope mine is paying off. We've never spoken before, but it's really great to meet you! Thank you for your post!
Lizzie
Lizzie
Hey Jen -
I've been reading about wonderful success with Tecifedera. I verified that the drug is available on the same specialty pharmacy that I utilized for the Copaxone. I was wondering if the success was because fewer people are being studied. I have been looking into it a lot and it seems to be the better route for me. I didn't necessary like the daily shots; however, I was willing to do whatever therapy necessary. I really think my original neuro didn't disclose the oral medication option. But his inability to listen to my concerns and blame other things for the elevated glucose is the reason my new PCP is referring me to an alternate Neuro as well.
I appreciate your time to comment!
Thanks again to everyone!
Lizzie :)
I've been reading about wonderful success with Tecifedera. I verified that the drug is available on the same specialty pharmacy that I utilized for the Copaxone. I was wondering if the success was because fewer people are being studied. I have been looking into it a lot and it seems to be the better route for me. I didn't necessary like the daily shots; however, I was willing to do whatever therapy necessary. I really think my original neuro didn't disclose the oral medication option. But his inability to listen to my concerns and blame other things for the elevated glucose is the reason my new PCP is referring me to an alternate Neuro as well.
I appreciate your time to comment!
Thanks again to everyone!
Lizzie :)
Hey Cann -
We've both been busy, I saw your super garage sale - no worries at all. I have been wondering about the Rebif and waiting to tell you about my Doctor drama! We will catch up soon!
We've both been busy, I saw your super garage sale - no worries at all. I have been wondering about the Rebif and waiting to tell you about my Doctor drama! We will catch up soon!
If there is an oral option available on your insurance, go for it. The success rate is much higher than for any of the DmDs.
Hey Lizzie,
I am so sorry this is happening to you. I hope everything works out in the long run and in the meantime I hope this time and waiting for answers goes fast and seamless.
We need to catch up... Everything is so busy lately. :(
I have read a ton on tecfidera and it would be my number one choice. I am on rebif until my insurance decides to cover it. Hopefully in the coming months they will approve.
Talk to you soon,
Candace
I am so sorry this is happening to you. I hope everything works out in the long run and in the meantime I hope this time and waiting for answers goes fast and seamless.
We need to catch up... Everything is so busy lately. :(
I have read a ton on tecfidera and it would be my number one choice. I am on rebif until my insurance decides to cover it. Hopefully in the coming months they will approve.
Talk to you soon,
Candace
Hey Eric!
Thanks for the heads up regarding Tec :) I have been doing a lot of homework and noted flushing/itching and gastro as main side effects. Glad yours lasted 1 week only. Have you had a follow up MRI since you began? I'm going to look into success rates, etc next :)
Thanks again, hope you and your wife are doing well!
Lizzie
Thanks for the heads up regarding Tec :) I have been doing a lot of homework and noted flushing/itching and gastro as main side effects. Glad yours lasted 1 week only. Have you had a follow up MRI since you began? I'm going to look into success rates, etc next :)
Thanks again, hope you and your wife are doing well!
Lizzie
Hi, cubbiesfan918
Sorry you are having to deal with this. Since you are considering Tec, I wanted to let you know I've had very few side effects besides some very mild gastro issues the first week. It's good you are looking into this option. I hope all works out for you.
Eric
Sorry you are having to deal with this. Since you are considering Tec, I wanted to let you know I've had very few side effects besides some very mild gastro issues the first week. It's good you are looking into this option. I hope all works out for you.
Eric
Hi TLC -
I've seen you around but not sure we've spoken. Thank you for taking time and effort to respond. Your information was invaluable and gave a lot of insight.
I was Dx'd very quickly and symptoms onset during pregnancy. I really was naive and didn't do more homework on DMD's prior to the "D" day. I went in knowing nothing. But he went thru the drugs one by one. Pros / Cons. It was a lot of information and I can't say I recall anything at all about the oral meds.
I'm looking into Tecfidera. I was unaware that there were 3 approved orals, your response is why I love this sight. Thank you for helping a newbie out and providing your thoughts on any time period not on therapy.
I scheduled my 6mo MRI for next Friday, optimistic for good news.
Hope you are all having a very Happy Friday!
Lizzie
I've seen you around but not sure we've spoken. Thank you for taking time and effort to respond. Your information was invaluable and gave a lot of insight.
I was Dx'd very quickly and symptoms onset during pregnancy. I really was naive and didn't do more homework on DMD's prior to the "D" day. I went in knowing nothing. But he went thru the drugs one by one. Pros / Cons. It was a lot of information and I can't say I recall anything at all about the oral meds.
I'm looking into Tecfidera. I was unaware that there were 3 approved orals, your response is why I love this sight. Thank you for helping a newbie out and providing your thoughts on any time period not on therapy.
I scheduled my 6mo MRI for next Friday, optimistic for good news.
Hope you are all having a very Happy Friday!
Lizzie
Hi LBudd,
Thanks for sharing your thoughts! I am sorrybto hear about your damage due to the Copaxone shots. The leg injections were the worst. One injection in the leg made me cry. And, I never thought my c section hurt. I have a pretty high pain tolerance, I can't say I miss the leg or arm injections.
How are you doing otherwise and may I ask which DMD you went ton after Copax?
Thanks again for your mssg!
Thanks for sharing your thoughts! I am sorrybto hear about your damage due to the Copaxone shots. The leg injections were the worst. One injection in the leg made me cry. And, I never thought my c section hurt. I have a pretty high pain tolerance, I can't say I miss the leg or arm injections.
How are you doing otherwise and may I ask which DMD you went ton after Copax?
Thanks again for your mssg!
Hi,
I fully understand your frustration. I used to take copaxone and now have horrible muscle damage in my legs. I have seen worse. I hate that dr.s are not sincere to our concerns. When you have multiple problems and have to see multiple dr.s it makes it very difficult. Like you said, it really is a catch 22. No one every understands how the patient truely feels!!!! Stand your ground. It is your body and health on the line.
I fully understand your frustration. I used to take copaxone and now have horrible muscle damage in my legs. I have seen worse. I hate that dr.s are not sincere to our concerns. When you have multiple problems and have to see multiple dr.s it makes it very difficult. Like you said, it really is a catch 22. No one every understands how the patient truely feels!!!! Stand your ground. It is your body and health on the line.
Thank you sweet Corrie :) I remember you struggling with beginning a DMD, so I really hope the shots are going well for you. You began Rebif, correct? How is that working for you? Thank you for taking the time to listen!
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
Stopping Copaxone (or any DMD) for a month should not have any adverse effects. MS usually does its damage in a more methodical pace, not in just a couple of weeks, even though of course symptoms can appear suddenly whether or not we’re on a DMD. And in your case, it appears that staying on Copaxone does have adverse effects. I’m sorry that’s the case.