IVIG treatment did not improve my case of cidp, now my doctor is proposing steroid treatments. I am a type 2 diabetic currently using oral med, glipizide, and an injectable med called Victoza to control my blood sugar. The doctor thought that I might require insulin if I were to go onto steroid treatment. Does anyone in the group have any experience with steroid treatment and type 2 diabetes?
Mikemc
I have type 2, but no experience with steroids, with IvIG, yes. IvIG & diabetes... hard to differentiate, so I may jump to insulin to differentiated in 2015.
Is this doctor a neuro or PCP? If PCP, see neuro and a endocrinologist. I am learning (by their mistakes) that there is little cross-discipline medical referencing when it comes to GBS/CIDP
I am new here and starting IVIG on 12/26… I’m curious to see how I respond. I’ve been a type 1 diabetic for 27 years. Is long time ago I was on a steroid for back pain issues. It elevated my blood sugars drastically and I had to increase my insulin pretty dramatically. I hope u find something that works for you!!
What kind of IVIG do you get ?
mikemc,
I go to coastal neurology in Dover with Dr. Fahad. I’ve been on ivig since March and it hasn’t worked. I see the doc again Dec. 30 and he’ll probably try steroids next. Did you start out at mass general right away?
Thanks,
Dennis
Dover, NH
I don`t have diabetes but I can tell you that steroids was the cure all for me.After high dosages in a matter of weeks I was in total remission and have stayed that away since june of the past year.I say give it a try and see what happens.IVIG treatments did nothing for me as well.
Thanks for the information about your experience with steroids. From what I have been told , I can expect my blood sugar to increase when on steroids and my doc said that it would probably mean insulin .
mikemc
soccerdad said:
I am new here and starting IVIG on 12/26... I'm curious to see how I respond. I've been a type 1 diabetic for 27 years. Is long time ago I was on a steroid for back pain issues. It elevated my blood sugars drastically and I had to increase my insulin pretty dramatically. I hope u find something that works for you!!
My doc is a neurologist DR Cros, connected to Mass General Hospital in Boston, Ma.
estaban said:
I have type 2, but no experience with steroids, with IvIG, yes. IvIG & diabetes... hard to differentiate, so I may jump to insulin to differentiated in 2015.
Is this doctor a neuro or PCP? If PCP, see neuro and a endocrinologist. I am learning (by their mistakes) that there is little cross-discipline medical referencing when it comes to GBS/CIDP
Dennis, I saw a female neurologist in Dover, NH in late 2012. Dr Somerreddy(spelling?) was her name. She did the first EMG testing on me in the fall of 2013, and her diagnosis was diabetic neuropathy.It did not make sense to me because all of the blood testing showed that my blood sugar levels were low and the H1Ac tests at that time were in the low fives. She felt that it was best to seek a second opinion and she set me up with the Neurologist , Dr. Didier Cros, at the Mass General Hospital, who made the CIDP in Dec, 2012 after EMG's spinal taps, etc.
Dennis May said:
mikemc,
I go to coastal neurology in Dover with Dr. Fahad. I've been on ivig since March and it hasn't worked. I see the doc again Dec. 30 and he'll probably try steroids next. Did you start out at mass general right away?
Thanks,
Dennis
Dover, NH
From your message, I'm not clear on what type of doctor you are seeing for your CIDP, but if I were you, I would ask for a referral to an Endocrinologist if you don't already have one and make sure they keep in good contact with your neurologist. Steroids will elevate your blood glucose levels, likely cause weight gain, heartburn, high blood pressure, bone loss, insomnia, short temper, etc. etc. The elevated blood glucose levels will affect your vision and kidneys...diabetes is so unforgiving. I would be very surprised if you were able to be on steroids without insulin being added to the mix and insulin will also cause weight gain. Best wishes to you!
Sunshine
Thanks for the input. It was my neurologist who thought that I might require insulin if I were to go on the steroids. I do not like the prospects of stEroids, with all of the bad side effects. I have heard that in some cases that even when steroid treatment stops, insulin is still required.
. I would assume I would have to see an endocrinologist to set up any insulin.
Sunshine said:
From your message, I’m not clear on what type of doctor you are seeing for your CIDP, but if I were you, I would ask for a referral to an Endocrinologist if you don’t already have one and make sure they keep in good contact with your neurologist. Steroids will elevate your blood glucose levels, likely cause weight gain, heartburn, high blood pressure, bone loss, insomnia, short temper, etc. etc. The elevated blood glucose levels will affect your vision and kidneys…diabetes is so unforgiving. I would be very surprised if you were able to be on steroids without insulin being added to the mix and insulin will also cause weight gain. Best wishes to you!
I had to have high dose steroids back in 2010 when I was diagnosed with MS. I had 1000mg prednisolone infusion every day x 3 days. I developed all the problems I stated above (except for DM) and on top of that, a nasty form of psoriasis (PPPP) that has never gone away despite the $600 tube of ointment I was prescribed. I would do whatever you have to in order to stay away from steroids if I were you, but of course, not everyone will react to meds the same way. Whatever you decide, I wish you the best of luck and everyone has to do what's best for them.
mikemc said:
Sunshine
Thanks for the input. It was my neurologist who thought that I might require insulin if I were to go on the steroids. I do not like the prospects of stEroids, with all of the bad side effects. I have heard that in some cases that even when steroid treatment stops, insulin is still required.
. I would assume I would have to see an endocrinologist to set up any insulin.
Sunshine said:From your message, I'm not clear on what type of doctor you are seeing for your CIDP, but if I were you, I would ask for a referral to an Endocrinologist if you don't already have one and make sure they keep in good contact with your neurologist. Steroids will elevate your blood glucose levels, likely cause weight gain, heartburn, high blood pressure, bone loss, insomnia, short temper, etc. etc. The elevated blood glucose levels will affect your vision and kidneys...diabetes is so unforgiving. I would be very surprised if you were able to be on steroids without insulin being added to the mix and insulin will also cause weight gain. Best wishes to you!
I know everyone’s symptoms are different and our body’s react in different ways. But I just had some additional questions if anyone is up for answering based on their experience:
1. I had my initial IVIG treatments on 12/27 – 12/31/2014. I know it works for some and not for others. I’ve also read that for those who it does work for usually see some changes anywhere between 10 days to 4 weeks. I’m 5 days past my last IVIG and actually feel my legs have gotten weaker. Is it too early to give up hope that I could possibly see some improvement down the line while things seem to be getting a bit worse?
2. One of the most frustrating parts of all this for me is my speech. It has become so very nasal and hard to talk. I did have a response from someone here who had nasal speech as well and who had success with IVIG that helped him. In investigating bulbar issues as it pertains to CIDP I read that “Cranial nerve and bulbar involvement occur in 10 to 20 percent of patients.” I was curious to see how many other members here have experienced issues with nasal / breathy speech? I also battle issues managing my saliva quite often that leads to choking.
Thank you.
soccerdad
Hi, I could not tell the first week after 5 daily treatments of ivig, if I was getting better overall. It was a mix on a daily basis. Some things were better some were worse. By the second week I wasn't getting worse so we were hopeful at that point. I had weekly infusions after the initial 5 day infusions. I also have cranial involvement. The cranial symptoms you speak of did get better along with everything else. Until it does, be careful eating and drinking. I would do daily self evaluations to measure stability. In the beginning if I noticed a decline that didn't improve within days, a week tops, I would call my doctor. The first few months we were in touch often.
Be hopeful.
soccerdad said:
I know everyone’s symptoms are different and our body’s react in different ways. But I just had some additional questions if anyone is up for answering based on their experience:
1. I had my initial IVIG treatments on 12/27 – 12/31/2014. I know it works for some and not for others. I’ve also read that for those who it does work for usually see some changes anywhere between 10 days to 4 weeks. I’m 5 days past my last IVIG and actually feel my legs have gotten weaker. Is it too early to give up hope that I could possibly see some improvement down the line while things seem to be getting a bit worse?
2. One of the most frustrating parts of all this for me is my speech. It has become so very nasal and hard to talk. I did have a response from someone here who had nasal speech as well and who had success with IVIG that helped him. In investigating bulbar issues as it pertains to CIDP I read that “Cranial nerve and bulbar involvement occur in 10 to 20 percent of patients.” I was curious to see how many other members here have experienced issues with nasal / breathy speech? I also battle issues managing my saliva quite often that leads to choking.Thank you.
soccerdad