CLL and excessive A1C count
I would like to know how many of those taking ... - CLL Support
I would like to know how many of those taking Prednisone for CLL have experienced an abnormally high blood sugar and high A1C?
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NewdawnAdministrator
There’s a well established link between steroids and raised blood glucose levels which makes CLL treatment requiring steroids, a particular challenge for diabetics or those with impaired glucose tolerance.
Steroids can cause blood sugar levels to rise by making the liver resistant to the insulin produced by the pancreas.
People can even develop steroid induced diabetes.
Is this an issue for you LakotaOne? What level of Hba1c are you indicating? There sometimes needs to be increased diabetic medication to overcome the effects.
Being diabetic (more pre-diabetic), I live in fear of the effects of steroidal treatment should I require it for my CLL. I’m even reluctant to have cortisone injections for my damaged rotator cuff.
Regards,
Newdawn
On this steroid induced diabetes : is it temporary if you taper off the steroids do the high sugar levels go down?
It seems with temporary steroid use, yes they do go down. I had steroid injections resulting in small blips which settled.
I’ve heard a fair number of people with type 2 who believe their diabetes was steroid induced however.
Newdawn
Wow that’s just awful. I am just slightly under the Hemoglobin A1C level for ABNORMAL . Glucose always slightly high. I need to start cutting sugars. With this disease I have already had pulse packs of steroids say five times for my skin. So awful . This website ROCKS New Dawn. All my questions slowly but surely get answered by these discussions . You are saving lives my friend . CLL requires a COMPREHENSIVE approach. My white coat friends just want me in and out of the office . No one is looking at the ENTIRE John. With CLL you must stay on top of things.
Do not take Prednisone now. But I did about 6 years ago for severe arthritis. Then I got diagnosed with diabetes. My primary diagnosed me and took me off Prednisone immediately. Over the next two months I could not function. Just felt terrible. I was put on diabetes meds by the primary from the start. My wife went to him and told him how sick I was and his response was to deal with it , it is a reaction from the diabetes meds and will go away. Wife and I had enough. After two months of agony and pain , decided to go to a Endocrinologist. She ask me what meds I take. Told her and said - by the way- my primary took me off Prednisone. She asked how. I told her cold turkey. She ran out of the office and brought back a Prednisone immediately. Couple of hours later I felt like myself. So here is my take. If you go to a Oncologist for your CLL , try to go to one who specializes in it, with the raised A1C , also now include a trip to the Endocrinologist. I know it is a pain going to all these doctors but they are Specialists in their field. Let the Oncologist deal with CLL , let the Endocrinologist deal with the Sugar level and as for the Primary- anything very minor. Going to my Endocrinologist saved my life 6 years ago. J.R.
in reply to JR1964
Great experience Report. Thanks for the information, especially about the role of your Primary compared to what the endocron logist did for. You. My Oncologist is gradually phasing out the amount of Prednisone I'm on. Down to 5 mg 4 days a wet and 2 1/2 mg 3 days, etc. After about 6 months of treatment for my CLL, all my numbers are good except my blood sugar and A1C. I am encouraged by my Oncologist who tells me that when I am totally off Prednisone my blood sugar and A1C will normalize. Here's hoping!
in reply to
I very much appreciate what you've shared. Thank you for it. My oncologist, who I am grateful to have, told me that my A1C and blood sugar would return to normal but that has'nt happened, at least not yet but I'm hoping. One CLL member who shared his story about going to an endocrinologist for his blood sugar issue has inspired me to consider checking that source of help.
I have a hunch that CLL causes higher A1C over time.
I do wonder if you’re right newyork because my blood glucose levels have risen slightly as my ALC has increased.
It’s something I’ll have to research further.
Newdawn
Too many B cells cause immune issues which effect insulin levels. My A1C dropped 1 full point when Gazyva cleared them out. Diabetes related to immune system/B cells. Treat diabetes with anti CD20 therapies?
Yes I’ve done a bit of reading around the subject newyork and I have my suspicions that the CLL may even be implicated in the development of the diabetes. However there’s a strong familial link with type 2 so probably in the genes.
My last Hba1c was 42 and 40 previously.
Regards,
Newdawn
We use a different scale in US. 6.5 diabetic 5.5 normal. In between prediabetic. I take metformin for years for prediabetes...also trials for metformin against CLL . Metabolic death. Del11q cells have different metabolism than other CLL cells. Best
Sounds to be the same scale with over 5.9 (41) pre-diabetic and over 6.5 (48) diabetic.
A member on here actually takes Metformin even though she has CLL and not diabetes believing it’s beneficial for her blood cancer.
I’ve never taken medication for my (pre) diabetes.
Newdawn
LakotaOne,
all the previous replies are good. Not only does it cause the diabetes, it causes heart problems and osteoporosis. I have been on them over a year and have paid that price. No diabetes from it. My thyroid numbers as well as my testosterone numbers are way out of wack due to the steroids. I have been working my way off them, slowly. So far so good. I hope to be off within about 3 more months. The point everyone is making is to use steroids as the last resort. I have them due to a very rare skin disorder. I am now getting IVIG to get off the steroids.
What is the rate skin disorder Elliot? I think I may have it. Please advise
I have Dermatomyositis and not so rare Oral Lichen Planus. There are several other small or different skin issues that have popped up. When I first started with the skin issues, It seemed to change almost monthly. It took from April to August 2017 to finally diagnose me. I was going there every other week (5 hour drive each way). I was diagnosed mostly by the whole Scottsdale Mayo Dermatology Department. I say mostly because all the blood tests were coming back negative, but the biopsies were coming back pretty consistent. Almost every time I was there I was the floor show for the department. Now that I have been on IVIG (2g/kg) since Oct 2017 I have been clearing up and some have gone away. A few will show up, but very mild. Some won't go away completely. I will be on IVIG for the rest of my life
Dear Eliot, I am in the same boat with skin. Had LCV last Friday . A bad vasculitis on my leg. I have had the bug bite nightmare. Drug eruptions to antibiotics and horrible allergic rhinitis . My IGA and IGG antibodies are elevated and my CD4/8 ratio decreased. All abnormal....so I have antibodies but I guess those antibodies don’t work like the good ABs. Plus I have cryoglobulins in my blood.
So IVIG is a shot or an infusion? So treatment for CLL did not help your skin DM lesions? What was your treatment for CLL? I am CLL untreated and day 50-60 of this disease.
My derm told me “Magic Mouthwash” is great for oral LP. In USA and says it’s compounded. It contains Benadryl Maalox and viscous xylocaine....
Thanks for your help.
Best wishes to you
-John
I want to confirm that LCV is Leukocytoclastic vasculitis, to make sure we are on the same page. IVIG is intravenous immunoglobulin which is administered over many hours. One office infuses it about 5-6 hours a day for 5 days. I was doing it about 7 hours a day for 3 days. IVIG therapy is very hard to get approved by the insurance companies.
None of the blood tests will come out correctly while on steroids. Steroids also help keep the CLL down, so that is one good thing. But that is an improper use of steroids.
John with all your other issues: erupting skin, OLP, rhinitis, I would recommend to you to push your doctor to get you on IVIG. If you are having colds/infections too it is another reason added to get on IVIG. Are you seeing a Dermatologist who specializes in these skin issues? If not find one even if it means you have to travel.
After 5 months of getting diagnosed by the Mayo Dermatologist Department for Dermatomyositis, I had gone to my local CLL doctor asking him if I could receive my IVIG from him. I gave him the documentation and Derm Doctors contact. He or his office personnel put my IVIG request in due to CLL. In the beginning I told him he has to put it in under Dermatomyositis. Of course it got rejected since IVIG requirements for CLL are way different than IVIG for Dermatomyositis. Then when I was rejected by insurance my CLL doctor wanted to re-diagnose me. I told him NO WAY, I am not going through all those biopsies and blood tests again. Now he is my former CLL Doctor.
I have been emailing one of my Dermatologists with questions to better understand the immunoglobulins and how they work. Here is the answer to my latest question: The purpose of IVIG is to use (other peoples) antibodies(IG) to neutralized your natural antibodies. Therefore, it is expected for your IgM levels to be decreased if you recently received IVIG. Your antibody levels are as expected. It does sound counterintuitive and thus why we do not routinely check antibody levels as it does not help guide treatment or management. Hope that helps.
I am in a small town so it makes it harder to go find other doctors. I have to travel outside of my area.
Just to make it quite clear for other readers so that there is no misunderstanding, IVIG given to boost the immune system due to the hypogammmaglobinemia (low IgA, IgG, IgM) impact of CLL, only requires one day session every month or so. When IVIG is used to combat auto-immune complications, a much higher dose is require - hence the requirement to spread it over several days.
Neil
Neal, thank you for the input. You are so correct. For the average person who is getting IVIG, it is to clear up infections/colds or misc other things so that dose is much lower than mine. That kind of dose is given in a few hours usually once a month. Some people with low immunoglobulins some times do not have any issues. I am getting a (relatively) huge amount of IVIG due to my auto-immune skin disorders, not due to any colds, flu or infections.
And more specifically to your last sentence:There are very stringent guidelines not to go too fast on the infusion. I learned that it is also up to the individual on how much, little, how fast or slow the IVIG can be infused. A few times it was being infused too fast for me so I was getting nasty headaches. Also hydration is very important to go along with it.
My husband has T1D and CLL and cannot tolerate steroids at all. He had to do two doses per his CLL trial requirements and his blood sugar was over 400 for 48 hrs each time no matter how much insulin he poured on. We try to avoid steroids anytime we can. A1C is a 12 week picture of blood sugar so longer term use could absolutely make your A1C higher.
