A1C Stagnant/Increase Trulicity/RA Meds/Weight Loss Surgery

Hi everyone. I’m still on the hamster wheel of RA/diabetes/thyroid. Been on Trulicity 0.75 since November and my labs in March showed my A1C did not move from 6.5. My endo was very unhappy with me and has increased the Trulicity to 1.5 and started talking about weight loss surgery and placing me on cholesterol medication because my cholesterol was 202.

I calmly asked her that didn’t see think my cholesterol was increased due to my RA medication—prednisone maintenance pill of 5 mg/daily, Remicade every 4 wk/1,100 mg infusion, and 40 mg solu-medrol prednisone injection with my infusion, plaquenil 2x, Topamax 2x (Fibomyaglia). She said yes, the prednisone would increase my cholesterol.

But she was still pushing for the weight loss surgery—again the weight is due to the steroids for the RA, I eat small meals. Sometimes I have skipped meals. When I skip meals my blood sugars range from 95 to 108. But when I eat a meal I average 122 and higher.

She accused me of eating improper with the high blood glucose levels on my meter. Again, I reminded her that the levels reflected when I took my infusions, and after I took my oral medications.

So, even with the Trulicity 1.5 my numbers are still fluctuating between 102 (waking up) to 150 (bedtime 9 pm). I take my night medications at 6 pm with my evening meals. I eat no breads, rice, pasta, or starchy veggies (corn). No eating between meals.

I am at my wits end. She wanted to place me on a daily shot for weight loss, but my insurance won’t pay for it. My RA doctor is happy with my progress because the steroids have ballooned my weight up to 300 lbs. (labs did not show diabetes or pre-diabetes at the time), but I’ve lost down to 245 (and now I’m diabetic). Go figure. Before I was diagnosed with RA and placed on steroids (25 years ago), I weighed 150.

One caveat–my RA is not under control at all—and never has been—my CRP levels are off the charts, my SED rate is very high. I do not “show” RA damage, but my labs are awful–I feel like I have the flu all the time.

So, for me to continue to work to push myself and full-time job is really an accomplishment, but my endo does not see any of this, all she sees is that I’m not in in alignment for weight, A1C, or blood glucose levels. She wants them to be in the 80s. I’ve always ran in the high 90s/low 100s even before I was diagnosed as pre-diabetic/diabetic because of the steroids.

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Sounds very frustrating. I personally think you’re concentrating your efforts properly. Your blood sugar levels don’t sound that awful to me given that you’re dealing with multiple conditions and steroids. As you clearly know, steroids cause all sorts of difficulties for people with diabetes.

It sounds like it might be worth seeking out a different doctor. Your doctor doesn’t appear to be listening to you or believing what you say. It’s hard to make any progress with the doctor if they can’t, at the very least, believe that you’re making the efforts you claim.

The doctor should be working for you. Their job is to suggest solutions that balance health priorities/conditions - not to make you feel crappy.

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If prednisone is an issue, there are some alternatives that might help. Arava, Methotrexate or Sulfazine are three medications that tend to suppress the autoimmune system and are used to supplement Remicaide or other RA meds. This is different than the action provided by prednisone but as a T1, I almost never use ongoing prednisone treatment because of the impact on my blood sugar and cholesterol.

Most infusions include prednisone and it is used to protect the body from adverse infusion reactions. This is normal procedure. These prednisone is usually expelled in about 36 hours post infusion. Other medications may not have a prednisone component. Xeljanz is a once daily pill, Humira, Cimzia and Enbrel might work out as well.

All RA medications are individual specific and what works for me others may not work out for others. I suggest have a good heart to heart with your rheumatologist, there may be other options out there.

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Hi Rphil2 - I have taken pretty much everything with the exception of Rituxan and Xeljanz. My rheumy said he wouldn’t dare put me on Xeljanz for the fear of what little help Remicade is doing will be lost, and as a fellow RA patient, you know if you go off the regimen of an infusion the antibody buildup will cause your body to have a severe reaction. I’ve failed all those you named many years ago and some I’ve doubled back and tried.

I’m at the maximum dosage for the Remicade and the shortest length for the infusion. I missed out on the blood cleaning program that they used to do many, many years ago–the rheumatology community stopped doing it just when I was diagnosed, but my rheumy said that process would probably have been the best regimen for me. The other option was taking gold, but you can no longer even get gold anymore from the pharmacist, I don’t think.

In the last three years, I’ve developed gout, but I don’t eat red meat or anything to cause the classic gout–rather I was told I have “gout of the blood”—basically my immune system is just taking it’s sweet time, turning “on” switches one by one. The first switch was turn on at the age of 14 with Graves disease.

Each month my rheumy and discuss options, but truly it is baffling. He has talked to other rheumys and I left and went to another rheumy. I will never do that again. He put me on Acterma and I almost ended up bedridden. Thankfully, my rheumy took me back and was able to start me back on Remicade, and I hadn’t built up too many antibodies.

The rheumatologist did try to wean me off the prednisone and my RA numbers tripled. I landed in the ER and was off work for a week, I was unable to walk. I normally wear a size 8 M shoe, my feet swelled to a size 10 M. I received 128 mg of prednisone shot in the ER to get the inflammation out of my system.

I took Humira weekly for 5 years, Cimzia, Enbrel and Symponia did nothing for my labs. In fact my numbers went up with Enbrel. My numbers went up with Acterma too and I developed a fever. Orencia I did for 5 years but they had to keep increasing the dosages–my RA becomes immune to the medications and start fighting back making it’s own antibodies.

I’m not eligible for any of my doctor’s research studies because I’ve failed so many drugs. Methotrexate and Arava gave abnormal liver blood work and did not change my CRP or SED rates in combination with other drugs. I tried the Sulfazine and I broke out in hives and had to take other meds to counter that medication and all the trouble, my labs didn’t improve.

All the NSAIDS I started at first diagnosis was like taking candy, my joints doubled in size and that’s when I got my first prednisone Z-pack, plus shots directly in the bursa. Now my mom and her sister —OA and NSAIDs were/are go to meds for them. BTW, something I have to look forward to—joint replacements, yay, not! Grrr!

I only take Norco when I absolutely desperately have to do so which makes the nurses mad at me but I’ve hurt all my life, pain is second nature to me (officially diagnosed at 25), the feel bad (that flu feeling, excessive tiredness, aching) is worse for me. Then diagnosed with fibromyalgia. Cymbalta and Topamax have been great—I cannot take Lyrica—it blew me up like a balloon and caused nerve spasms—I’d lock up and freeze like a statue while just walking down the hallway, but Topamax has helped me lose a lot of weight and helped with the pain. They say I have peripheral neuropathy I don’t know if it’s from RA or diabetes—I was diagnosed under RA, so…the Cymbalta helps with the numbness in my fingers and hands and feet.

All in all, I stay in good spirits, it could be worse, looking at me no one would know I’m an RA patient. But looking at my labs and medical list tells a different story. Unfortunately, I don’t know what to do…do I suck it up and give up the prednisone and suffer more to have better diabetes numbers and weight loss; or, keep going at the rate that I am and try my best. My RA numbers are what they are, but if I give up the prednisone I won’t be able to continue to function as I am doing now. We (me and my rheumy) have reduced the prednisone a lot. I don’t know…a lot to think about, nothing is ever simple…

My PCP (who is now retired) always called me his ‘special’ patient. He always referred me out unless it was a cold or something simple because he said my problems were never easy. LOL!

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I am using and have had wonderful success with Rituxan. I used Remicaide for 6 years and was also on the same dose you are using. I ran through a number of the others and then got to Rituxan, which I use every 4 months. II am adamant abut staying off of prednisone as much as possible. I have used low dose (always tapering in 4 weeks) to get over the little humps.

I wish you the very best. i do understand not using Xeljanz given the current warnings about increased cholesterol in users. hopefully a new medication in the form of a pill will soon be on the market. It has shown wonderful action for cholesterol reduction. It has not yet been approved for sale in the US however.

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My rheumy and I are holding Rituxan in the back pocket when Remicade completely fails. Remicade does not have my RA under control, but it allows me to function enough to still work. Unfortunately, I am too young to retire from my job and receive full health benefits.

I am hoping there will be more biologic options on the market soon. My rheumy has one other patient (female also) who has a similar medical profile as mine. It’s so funny, we both end up in flares around the same time and take similar medications. Our labs come out similar as well. It’s a head scratcher.

I’ve told my rheumy that I’m at the point I’m willing to be a guinea pig for research, but I’m considered “tainted” due to all the drugs I’ve taken and failed…I’m not a blank slate or not considered “pure” enough for research purposes.

Now I have diabetes breathing down my back. Grrrr! But it was only a matter of time, diabetes in the family tree, taking prednisone for almost 25 years non-stop.

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