Have any of you have tried Metformin or know anything about its use to treat idiopathic edema/increased cellular permeability? I came across two studies that found it very successful for people with IE and the majority of patients achieved a complete response. I have an appointment with Dr. Check in a few weeks and will ask him about it.
The Effects of Metformin on the Capillary Permeability to Albumin in Women Patients with Cyclic Edema (1995)
http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.882.5963&rep=rep1&type=pdf
Long term use of metformin in idiopathic cyclic edema, report of thirteen cases and review of the literature (2017)
https://www.ncbi.nlm.nih.gov/pubmed/28212888
It looks like the insurance company will pay for Vyvanse 10mg once a day instead of 30mg a day. We will know for sure this week. I am lucky that I don't need more than that normally since I am very sensitive to medication. The problem may arise when I am not in remission and need to increase the dosage. I looked a bit more into Metformin but it causes some gastroparesis in the way it works in the body. This is not good for me as my main symptom is first Gastroparesis then the fluid. If you don't suffer from gastroparesis, it may be something you could try. Just make sure you have regular ongoing medical checks with blood work, kidney function and such. That is my latest update so we will see how this plays out.
The doctor's office has been dealing with my insurance company to continue with the Vyvanse as it works well for me. I have not yet been back to see Dr. Check as they want to fight this so I can stay on this medication. My major symptom besides the edema is gastroparesis. I am not sure that Metformin is dealing with this, which is a major issue when I am not in remission. So, I am not sure what I am doing yet as this is still playing out with the insurance nonsense. I will be calling again at the beginning of the week as to the status again in this situation. It was last left at the point where now Dr. Check had to speak directly with my insurance company. He sent over documentation regarding the disorder. I am on a low dose every day so that the drug has lasted me. I have about one more month before I run out so I need to resolve this soon. The doctor felt there was no reason for me to come in until this is resolved. If edema is your main issue, you may want to try the Metformin. I would make sure that your PCP keeps an eye on blood work and checks kidney function. I am trying to stay on the medication that I know works with the least amount of side effects. I will let you know after this all plays itself out soon.
Yes, I will give progress reports. Let's all keep our fingers crossed.
I'll be waiting to hear if it helps you.
Serendipity:
Hello everyone! Well, my insurance company through my job, (Optimum) :-( has refused to cover my Vyvanse for this disorder since it is being used "off label." I could pay out of pocket, which is a little over 10 dollars a pill!! For 30mg per month it is over a thousand dollars (around $1,150 a month)! I had been on Adderall over ten years and it is not as effective for me also. The timing of your post is good as I will probably be switching to Metformin myself. I read more on the medication and it does not affect the blood sugar like other Class 11 diabetes medications. I see Dr. Check on Monday and will ask him too about switching to this medication. I have a lot of Vyvanse left so now is a good time to see if this could work for me as well. Whether it is difficulty getting the controlled medications (Dexedrine, Adderall, or Vyvanse), or if your insurance company doesn't want to spend money for your Vyvanse, it would be nice to have a hassle free and generic option. The Vyvanse works well for me and no side effects like the Adderall or Dexedrine. It is the premium version of those drugs so they will not approve it often due to the availability of Dexedrine and Adderall. It was designed for those that didn't want to deal with these "pesky" side effects. For those of us that are not wealthy enough to dish out over a thousand dollars a month, Metformin may be a good option. I will then too become part of "our little study group" to see if it is effective over time. The long term study only involved 13 patients with idiopathic edema but they did well. The major drawback was diarrhea for some. With my chronic constipation and gastroparesis, this may not be an issue at all. So, with an open mind and a hopeful heart, I too will be trying Metformin. I will see if Dr. Check is agreeable, (which he probably will be), and keep you posted on the results. Wishing you all good health. Talk soon. Eileen
I did not like Adderall too much either and am now on Vyvanse which doesn't have those side effects for me. It is still a controlled substance though. Does the Metaformin interfere with your blood sugar? There are other restrictions depending on a person's health condition. It is always good to see what is available and to give people as many options as possible. For now personally, I am staying on Vyvanse as it works well for me with no side effects. I take a small dosage which also helps.
The only thing I would say with the Vegan diet, is most people on this diet are vitamin B12 deficient. Just be aware of this. I have friends who are doing well on that diet for years. Thanks for sharing and let us know your progress with this over time. I will be interesting what Dr. Check has to offer regarding the Metaformin. The article explains about the B12 and indications for use. Thanks for sharing it with us. Best of health.
bregle,
Is this still working for you? I would be interested to know.
For a while I had felt like the Adderall wasn't working quite as well for me and I didn't want to increase the dose because it already made me sweaty and anxious and I was worried I would have trouble sleeping. Not to mention how much difficulty I already had with getting my prescriptions filled. I talked to Dr. Check about Metformin and brought copies of the studies (linked in my original post) with me. He had never tried Metformin for IE, but he agreed to let me try the dose prescribed in the study, 850mg 2x daily.
Initially I took both the Met and Adderall, but I slowly decreased the Adderall because the Met made me feel like I didn't need it anymore. I have been off of Adderall for about 6 weeks now and the Met seems to be more effective for me. I sleep much better at night, don't get anxious, and don't have issues with sweating or heat intolerance. The Met seems to control the swelling very well as long as I avoid drinking alcohol, make sure I get enough sleep, and avoid high humidity/heat. The best part is that Metformin is not a controlled substance, so it's easy to fill my prescriptions and I no longer feel like a slave to the pharmacy.
I have my next appointment with Dr. Check on Monday so I'll keep you updated!
I haven’t been out here in far too long. How was your appt? Any revelations? Interesting talk about Metformin?