I want to share my experience taking Spironolactone in addition to Adderall since it is sometimes prescribed for idiopathic edema. Before I found Dr. Check, I was treated by another doctor who prescribed Spironolactone (25mg). It was minimally effective and I was told to use it in conjunction with compression stockings to manage the fluid. I was also prescribed Lo Loestrin (birth control pill) because Spironolactone causes irregular menstruation (and birth defects if you get pregnant).
After I found Dr. Check and he prescribed Adderall, I initially tried to stop taking the Spiro cold-turkey. I immediately had significant rebound water retention. I began taking it again and continued to take it. He increased the dose at one point because I complained of (very mild) excess hair.. having to pluck a dark hair on my chin every few days.
I made a lot of progress on Adderall but felt that I started to plateau, or even gain some fluid, after increasing the Spiro. A few months ago I decided to wean off of the Spiro-- since it is a diuretic I knew a sudden decrease in dose could cause a lot of fluid retention.
I decreased the Spiro dose by about 10mg every 2-3 weeks. Each time I decreased it, I would start retaining ~5lbs of excess fluid for about 10 days, after which it would start to decrease. ** Key thing to note here is that I could tell the difference between Spiro rebound fluid retention and edema. When I start swelling, I can feel the edema in my legs.. in a way, I can feel the fluid going down. In comparison, Spiro rebound fluid retention was distributed throughout my body-- my face got puffy and I was just bloated in general.
In October 2017 I was on 100mg daily of Spiro, and now in February 2018 I am down to 15mg (almost off it completely!). I am retaining much less fluid, my face is thinner and less round-- I feel like I have my face back. I also have less swelling in my abdomen.
I also discontinued the Lo Loestrin. After about a week I noticed that the anxiety I felt sometimes (which I had attributed to the Adderall) was gone. My issues with sweating, sensitivity to heat, and mood swings were reduced. Anxiety is a possible side effect of Lo Loestrin and I think that in combination with Adderall, it made it worse.
Realizing how sensitive my body is to hormonal changes, I will be staying far away from anything else. I would much rather have to pluck a few dark hairs than deal with being on Spiro. If you are having side effects or feel that you aren't making progress, consider any other medications you may be taking; they may be making an impact that you never realized!
It never ceases to amaze me that other people feel they know your body better than you do. I was also on birth control pills since I was seventeen and off and on over the years to try and regulate my menstruation. When I wanted to get down the bloating I used to listen to music while jumping on those small exercise trampolines. Before doing that I would wrap my waist in saran wrap and then cover it with stretchy pants with elastic waist so it would stay in place! Little did I know I was getting rid of fluid but of course that doesn't last. I would get tired of going to doctors (and I was working as a nurse), because they never saw anything wrong. Even when very distended they would look away or suggest another gastroenterologist. I had endoscopies and colonoscopies with no findings. It is amazing that when something isn't working, instead of looking at that, they push you harder. It is a hard road to get where we are. I hope a blog like this can prevent someone from going through all the nonsense before getting the right treatment. Thanks for contributing to this forum. You are obviously an intelligent person and your perseverance led you to finding what is best for you. I wish the medication could be obtained in NJ but at least I am able to get it in PA.
It's interesting that you mention menstruation-- I mentioned it to Dr Check when I first saw him a few years ago, I have always had menstrual issues but I wasn't sure if it was related. I would go 7-8 months with menstruating.. my OB/GYN put me on birth control to regulate it, but that didn't address the root cause. I was on Lo Loestrin for a few years, and on that you don't get a period at all. Since going off of it, I had a lot of bloating when I started menstruating again. I am hoping my body will get used to it and it won't be so bad next time.
I was misdiagnosed as well, I know exactly how you felt-- I knew deep down that it wasn't right. I was diagnosed with Lymphedema, and went to physical therapy for it. I refused to wrap my legs in 3 layers of bandages every day and the physical therapist thought I was in denial; she kept telling me "You can't just take a pill and make this go away. You need to commit to therapy and compression wrapping to manage it." Well guess what?? She was dead wrong!!
I was re-reading your post and you mention how sensitive your body is to hormonal changes. Mine too!! I seem to change about every year or so and sometimes one medication doesn't work and I have to switch. I have always had hormonal issues, problems with menstruation with extreme bloating at that time due to the normal congestion plus the edema. I knew my body and that I was experiencing hormonal shifts but doctors at that time could not find anything wrong. I was diagnosed several years ago with a brain tumor. I knew in my heart that it was untrue so I never believed it but went for the CAT Scan which was negative. I should have called Dr. Check or Dr. Cohen but I took the results to them afterwards and was told that this is not uncommon. If we live long enough, we will all have to pluck some unwanted hairs. LOL. My girlfriend gave me a magnifying mirror for Christmas and I can tell you that mirror with its 10x magnification was not a gift for the faint of heart!!
Treatment with Spiro has been shown to be less effective than Adderal or Dexedrine. I also have heat sensitivity, and hormonal changes were unbelievable. I had a hysterectomy for Endometriosis and am more stable since. I still have hormonal shifts every so often in my body and may need to change from Adderal to Dexedrine as one may no longer be effective. Then maybe a year or two later, I need to switch back. Heat intolerance is more common with this disorder and most people have an exacerbation of these symptoms in the summer months. I usually go out of remission once in the fall or winter for a short time and then I increase the medication. I carry those disposable ice packs which helps also. I have driven in the car with my hand out the window to reduce swelling if too warm in car and cold out. LOL. We do what we have to so we can feel better!