bethanyh Posted March 11, 2015 Report Share Posted March 11, 2015 I was just diagnosed with POTS in January and have been taking Midodrine 2.5mg 3x daily since my diagnosis. I recently switched to a new cardiologist and he has prescribed Florinef 0.1mg, once daily as well as Potassium 10 meq once daily. However, he wants to slowly take me off of the Midodrine. I am not sure I want to stop taking Midodrine, as I feel that so many people have had positive results with it. My blood pressure is typically in the mid to high 90's/low to mid 60's, even on Midodrine. The Midodrine is such a low dose and my BP numbers are low so I am not sure why my cardiologist wants to take me off Midodrine instead of increasing the dosage. Does Florinef really bring blood volume up to the point that Midodrine is no longer needed? Today was my first day of taking Florinef and Potassium but due to being incredibly sensitive to medication (and failing on so many meds over the past year) I broke both of the tablets in half. I plan to take half a tablet of each for the rest of this week then next week take the full tablets of both.I am curious about some other people's experiences (positive, negative, side effects, etc.) with Florinef or a combination of Florinef and Midodrine.Thanks! Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 11, 2015 Report Share Posted March 11, 2015 Florinef definitely helps me retain fluid better and I just restarted it a month ago. This time, it has significantly increased my bp....the first time it didn't BUT we have addressed some of my other issues in the meantime so it might be letting the florinef do its job. I did try midodrine when my bp was at its Lowest and it didn't help at all. BUT, my low bp is somehow linked to my inflammatory issues and we are treating that with prednisone now, so I'm thinking the midodrine wasn't effective because it was not treating the root cause of my particular issue.My advice is to talk to your doc about your concerns. Ask why he wants this change. And it is ok to voice your preferences to your doctor. Quote Link to comment Share on other sites More sharing options...
bethanyh Posted March 11, 2015 Author Report Share Posted March 11, 2015 Thanks Katybug. When I questioned my doctor he said he just did not like Midodrine, no reason beyond that. I am really hoping the combination of meds will work for me. Thank you for the encouragement to voice my preferences and opinions. Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 11, 2015 Report Share Posted March 11, 2015 Sure thing. I think we are taught in our culture (probably in most cultures) to revere doctors and to do what we're told by the doctor. But after having had many bad doctors, I realized that we pay them for a service and if we don't understand or are uncomfortable with that service, we have a reasonable expectation that our questions should be answered to our satisfaction and that it is our body so we get to have a say in what we do to it. In my experience, good doctors respect and appreciate that. Quote Link to comment Share on other sites More sharing options...
bethanyh Posted March 11, 2015 Author Report Share Posted March 11, 2015 I agree and it took me awhile to reach that conclusion. Before I was diagnosed, I had so many doctors tell me that I was making up my symptoms because no blood work or other tests would validate what I was conveying to them. My pastor gave me a great word of advice~doctors work for you, you are paying to see and be treated by them so you need to hire and fire doctors as you feel necessary. That has been my motto ever since!The medications are so confusing to me and I don't know what to expect or what is "normal". Then again, I suppose there is no normal! Quote Link to comment Share on other sites More sharing options...
dancer65 Posted March 11, 2015 Report Share Posted March 11, 2015 I am new to this diagnosis although had milder symptons for a long time before it really hit me I. I started Florinef six months ago and it has helped with my blood volume, I still get dizzy but at least it is much better than it was and I have stopped falling over, that's a bonus! I also notice I am not visiting the bathroom every 15 minutes so I presume it is doing its job on helping me to retain fluid.I hope it all works out for you Quote Link to comment Share on other sites More sharing options...
bethanyh Posted March 11, 2015 Author Report Share Posted March 11, 2015 @dancer: Thank you for sharing your experience! I just stated the Florinef yesterday so I do not know what the next few weeks will bring but I am hopeful too! I am sure it is my body initially adjusting to the medicine but yesterday and today I have been really dizzy/lightheaded, I have been incredibly thirsty so I have been drinking tons of water, my BP is even lower than usual, and I have been in the bathroom multiple times every hour...I am assuming that is why my BP is lower. Sorry if that is too much info! I am hoping that over the next week or two things will even out. Quote Link to comment Share on other sites More sharing options...
dancer65 Posted March 11, 2015 Report Share Posted March 11, 2015 I noticed a small improvement in the first week but it took me about a month before I started seeing a significant difference. My brain fog and memory improved as well as the dizziness. I too was very thirsty and I found drinking electrolytes helped enormously with the tremors and the constant leg pain (I make my own electrolyte drinks and add salt and water as I avoid sugar) Quote Link to comment Share on other sites More sharing options...
bethanyh Posted March 12, 2015 Author Report Share Posted March 12, 2015 What do you make your own electrolyte drinks from? I am curious about making my own instead of the expense of always buying something. Quote Link to comment Share on other sites More sharing options...
Afpayne Posted March 12, 2015 Report Share Posted March 12, 2015 My doctor is apprehensive about mirodrine due to some of the long term side effects. We haven't done anything sbout my bp weirdness. But he doesn't seem as concerned about my light headed episodes as I am since my bp with my massive salt intake and fluid intake keeps me around 105-110/ 50-65. But we're still trying to get my beta blocker figured out and he and I both agree one drug at a time so we can see what affect each is having on my symptoms. There are also numerous electrolyte drink recipes on pinterest (who doesn't have Pinterest!) most start with coconut water. Before my pots I did triathlons for fun and my drink mix included coconut water. Coconut water is your friend. There are freeze dried coconut powder concentrate on Amazon too. Quote Link to comment Share on other sites More sharing options...
bethanyh Posted March 12, 2015 Author Report Share Posted March 12, 2015 Afpayne, thanks for sharing, I will check out some of the recipes. I would be ecstatic if my BP numbers were that high! I definitely agree that one drug at a time is important so you know what it is/is not doing, that is one thing I like about my current cardio., he feels the same way. Quote Link to comment Share on other sites More sharing options...
dancer65 Posted March 13, 2015 Report Share Posted March 13, 2015 I use oranges, lemons, limes in a juicer and coconut or spring water, bit of salt. I make a batch for a day but it will keep for a couple in the fridge Quote Link to comment Share on other sites More sharing options...
Claired Posted March 13, 2015 Report Share Posted March 13, 2015 I definitely recommend giving Florinef (and the other ones) a good try before switching to a new one. I gave up on florinef too quickly because it wasn't working but I regret that now (I 'm sure I could go back on it in the future if I wanted though). My cardio said it may take two weeks, but some people here have said a month. I did the same thing as you, weaned myself on and off of it. Good thing he has you taking potassium; I've heard that that has to be monitored for a little while when you first start florinef. Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted March 29, 2015 Report Share Posted March 29, 2015 I did poorly with midodrine, and midodrine/florinef combo. I lasted 2 weeks on midodrine, withdrew from it and a beta blocker in the hospital and switched just to florinef. Quote Link to comment Share on other sites More sharing options...
bethanyh Posted March 29, 2015 Author Report Share Posted March 29, 2015 I was on the Florinef for one week (breaking the tablets in half) but after two days of taking the Florinef, I had a terrible sore throat. I talked to my primary doctor who said to stop the Florinef and see if my body clears of any cold symptoms on its own then retry the Florinef. I will be starting it again this week. Fingers crossed!! I am still on the baby dose of Midodrine (2.5mg, 3x daily) and it does not seem to be doing anything at all to increase my BP. My primary wants to up my dose to .5mg 3x daily, however my cardiologist wants me to eventually wean off of Midodrine so he does not want to adjust the medication. Does anyone have advice on this? I have also read another thread that is asking about generic brands of Midodrine. I take the Mylan and it seems that many people have not found this brand effective for them. Could it be the brand or is it because of being on such a small dose?? Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 29, 2015 Report Share Posted March 29, 2015 Hi Bethany, When I tried the midodrine and told my pots neuro it wasn't doing anything to help me, he had me stop it for a week to see if my symptoms increased. He said sometimes we are getting a benefit from a med but don't realize it until we're off of it. Unfortunately, when I went off of it for the week trial, I didn't feel any better or worse and proved it was not helping me and therefore stopped it permanently. But, if the docs are ok with it, it is one way to verify the efficacy of a particular treatment. You just have to be careful not to change anything else the week of the trial so you know what's affecting what. Quote Link to comment Share on other sites More sharing options...
bethanyh Posted March 30, 2015 Author Report Share Posted March 30, 2015 Thank you for this advice, Katy, it is a great suggestion. Since I am supposed to start the Florinef this week I think I will stay on the Midodrine then after some time (a month or so) on the Florinef I will give your suggestion a try. You are right, I do not want to change anything else so I am able to better determine what the medication is doing. Thanks again! Quote Link to comment Share on other sites More sharing options...
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