Question About Flurinef?

[Gemma]

Hi everyone. I just switched from midodrin 2.5 mg 3 times a day to flurinef 0.05 once a day. At first i felt great, almost no lightheadedness. But on day 5 i started feeling like i am coming up with a flu. I feel chills, hot flashes, tired, harder to breath, pain in the back of my head, and palpitations are back. I know its a steroid and maybe my body just needs time to adjust, but i am a little scared of feeling this way because it is a steroid. Anyone experienced anything similar? I asked my doctor and he said that feeling like coming up with a flu is not common side effect and maybe I can give it some more time to try and see. I really wanted this med to work because it helped with lightheadedness, plus midodrine was giving me more chest pains. But now due to these new symptoms I don't know if i should continue. Also, can anyone tell me what is a long term negative of taking this steroid med.

Thanks.

[Becia]

I have no advice, but I am on both, and have the same exact problems... I am so glad I'm not alone. My doctor told me I just needed to suck it up.

[looneymom]

Hi Gemma

My son was on this medication for a long time but he used it with the midodrine. He never did have a side effect like you are describing. I would give it some time. Maybe you have gotten ahold of some type of virus and your body is trying to fight it off. I'm surprised that your doctor did not keep you on these two medications together. My son has been off the florinif for a while and his blood pressure is staying up. So his body has outgrown the use of this medication. Just hang in there and see if will help. Finding the right medications for POTS is trial and error.

Rachel

[Guest Alex]

I was on florinef for a year and have never experienced any such side effects, except for the headaches, but we're all different. It may take a while for your body to adjust to the medication and I can't help but wonder if what you're dealing with may have to do with a potassium deficit. Florinef is notorious for depleting your body of potassium (and calcium and magnesium!). I was on a lot less florinef than you Gemma - only 0.2 mg a day and was supplementing almost 5 grams of potassium. (for what it's worth a 0.5 mg florinef is quite a large dose). Most drs recommend monitoring your blood potassium while on this med and supplementing according to the findings.

Also, Gemma, florinef is indeed a steroid, but it's mostly a mineralocorticosteroid. It is also a glucocorticosteroid, but you'd need to be taking much larger doses than those prescribed for POTS for its "typical" steroid properties to manifest themselves.

I hope this helps.

Alex

[Gemma]

Hi Alex, thanks for reply. Sorry i wrote .5 and meant to write .05. I had a blood test done at ER and my potassium was 3.5, calcium and magnesium was normal. Yesterday i didn't have that feeling anymore, but i feel like its harder for me to breath. Today i didn't take the med and want to see what happens. I saw my cardio assistant yesterday and she recommended to try 1/4 of 0.1 pill. My concern now is looking at my blood test result from the ER is that my GFR was down to 79. In june it was 141 and now it is 79, and it says that below 60 is chronic kidney disease. So this now concerns me a lot. I wonder if midodrine or flurinef could have caused that, because since june those are the only 2 drugs that I added to my system. My GFR was always average of 120 with a lowest of 110.

[Gemma]

Also, how did you get off flurinef. I heard you need to taper off this drug. And did your BP improve after you got off or it went down again once you got off the drug. I just wonder if fluinef can somehow help stabilize the Low BP, or it just temporary relieve while on the drug.

Also, looneymom you mentioned that your son got off the drug after taking it for sometime and his BP was stabilized. So you think flurinef helped stabilize it somehow, or it didn't do much. I remember you said before that he is on midodrine, so you think thats keeping his BP a little higher?

Thanks everyone.

[looneymom]

Hi Gemma,

In the beginning my son did need the florinif. It did help him retain the fluids but my son was having severe scalp pain with a headache. So the doctor agreed to wean him off to see if it would relive this symptom. My son still has his headache along with the severe scalp pain. However his blood pressure continues to stay up. So at this time he has not been started back on the florinif. My son only took 2mg in the morning. I think the flornif did help but for some reason his body does not seem to need it to help keep his blood pressure up. My son is still on a very high dose of midodine and does drink 2-3 liters of fluid a day. He also supplements with salt tablets. The salt tablets are taken after meals and snacks. He does salt his food but this has never been enough for his body. He normally takes 2 grams after meals and 1 gram of salt after a snack.

[Gemma]

Hi looneymon,

I was on midodrine for a month and a half, started with 2.5 two times a day, then increased to 3 times a day. Still had lightheadness and increased chest pains. So i asked doc if i can try flurinef again and he advised this time to take only half of 0.1 pill, because last time when i took the whole 0.1 pill I ended up in ER with full blown panick attack. Now it does seem to help with lightheadness, but i still feel more anxious with it and I do take xanax 3 times a day. I just have this constant fear of something happening and that something going on with my heart. The chills and hot flashes that i described earlier went away after 3 days, so probably body was adjusting. Doctor recomended to take only 1/4 of pill now, because maybe it was too much. However, today i didnt take it and want to see if my BP starts droping again once I am again without midodrine or flurinef. I will try to drink beets juice in the morning to increase my BP, i read nline that it helps. So will see. I really want to be off steroids as I plan on getting pregnant once I tapper off xanax and really do not want to add another drug to my system that will require tappering off also. But ofcourse I understand that if my body will need those meds I will have to continue taking them.

[Gemma]

I also hope you finding some answers for your sons condition. Send me a message of whats new with him and if you were able to see some more docs and if any progress so far.

[Guest Alex]

Gemma,

I weaned myself off over 8 weeks. I started at 0.1 mg AM and 0.1 mg PM and I cut 1/4 pill every week alternating between cutting the morning and the evening dose: week 1- 1 pill AM and 3/4 pill PM; week 2- 3/4 pill AM and 3/4 pill PM and so on. My BP has always been around 100-110/70 before POTS and florinef, and my dr thought it was too low for me and considered florinef will help me boost it. Florinef made my BP spike every now and then to levels that were extremely uncomfortable and borderline dangerous. This combined with the other side effects I had from it made me want to discontinue using the drug. Now my BP is back to its normal, and while I do experience some lower levels every now and then, I'd rather "fix" that by drinking extra fluids. I doubt florinef has ever helped lower my HR.

Hope this helps.

Alex

[brethor9]

Actually I am one of the few that has reacted to Florinef more like a general steroid.....after being on it for 3 years I have been tapering down slowly because I was showing Cushing like symptoms (moon face, swelling around neck and back of shoulders (humpback) and I wasn't on a super high dose..... my specialist said that any steroid can cause these symptoms in SOME people because it builds up in the body especially the longer you are on it....this drug has been a love/ hate relationship for me after being off of it for several weeks I just got slapped back on it because my system was crashing too hard ugggh........its such a catch 22 with this illness

Bren