s-pot Posted May 7, 2013 Report Share Posted May 7, 2013 Anyone experienced a sudden weight gain on Florinef after several months on it?Im over a year on 0.1mg never had a problem until recent weeks, where I seem to have gained at least half a stone very quickly (two weeks with no lifestyle change)!! Some of it appears to be like retained fluid thou...ankles puffy in the evening. My hair wont take hair dye anymore either...I suspect something to do with florinef also? Florinef has been a dream since I went on it last year....im still symptommatic but can lead a fairly normal life on it as opposed to the complete debilitation of full blown POTS wen it hits. Tapered off it a few weeks ago for a repeat TTT and it was a disaster!However the weight gain is freaking me out big style now! I Battled a very severe eating disorder for 7-8yrs..... I think id rather suffer the symptoms of POT's without florinef than battle an ED relapse!!Id love ta hear if anyone has found this happen with Florinef or am I codding myself n ave bin eating just too many bars of chocolate recently Quote Link to comment Share on other sites More sharing options...
cupcakemomma5 Posted May 9, 2013 Report Share Posted May 9, 2013 I can say, that since I have been on florinef I have gained a lovely 30 pounds...YIKES! Doctor did say that it was normal...Very frustrating, I don't have much of an appetite to begin with due to all the meds, so gaining weight while Not eating is not fun! Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted May 9, 2013 Report Share Posted May 9, 2013 I can say, that since I have been on florinef I have gained a lovely 30 pounds...YIKES! Doctor did say that it was normal...Very frustrating, I don't have much of an appetite to begin with due to all the meds, so gaining weight while Not eating is not fun! Not 30 lbs but more than I wanted. It happened shortly after I started taking it. Now that I'm off florinef I was hoping the weight would come off- it hasn't. Probably exercising and being more active would help...not much of an option for me.Sorry...Alex Quote Link to comment Share on other sites More sharing options...
k&ajsmom Posted May 9, 2013 Report Share Posted May 9, 2013 I gained about 15. Whats strange is i recently tapered off my florinef due to some nasty side effects after almost a year on it, and now im gaining even more weight suddenly without any change in habits, if anything ive increased exercise. Ugh gotta love it =/ Quote Link to comment Share on other sites More sharing options...
brethor9 Posted May 9, 2013 Report Share Posted May 9, 2013 k&ajs mom and alex..... I am totally experiencing the same issue!! My specialist took me off of it because even though I was on a very low dose he said I was showing signs of Cushings Syndrome but now being off of it I seem to be worse...not better ;( I am wondering if it has somehow affected my adrenal output even though they are apparently normal? with us I am finding nothing is ever normal even if the tests say normal and I am trying to be a little more active (hard because of the EDS) and have changed my diet significantly yet nothing is budging.... what's up with that?? arrggghh!!Bren Quote Link to comment Share on other sites More sharing options...
Joann Posted May 9, 2013 Report Share Posted May 9, 2013 Just wanted to say I am not on Florinef, but my hair color is not holding anymore either. Prior to this I could go close to 8 weeks, now I am seeing gray seeping thru almost immediately. Quote Link to comment Share on other sites More sharing options...
k&ajsmom Posted May 10, 2013 Report Share Posted May 10, 2013 Bren,Same issues here, doctor thought poss. cushings beginning. I was having horriable sudden side effects. Swelling, headaches, hair falling out in clumps etc etc...and now its just wont stop. Ive been off a few weeks now and the strangling feeling is slighty better but thats it. I head to the specialist in a few weeks so I def will talk to him about the effects. very frustrating. I however never had any helpful benefits from the florinef so its a lose lose situation, never again. Quote Link to comment Share on other sites More sharing options...
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