Florinef after effects

[ally771]

Dear all, I had very low blood pressure and other adrenal problems, though not Addison's, and was put on Florinef. From the first day I experienced severe head aches, loss of vision and fainting. On a train on my eleventh day of taking them I collapsed and was vomitting, I therefore took myself off them immediately, despite the warning not to. Since then (two weeks ago) I have had severe muscle twitching, horrible sensations in my legs and arms, loss of appetite, trembling and muscle weakness. My doctor clains the drug is out of my body but my bp is still raised and these side effects haven't gone away. Please help!! any advice is more than welcome! Anyone know of a similar cae?any words of comfort? Thank you so much.

[auntissie]

Just a quick note.  My husband's doctor told him not to drink straight Gatorade.  She said he should sip it slowly and drink water.  She said that if you only drank Gatorade the fluid wouldn't go into the cells properly.  Same  as drinking only water, when you're over hot.  She suggested getting a large Gatorade and taking small sips throughout the day and letting water be the main drink.  I know overloading the kidneys with too much salt and not enough water can cause severe kidney issues.

[Heiferly]

No problem!  Pulse pressure is one of my big "issues" with my dysautonomia, and I've learned that keeping an eye on that as well as the actual systolic and diastolic values can really help me gauge how I'm going and what I can handle that day.  For me, (and again, this can vary from patient to patient, so the numbers here may be different for others) if I notice that my resting pulse pressure is already narrowed to the range of 20-25 in the sitting/lying down positions, I know that I need to stay completely off my feet (wheelchair for transfers and bedrest) that day if I want to avoid syncope and potential injuries.  Because my pulse pressure narrows ~10 mmHg from lying to standing positions, if I start with a pulse pressure of 20 lying down (say, 100/80) and try to stand up, I end up with a BP something like 85/75 and it's lights out for me!  

More information on pulse pressures can be found if you go to the link for the "Introduction to Orthostatic Intolerance" article on this health page:  

http://www.medhelp.org/health_pages/Neurological-Disorders/Further-Reading-on-Dysautonomia/show/696?cid=196

(By the way, little plug here:  anyone who hasn't checked out our forum's health pages totally should!  Lots of great info in there if you poke around!  You can find them by clicking the link at the top right of this page that says "Health Pages" with a little yellow button that has a picture of "pages" of paper on it.  You may notice that we share our health pages section with other Neurology Communities, so just keep your eyes peeled for sections labeled Dysautonomia.)

[AMO]

heiferly,
thank youu  mentioing andexplaining this narrow pulse pressure. NOw i know I will ask my doctors since now    see this ,
ally,  i  am sorry fllorinef  did that to you. i hop   e you can find something to help you.
amo

[Heiferly]

Do you have a BP cuff at home?  Do you know what your blood pressure is when you are standing or lying down (which is to say, if it is the same as when you are sitting or if it is higher or lower)?

A blood pressure of 80/60 is a narrowed pulse pressure, and though it's by no means definitive of anything (and I am NOT a doctor), it does raise a bit of a red flag for me, which is why I'm further pursuing the question of your pressures in other positions.  Many patients who faint (or nearly faint) from orthostatic intolerance disorders will have pulse pressures that "narrow" when they are standing over a period of time (vs. sitting/lying down).  A normal resting pulse pressure (the difference between the top and bottom number of your blood pressure) is 40.  As I understand it from the medical literature I've read, though the actual limit varies from patient to patient, everyone has some threshold below which they cannot sustain consciousness if their pulse pressure narrows that far.  

[ally771]

Thank you so much for your response. Am feeling a little more stable but it turns out the pains in my back, legs and arms may be connected to the fact that I was suffering from accute pancreatitis (muscus in stool, pain in my upper back etc). The tingeling and numbness seem to be connected with bowel. I have read that Florinef can cause Pancreatitis if given in heavy doses. I feel a real mess. My specialist this morning suggested that the collapses are linked to my hormones (estrogen highs and lows which bloat out my body and then suddenly shrink after my period). Numbness still in hands and arms if they are still for too long a time.
My resting BP in 80/60 usually but it varies. Thanks so much for all the advice and support, I don't want to winge to friends and family as hate being so ill, this is really helpful.

[Heiferly]

The absolute first thing I would have done if it has none been done already since you stopped taking the fludrocortisone is to have your potassium level drawn.  Fludro. can contribute to hypokalemia (low potassium), which for some reason can be an electrolyte imbalance that troubles patients with dysautonomia from time to time anyway.  Hypokalemia symptoms include some of the symptoms you are reporting, particularly with your muscles:

http://www.medhelp.org/medical-information/show/679/Hypokalemia?page=1#sec_11287

Can you be more specific about your blood pressure being elevated, and the low bp you used to have?  Specifically, how did your blood pressure react previously to postural changes?  What were your orthostatic (lying, sitting, standing) BPs like whilst on the drug?  Finally, are your blood pressures the same now as when you were on the drug, or has there been any change?  (Knowing all three is often more telling in dysautonomia than just giving an overall estimation of low vs. high; this may give more insight into what is activity of the drug vs. what may be some confounding variable.)  

Looking forward to hearing back from you and hoping you're doing better or at least coping alright,
Heiferly.

[leydengs]

Hi ally771.  I was given florinef as well and I couldn't sleep.  It caused such severe chest pains and pressure in my chest that I had to go to the ER.  It still never raised my BP.  I was then switched to Midodrine which was going to cost me over $100/month so I stopped all meds and now I concentrate on my sodium levels.  If I start feeling dizzy I will eat some hard boiled eggs with salt on them. I stopped drinking water all together, I only drink gatorade or other drinks that have sodium in them.  I'm not suggesting you stop your meds because I don't know how severe your condition this has really worked for me.

[LivingInHope]

Is your blood pressure at an abnormally high level now?  Have you had your adrenal hormones checked since discontinuing the medication?  It took florinef very briefly, didn't like the side effects and went off.  I think it gave me a headache.  Midodrine gave me increased chest pains.  Have you had your potassium checked to make sure it isn't too low?

[ally771]

Thank you so much for your reply- how kind of you to take the time :) I was on them for two weeks and have been off them just over two but still have horrible side effects. The docs have  told me there is no way it can be the drug, as they put me on a very heavy dose! But I know my own body I have NEVER experienced these side effects before the drug and now still have them. Plus, my BP is still raised so how can they say they are out of my body? any advice much appreciated xxx

[tonyad]

  Hi  there and Welcome to the Forum :)

   I have also taken Florinef and was having (I feel) a bad reaction from it and took
myself off of it too. Although mine was not as bad as yours. how long were you on it for?

    I took mine for a couple of days...felt "Not right" chest pressure, and just ill feeling. i stopped taking it for a few days ...felt better...started it again...same thing happened so I again stopped taking it. Told ElectoPhysiologist about it...he agreed I was having some sort of a reaction to it.

     Are you on any other new medications recently??  w/ in the last 2 weeks??

I am sorry that you are feeling so bad and that you passed out. your doctor though should be trying to help figure out what is going on as this is not normal for you.

~Tonya