Florinef Tapering ?

[k&ajsmom]

Hi guys,

Its been a rough week. My daughter has pneumonia and autonaumic cardiac abnormality diagnosis this week, my mom totaled her car and then got lyme diagnosis and then we all got food posioning.

Well everyone was getting well but me. I was feeling so weak and sick i decided to go to the er. Thank goodness i did cause my pottassium was low, 2.8 and ddimers wicked high. And this was not due to the d"s or vomiting cause i stopped those as soon as they started. All worked out inconclusive but the doc was clueless, though kind and understanding. He didnt even understand the concept of florinef for bp and that its dumps ur pottassium. Anyways i got. Some extra pottassium and half a bag of saline before they kicked me out...stingy lol

Also my bp was higher than ever 150/ 85 for me this has never happened. Im thinking of getting off florinef even though bp came down im tired of pottassium loading and having close calls with it.

How have u guys faired with taperiing? Of course ill talk to my doc but he is one to think cold turkey is ok..ugh thx for listening and take care

[tinkerbella]

I always just stopped, as it made me so miserable. : ( Best of luck to you! ((((Hugs))))

[Katybug]

I had to cold turkey off of it and I didn't have any adverse reaction to it. But, there is definitely a danger to not tapering involving adrenal crisis.

[Guest Alex]

Hi,

so sorry to hear about your week. It's pretty tough when your loved ones have to deal with health issues.

Here what I did when I tapered my florinef - I cut the 0.1 mg pills in 1/4 and I reduced my intake by 1/4 every week.

week 1 - 3/4 pill a day (I was actually taking a 1/2 and a 1/4 pill a day)

week 2 - 1/2 pill a day (You don't need to cut the pills in 1/4 for this...duh)

week 3 - 1/4 pill a day.

I had no problems when I finished my taper, in fact a series of my problems vanished, so I am now certain those were side effects.

Stopping florinef cold turkey comes with some severe health risks - one of them being the chance of Addisonian crisis which is life threatening, but of course we're all different and people can come of it with no ill effects whatsoever.

I didn't want to take chances though and tapered much slower than my dr said I should.

My dr suggested to just take 1/2 pill a day for a week, and then stop altogether, but I felt safer stretching it a bit.

Also, my dr suggested to keep an eye on my BP - if it were to drop too low then I was to 'reinstate' florinef eventually at a lower dose (say 3/4 pill instead of one whole pill).

In terms of potassium, it took me a long time to figure out that I needed 4 x 600 mg pills of potassium for each 1 x 0.1 mg florinef pill, and boy is that potassium rough on the stomach or what.

Best of luck and hang in there

Hugs,

Alex

[k&ajsmom]

Thx guys,

So two cold turkey and one tapering.

Those that went cold turkey how long were u on it?

Alex,

Im thinking thats what i may do. I just wasnt sure how to approach it. Im on 3000mgs of pottassium now, just doubled it from 1500mg. I was borderline when istarted florinef so i was put on 20meqs and after two months was still holding my numbers at 4.1 so i just dont understand the sudden drop. I have noticed in the last week my face and fingers are swelling. My eyes are especially swollen in the am. Im thinking this is the florinef.

What side effects did u have from florinef if u dont mind me asking? Ive been on it since october at .1 with minor effects till now. Headaches getting worse, swelling, and im suspicous that some arthymias may be worsened by it. Im also having throat and neck pressure like crazy that ive never had before...ugh time to get off this stuff...=( its been helpful with bp but not at this price. How did u fare after stopping it commpletely?

Thanks again oh and yes! It is so brutal on the tummy..i havent been able to eat hardly a bite since ive doubled it..blah

[tinkerbella]

I was on for several months. I felt so bad though I had to stop the madness. I regret the fact that I didn't keep a diary of everything. I have been so physically exhausted and I haven't trained the dog to take notes yet.

I also meant to say that I'm really sorry that you are having such a hard time and if there is anything I can do for you, please now you can count me in as a friend. This life is hard especially the long days of being alone.

I went to salt tabs after stopping Florinef. Then soon after iv therapy. Everyone has to do what is right for them.

[k&ajsmom]

Thx so much bellamia,

Its wonderful have u guys as friends who "get it". I honestly felt no effects good nor bad for the longest time till now. However being that i dont have adrenal issues u gotta wonder what effect this stuff has after awhile. Im def. Ready to give it a go without it.

Ha..if only we could get the dogs to pitch in lol my dog is so old now id have to sign to her to get her to take those notes lol

Thx again and hope ur doing well, this stuff def makes days long and tedious and somehow steals it away just as fast. Blah. (((Huggs))) ttake care =)))

[badhbt]

Sorry you are having so many things to deal with at once. That is a lot to handle even for a healthy person.

I wonder what made them draw your D-dimer? I know mine was high, but they blamed it on recent surgery. I have seen other people say that they have high results too. I wonder what this means?

Also, may I ask how you got your lyme diagnosis? Did you go through Igenex?

[Guest Alex]

I was on it for 1 year give or take.

Side effects... Oh boy - spikes in blood pressure, 24/7 headaches, my periods were way too frequent and much heavier than ever (sorry if tmi), swollen feet at night, swollen hands and face in the morning.

All these problems are gone now, thank goodness, and my POTS sx haven't really been any worse than before.

Please consider tapering - not because i did that, simply because the risks associated with stopping it cold turkey are too big - check with a pharmacist or a dr, they should confirm.

I can't find a link right now, but an Addisonian crisis is not something to joke about.

Keep us posted.

Hugs,

Alex

[Katybug]

I was on it for over a year. I had been put on high dose prednisone as well and 3 weeks into the prednisone treatment I started to have a bad reaction.....swollen like I was stung by bees, skin turned bright red like sunburn and was stinging, severe joint pain. I was was in jeopardy of ending up in the ER. So, I called the doc and he said to stop both immediately because he was afraid I was developing Stevens -Johnson's Syndrome which is bad news bears (your skin can peel off of you!) Steroids can cause this syndrome so I had no option but to go cold turkey. But, I have to say if I wasn't in an immediate crisis situation, I would have chosen to taper off for safety reasons.

[tinkerbella]

I wonder with all your swelling and head aches they were just making sure with the ddimmer that you didn't have a blood clot. I know that I test positive and I don't have one. Many people test false positive. They have given me the VQ scan several times to check my lungs.

I think it's amazing all the medical knowledge we have learned from this illness. They have even scanned my legs with ultra sound looking for those clots also after the ddimmer.

Alex is right about the condition she is talking about. Nothing is easy. Have a nice night all.

[k&ajsmom]

Bad,

Its actually my mom who got lyme. She got bit and had the tyypical bullseye rash and was tested by her general physician.

They took ddmer cause they thought i had a clot. I had fever, high bp (for me extremely high) chest and neck tightness etc. They then did a contract cat scan and was cleared. Im not sure why it was high but its the third high dimer theyve drawn. He said it could be from k being low and have muscle fatigue? ? ? I odnt know bout that..lol

Alex..yes. that all sounds too familiar. Except the bp spikes which i had attributed to the low k levels. But maybe not? I def have every other symptom u mentiioned. I will def wean off the florinef, ive read on addisonian crisis and dont want to take a chance there what so ever! I will probaly be cautious like u and check with my doc and follow a similiar if not exact plan to taper...thx! I cant wait to get off of it, just nervous because i am usually so hypotensive ...eek

Katybug, wow that sounds very scary, no wonder u went cold turkey! Ugh what a mess these meds can make in our already confused bodies lol

Bella,

Exactly what happened. They didnt check my legs just my lungs and heart but everytime i go in thats there first assumption...blood clot. Ugh so very glad there wasnt one.

Thx everyone for ur feedback and experiences. They have helped me concrete my desicion and make a plan. Take care!

[tinkerbella]

I was having legs pains as well. I'm in bed most of the time. ; ( I had also torn my knee joint that they felt could have bleed down onto my leg.

Do they keep you on potassium on a daily basis. I take it in my iv and used to take or by mouth. I lose so much with my IBS, so it's important to have it onboard.

[k&ajsmom]

Oh bella that sounds painful..=( hope its well now. I am on 40 meqs a day now, was on 20. But my doctor today said the florinef has to stop and approved the weaning and said stop the k too about the same time. He is gonna have me doing weekly check ups too during this. Ugh ibs or whatever the bowel issues are ridiculous! But i think its the florinef reaking havoc. Ive had a two week horrendous headache and neck pressure even when my bp was low. And im losing so much hair! I tell ya, im losing it somedays lol take care sweetie!

[tinkerbella]

Hang in there sweetie. I went through that phase. I stopped Washing my hair every day. I went to once a week it got much better. the doc had me cut it at the time also to help me stop pulling any out.

Have you been checked for lupus? I got dxed with sfpn today and they think may have lupus. They have thought this for years and years. We all need to pray for one another and send positive energy to one another. I send you HOPE!