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never knew florinef could do this to anyone


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Hey all, my gradnfather has a dysautonomia caused by his diabetes. His bp crashed when he stands so he was put on florinef about 6 weeks ago. And epilim- which is **** pointless as he's not epileptic. But anyway. Today he was really pale and my mum rang the doctor because he just didn't seem right.

They took blood and we got a call at 8.30 PM from a doctor in the blood lab saying they needed to come and get him now- when my mum got to my grandad's flat, there were 3 doctors waiting.

His potassium level is down to 2! Isn't it meant to be like 140+?

They said that if she hadn't taken him to the Doctor today he'd have died!

They're saying it is caused by the florinef.

How scary is that. OH MY GOD. I can't believe a drug could be so dangerous, or that no one would monitor him more closely to watch out for these things happening! :o:)

Do Doctors just think that older folks don't matter? He's my gradnfather and I love him to bits. He matters to his family!

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Hi! I hear your frustration!!!

I'm glad they found this problem though and he's getting help.

Generally, a normal potassium is 3.5 to 5 but some labs vary slightly in this normal range.

Yes, the Dr's should have been looking for this!!!

Once they get his levels back up he will need to be monitored on a regular basis to ensure his level is ok.

Hope he starts feeling much better soon.

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Sorry this happened to your grandfather, Persephone. I've read plenty of posts on this forum about the need for frequent potassium level checks if you're on Florinef. This is a good reminder to everyone to be vigilent in their care and to learn what low potassium side effects look like!

best to you and your family,

m

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sorry to learn your grandpop had such a hard time on florinef. Most docs here in the US who specialize in dysautonomia prescribe supplemental potassium when taking florinef. I was on 8 mq's each day.

nina

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Hi Persephone,

I am sorry that your grand father was so sick because the doctor who takes care of him did not know to follow-up on the medication. I am glad he was rescued on time. I think that usually they have to be tested every month for potassium level.

Ernie

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Thanks for the kind words, everyone! It took another 6 hours for him to get potassium after the doctor said he needed it. Honestly, the British health care system is DISGUSTING sometimes. One of the nurses had a saline drip and chucked it on his bed. Then she turned and said to my mother "I know I should putthis up, but i've got another punter to see." Then she rolled her eyes.

My grandfather was a senior civil servant for over forty years. He's worked hard all his life, has NEVER smoked, gambled or drunk alcohol. He is NOT a PUNTER! My mother is outraged. I've typed up a comlaint and been in touch with the Patient Liaison Dept. I told them I wanted a full investigation into the appalling treatment my grandfather was given.

So I guess we'll need to wait and see what happens.

Thanks again for your support, guys.

I was VERY interested to read about potassium supplements being given, and regular monitoring of Potassium levels. Is this the norm in the states? Who should I complain against for negligence? The hospital Dr who put him on it, or the GP who never monitored potassium levels? Or just EVERYONE cos their uselssness always seems like a such a TEAM effort? :huh::(

I love my Papa, I don't think I could cope if anything happened to him. :(:(

Please pray for him.

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Hi Persephone,

I am sorry that your grand father is still not getting well treated by the hospital. There is no reason for the nurse to say something like this.

In Canada the doctor prescribing the medication is responsible for the follow-up on side effects.

Would you mind explaining what a "punter" is?

I will be praying for you and your grand father.

Ernie

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See below pasted...sorry it's so long but I was hoping it would help everyone.

Please read especially toward the end, in your Grandfathers' case under "Geriatric use". I'm hoping in your letter to the hospital you could attach this information (you can do a drug search on the web for a better copy/printout of this) and remind them they should have check all of his electrolyte levels PRIOR to starting him on this medication. Hope this helps!!

WARNINGS

BECAUSE OF ITS MARKED EFFECT ON SODIUM RETENTION, THE USE OF FLUDROCORTISONE ACETATE IN THE TREATMENT OF CONDITIONS OTHER THAN THOSE INDICATED HEREIN IS NOT ADVISED.

Corticosteroids may mask some signs of infection, and new infections may appear during their use. There may be decreased resistance and inability to localize infection when corticosteroids are used. If an infection occurs during fludrocortisone acetate therapy, it should be promptly controlled by suitable antimicrobial therapy.

Prolonged use of corticosteroids may produce posterior subcapsular cataracts, glaucoma with possible damage to the optic nerves, and may enhance the establishment of secondary ocular infections due to fungi or viruses.

Average and large doses of hydrocortisone or cortisone can cause elevation of blood pressure, salt and water retention, and increased excretion of potassium. These effects are less likely to occur with the synthetic derivatives except when used in large doses. However, since fludrocortisone acetate is a potent mineralocorticoid, both the dosage and salt intake should be carefully monitored in order to avoid the development of hypertension, edema, or weight gain. Periodic checking of serum electrolyte levels is advisable during prolonged therapy; dietary salt restriction and potassium supplementation may be necessary. All corticosteroids increase calcium excretion.

Patients should not be vaccinated against smallpox while on corticosteroid therapy. Other immunization procedures should not be undertaken in patients who are on corticosteroids, especially on high dose, because of possible hazards of neurological complications and a lack of antibody response.

The use of Florinef Acetate (Fludrocortisone Acetate Tablets USP) in patients with active tuberculosis should be restricted to those cases of fulminating or disseminated tuberculosis in which the corticosteroid is used for the management of the disease in conjunction with an appropriate antituberculous regimen. If corticosteroids are indicated in patients with latent tuberculosis or tuberculin reactivity, close observation is necessary since reactivation of the disease may occur. During prolonged corticosteroid therapy these patients should receive chemoprophylaxis.

Children who are on immunosuppressant drugs are more susceptible to infections than healthy children. Chicken pox and measles, for example, can have a more serious or even fatal course in children on immunosuppressant corticosteroids. In such children, or in adults who have not had these diseases, particular care should be taken to avoid exposure. If exposed, therapy with varicella zoster immune globulin (VZIG) or pooled intravenous immunoglobulin (IVIG), as appropriate, may be indicated. If chicken pox develops, treatment with antiviral agents may be considered.

PRECAUTIONS

General

Adverse reactions to corticosteroids may be produced by too rapid withdrawal or by continued use of large doses. To avoid drug-induced adrenal insufficiency, supportive dosage may be required in times of stress (such as trauma, surgery, or severe illness) both during treatment with fludrocortisone acetate and for a year afterwards.

There is an enhanced corticosteroid effect in patients with hypothyroidism and in those with cirrhosis.

Corticosteroids should be used cautiously in patients with ocular herpes simplex because of possible corneal perforation.

The lowest possible dose of corticosteroid should be used to control the condition being treated. A gradual reduction in dosage should be made when possible.

Psychic derangements may appear when corticosteroids are used. These may range from euphoria, insomnia, mood swings, personality changes, and severe depression to frank psychotic manifestations. Existing emotional instability or psychotic tendencies may also be aggravated by corticosteroids.

Aspirin should be used cautiously in conjunction with corticosteroids in patients with hypoprothrombinemia.

Corticosteroids should be used with caution in patients with nonspecific ulcerative colitis if there is a probability of impending perforation, abscess, or other pyogenic infection. Corticosteroids should also be used cautiously in patients with diverticulitis, fresh intestinal anastomoses, active or latent peptic ulcer, renal insufficiency, hypertension, osteoporosis, and myasthenia gravis.

Laboratory Tests

Patients should be monitored regularly for blood pressure determinations and serum electrolyte determinations (see WARNINGS).

Carcinogenesis, Mutagenesis, Impairment of Fertility

Adequate studies have not been performed in animals to determine whether fludrocortisone acetate has carcinogenic or mutagenic activity or whether it affects fertility in males or females.

Pregnancy

Category C

Adequate animal reproduction studies have not been conducted with fludrocortisone acetate. However, many corticosteroids have been shown to be teratogenic in laboratory animals at low doses. Teratogenicity of these agents in man has not been demonstrated. It is not known whether fludrocortisone acetate can cause fetal harm when administered to a pregnant woman or can affect reproduction capacity. Fludrocortisone acetate should be given to a pregnant woman only if clearly needed.

Pregnancy

Nonteratogenic Effects

Infants born of mothers who have received substantial doses of fludrocortisone acetate during pregnancy should be carefully observed for signs of hypoadrenalism.

Maternal treatment with corticosteroids should be carefully documented in the infant?s medical records to assist in follow up.

Nursing Mothers

Corticosteroids are found in the breast milk of lactating women receiving systemic therapy with these agents. Caution should be exercised when fludrocortisone acetate is administered to a nursing woman.

GERIATRIC USE

Elderly subjects may commonly have conditions that may be exacerbated by fludrocortisone therapy including, but not limited to, hypertension, edema, hypokalemia, congestive heart failure, cataracts, glaucoma, increased intraocular pressure, renal insufficiency, and osteoporisis (see WARNINGS, PRECAUTIONS and ADVERSE REACTIONS). Elderly subjects may also commonly be taking concomitant drug therapy such as digitalis glycosides, oral anticoagulants, antidiabetic drugs (oral agents and insulin), and aspirin which may interact with fludrocortisone (see PRECAUTIONS-Drug Interactions).

In general, dose selection for an elderly patient should be cautious, usually starting at the low end of the dosing range, reflecting the greater frequency of decreased hepatic, renal, or cardiac function, and of concomitant disease or other drug therapy.

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Poohbear, THANKYOU! this is brilliant. Just a quick question though- please could you post the URL of where you got this from?

and to those who don't know, a punter is, in modern day english--a bit of a derogatory term used to describe people who gamble, drink or smoke to excess and generally are sort of no good. It's used to describe people in pubs a lot, and football hooligans.

It's not a pleasant term. It implies people who you have to offer service to but don't want to-

e.g a barmaid might say she hates having her cleavage stared at by punters, but that they are there for her to serve drinks to.

My grandfather is the most austere fellow you could ever meet! :huh:

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Ok- now they tell me my grandfather's had a heart attack. I go in today and his sat levels are 90. His resp rate is 25-32 and he's finding it hard to stay with us. His pulse is doing 105-120.

I am SO angry. He only got a potassium drip TODAY! They had him taking the odd tablet yesterday. What is WITH these people?

I'm so worried about him! and my graduation is a week from Tuesday- the timing just could not be any worse (My graduation is in St Andrews- over 500 miles away!)

What shall I do. I don't know what to do. I am angry with everyone. I want to sue. I want to help my mother. How could a vulnerable senior citizen be neglected and left to cope on his own with a drug known to cause potassium level defects.

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Guest Julia59

Persephone,

I'm so sorry to hear about the terrible treatment and neglect your grandfather has recieved. Yes you should sue.

My case was very minor in comparrison to your grandfathers---so I just wrote a letter to the president of the hospital that my doc was affiliated with----for his abusive behavior. Your case is way beyond that, and I would hire an attorney.

Your grandfather will be in my prayers, and also sending prayers for you, and the rest your family.

Julie :0)

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Thanks Julia. We just can't believ so much could happen to one family in one year- what with the stroke he had last year, then my POTS and NCS and EDS. And mum's arthritis, Dad's arm and my uncle's MS! I just worry in case people don't believe me- I would be sceptical of someone telling me such a catalogue- I'm sure people must suspect me of exaggeration. but I swear it's all true. If only it WAS exaggeration!

I don't know what to do about my graduation. Or about these inept doctors. :(

Or to help my poor Papa :(:(:(

I think you and I are going to break down together, Julia!

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Thanks Julia. We just can't believ so much could happen to one family in one year- what with the stroke he had last year, then my POTS and NCS and EDS. And mum's arthritis, Dad's arm and my uncle's MS! I just worry in case people don't believe me- I would be sceptical of someone telling me such a catalogue- I'm sure people must suspect me of exaggeration. but I swear it's all true. If only it WAS exaggeration!

I don't know what to do about my graduation. Or about these inept doctors. :(

Or to help my poor Papa :(:(:(

I think you and I are going to break down together, Julia!

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Hi,

I would wait until the day before graduation before deciding to go. I would consider how my grand father and myself are doing. Also would I be able to help my family more if I don't go to my graduation.

Ernie

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My thoughts are with you and your family and I hope your Grandfather starts improving quickly.

I know it's hard to make decisions, especially at a time when you are in crisis! In terms of suing it may be warranted but, I wouldn't jump into it just yet. I say this simply because if you start the legal process now and the hospital/Dr's hear of it your Grandfather may not get the care he deserves. I'm not saying that it's right or fair but our world is cruel and evil sometimes. Instead, I would try to "fight within the system"....be as sweet as you can, ask for a patient representative or advocate, see if you can start to get copies of his complete medical records (lie if you have to and tell them you want to send the records to a specialist for a second opinion). Ask if you can meet with the Dr. and question why his electrolytes weren't checked prior to his being put on this medication. Write down what he says so you have a record of it.

You may want to consult an attorney at this point for advice though.

I agree that waiting until the day you have to decide about your graduation is the best thing. A lot can happen in a few days. When the time comes try to make your decision on what you feel is best AND what you feel will leave you with the least or little regret. Maybe your Grandfather will be better but not well enough to go so you will have to decide what is best and maybe he would want you to go and take lots of pictures you could share later or maybe, the graduation ceremony isn't that important to you so missing the event would not bother you as much. It's a very personal decision and I can appreciate your struggle to make it!!

Keep us posted on how you all are!

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Hi all. His resp rate is all over the place- up to 50 at times, according to the monitor. when I asked the nurse what they were doing about it, I was told "don't worry, those machines aren't accurate"- well why the **** used them then?

his pulse is running at about 100. I don't know what's going to happen.

Thre nurses say the 'infection' around his lungs and heart will ease off in a couple ofd days- how the **** do they know?

He is SO tired he can hardly keep his eyes open.

I don't know why all this has happened to me, to our family. Haven't we suffered enough?

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just an update- he is MILES better now- sitting up, has colour- more colour than he's had since he was put on that stupid drug weeks and weeks ago.What a relief- he's still in CCU but I keep praying and I *Think* he just might pull through... :huh:

Our GP this morning says on his dicharge letter from hospital a month ago they wanted a 'follow up outpaitnets' appt inSIX, yes SIX weeks time! Is six weeks without potassium long enough to do damage in a vulnerable person?

Perhaps some of you could let me know.

Thanks for your support guys. :)

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Hi,

When I took Florinef they tested my potassium after 3 weeks and it was down to 2.9 and I was very weak. So I guess 6 weeks is a long time for a senior citizen.

I am glad your grand father is doing much better.

Ernie

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Persephone,

I am so glad to hear your Grandfather is doing better!!!!! I have thought of you often in the last few days. I'm amazed at how much I care about all of you and I've never even met you!

When I was on florinef, I had to push hard to get tested for postassium. Even the doc who put me on it just brushed that aside when I asked him directly about potassium loss. He told me to eat a banana each day. I hate bananas! I got to where I would feel like I would barf if I took another bite. So I researched other foods high in it and found several other foods high in potassium. My favorites were avacados, cantaloupe and Honeydew melon. If you'd like the whole list I found I could send it to you.

Thank you for keeping us updated on your Grandfather,

~Roselover

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