Fludrocortisone

[Chirley]

Hi, I am taking a reasonably small dose of Fludrocortisone of 0.1 mgs a day.

I take this to increase my blood pressure.

I have gained 5 kgs over the last 10 days and I feel this is all fluid. I have also been told to have a high salt diet and take a half a salt tablet a day as well.

Over the last few days I have developed edema of my lower legs and feet. My hands are puffy and my face is round and my eyes so swollen that the right eye is hard to keep open. This morning when I got out of bed, I found my chest felt heavy and when I coughed it sounded like it had fluid in my lungs. This improved after being up and around for a while. I rarely pass urine.

I went to see my GP and he said that the F/cortisone was like a strong prednisone and that I was getting Cushing Disease symptoms but that I had no choice but to take the tablet. He took my BP and it was 90/50 so I'm not so sure the tablet is working anyway. (yes, maybe it would be a lot worse without it, I don't know).

I have an appointment for copper treatment on the 30th April and I know I'll get a blood test then but I'm getting worried that at the rate the fluid is increasing , I'm going to start getting medical complications. After just having spent weeks in hospital I really want to avoid any more problems.

My GP didn't offer any advice or treatment, but he was sympathetic and comforting.

Should I be worried, or should I trust they know what they are doing?

Regards

Chirley

[Sally C]

Hi Chirley,
I am certainly no expert on this but I do know that fluid retention like what you have along with not passing urine can't be good for your heart, liver and kidneys. And the salt is adding to your edema.
If I was having your symptoms I would go to a cardiologist or an internist. Something isn't right and I do think your symptoms are cause for concern. It never hurts to get a second opinion.
Best wishes,
Sally

[Marlene]

I second getting another doctor to take a look. I wouldn't want to wait and possibly end up in the emergency room again especially if it can be handled now.

Make sure your kidneys are functioning well and that your electrolytes are OK.

[Chirley]

Hi, I rang my neurologists secretary and left a message.

He just rang back and said that these side effects are expected and that I needed to keep taking the tablets.

Oh well, looks like I'm just being overly anxious or something. I asked if he wanted me to make an appointment to see him to have the medication and neuro problems monitored and he said no. He said he would see me when I have my next escalation of the disease and needed hospital admission!

I am seriously concerned about this doctors attitude. He was the one who told me that I wouldn't be going home from hospital because I needed nursing home placement. He makes me feel as if I'm expendable.

I have just bought a BP monitor on eBay so I can keep a track of it myself and if my BP starts increasing on an ongoing basis, I'll try lowering my dose of F/cortisone and note the results. In other words, I'm going to take control over my own treatment and then no one will be responsible except me.

Im so full of fluid that when I push my finger into the skin over my shin the dent stays there for a long time. I have to sit leaning back to give my lungs room to expand properly. I've never been pregnant but I imagine it feels a bit like having a baby pushing up on the diaphragm.

I have Frusemide tablets but if I take one of those I think that would negate the reason for taking the F/cortisone.

Remember the Helen Reddy song "I am strong, I am invincible, I am woman".

I'll do what I must.

Regards

Chirley

[Marlene]

Chirley,

Please be very careful when reducing that med. This is one you cannot stop cold turkey. I cannot believe they won't see you and check some stuff out. I would think you need to be closely monitored until things stabilize.

I am so sorry you cannot get the attention you need.

If your breathing gets more difficult, then please get it checked out.

[Sally C]

Hey again Chirley,
Again my 2 cents worth. I am still very concerned about the extent of your edema. Since you don't feel good about this doctor anyway I wish you would consider going to a cardiologist. That is the type of doctor my husband went to regarding his blood pressure. Blood pressure and edema go hand in hand with heart function and heart health.
Your filling up with fluid along with little urination sounds very dangerous to me. I don't mean to scare you or undermine what faith you have in your doctor but I've had enough experience with this stuff that if it was me I would have gone to a cardiologist yesterday.
I'll shut up now. Just know we're all concerned.
Keep us posted.
Best wishes!!
Sally

[Lbrown]

Are you taking extra salt but you have low potassium? Salt & potassium need to be in balance. It's not good to have one high and the other one low (if that is the case).

I have some experience with high potassium & low sodium and low range of normal bicarbonate. I take extra salt and baking soda every day, but you have to be careful with electrolytes as messing one up can affect your heart.

Good luck,
Deb

[Chirley]

I agree with all your comments. ALL my doctors know my potassium is low and has been for the last 6 or so blood tests. I was on a potassium IV in hospital and it took 5 days to become normal and that was before the high salt/ Fcort Tx.

I'm still astonished I'm getting told to continue the high salt intake and F/cortisone when I know that sodium pushes potassium out. This was one of the basics I learnt when my little dog who died recently, developed Addisons Disease back in 2003. I asked for a referral for a blood test so I could have my potassium rechecked next week but I was told that it wasn't necessary.

I woke up this morning and I can hardly believe how I look. I already look like someone with Cushings Disease. It's happened so fast. The looks thing doesn't matter I suppose but I feel pretty bad with it. I can't seem to take a deep easy breath like I used to, it's really uncomfortable to breathe. During the night I would wake up puffing and panting just from trying to change positions and at one stage I didn't feel I could breathe properly lying down so I had to sit up for a while.

I don't really know what to do next. You can't stop the tablets because it's dangerous, it's hard to even do a taper because they are so small, how do you anything except halve the dose. (half one day, full the next for a while?) but even this is against doctors advice. I have stopped taking the salt tablet two days ago and have stopped adding salt to my food.

I really don't want to go back to having severe hypotension either because vomiting and fainting isn't a pleasant option, as my hematologist told me, my bones are so brittle that if I fall I could be in trouble.

I'm not normally at a loss for what to do but I am today. I feel something is not right and my doctors aren't listening.

I try not to complain about minor things when I have doctors appointments so I'm very surprised they aren't listening now. In fact, I've been told that I'm considered quite stoic by my hematologist, so why am I being ignored? Does there come a time when they can't do anything to help and I'm being too stupid to recognize that?

Am I now considered so sick that they don't expect me to feel better? is this as good as it's going to get?

If that's what it is, I wish one of the doctors would have the courage to tell
me and I would try to just accept how I feel.

I'm also having difficulty focusing my thoughts and I feel I'm very vague and slow, I have this constant buzzing in my head which doesn't help and because I'm not taking any muscle relaxants, my legs go into spasm at the drop of a hat. All it takes is to lightly touch my body somewhere (if I have an itch and scratch my stomach for instance) my legs spasm and my feet twist and they can stay that way for hours.

Oh Heavens, I sound so pathetic, I'm sorry.

Regards

Chirley

[cathybee1]

Chirley, please call an ambulance and get yourself to emergency. None of this sounds good.

[Sally C]

Amen Catherine!!!!

[Chirley]

Well, I've spoken to my hematologist.

I have a choice. I can miss one dose (and only one) of the Fcort and see if that helps or I can take a half dose again and see how that goes. I cannot go off the drug altogether.

He said if I go off the med, I WILL have BP problems and I WILL collapse and I WILL end up in hospital or nursing home. The choices are one bad med with side effects or hospital/nursing home or worse.

I feel really stupid that I have been in denial that there was no third option. On the positive side, I don't have to take the extra salt, my UTI is gone and I always feel a bit better in the afternoons.

Just to add a bit of humor to my day, I resigned from work on the 10/10/11 and received my total superannuation and accrued leave payout at that time. A pay envelope arrived today for the princely sum of 12 cents! There was no
explanation. I worked for my employer for almost 25 years and my pay was very rarely correct. Obviously, 99% of the mistakes were in my employers favor. One of the few times they've made a mistake in my favor it was for 12 cents, I had to laugh.

Thanks everyone for your concern, looks as if I just have to accept that my life is not going to be the quality I would like but reading the threads on this forum, I feel like I'm whining when so many people have worse problems.

Regards

Chirley

[Marlene]

Chirley,

Believe me....you are not whining. You are going through quite a bit so please use this forum as an outlet. Everyone here is in your corner and only wishes you the best. You've been dealing with some very rare and unique medical complication. And it appears they are not very good at helping you understand and manage your situation. Probably because they don't understand it very well themselves.

Can you get access to a doctor who specializes in palliative care who can oversee your medical care and make sure you get the what you need to ensure a better quality of life? You can combine medical and palliative care. Palliative care will address your needs on more holistic level.

Unfortunately, most doctors can't or won't fill that need for their patients. Especially when they don't have any more answers or options for you. I think your neurologist is of the mindset that he cannot do anything for you unless it's a crisis. And you need more than crisis management.

[evansmom]

Chirley,

I agree with all who are saying to get to an emergency department now. You are filling up with fluid, your kidneys are not keeping your fluid balanced so they are overworkd. With this much extra fluid and the symptoms you are having, I believe you are already in congestive heart failure. I am also very worried that your electrolytes are out of whack, specifically the sodium and potassium. You need to be admitted and receive intravenous diuretcs like lasix to get the fluid off and ease the workload on your heart. The very idea that your doctor has put you on a steriod to elevate your blood pressure rather than trying something like midodrine is very questionable. What is the rason for the low BP in the first place?
You need a medical team in a hospital to work on reversing all this collateral damage and get you on the right therapies.

[Sally C]

Dear Chirley,
I couldn't agree more with Evansmom. I too think you are in congestive heart failure. To say these are "side effects" I think is totally off base. If they are side effects they are identical to heart failure and very dangerous. Please go to a hospital and get under the care of a cardiologist and a kidney doctor at the very least. We may all be wrong but better to be safe than sorry.
I hope you know we are all pushing this out of concern for you.
God Bless,
Sally

[Chirley]

Hi, I took half a dose again last night and I do feel slightly better this morning. I don't seem to be as breathless although I still resemble the Michelin man.

I looked up Midodrine and in Australia it's only available with individual authorization from the Health Department of the Federal Government. While I was looking it up I found a webpage for Austin Hospital and they claim to specialize in autonomic hypotension investigation and treatment. Unfortunately I think Austin Hospital is in Melbourne and at this stage I'm pretty sure I wouldn't get medical clearance to fly.

I don't exactly know why I have a hypotension problem, I was just told it was from the neurological damage. I also don't know why I had a low potassium when I was admitted to hospital which took 5 days of IV potassium to correct (before I started Fcort). The last potassium level I had done it was 3.1 (3.5-
4.5) but I was told it wasnt low enough to worry about, that was before I started blowing up like a balloon.

One thing I have noticed is that I keep getting a tight uncomfortable feeling in my throat. It's worse at night whether I'm sitting up or lying down. It almost feels as if someone is choking me. It's not just at the front of my throat but from one side to the other kind of like from ear to ear but lower down towards the upper chest. Occasionally it turns into outright pain. Would you have any ideas what that might be?

I feel as if I need a referral to a physician who would have a better understanding of BP problems and treatment but I already have a GP, hematologist (will see in 2 weeks), neurologist (no scheduled appts), rehab specialist (no scheduled appts), and Prof of metabolic medicine (no scheduled appts). How many do you have to have before you have to start trusting they
know what they are doing? (I suspect they don't confer with each other).

I have a bottle of Lasix tablets that I was given when I was having regular blood transfusions and I've been very tempted to take one but I'm a bit worried it might lower my potassium even more and make my BP drop, it would also negate any good that the Fcort might be doing. I weighed myself again yesterday and I've now gained 8 kilograms in 3 weeks that's almost 18 pounds! I might start measuring my intake and output to see how much fluid I retain each day or does that sound too hypochondriacal?

Have to go.

Regards

Chirley

[tytd]

Hi Chirley, I admire your fortitude and courage. You have been through a lot. Autonomic hypotension can be very tricky to treat and the Florinef (fludrocortisone) and midodrine are usually tried to get the sitting or standing BP up but they can actually cause hypertension when you are lying down at night. The Florinef works by increasing the retention of salt by the kidneys. It also promotes excretion of potassium so your potassium can certainly get low while on it but that all depends on how your kidneys are functioning. It is not the same as Prednisone. It can cause weight gain, edema and congestive heart failure due to salt retention. Of course the trick is to get enough salt retention to elevate your upright BP without putting a volume load on your heart. I agree with others' suggestion to see a cardiologist or internist in order to rule out congestive heart failure on the Florinef if your GP is unwilling to check this out for you. Do they have any kind of home health system in Australia where a nurse could be sent out to check on you? Since you have a BP monitor, I would start keeping a record of your BP when you are lying down and then when you sit or stand up. Continue to monitor your weight everyday. Get your potassium, magnesium and BUN, creatinine checked. If your BP is high at night lying down, you can try sleeping in a semi-sitting position. I hope your doctors can do some tweaking of your meds and get this problem solved for you. Good luck

[Chirley]

Thanks for that tytd.

I don't have the BP monitor yet. I bought it on eBay and am waiting for delivery.

I don't think there is any service where a nurse can visit or at least, I've never heard of it. My GP took my BP on my last visit (was already on Fcort with edema) and my sitting BP was 90/50. So even with treatment it was okay but certainly not high. I was told the aim is to keep the systolic 90 or higher.

My father has a monitor and before I started the Florinef he tried to take my BP on a couple of occasions and it just wouldn't take a reading....it kept saying error even though it would take his and Mums okay. I assumed my BP was too low to register.

I'm starting to think that the fluid retention can make my brain swell. I noticed that every time I cough my head hurt on top of the low grade headache I have all the time.

I hate to admit it but I had as much as I could stand and gave in and took a Lasix tablet half an hour ago and I am going to slowly wean myself off the Florinef. I suspect my potassium really is low now even though I've been drinking orange juice and having potato at most meals, I don't and never have eaten bananas so that's not an option. I love tomatoes though so poached egg with grilled tomato for breakfast has been thoroughly enjoyed.

I expect I will get a lecture from my hematologist at my next visit but he has always maintained he believes in quality of life over quantity so I'll remind him of this.

Sounds odd but I can't wait to spend the afternoon in the toilet.

Regards

Chirley

[Chirley]

Bliss.

I weighed myself when I took the fluid tablet and again 6 hours later and I've already lost 3 kilograms. I'm still swollen with pitting edema up to the high shin area, swollen face and hands etc but that gurgling feeling in my throat upper chest has gone. I still wheeze if I take a deep breath but I CAN take a deep breath now.

I might get a decent sleep tonight.

Thanks for all your concern. I felt as if my doctors didn't quite understand how bad I was feeling.

Regards

Chirley

[SLB]

Hi Chirley,

sorry to hear about your dramas! sounds awful! on the question about nursing care that comes to your home what about the Blue Nurses? I think they helped us care for my granmother at home years ago? not sure what they offer and if there is a cost though hope u r feeling better soon

Sharnie

[Chirley]

Hi Sharnie,

I rang the local community health service to ask for home help/assessment. I was told there was a three week wait just to get a return phone call to see what kind of assessment I might require. Then I'd have to be deemed eligible to be assessed and if I passed there was quite a long wait for anything to proceed. I just gave up.

Our health system really is in a bad way, worse than most people realize. I worked for Q Health for almost 25 years and all I can say is that is is worse than it has ever been. If you have something serious and acute you won't get better care anywhere but when it comes to ongoing outpatient care, thats when the problems start.

I did get Bluecare to come to my house for an assessment a while ago and they determined that I didn't need any nursing care but would help with cleaning services if I paid a copayment. I happily agreed to that and the cleaner turned up, spent 25 minutes cleaning my house, didn't even clean my shower or toilet and left my tile floor so full of soap suds that I had to pay a private cleaner to come and remove the soap scum.

I thought that the cleaner was being paid a minimum wage by Bluecare who were being subsidized by the government and then paid an extra amount by me. I just didn't see where the tax payer was getting their monies worth. Call me cynical!

Feeling so much better tonight and I haven't even started weaning the steroid yet.

Regards

Chirley

[Marlene]

Good idea to keep track of your weight, input and output. When John underwent treatment, they did that. But somehow they didn't think 30 pounds in one week was excessive!!!!!

This way, when you go to your next dr appt, you'll have some data in addition to your symptoms.

The result of John's excess fluid in the beginning was a build up of fluid in the lining of his lungs. He felt like he had a band squeezing him around his lower rib cage. They gave him lasix which took off a lot of the fluid but did not resolve the lung issue. Eventually, about two and half month, he was at his worst and had still not recovered any counts, the fluid built up around his heart also. They really waited till the last possible moment before intervening.

I'm glad you have some relief but don't go too long before getting things checked out.

Some more sources of potassium:
http://www.healthaliciousness.com/ar...-potassium.php

[Chirley]

Hi Marlene, if it takes that long for medical intervention perhaps the extra fluid just feels a lot worse than it actually is.

I managed to sleep in bed with just a couple of pillows las night instead of spending half the night sitting in a recliner in the lounge. I still felt a bit uncomfortable at times but it was a lot better. This morning I still have a wheeze and a cough but I feel as if I can take a deeper breath and I'm getting more oxygen with each breath as well.

I'm reluctant to take another fluid tablet because the Florinef decreases potassium and so does the Lasix and I already started out with a low level to begin with. I'll wait and see how my breathing goes for the rest of the day and play it by ear.

It is one BEAUTIFUL Sunday here. Never seen better. I would love to be able to take my dog for a walk but her treadmill will have to do.

Regards

Chirley

[cathybee1]

I am glad you are feeling better, Chirley.

[Marlene]

The difference though is that John was either in the hospital or being seen as an outpatient daily. So his blood was drawn daily and they would give IV potassium and magnesium if needed. So please err on the side of caution.

With John, they did not want to do any invasive procedure since he had no white count. We were in race with time. They knew once his counts kicked in, things would resolve so they put off as much as they could but in the end, they needed to address the fluid that built up around his lungs and heart. Lasix only took him so far.

Hope you keep feeling better.

[Chirley]

G'morning.

I've decided against going off the steroids altogether. I missed one dose and planned on taking a half dose the next day and do this for a while gradually decreasing to a quarter tablet etc.

Well I got a hypotensive attack despite not really having started the taper....just one missed dose on top of the Lasix. I still had quite severe peripheral edema so I wasn't dehydrated. I really don't like the fainting, vomiting, collapse attacks either, can't please me huh?

My brother came to visit yesterday for the first time in many months....he immediately recognized I was on steroids....he has Lupus (rarely has a flare or needs treatment) and when he was young he was put on massive doses of Prednisone for ITP. He became huge (my father used to call him fatty) and he's been paranoid about his weight ever since. He could almost be classified as having an eating disorder. He's really thin and only eats breakfast and dinner, he will not touch anything like chocolate or cake at all. Anyway, what I was going to say was that he had a panicky look on his face and didn't stay long. I think it brought back bad memories for him.......didn't make me feel real good either.

I know that somehow a balance will be achieved between having severe hypotension and being Cushingoid from the steroids and I'll just have to be patient until that balance is achieved. I'm just a bit disappointed that I'm not getting more medical support to achieve this.

I try not to delegate the responsibility for my health totally to my doctors, after all there has to be a degree of personal responsibility but I'm feeling a bit lost with this issue.

Regards

Chirley