Fludrocortisone

[teenyturner]

Does anyone else take Fludrocortisone to keep their blood pressure up?   I was supposed to be discharged from hospital with a bottle of these tablets but when I got home and unpacked, I realized they hadn't supplied them.  I rang the ward and they said they had been out of the fridge for a couple of hours and would have to be thrown out.

No replacement tablets or prescription was offered, so I haven't been taking anything for my blood pressure.

Every time I try to stand up I get lightheaded, nauseous and breathless, I have to sit down or preferably lie down or I'll faint. My father has a blood pressure machine and he took his own and it said 95/70 while he was standing.  Then he took mine and it wouldn't give a reading....we tried 3 times....it just said error.  We think it was too low to be read.  I was sitting at the time.

Is this a common side effect of neuro problems?  Also I've not been feeling well since I came home (a week ago) and when I weighed myself I found I've lost 3.8 kilograms in the last week.  I'm not trying to lose weight at the moment (truth be told, I can do with losing more) but it seems to be falling off. This is a little worrying.

My GP is on leave, yet again, so I don't have anyone to get advice from unless I ring my hematologist and I'm not sure he'd know much about neuro symptoms.

Regards

[teenyturner]

I had my blood tests today and huts about everything is abnormal :-(

I'm anaemic again with low red cells, white cells and platelets.

My potassium, phosphate, protein, calcium, albumin and globulins are all really low.  My liver enzymes and chloride are high.

The daycentre nurse rang my doctor and I have to have daily blood tests until he sees me on Thursday.

Apparently it's the low protein that's causing the swelling and breathing problems.

I've been eating eggs with salt and lots of potatoes, oranges, mandarines, dill pickles, lots of milk etc etc, trying to keep my electrolytes and calcium up.  I guess I'll just see what he says on Thursday.

Regards

[teenyturner]

Thanks for that.  I know Florinef can lower potassium and was quite desperate before I took one of my Dads fluid tablets.  I thought that having breathing issues and swollen legs to the point where if I pushed in with my finger it left a deep indentation that took minutes to fill back in was enough of a reason to try one tablet as a one off.  It's not as if I hadn't tried to get some medical help.

Thanks for the advice Mary but my haem doc ceased the Diazapam some time ago.  He said that it increased my risk of falling and my bones are so brittle and thin that I may not be able to recover from a fracture.

  I did refuse a Diazapam once when I was in hospital.  I was in the middle of a severe generalized dystonia attack and my throat muscles were effected.  I was having trouble trying to talk or swallow.  The nurse tried to place a Diazapam in my mouth and was going to try and wash it down with water.  I knew I wouldn't be able to swallow it.  So I clenched my teeth, my only form of being able to refuse at that stage.  The nurse came back two hours later and forced the tablet into my mouth with the water and I started choking and she had to get a sucking machine to clear my airway.  I had an IV in my chest at the time and it really should have been given intravenously.  What she did was downright dangerous.

I have to start another week of daily treatment centre visits tomorrow, I will be having another round of blood tests so I'll hopefully be reassured that the potassium level Is okay.  

The reason I posted before is because I don't know if it's normal to have the BP and pulse fluctuate so much.  I'll see my haem doc on Thursday and ask him then, my hope is that he knows the answers, he's a haem not a cardiologist or physician.

Thanks for the replies.

Regards

Chirley

[twopack]

Most definitely talk to your doctors!  This is no time to self-medicate with anyone else's Rx medications.  Both drugs have the potential to drastically alter your fluid and electrolyte balance rapidly.  Demand all the explanations you need from your doctors to understand the things you need to BUT PLEASE allow the docs to do the treating and prescribing.

"Diazapam works well but I sleep 18 hours a day...."
Diazapam will work quite well without making you sleepy if you take it on a regular basis.  (If I remember right, when you were in the hospital you sometimes refused to take this drug or only pretended to swallow it).  It takes a bit of time for the side effects of sleepiness to ease up.  

Perhaps you could enjoy some extra sleep initially as the spasms are first being controlled and then ask the doc about backing down on the size of the dose (but still take it every 6-8 hours) until he can titrate up to the dose that will be most effective with the fewest side effects.

Many drugs will leave you reeling from side effects initially but disappear after a few doses.  Diazepam and baclofen are both guilty.

Mary

[Dnstr]

Hi I take flouronf as I have pots disease it's a tough disorder to live with but it can very manageable. I wouldn't be able to work or stand if it weren't fit these tablets
Google it and talk to ur dr
Hope this helps
Dani

[teenyturner]

Hi,

I started retaining fluid after being back on the Florinef.  I gained 8 kgs in 19 days.  I had trouble breathing lying down and had to sit up to sleep.  I also developed a wheeze and a cough.

I rang my neuro and he told me I could reduce to a hale dose as a one off.  It did nothing to help so I rang my haem and he told me I could miss one dose and one dose only.  It did nothing.

Out of desperation, I took one of my fathers fluid tablets and lost 5 kgs in one day and immediately felt better.  I then started taking a half dose as a regular thing.  Unfortunately my BP dropped so low it wouldn't register on my Dads BP monitor.

So I increased again to a full dose and thankfully. Have only retained a little fluid (puffy feet :-), don't care about that).  I also bought my own BP monitor.

This morning my BP was 158/138 with pulse 46 and an alarm saying low pulse with irregular heartbeat.  I decided to ignore that as just an aberration.  Later after breakfast etc I did it again to double check and it was 87/66 with pulse of 124 with alarm saying hi pulse and irregular heartbeat.

I find this very odd and so that I don't become fixated, I'm not going to take my BP again today.

I just want to know if you have had similar problems when first trying to establish an optimum drug level?

I feel okay most of the time, I still have a slight wheeze and a cough in the mornings which I didn't have before starting the Florinef.

Regards

Chirley

[AMO]

Hi,
Thank you for concern of refirging my pills. But I assure you the ones I have do not need collling. (Fludrocortisone Acetate USP .1 mg / #7033 / Global)

I was taking higher dose soemtime ago, but retained too much fluid and lowered again.
I drink lots of water , eat salt, and they watch my potassium closely. I haven't had any close call s   of passingout for sometime now, so think it has helped.
With the midodrine isn't to take within 4 or so hours before bed becasue it can cause high b.p. lying down.

I'm sorry I don't  have anny input for the baclofen or diaza pam. I   havve the other specturm probllem with hypotonia. So  i   never took them.
I hope you   get your b.p. controlled, it it not easy sometimes.
Take care, amo

[teenyturner]

My little dog was on Fludrocortisone for 8 years for Addisons disease.  I never refrigerated them for the first 5 and then suddenly I was told it was very important to keep them cold.  If you read the bottle they say to keep them between 3-8 degrees Celsius.

I haven't been given a name for what's wrong with my blood pressure.  I was told that I get generalized dystonia but I think that's just got to do with spasticity.  When my body starts spasming and becomes rigid, my blood pressure goes up into the normal range........all in all I prefer my blood pressure to be low (can lie down) than being trapped in a totally rigid body.

Oral Baclofen made me vomit and Diazapam works well but I sleep 18 hours a day, are there any alternatives available?  I would love my life to be a little more normal.

Regards

Chirley

[AMO]

HI,


YOu must have a differnt pill from   me, I have  had fludrocortiiisone   for years and never had to refrigerate  them.
I alllso have midodrine .
My cardiologist seees me ffor dysautonomia (orthostatic hypotention).
It  will depend what neuro problemm where areaany damage has come .
Ii hope you feel better today, amo

[Mand125]

Hi there

I'm glad that you have got that much needed prescription! I hope you start to feel better soon.

Ice cream deliveries would be great, sometimes I order the smallest pizza from Dominos just so that I can order desert (ice cream) - I have wondered about ordering just the ice cream.

I'm sorry you have felt lonely, it can be lonely having MS so I can't even imagine how it feels to have such a rare disease - are there any support groups where you are?

You are never alone on this forum but like myself I imagine people don't know what advice to give about such a rare condition.

It looks like Mary gave you some good advice about calling your haematologist.

I am thinking of you.

Mand

[teenyturner]

Hi Mary, I'm sure we have the same system as you do in that when a doctor goes on leave they have a locum fill in for them, but that in itself is a problem.  My condition is so rare that I find it difficult to explain my condition to new doctors and I really don't expect them to understand anyway.  

When my specialist and GP are away at the same time it just makes communication even more difficult.

Luckily I rang my haematologists office today and he was back.  It turns out I am supposed to be on the Fludrocortisone permanently and he faxed a prescription to my local pharmacy, he says that it was no wonder I was feeling yuk!

Hoping to start feeling a bit better tomorrow.

I've been craving an ice cream fror the last week, I wish we had ice cream deliveries instead of pizza deliveries :-)

[twopack]

I have a difficult time understanding your system in Australia.  It seems the doctors leave on holiday regularly with no assignment of another physician to cover the needs of their patients.

I don't quite know what neuro condition you are dealing with but since this seems to be a blood volume problem I would think a hematologist would have at least some working knowledge of how to handle it.

It is harder for anyone here to venture a guess than it would be for a physician of the 'wrong' specialty.  Anything we could think of has the potential to do more harm than good.

I'm sorry you are feeling alone but that IS something each of us is likely to recognize as familiar.  It matters little how many other people share my disease - sometimes I feel all alone in living the day-to-day reality of it.

Please call any doctor who knows you and can f/u on your needs post hospital course.

Mary

[teenyturner]

I assume from the lack of responses that no one else takes this drug or has this problem.  Sometimes my disease can be very lonely.

Chirley