Fludroscortisone açetate

[Trusam2913]

Any one taking this for blood pressure? I have a large diff between BP sitting and BP standing and have been offered this to help. However not happy to use after looking at side effects. Any help available?

[Hikoi]

Postural hypotension is part of pd. Are the fluctuations causing symptoms that are difficult to live with? Was the suggestion from a doctor or neuro? I am wary about taking meds for BP in PD.

[Lisl]

Like you I have significant postural and postprandial (after meals) hypotension to the extent that I sometimes pass out. I also experience an almost perpetual dizziness and frequent foggy thinking that I'm told is due to oxygen depletion in the brain. My neuro offered me prescription drugs to deal with this but I too feel the side effects to be too risky. I have been advised to drink loads of water, increase my salt intake, avoid heat, eat small amounts of food regularly, and avoid standing for more than 5 minutes ( my blood pressure seems to keep dropping). Although I have tried to follow this regime rigorously I am still having major problems. My heart also seems to go crazy during bad attacks when I suffer blurred and double vision before passing out/falling asleep. My BP has gone as low as 55/40 while conscious. I'm with you @Trusam2913 in hoping that someone can offer some advice!?

[Hikoi in reply to Lisl]

That sounds familiar Lisl, low bp is an awful feeling isnt it. I get a nauseous sensation in the pit of my stomach. I have had to look at what meds i take and when, to avoid the dramatic BP drop. Havent got it totally sorted yet. Im interested in what meds you take and also you Trusam.

[Lisl in reply to Hikoi]

Thanks Hikoi, I forgot to mention the appalling nausea! And clamminess, sweating and chills... The meds I take are Stalevo, plus mirtazapene and melatonin for sleep, also two rather unpleasant immunosuppressants for a co-existing autoimmune disorder, and statins for familial hypercholestaemia, which is why I do not want to take meds that might give me episodes of high blood pressure (ie while lying down). The family history of heart attack and stroke we're just lucky I guess) makes me very wary of BP drugs.

Tamarisk, your husband is a lucky man to have you watching over him. I live independently, and my friends and family get rather worried about what might happen when I'm alone.

Hikoi I'm also told that it's a good idea to get the head of the bed raised by a few inches. I've yet to find the wherewithal to try that, but layer pillows so that my head and shoulders are inclined at about a 30 degree angle.

[Hikoi in reply to Lisl]

Ldopa lowers BP and so do selegiline and azilect, and entacopone (stalevo) and amantadine in my experience. I have added amantadine lately and it is a real challenge to get the balance of taking it by mid day as well as the selegiline. Sometimes if my timing is slightly out i feel overdosed and nauseous and my BP drops. Othertimes my drug control doesnt work well and my tremor goes into overdrive. The worst thing is not knowing how to get the balance just right. ah the joys of PD 😊.

I too avoid BP or heart medication. I figure my heart has enough to contend with, withthe continual stimulation/assaults by l dopa drugs

I was given statins at one stage but an experienced pd nurse advised against them as they can cause muscle pain, PD doesn't need help with that problem!

I wonder if your auto immune meds have an influence on BP.

[Hikoi in reply to Hikoi]

And yes I do raise the bed head, i am lucky to have an electric bed.

[Lisl in reply to Hikoi]

As you say, the joys of PD!

I'm fortunate that I've had DBS so have been able to reduce the PD meds. However, that was over three years ago and the PD has been inexorably progressing so with the wearing off and balancing that involves the drugs have been steadily increasing again. I had very severe side effects from dopamine agonists so can now only take the l-dopa drugs. I am due for further brain surgery and I'm hoping I will be able to reduce the L-Dopa meds again as they definitely worsen the BP probs. I'm fortunate that I don't have any side effects from the statins. I don't think the immunosuppressant drugs have a negative effect on BP but I sometimes have internal bleeding from the autoimmune disease and that definitely worsens all the low BP problems. I had young onset PD and I guess one of the challenges is living with and trying to adapt to all the symptoms for much longer. I'm guessing this might be true of you too.

[Trusam2913 in reply to Hikoi]

C/levodopa for PD and citalopram for depression also aspirin.

[falcon946 in reply to Lisl]

I wear compression socks or tights as well. Might help?

[Tamarisk]

My husband takes it, it took a while but now it is more unusual for him to crash out.

The only side effect we have observed is sometimes his BP goes far too high, normally when under extreme stress.

His normal resting BP was just under 100/55, standing 54/35, well he did not remain standing for long of course.

We have been told once on it you remain on it but as he is only having half the accidents needing hospital intervention we consider any risks worth taking.

The tablets are very small but I do wonder if it might be worth starting with 1/2, I might start reducing his once a day to every other day to cut the side effects if any.

[park_bear]

ALERT FOR ANY & EVERYBODY WITH OH (Orthostatic Hypotension)

OH is always blamed on the Parkinson's but IF YOU ARE TAKING A DOPAMINE AGONIST CHANCES ARE IT IS DUE TO THAT. See here: jamanetwork.com/journals/ja...

According to this research one-third of PD patients experienced *ACUTE OH* ON THEIR *FIRST DOSE* OF A DOPAMINE AGONIST. That was just upon the first dose. There is additional research that supports this result.

So if you are taking a dopamine agonist and having OH you NEED TO GET OFF THE DOPAMINE AGONIST. You cannot do this cold turkey, you must taper off and be prepared to make up the difference with other meds.

---------------------------------

ALERT II: OH and SH go together.

SH = Supine Hypertension

Your body has both fast (postural regulation) and slow blood pressure feedback loops. When the fast system is out of commission the slow system tries to compensate. So when you are attempting to be up and about during the day and your BP is too low the slow system will build it up. So you reach the peak at bedtime. Then at night it's too high, and then your BP gets to its low upon arising.

IF YOU TRY TO RAISE YOUR DAYTIME BLOOD PRESSURE WITHOUT MONITORING FOR SUPINE HYPERTENSION IT COULD KILL YOU. After just a couple of days of drinking salt water to raise my BP I lay down in the evening and felt a "pop" somewhere on top of my skull. Measured my BP: 264/157. I immediately stood up and my BP reverted to 133/80.

*So the time to monitor for SH is at bedtime and in the supine position. *

In my situation I realized I must not attempt to raise my BP, and furthermore I had to sleep reclining - IOW with my upper body elevated from the horizontal. I took a month for me to recover from the injury caused by the dopamine agonist and be able to resume somewhat normal "ADLs" (activities of daily life), like standing up.