Midodrine: Hi,Does anyone have... - Multiple System A...

Multiple System Atrophy Trust

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Midodrine

Honghua profile image
11 Replies

Hi,Does anyone have experience of using Midodrine for controlling blood pressure?

Last night's 999 call out where his BP had dropped to 53 over 30 means we have got to do something.

We rejected flurocortisone because of worries about steroid psychosis but reading the patient information leaflet and a little on the Internet about Midodrine makes me even more concerned

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Honghua profile image
Honghua
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11 Replies
TK-67 profile image
TK-67

mum was on midodrine for a couple of years without any issues until towards the end when her BP went upwards too so it was checked before it was given. With a very low BP the risk of falls is also very high.

ReverendBadger profile image
ReverendBadger

Have had it for 1 month, reduced light headedness (onset potential syncope) but no noticable change to home BP readings, then off it for 1 month and no different. However my BP normallly only gets down to 90/55 (OH) or up to 135/70(Supine) so wasn't too serious anyway as long as I got up/sat down/lie down SLOWLEY and as long as I was sensitive to the onset of syncope and react quickly.

Discussion pending as to whether to resume Midodrine or not. BP monitored regularly at home. Might get worse as MSA progresses.

Ruffner profile image
Ruffner in reply to ReverendBadger

My husband took it for about 6 months or so. It had a modest effect on raising his BP but ultimately we decided to discontinue because the supine hypertension increased a lot. He can swing from 200/120 supine to 60/40 standing but even so has only blacked out a couple of times.

GreenJo profile image
GreenJo

Hi - my husband was also on Fludrocortisone- helped a bit but difficult cause made supine BP too high. His BP would go from normal to 50/40 very quickly. I increased salt in his food and use salt to manage rapid drops - rubbing some brine on his gums seems to help.

SaltyFlorist profile image
SaltyFlorist

I’ve been taking Fludrocortisone for about 5 years. I got Cellulitis and a staph infection in my ankle, 2 years ago. At that time my dose was cut in half.

After approximately 6 months with no relief in leg and foot swelling and having tried a few other meds my doc put me on Midodrine.

It seems, from what I’ve read, they want to try everything else first.

My life improved so dramatically with Midodrine. I could barely leave the bed prior.

Currently I’m am mostly able to care for myself. It gave me energy I hadn’t had in years.

My side effects subsided in two weeks. They were frequent urination (which made it difficult to stay properly hydrated) and goose bumps.

I worry about hypertension so I sleep with my upper body elevated and I don’t lay down for naps while taking it. If I can’t do without a nap or get a migraine, I skip a dose and take it after wake.

Sadly we all seem to react so differently to medications. I’m so grateful this is working for me.

Best wishes!

Honghua profile image
Honghua

Thank you all for your helpful replies. I'm sorry it's been so long in posting my response.

I had to call the paramedics and he was admitted to hospital, blasted pneumonia as a result of aspiration.

Another joy of this disease.

Michele

SaltyFlorist profile image
SaltyFlorist

I’m so sorry to hear that Michele. How exhausting.

Try to take care of you as best you can.

Polesden11 profile image
Polesden11

Hi. Its helped me,my BP never nnow.goes mbelow 90

Honghua profile image
Honghua in reply to Polesden11

Thanks for that, now he has to decide whether or not to take it.Other peoples experiences are useful to know

covidnoel profile image
covidnoel

Noel has been on vasodrine ( the same as mdodrine??) Bp as low as 70 when up and 220 when down. Think it is not the answer for us.

Yes my wife uses Midrodrine 2.5mg twice a day at 9am and 2pm NEVER at night. She was previously on Ephedrine Hydrochloride 15mg but when she was in hospital for a broken hip after a fall they changed it and it seems to work

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