Has anybody tried Droxidopa (Northera) for Orthostatic hypotension (postural hypotension)?

[Jmsbradord]

My mother suffers from vascular PD and has immense problems with her vertigo and, hence, her balance. I have read that there is ONE medication on the market to treat orthostatic hypotension caused by PD called Northera (Droxidopa). It is extremely expensive, as it is the only option on the market, and I would be really interested in learning what the experiences in the community have been with this medication?!

[park_bear]

so she has this?:

Vascular (also referred to as "multi-infarct") parkinsonism is a form of "atypical parkinsonism" in which parkinsonian symptoms (slow movements, tremor, difficulty with walking and balance, stiffness and rigidity) are produced by one or more small strokes, rather than by gradual loss of nerve cells as seen in the more typical neurodegenerative Parkinson's disease. bcm.edu/healthcare/care-cen...

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Northera raises blood pressure. There is more than one cheap easy way to do that. But before you get started with this, you need to measure her supine (lying down) blood pressure in the evening when it is likely to be at its highest. While you are at it you also need to measure her standing blood pressure, particularly in the morning when it is likely to be at its lowest.

[Jmsbradord in reply to park_bear]

Yes, she has been diagnosed with vascular parkinsonism and yes, she has done all the blood pressure tests and confirmed orthostatic hypotension. Northera is the only medication that appears to address PD-related OH and we do not live in North America, I was interested in hearing from anybody who has tried the meds to hear if it does the trick. The reviews mostly say that there is not enough trials to confirm the desired effect (unless of course you look at the manufacturer's website...)!

[park_bear in reply to Jmsbradord]

Okay it is great she has got a proper diagnosis and hopefully someone with experience with Northera will reply in due course.

Meanwhile it is really important that you understand just how serious the situation is. I am speaking as one who has personally suffered from dysregulation of the postural blood regulation system. Northera sports a black box warning for very good reason. In neurogenic OH, SH = supine hypertension, goes along with it. Evening supine blood pressures can reach astounding heights - like 250 systolic. Your mom has already suffered multiple strokes. SH may be the cause of this problem. But you will not know unless you get a blood pressure cuff and measure her blood pressure in the evening when she is lying down. It may well be over 200 systolic - it was for me. In such case she needs to be sleeping in reclining position rather than lying down.

In any case before doing any intervention to raise her blood pressure it is mandatory that you monitor the effects of the intervention, at least twice a day at the outset. Periodic visits to the doctor's office are not sufficient.

One more thing - is she taking a dopamine agonist by any chance? If so that may well be the cause of her OH.

[Hikoi]

Jennifer

I have not tried any meds to raise bp. With vascular pd i dont think our regular pd drugs work very well, does she take any? I know orthostatic hypotension is apart of pd but pd Drugs can make it worse.

I am recalling one poster here who suffered dreadfully from low bp and eventually was found to not have pd - i believe the meds gave her such dizzy feelings and OH.

Not saying your mum doesnt have pd but perhaps one of her meds is the root of the problem. Then of course there is making sure she is very well hydrated, PwP often forget to drink. And then there is the use of elastic stockings. Theres a good video on OH put out by WPC.

Sorry nohelp on the drug in question