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It’s been awhile since I posted. My husband was diagnosed with PD in 2013 at age 70. He was diagnosed with MSA in 2015. He’s tried the other drugs prescribed for neurological orthostatic hypotension but his dizziness and other symptoms persist. We are now looking into the very expensive drug Northera. His blood pressure doctor is working with us to get it below the $2,900 a month out-of-pocket price. Is anyone on this drug? Has it helped? Recommended? |
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My husband was diagnosed with PD almost 13 years ago, and with autonomic failure a year ago. Prior to the autonomic failure diagnosis, he had suffered from orthostatic hypotension for 2 years before his neurologist prescribed Northera. Our BCBS insurance agreed to pay the bulk, and a non-profit for rare disease assistance paid the copay. It's now up to about $13,000 per month from what I've been told. For the first year and a half, my husband had great results with very little light-headedness and passing out. Then the benefit began to drastically reduce, and the staff in the autonomic disorder department at Vanderbilt introduced him to midodrine, which he still takes. He's had better results from it than from Northera over the past year. I assume from our experience that Northera helps for a while, and then begins to lose its efficacy. |
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My first post. Had to reply to the orthostatic bp post. My husband, Jim, is 89 (I'm 84). He was diagnosed with "dementia" about 10 years ago and treated with Nameda. In 2013 after a PetScan, his neurologist named it Alzheimers and continued the Namenda. Then in 2016, he said Jim has Parkinsons also - hand tremor, balance problems, no swinging arms when walking, lack of expression in face and speech very quiet voice, etc etc, BUT his blood pressure was biggest challenge. It had been low for many years and he was prescribed fludrocortisone by his PCP. Started with one a day and through the years was upped to 3 a day. But he started passing out and falling. One fall resulted in 6 staples in back of his head and a small subdural hematoma and after a few days in the hospital, he was in rehab for 21 days. To shorten this, he continued to pass out and fall 'til the doctors said he could only be safe in a wheelchair and he's been there for two years now. Hospitalists, cardiologists and neurologists have consulted after more falls (transferring, etc,) and meds now include 3 fludrocortisone in the morning, 3 midodrine and three mestinon in 24 hours, plus clonazapam for the awful dreams,butynin for night overactive bladder, sertraline, iron, potassium and magnesium plus some supplements etc. And, of course, carb/levadopa. Also gabapentin. Has not fallen for almost four months (a record). He has only little memory but remains sweet and grateful for care and I feel very lucky. He weighs 129 but it remains steady. PCP recommended Hospice home care a few months ago and that's where we are. I suspect he will be off Hospice shortly since he is not declining very fast. This is all no fun but we are so much better off than many that I surely will not complain. We have been married for 65 yearsand he's been a wonderful husband. The point of all this rambling is that the 3 meds fludrocortisone, midodrine and mestinon seem to be controlling his severe orthostatic bp for reasonable financial outlay. We did have to take the midrodine down from 10 megs to 5 megs as his heart rate was often dipping to 35 and midrodine will cause bradycardia. I've been lurking this blog for many months and am inspired by the loving, caring stories. Thank you all - Somehow it's easier knowing how many of us there are out here doing the best we can every day. |
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Thanks SueLyn. My husband is back on Midodrine to satisfy insurance requirements before going on the very expensive Northera. So far it’s working, at least until late evening. As he has supine hypertension, he can’t take Midodrine in the evenings. But so far, so good. |
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My husband was on Midodrine for a while but could not stay on it as it was causing him to have the feeling that he had to urinate all the time with nothing coming out. This was for the Orthostatic Hypotension. Finally have it under control with Fludrocortisone 0.1mg 3times a day and all the Gatorade he can drink and all the salt he can use. And most importantly all the water he can drink. It seems to have helped his Blood Pressure. Not dipping like it used to. All this before we knew he had PD. |
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We tried to get help with Northera when the Cardiologist wanted my husband to try it. But they only sent out the first trial batch, then it was going to be a co pay of approximately $2,900 or so a month, which we cannot do. Since his PD Diaganosis He seems to be going along with the Carbadopa/Levodopa, Rasagaline and Venlafaxine. We will just keep using this and see how things go. He also takes Rosuvastatin for Cholesterol an Clopidogrel as a Blood Thinner. I see we are at the beginning of this long road; but with help like this Forum, I think we will make it. |