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by stjohnh
Mon Oct 22, 2018 5:21 pm
Forum: Prescription Medications
Topic: My pharma diary
Replies: 142
Views: 19396

Re: My pharma diary

I am really sorry you are having to go through this.
by stjohnh
Sun Oct 21, 2018 11:36 pm
Forum: Prescription Medications
Topic: Prescription Savings $$$
Replies: 5
Views: 35

Re: Prescription Savings $$$

Yup. The manufacturer does have a savings program. But it has to be used only for treatment of iron deficiency anemia which I definitely do not have.
by stjohnh
Sun Oct 21, 2018 10:44 pm
Forum: Prescription Medications
Topic: Prescription Savings $$$
Replies: 5
Views: 35

Re: Prescription Savings $$$

I've just started using GoodRx. The dipyridamole I take for RLS was $80 for 90 tablets using my "insurance" plan, which didn't cover it at all, even though generic, because RLS is not an approved indication. GoodRX has it for $32, same Costco pharmacy. Unfortunately it looks like it won't ...
by stjohnh
Tue Oct 16, 2018 8:33 pm
Forum: General Topics: RLS/WED
Topic: Help Please
Replies: 15
Views: 936

Re: Help Please

Hi Xwelcome, This is the place to come for helpful advice, lots of smart people and lots of experience with different meds. Steve sounds about right to me, the first question to answer is if you are augmenting. See your doctor. Also if you have not had your ferritin checked, be sure to ask for that ...
by stjohnh
Fri Oct 12, 2018 1:49 pm
Forum: General Topics: RLS/WED
Topic: Social Security - US
Replies: 13
Views: 148

Re: Social Security - US

A friend of mine got his son on SSDI, but as others have said, long and difficult process. After it was finally approved, my friend said the thing that helped the most was getting an attorney that handles these cases frequently.
by stjohnh
Tue Oct 09, 2018 7:01 pm
Forum: Help for Relationships
Topic: For Anyone Who Thinks RLS is a Joke
Replies: 15
Views: 349

Re: For Anyone Who Thinks RLS is a Joke

EeFall, First, it sounds like you are depressed. If you are contemplating suicide, you need to talk to your doctor today. If you are depressed, but not suicidal, you still need to talk to your doctor. On the meds: I don't recall if you have had an IV Iron infusion. If not, you should. The Internatio...
by stjohnh
Tue Oct 09, 2018 6:01 pm
Forum: Just Joined?
Topic: Lifetime RLS/WED here to say hi!
Replies: 12
Views: 235

Re: Lifetime RLS/WED here to say hi!

Hi James, Yup, it’s time to try a dopamine agonist like pramipexole. Be sure and start at the lowest dose possible and don’t increase the dose unless absolutely necessary. Echo: find out the ferritin number. Should be a minimum of 75. Also, intravenous iron therapy is coming up as an important treat...
by stjohnh
Mon Oct 01, 2018 1:23 pm
Forum: Just Joined?
Topic: Canceled flight and feeling overhelmed
Replies: 4
Views: 193

Re: Canceled flight and feeling overhelmed

Hama90, welcome do the RLS community. There is lots of good information here and lots of folks that know lots about RLS. It’s not clear to me from your post that you have RLS. What time do the symptoms usually start? Does the feeling go away immediately when you get up and walk around? Do they come ...
by stjohnh
Fri Sep 21, 2018 6:59 pm
Forum: Just Joined?
Topic: An old member just returning
Replies: 5
Views: 209

Re: An old member just returning

Perry, Welcome back. 1.5mg mirapex is a high dosage. You may be augmenting. Discuss this with your neurologist.
by stjohnh
Wed Sep 19, 2018 2:33 pm
Forum: Prescription Medications
Topic: My pharma diary
Replies: 142
Views: 19396

Re: My pharma diary

I will also try Ferritin infusion but my own doctor is not doing it. So I have to look for doctors in town who are doing it and I am not sure if there are any. So getting Ferritin might end being complicated but when I respond to Oxcarbazepine, I would have lots of time to find one and eben could l...
by stjohnh
Wed Sep 19, 2018 1:42 pm
Forum: Prescription Medications
Topic: Tolerance issues in general
Replies: 12
Views: 322

Re: Tolerance issues in general

And for Carbamazepine, this drug was my special hope. I was so sure I'd found something with this drug. But again, I was so wrong ... again. Carbamazepine also has effects like an SRRi antidepressent. They are not as strong as an classic SSRi but when you take crazy high doses like I did and Carbam...
by stjohnh
Mon Sep 17, 2018 7:58 pm
Forum: Augmentation
Topic: A question about dopamine agonist withdrawal
Replies: 5
Views: 846

Re: A question about dopamine agonist withdrawal

After taking 1 mg. of physician's samples of Neupro patch for a few days I had relief of my RLS but after a week I awwkened with jerky legs. I added another 1 mg. patch and suffered severe urinary retention, itchy sores at application site and other body parts and slight memory lapse. This was not ...
by stjohnh
Tue Sep 11, 2018 6:00 am
Forum: Prescription Medications
Topic: dipyridamole
Replies: 15
Views: 492

Re: dipyridamole

It's hard to know just why. Thanks for the info.
by stjohnh
Tue Sep 11, 2018 2:43 am
Forum: Prescription Medications
Topic: dipyridamole
Replies: 15
Views: 492

Re: dipyridamole

Steve, The paper describing the use of dipyridamole used test subjects that had mild RLS. My experience and the experience of Rachel (legsbestill) is that for people with moderate and severe RLS that dipyridamole doesn’t replace the regular medicines that you used to control your symptoms. What it d...
by stjohnh
Mon Sep 10, 2018 9:08 pm
Forum: Prescription Medications
Topic: dipyridamole
Replies: 15
Views: 492

Re: dipyridamole

Steve, when you are trying the dipyridamole, were you also taking your regular medications, no other medications, partial doses of your medications?

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