I thought I’d give you an update on my husband. You guys are very helpful in his reduction in ropinerole last year, he was taking 8 mg a day and is currently down to four but cannot get past 4 mg.
Since last he’s been diagnosed with Waldenstrom Macroglobulinemia lymphoma, and is currently flaring with his auto immune disease, MPA/GPA vasculitis, along with his pancreas failing causing EPI. He is anemic and has had 3 blood infusions and a Rutuxan infusion that is treating the cancer and vasculitis.
He is doing ok considering all, but his RLS is really bothered him, he has a hard time sleeping and I notice many times when he does sleep his legs still jumping every 6 seconds. I would have thought the iron infusions would have helped but they don’t seem to have made a difference. Any insight on possible options? He is currently using THC and a sleeping pill, Mirtazapine which sometimes helps through the first 3-4 hour of sleep.
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Sandalsforever
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Mirtazapine is an anti depressant.All anti depressants worsen RLS.I'm so sorry to hear of all his other health problems.
As he is struggling so much, you need to find someone who will help him through thd next stage of reduction.
Buprenorphine or methadone can greatly reduce the severe withdrawal symptoms and would cover the RLS.
I would say it's really important that your husband gets sleep and rest. He can't with severe withdrawal symptoms.
Do you live near one of the RLS centres of Excellence ( set out on rls.org) or near one of the top experts who can help your husband through this last reduction stage?
I haven’t checked the rls.org page in quite a while and I see that it is completely revamped and has some doctors closer to us. I will try one of them hopefully they won’t try and say that ropinerole is still a good drug to use, the one we got on that website a year ago wanted him to just stay on it. She is mo longer listed on the website. He’s been weaning himself off although the last six months he can’t get below 4 mg. Could be because the other sleeping/anti depression pill they gave him.
Although the doctors have been submitted to this list by someone who used them and found them knowledgeable or by doctors who have applied to be on the list, they still might prescribe dopamine agonists which you don't want and/or they might not prescribe opioids if you need them.
If it is a person that submitted the name they might have been happy with a dopamine agonist and without an opioid.
The best way to find out if they are knowledgeable and uptodate is to ask if they have read the Mayo Clinic Updated Algorithm on RLS.
Mirtazapine is one of the worst antidepressants to make RLS worse. Wellbutrin and trazodone are safe for RLS.
On the ropinirole, I assume he was reducing by .25 every 2 weeks. Since he is stuck, he might want to get an inexpensive jewelry scale on Amazon ($11 ) that measures down to .01 gram and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks.
The legs jumping when he is asleep is PLMD which is treated the same way as RLS.
What city and state do you live in? I might be able to give you the name of a good doctor.
Sue this question is for you. A couple of months ago, you provided the name of a competent physician in Jacksonville, Florida….as I was helping a friend through augmentation. I misplaced my notes. Will you give me the name again please? I believe it was a female physician.
I think you need to take that sleep center off your list. Husband was seeing Dr. Festic at the Jacksonville Sleep Center. She told him to stay on Ropinerole and gave him the Mirtazapine.
Husband has been trying to reduce ropinerole on his own since she was no help. She did not want prescribe opioids to him.
OMG.I'm so sorry to hear this. A friend of mine sees Dr Festic & is on Buprenorphine.
It seems that every neurologist we think is 'good' is still not up to date!
It's the same here in the UK. The top neurologists are still prescribing dopamine agonists, refusing iron infusions and don't know the meds that worsen/trigger RLS.
He is. He's a co writer of the Mayo algorithm and he's just written the new guidelines for the American Academy of Sleep Medicine.He is, in my opinion, the top RLS expert in the world and he really cares about our suffering.
Joolsg, We just met with Dr Berkowitz and he is amazing! We definitely need more doctors like him. He believes in treating the person unlike many doctors today. I really believe that he will get my husband off of ropinerole as efficiently as possible. There is a light at the end if the tunnel if you keep looking for it. Thank you for the referral- he is a breath of fresh air. I feel blessed to have also found this site all of you are so helpful and uplifting- it is a real comfort to know others care and donate their time to help people in distress.
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