what next?

[Sandalsforever]

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.

[Joolsg]

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?

[Sandalsforever in reply to Joolsg]

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.

[Madlegs1 in reply to Sandalsforever]

Exactly.

The other medications need to be sorted by a competent medic, before he will be able to progress.

Low dose opioids would be the logical next step, I imagine.

Challenge is to get anyone to prescribe .😭

[SueJohnson in reply to Sandalsforever]

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.

[SueJohnson]

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.

[Busunsc713 in reply to SueJohnson]

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.

[SueJohnson in reply to Busunsc713]

Dr Nura Festic at Jacksonville Sleep Centre

[Sandalsforever]

yes he was going down .25 mg every 2 to 3 weeks but it got worse and he stuck at 4 mg.

he gets the leg kicking and urges to kick and sometimes his whole body when he’s awake, and PLMD when he is asleep.

We live in The Villages, Florida 32163

[Joolsg]

Jacksonville Sleep Center+1 904-854-6899

g.co/kgs/cYbVrPB

Get to the Jacksonville Sleep Centre.

They prescribe Buprenorphine and will help him off the last 4mg.

And yes, Mirtazapine will have made the RLS much more severe.

[Madlegs1 in reply to Joolsg]

Great news.!

Get into Nancy's "walking boots" 😝💚💚💚💚

Post edit------

Sorry-- getting my "Jacksons" mixed up.

Anyway- Nancy and lee had 2 great songs.!!!!

[Joolsg in reply to Madlegs1]

🤣'I'm going to Jackson.' Great song by The man in black.

[Sandalsforever in reply to Joolsg]

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.

[Joolsg in reply to Sandalsforever]

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.

[Sandalsforever in reply to Joolsg]

It’s crazy, isn’t it? And the patients are the ones that I have to suffer.

[SueJohnson in reply to Joolsg]

For another person on the forum s/he also was willing to prescribe buprenorphine for her but she lives out of state.

[Sandalsforever in reply to SueJohnson]

I don’t get it, I even mentioned this group but we did not mention the mayo algorithm.

[SueJohnson in reply to Sandalsforever]

I'm not sure what you are referring to.

[Sandalsforever in reply to SueJohnson]

When we met Dr Festic, I thought she might have known about the group, but she did not.

[Joolsg in reply to Sandalsforever]

Try Dr Berkowski. He operates out of Ohio & Florida and he refuses to prescribe dopamine agonists.Here is a link to his website.

He is brilliant.

relacshealth.com/

[Sandalsforever in reply to Joolsg]

Wow, he has an interesting concept and has opted out of all insurance plans. Not inexpensive- but he sounds like an expert!

[Joolsg in reply to Sandalsforever]

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.

[Sandalsforever in reply to Joolsg]

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.

[Joolsg in reply to Sandalsforever]

Fantastic news. I really hope your husband doesn't suffer too much during withdrawal.

[VENEER]

I have avoided any form of sugar intake which has made my RLS less intense.