Need your opinions

Just did something I should have done a month ago......got an appointment with a neurologist who specializes in rls. He is at Johns Hopkins in Baltimore.......and he went to medical school in Galway, Ireland! Only problem is that he can't see me until Sept. 12th☹️☹️. I need your opinions on whether I should resume the Ropinerol until I see him. If I continue to withdraw, I have no plan or any medication to replace the Ropinerol until I see this doctor. September is a long time away! Let me know your thoughts.....and I send sympathy to the Londoners affected by this epidemic of terrorism. Thank God Nick's children were not in that area! Here's an idea.......may all terrorists come down with RLS😜😜.

patmac

36 Replies

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  • Hi I am 99 % sure I know which doctor you are referring to but I don't want to name him publicly on here but I will say Dr E.A brilliant doctor but just so you are forewarned he has a policy of reducing the Dopamine Agonists meds followed by a 10 day period completely free of any meds. This is for most RLS patients torture and I know of several sufferers who have had to be hospitalised due to this. For any more information feel free to private message me x

  • Hi, Pippins2!

    Thanks so much for your reply! .I'll bet you are right about the doctor I will be seeing.....just wish I could see him sooner. I'm down to 1 mgm of Ropinerol now, but only get about 3-4 hrs sleep. Am using the homeopathic meds as well, which seem to help a little. Just don't know if I can make it til September and am considering going back to 2 or even 3mgm (my previous dose) until I see Dr.E. My internal medicine doctor and my pulmonary doctor don't seem to want to get involved with the rls problem.

    Reading some of your other posts......are you on CPAP also? Ain't it fun?? I don't know your age, but for myself........getting old is not for sissies!

    Thanks again, and take care,

    patmac

  • Getting old is better than the alternative!!!!!!

    You have from now to Sep to try the diet. Who knows you might not need any more meds. I have no idea whether the diet can help if you are ready taking medicines. What do you have to lose?

  • Can you call Johns Hopkins and ask them for advice?

    Maybe something to keep you somewhat comfortable (if that's possible) until your appointment.

    Also have you already had a ferritin level done yet? Great place to start and I know JH will be looking at that first!

    Good luck and I know they will be worth your wait!

  • Hi patmac. Are either of the Dr.s that you might be seeing at John Hopkins in Baltimore named Christopher Earley or Richard Allen?

  • Yes...my appointment is with Dr. Earley. I'm hearing good things about him.....just wish my appointment was sooner!

  • I too was recommended to him but I am so afraid he will take me off of my ropinirole, and God forbid, have to stay there overnight for observation. Since I have yet to make an appointment, will you please keep me apprised as to your experience? I would greatly appreciate it. Thanks patmac.

  • Lbf2016

    See if you can find my previous posts about Dr. Early. I've been seeing him since February. You will not have to spend the night!

    You should make an appointment as soon as possible because it takes months to get an appointment.

    I don't, obviously know your particulars but I can tell you heis wonderfu. If you can't find my previous posts let me know and I will let you know my whole experience.

    Also, look him up on the internet and see if you can find the video of him talking about the role of iron.

  • Hi grammie12. I couldn't find your earlier posts - I'm sorry but I want to thank you for all the help you have given regarding Dr. Christopher Early at John Hopkins (Bayview.) Thank you so much for providing the phone number (big help) as well as your additional information. You have been extremely helpful and I can't thank you enough. Thanks too to patmac, paulamae, annejende and everybody else who is taking part in this conversation and has shared his/her input. Best of luck to all of us!!!

    P.S. Grammie12, is it Grammie12 or Grammy12? Which do you prefer?

  • Grammie12

  • I will certainly let you know how everything goes! As Grammie12 suggested, make an appointment soon, because there will be a wait!

    patmac

  • See if you can find my previous posts about him. I've been going to him since February.

  • Hi, I would love to see that neurologist at John Hopkins. Could you please send me his name and number. I am suffering horribly with this RLS. I am taking a lot of requip, I am up to 2.5 mg three times a day and 4 mg at bedtime.And even this doesn't all ways work.The huge dose keeps me sleepy all the time.If I don't take it then I am miserable. I am 64 and have had RLS since I was about 38.Thank you in advance for helping me with any info you have. I live in Wing,Alabama, its on the florida/Al. line.

  • 410-550-0571

  • Dr Christopher Early at Hopkins Bayview

  • Paulamae, I sent you his phone # on one of my replies and his name on another reply. That # is if you live in Maryland.(410-550-0571). If you are outside of Maryland it's 410-464-6641

  • oh, thank you so much.

  • Hi,paulamae., I see Grammy sent the phone number......I'm lucky to live about an hour or so from Baltimore! Will let you know how things go in September....

    Keep hanging in there!

    patmac

  • I'm in a suburb of Baltimore. Patmac where do you live?

  • I live in a little town in southern Maryland....Lusby. It's on Route 4, about 20 miles south of Prince Frederick

  • Not too close to here but certainly reachable.

  • Pretty far from Hopkins....I had an initial appointment on Feb. 14 and then blood work (ferritin, iron etc.), then iron transfusion March 10 there, then another appointment on March 28 and another one coming up on the 20th. That's a lot of back & forth. Would you be able to do that from Alabama?

  • I agree with Grammie 12.

    I would have liked to be seen at Johns Hopkins but I live in Wisconsin and it's just too far.

    I did some research and made some calls and found a hospital close to me. He follows the same protocol.

    Look for a teaching hospital. They're more up to date on research and treatments.

    I read the Johns Hopkins research and told them what I wanted and they were like, "yes that's what we do!"

    I am getting my iron infusions at a local hospital because I am 2 1/2 hours from the hospital and dr I chose.

    Oh and I had to do a sleep study also.

  • Is your appointment with Dr. Early?

  • Yes, it is.......can't wait to see him!

  • I was in your situation w/ropinerole. I have been titrating off 12mgs of Extended Release Ropinerole very successfully w/help from my GP doc. Fired my neurologist since he kept since upping my dose. I have a great reducing plan that has been without withdrawal, so I may be able to help you. First I need to know how your RLS effects you, what kind and dosage of Ropinerole you are on, are you taking any other meds, and have you had your iron checked? If so what is it? Do you take iron? Iron bisglycinate has been my savior. I'll get back to you when I hear from you.

    Bganim1947

  • Bganim1947 I could use some advice concerning Iron bisglycinate. I have successfully weaned myself off ropinirole over the last several months. My last dose was 2 weeks ago. My dr told me to take one 27 mg Iron bisglycinate because my ferritin level was 17. (I had been taking Iron bisglycinate for 3 months before the ferritin test). I have found one iron pill didn't help me so I took 2 at bedtime and had some relief from my rls. I would sleep a couple of hours and get woke up with rls. I then took a third iron tablet and that seemed to help. Most nights I only take 2 iron tablets but my dr advised me to only take one and recheck the ferritin in a year. I guess my question is how much Iron bisglycinate do you take ? On really bad nights I take 1/2 a codeine tablet I had left over from dental work but they are about gone and I'm pretty sure my dr will not prescribe opioids.

  • I need two pills of the iron bisglyinate. I take before bed on an empty stomach pretty much since I eat dinner fairly early. I find the iron much better at relieving than codeine. My plan is to try going back down to one pill in a couple of weeks after I've taken the magnesium threonate for a while.

  • Hi, Bganim1947!

    This may be a long reply......I think my rls actually started a good while ago, but became bad enough a year ago that my primary md put me on 4mgs of Ropinerol before bedtime. That dose knocked me for a loop....could hardly walk next am, so dropped to 2mgs. Then, last winter rls got worse so I upped to three mgs.

    Then I read about significant weight gain in women in their 60's who take Ropinerol. As I have gained 25lbs since starting R. and cannot lose it despite dieting and bike riding 5 miles every day....I decided to stop it.

    My symptoms with rls are pretty typical....nighttime "creepy crawlies " after going to bed, tossing and turning, etc. As I have tapered the dose I've developed symptoms in the afternoon.....mainly in my left thigh....can't sit still and it becomes painful.

    I've been tapering the dose weekly and am down to 1mg. In order to get any sleep at all I've been using homeopathic meds plus 3mg of Melatonin. My other meds are Norvasc for BP, glucosamine/chondroitin, Zoloft 100mg, multivitamins, zinc and biotin. Blood work done May 22.........

    Iron - 84. TIBC. - 325 UIBC - 241

    Iron saturation - 26

    Folate - >20

    Vitamin B12 - 1598 (high)

    Ferritin - 143

    I have an appointment in September with the neurologist, and am considering restarting Ropinerol at 2 to3 mg til then.....especially since I was trying to stop it because of the weight gain. I had never even heard of augmentation until I found this site!

    I appreciate your even reading this ...... any suggestions and advice will be greatly appreciated! I look forward to hearing from you......

    patmac

  • Don't take melatonin!!! It makes it worse!

  • Oh boy......thanks for telling me! Is there anything I can take in order to get another hour or two of sleep?

  • I'm not familiar with the medication you are taking so I don't have an answer for wanting more sleep. I think I must be lucky - I take 600 mg. Gabapentin at 9:00 pm and sleep all night,

  • My levels when I first saw him were:

    Iron binding cap. 312

    Unsat binding capacity 210

    Iron. 102

    % saturation 33 %

    Ferritin 70

    Had iron infusion and then:

    Iron binding cap 241

    Unsat bind capacity 168

    Iron 73

    %saturation 30%

    Ferritin 615 (which Dr. Early says is the most important)

  • I want to start this overly long post--sorry about that, we should private message if you have Questions--by saying I have no medical experience, I can't advise you. Ivan tell you what I did.

    I was on 12 msg. Of extended release Ropinerole since last year as I found little to no relief from regular Ropinerole. But my neurologist started me at 4mg then kept upping my dose every time I had a bad incident, which kept getting worse every time he upped the dose from 4mgs. to 8, Jumping me to 12 in less than 6 months. All the while I thought my RLS was just getting worse. I had no idea that I was suffering from augmentation. Apparently neither did my neurologist.

    I made the decision to get off Ropinerole when I read about augmentation on this website. Thank God for the people here who guided me through it, telling me to reduce my dosage beginning with 2 mg of the extended release I was on per month. I would've preferred to do it as a 1 mg reduction, but the extended release is only available in 2 mg doses.

    What I believe helped me get through it was the iron bisglycinate 28 mg capsule. I understand that you're taking it and have been taking it with some relief, however, are you taking it with a full glass of orange juice? You don't mention that. One thing most doctors don't even know that I found out on this website, is that iron this bisglycinate or any iron for that matter must be taken with orange juice. That's what enables it to be absorbed into the bloodstream. Without the orange juice it's useless.

    I take no more then 2 iron pills a day as it's easy to overdose, so you need to be careful about going into three. I will see my doctor tomorrow and ask her for sure if it's OK to be taking two, she never told me to do that. My pharmacist, who has been advising me through this titration down in dosage of Ropinerole, told me I could take 2 occasionally if I need it. I don't always need it.

    My iron numbers from blood tests are similar to yours. Neither one of us are under the recommended iron stores levels, but being women over 60+ I think we can usually afford to take a little more than younger women, maybe, but still need to check with my GP. I can't say what's best for you or even myself.

    One thing I did find out though from my pharmacist and also checking it out online is that there are certain medications I was taking that tends to trigger RLS, you are taking two of them that I can identify: melatonin and the antidepressant Zoloft. Check online to see if you can verify this, but most importantly check with your doctor about the possibility of getting off the Zoloft or try something else.

    Please understand I'm not a doctor. I can't really recommend anything, except the OJ.

    I haven't had any problems with gaining weight with the repent of all, in fact as ofe role as of last May while on the 12 mg dose, I lost 30 pounds watching my portions and counting calories.

  • I see Dr. Early at Hopkins and he is amazing. It took me 5 months to get my appointment to see him. I'm pretty sure they would not tell you what to do about your meds before you see him though. 😓

  • Thanks, Grammy12!! I feel really lucky now to have gotten an appointment only three months away.....and I agree that there will be no advice beforehand! Glad to hear such a great endorsement for Dr. Earley......

    patmac

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