Search found 1114 matches

by stjohnh
Mon Sep 28, 2020 8:51 pm
Forum: Just Joined?
Topic: 5 Weeks Until Specialist Visit and Ropinirole Doesn’t Work Anymore
Replies: 5
Views: 64

Re: 5 Weeks Until Specialist Visit and Ropinirole Doesn’t Work Anymore

Thanks for the replies. I’m not happy with my primary care doc but will make an appointment to talk with him about IV iron infusion. I’ve had them before but my hemoglobin levels were lower than they are now. Due to my gastric bypass, I just don’t readily absorb iron from dietary sources or supplem...
by stjohnh
Mon Sep 28, 2020 1:13 pm
Forum: Just Joined?
Topic: 5 Weeks Until Specialist Visit and Ropinirole Doesn’t Work Anymore
Replies: 5
Views: 64

Re: 5 Weeks Until Specialist Visit and Ropinirole Doesn’t Work Anymore

I agree, for the immediate period, try to get tramadol. For a more permanent solution you should be on regular IV Iron infusions. You are seriously iron deficient (blood, body AND BRAIN). RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or e...
by stjohnh
Sun Sep 27, 2020 6:18 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: A few questions about iron tablets
Replies: 16
Views: 193

Re: A few questions about iron tablets

My experience is that few doctors know much about iron except that if you don't have enough, you get iron deficiency anemia. That's about it
by stjohnh
Fri Sep 25, 2020 2:53 pm
Forum: Just Joined?
Topic: New to this board
Replies: 9
Views: 115

Re: New to this board

I agree with Betty, SLOWLY taper off.
by stjohnh
Fri Sep 25, 2020 2:52 pm
Forum: Prescription Medications
Topic: Success!!! Iron infusions ordered!
Replies: 12
Views: 98

Re: Success!!! Iron infusions ordered!

Double YAY!! Getting an order is hard enough, getting insurance to pay is even harder. Way to go!!!

Be glad you are getting it through an infusion center. They have the best trained nurses with the most experience starting IVs. Likely they will get yours started fairly easily with very little pain.
by stjohnh
Wed Sep 23, 2020 2:49 pm
Forum: Just Joined?
Topic: Medication problem
Replies: 8
Views: 91

Re: Medication problem

Hi Jpex, welcome. It is a good sign the neurologist wants you to get off Mirapex, the last few years have seen a dramatic increase in the recognition that Mirapex and other dopamine agonists are a short term RLS treatment with lots of side effects. Switching from Mirapex to gabapentin is in line wit...
by stjohnh
Tue Sep 22, 2020 2:46 am
Forum: Prescription Medications
Topic: Iron infusions--is this note to doctor too harsh?
Replies: 2
Views: 36

Re: Iron infusions--is this note to doctor too harsh?

Note to doc sounds ok to me. You probably should get a different neurologist. This one has 2 strikes: 1. Doesn't know about IV Iron consensus recommendations, and 2. won't really listen to the patient (you). In the US, any doc with an MD degree can order IV Iron. Most neurologists won't order IV iro...
by stjohnh
Sun Sep 20, 2020 7:43 pm
Forum: Augmentation
Topic: Please help
Replies: 17
Views: 232

Re: Please help

Now on neupro patch 2 mg and 400 mg Gabapentin, sleeping very good a bit tired in the day but only been on patch 2 days! Don't spend a lot of money on the Neupro until you are sure you can tolerate the skin rashes. Nearly 50% of people taking Neupro stop it (including me several years ago) because ...
by stjohnh
Sun Sep 20, 2020 7:39 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: A few questions about iron tablets
Replies: 16
Views: 193

Re: A few questions about iron tablets

Steve is correct, the main advantage of ferrous gluconate is fewer stomach problems. Ferrous sulfate is fine if you don't have indigestion with it, and it is much cheaper. You might print the IRLSSG group guidelines on Iron in RLS. IV iron is what you want, the chance that oral iron will help is low...
by stjohnh
Thu Sep 17, 2020 10:56 pm
Forum: Just Joined?
Topic: Newly possible RLS member!
Replies: 7
Views: 138

Re: Newly possible RLS member!

Hi Rika, Welcome to the group. From your comments, I gather that you don't notice any leg jumping in the evening or when you are trying to sleep. Assuming that is the case, you probably don't have RLS. It is possible that you have PLMS, Periodic Leg Movements of Sleep. This is somewhat related to RL...
by stjohnh
Thu Sep 17, 2020 7:03 pm
Forum: Prescription Medications
Topic: Need advice
Replies: 22
Views: 315

Re: Need advice

My dr has ordered me to to have two infusions of injectafer and I am hopeful I am inside the statistics of those helped. I will hopefully get my first infusion within the next 2 weeks. My dr has asked me to have blood work done at the four week post-infusion time-frame. What would be the difference...
by stjohnh
Wed Sep 16, 2020 3:22 am
Forum: Just Joined?
Topic: Hello from Newbie in Birmingham, AL
Replies: 8
Views: 148

Re: Hello from Newbie in Birmingham, AL

SleepyBhamster wrote: "...I could use iron infusions for RLS (Ferritin was 30), it seems his nurse is not going to help me get insurance to pay for it. It's unclear to me whether she is speaking for herself or speaking for the doctor when she replies to my patient portal emails, so I'm giving up and...
by stjohnh
Sat Sep 12, 2020 2:13 am
Forum: Augmentation
Topic: Please help
Replies: 17
Views: 232

Re: Please help

... would definitely like to try the iron infusion not sure where to start First you will need to educate yourself so you can help educate your doctor, or wait until December when you see your new one. RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms marked...
by stjohnh
Fri Sep 11, 2020 11:39 pm
Forum: Augmentation
Topic: Please help
Replies: 17
Views: 232

Re: Please help

Well, once you are sleeping reasonably well, try cutting back on the Norco. HOWEVER, you may need opioids on a regular basis, unless you can get IV Iron. As others have pointed out Norco is not a good choice for regular RLS use. Your body will get better in the sense of improving dopamine receptors ...
by stjohnh
Fri Sep 11, 2020 7:33 pm
Forum: Just Joined?
Topic: 1st post after 24 years of RLS
Replies: 132
Views: 7329

Re: 1st post after 24 years of RLS

Before my IV Iron treatments, my optimized dose of THC was 10mg 2hours before bedtime and 5mg 4-5 hours later. I found CBD not helpful.