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by stjohnh
Fri Nov 15, 2019 6:22 pm
Forum: Just Joined?
Topic: Hi all - new here
Replies: 1
Views: 43

Re: Hi all - new here

I’ve experienced RLS since I was about 9 years old although I can’t say I knew it was a thing - I thought jet was just a strange quirk or my personality. .... Have I missed anything? Anyone have any ideas I could try or a doctor they could recommend ?! Thanks for listening, Jr Welcome Jr to the RLS...
by stjohnh
Thu Nov 14, 2019 3:01 pm
Forum: Prescription Medications
Topic: Statins
Replies: 3
Views: 41

Re: Statins

I took Lipitor briefly about 10 years ago. Didn't make RLS worse, but caused MARKED increase in night leg cramps. Extremely painful. Stopped the drug after a few days.
by stjohnh
Wed Nov 13, 2019 1:56 pm
Forum: Just Joined?
Topic: New member - Rx transitions and Mayo Clinic
Replies: 2
Views: 50

Re: New member - Rx transitions and Mayo Clinic

Hello, I've just joined the group because I'm planning to do research for my husband who has horrid RLS. I hate to see such a wonderful man suffer so, and his RLS just keeps getting worse. Welcome walkerwear. You came to the right place. I don't know about Mayo, but you didn't mention IV Iron treat...
by stjohnh
Thu Nov 07, 2019 9:23 pm
Forum: Prescription Medications
Topic: Experience with Injectafer?
Replies: 78
Views: 3453

Re: Experience with Injectafer?

... @stjohn - do you worry about the long term side effects of repeated IV iron?... Well, I believe (but am not sure) that it would take many IV Iron infusions to cause organ damage. Hemochromatosis is the most common manifestation of iron induced organ damage, and those people almost always have a...
by stjohnh
Thu Oct 31, 2019 1:32 pm
Forum: Augmentation
Topic: Is Tramadol continuing my Mirapex augmentation?
Replies: 46
Views: 1378

Re: Is Tramadol continuing my Mirapex augmentation?

Icantsleep wrote:Experiencing EXTREME rls since bedtime 3 hours ago.
...
Taken a bit over a gram of kratom
...

I cant wait until I can take more of something

Gotta figure out the rls part
Probably take more codeine
Yup just took 15mg (wish I knew I could take more)


1g kratom is still a small dose.
by stjohnh
Tue Oct 29, 2019 11:14 pm
Forum: Augmentation
Topic: Is Tramadol continuing my Mirapex augmentation?
Replies: 46
Views: 1378

Re: Is Tramadol continuing my Mirapex augmentation?

So ... a bit of an update The whole addiction/severe withdrawal (and even extreme numbness) all seemed to be attributed to the ER/XR variety of tramadol ... I am going to skip my evening dose and rely on THC until my usual 50mg bedtime dose ... then if I have a problem overnight into the morning, I...
by stjohnh
Tue Oct 29, 2019 7:39 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Rate of Ferritin Decline
Replies: 62
Views: 6886

Re: Rate of Ferritin Decline

Folks, I'm very very interested in this discussion about ferritin levels. I'm confused though about the talk of iron "infusions" vs simply taking iron oral supplements. Why are folks having to do these infusions? ... Ferritin is a test that is used by doctors to determine the iron status ...
by stjohnh
Tue Oct 29, 2019 2:41 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Rate of Ferritin Decline
Replies: 62
Views: 6886

Re: Rate of Ferritin Decline

... I "suggested" to my neuro to email one of the authors and he did! He emailed Dr Richard Allen who reverted very quickly apparently - in a nutshell, in whatever email correspondence they had, my neuro is now convinced that he should have given me 1000 mg (he clarified the guidelines.. ...
by stjohnh
Tue Oct 29, 2019 2:37 pm
Forum: Prescription Medications
Topic: side effects of iv iron
Replies: 4
Views: 102

Re: side effects of iv iron

I just posted my IV iron injection additional effects in the Injectafer thread. Click here if you want to see them.
viewtopic.php?f=4&t=10227&p=100359#p100359
by stjohnh
Tue Oct 29, 2019 2:35 pm
Forum: Prescription Medications
Topic: Experience with Injectafer?
Replies: 78
Views: 3453

Re: Experience with Injectafer?

I haven't had anything but good results from my IV Iron. I am now at 3 months after my second set. I have continued to have improvements, after the resolution of urge to move, since then. Some related to RLS, some not at all. I suspect the genes causing BID (Brain Iron Deficiency) affect iron metabo...
by stjohnh
Sat Oct 26, 2019 8:59 pm
Forum: Prescription Medications
Topic: Is your DA causing augmentation?
Replies: 132
Views: 40598

Re: Is your DA causing augmentation?

Hi. I started taking Ropinirole in January of 2015 after it was prescribed to me after I took a sleep study. A Dr. Goza out of Little Rock, Ar. prescribed it. I was taking 2 mg and after my RLS became worse and more frequent, I went to a neurologist and he tried to wean me off of it, but I still ta...
by stjohnh
Wed Oct 23, 2019 1:55 pm
Forum: Just Joined?
Topic: RLS vs myalgia
Replies: 13
Views: 213

Re: RLS vs myalgia

Iron 145 TIBC 273 Iron sat 50 Ferritin 149 The updated guidance sent in the first message above recommended IV iron only if ferritin <100,... If I was sure I had RLS it might be worth trying anyway, but I'm not even sure of that so I doubt a Dr would go for it. Yup, you don't qualify under the guid...
by stjohnh
Tue Oct 22, 2019 4:03 pm
Forum: Just Joined?
Topic: RLS vs myalgia
Replies: 13
Views: 213

Re: RLS vs myalgia

RLSLES wrote:Thanks again for all the responses....

FYI, my iron and ferritin results came back normal to high so not something that would trigger either oral or IV iron treatment.


What were the actual numbers? "normal" to "high" still may mean you should get iron treatment.
by stjohnh
Tue Oct 22, 2019 3:35 pm
Forum: Prescription Medications
Topic: Gabapentin & insomia?
Replies: 2
Views: 78

Re: Gabapentin & insomia?

A few months ago my neurologist increased my Gabapentin from 600 mg to 1100 mg daily. At the same time I had just finished five injections of iron sucrose. Since then, I have been having problems with insomnia on top of being up with RLS. It is not uncommon for me to be awake until 3 am or 4 am. .....
by stjohnh
Mon Oct 21, 2019 8:27 pm
Forum: Just Joined?
Topic: 1st post after 24 years of RLS
Replies: 64
Views: 1133

Re: 1st post after 24 years of RLS

Yay!!

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