Referred to Stanford

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CarlaB
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Re: Referred to Stanford

Postby CarlaB » Fri Aug 05, 2016 4:51 pm

That's good to hear about the tramadol. Re: ferritin levels- I went online and saw it was at 20.9. Based on what I read, this is low and I will need iron therapy. Waiting to hear from the doctor's office about this issue, otherwise, I will message him about this.

Rustsmith
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Re: Referred to Stanford

Postby Rustsmith » Fri Aug 05, 2016 6:12 pm

Yes, 21 is too low for anyone with RLS, you need to be at least above 75 and even better if over 100. In fact, it is barely above the minimum for the rest of the population. Your doctor has two options. The first is to put you on oral iron and the second is an iron infusion. Oral iron generally consists of 325 mg iron sulfate pills that are taken with either a Vitamin C tablet or with orange juice and on an empty stomach. It takes a while to raise your iron this way (weeks to months) and the pills can cause mild stomach upsets. Oral iron also does not work for everyone. Iron infusions consist of iron that is given by IV. It will raise your iron levels immediately, but can come with some risks. The infusions are also a lot more expensive.

When I was first diagnosed, my ferritin was 46. I used oral iron 3x a day for a couple of months and was able to raise it to over 300, but that is definitely not a typical response. I now take a pill once a day and have been able to maintain my level to over 150. I am sure that you are going to get responses for a number of our group who have not been able to use oral iron and now must resort to the IV approach.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

stjohnh
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Re: Referred to Stanford

Postby stjohnh » Fri Aug 05, 2016 6:20 pm

Took about 6 weeks of 3 times daily oral iron to get my ferritin from 25 to 75.
Blessings,
Holland

CarlaB
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Re: Referred to Stanford

Postby CarlaB » Fri Aug 05, 2016 7:33 pm

Thanks, Steve, for the information on Iron Therapy. The ferritin level didn't surprise me, given how severe my RLS is and how easily I seem to have aumentation on the DA meds. It will be interesting to see how I do with oral iron therapy. Any particular brands more consistent than other brands?

Holland, thanks for the feedback on how you responded to oral iron. I see you are in the Palo Alto area, how nice that you are so close to treatment at Stanford. It is a 3 hour drive each way for me without traffic to Stanford.

stjohnh
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Re: Referred to Stanford

Postby stjohnh » Fri Aug 05, 2016 9:56 pm

Carla, I'm close to Stanford, but haven't gone to the Movement clinic. I have a general internist who is agreeable to my suggestions about treatment, and, considering how much trouble I've had over the past couple of years and how well (relatively) I'm doing now, I'm not inclined to unless I have problems that I can't handle with the help of my internist.
Last edited by stjohnh on Fri Aug 05, 2016 10:00 pm, edited 1 time in total.
Blessings,
Holland

Rustsmith
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Re: Referred to Stanford

Postby Rustsmith » Fri Aug 05, 2016 9:59 pm

Carla, I don't think that there is probably too much variation between brands for iron sulfate. Unlike organic compounds, it doesn't decompose or vary in strength depending upon the source. I have always used Nature's Made from my neighbor Walgreens store, but that is just because we do a lot of other shopping there. There are other forms of iron that are available, most of which are organic forms of iron, such as Iron Glycinate. Some people swear by them and these are supposed to be easier on the stomach. However, I have also seen where others reported that the organic forms were not as effective and are also more expensive.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

CarlaB
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Joined: Fri Dec 20, 2013 8:56 pm

Re: Referred to Stanford

Postby CarlaB » Fri Aug 05, 2016 11:36 pm

Steve, I did see the iron glycinate at the pharmacy, but wasn't sure if it was the right stuff. Appreciate the explanation about iron sulfate vs iron glycinate.

CarlaB
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Re: Referred to Stanford

Postby CarlaB » Fri Aug 05, 2016 11:39 pm

Holland, glad to hear you have a good internist. My primary doc is great, but he said he had never seen a severe case before. He was happy to refer me and learn about issues like augmentation and ferritin levels.

JustKeepWalking82
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Location: Pensacola, FL

Re: Referred to Stanford

Postby JustKeepWalking82 » Thu Sep 08, 2016 12:15 pm

I was on Tramadol for RLS for a little over four months. Although I haven't heard anything about augmentation with Tramadol, I do know for certain that it greatly lowers your seizure threshold which makes you much more likely to have seizures. This happened to me with it. I was in a parking lot at the mall with my Mom in the backseat (the car was parked and off) and all of a sudden I just start seizing. I was rushed to the hospital after having a massive grand mal seizure and being dead for over 4 minutes. I am not trying to scare you or anything, but I would ask about the major risks involved with a new medication before starting. Nobody told me about the seizure risk until after I had one.
Marisa
Always know that there are good people in the world to pick you up when you fall down.

Polar Bear
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Re: Referred to Stanford

Postby Polar Bear » Thu Sep 08, 2016 1:36 pm

I became aware of the seizure risk when I read the side effects in the Tramadol packaging. Certain other medications can increase this risk, one of which is the combination of citalopram and tramadol. I spoke to my GP about this and he considered my doses of each to be acceptable.

However, there came a time when I started to get random twitches, in particular head twitching. Some days none at all, some days enough to be concerned, although even one is too many.
My GP reduced my Tramadol by half and within a few days these twitches stopped and haven't occurred since.

JustKeepWalking82 - I'm really sorry this grand mal seizure happened to you. Has your medication been reviewed and changed?
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

badnights
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Re: Referred to Stanford

Postby badnights » Fri Sep 09, 2016 8:43 am

justkeepwalking - that's terrible. How frightening for you and your mother, never mind dangerous and everything else. What's going to happen now? You will have to replace the Tramadol with something, I assume.

Thank you for posting, it's a good warning for other people.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

ViewsAskew
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Re: Referred to Stanford

Postby ViewsAskew » Sat Sep 10, 2016 7:40 pm

A few years ago one of our regular members - Neco - had seizures from tramadol. Very important not to cross that 300 mg threshold OR if you are taking other meds with it that also lower your threshold, keep it even lower. And if you know you have seizures, do NOT take it! Other issues, too - check out this link for more info:
http://www.medsafe.govt.nz/profs/PUArti ... erious.htm
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: Referred to Stanford

Postby badnights » Sun Sep 11, 2016 7:11 am

I have copied the last four posts in this Topic to a new Topic called Dangers of Tramadol in the Prescription Meds forum to increase access and findability
viewtopic.php?f=4&t=9758
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice


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