New member - needs help

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mscarrie
Posts: 8
Joined: Fri Feb 07, 2014 6:11 pm

Re: New member - needs help

Post by mscarrie »

Hi! I just made an appointment with my GP. She was able to get me in tomorrow, so I am feeling hopeful. I am very thankful for this site, and for all of you. You have been very helpful and supportive, something that's hard to find as most people and Dr's think you are making things up. It's very hurtful sometimes, knowing others think I'm just crazy. My printer is out of ink, so no way to print anything off. However, I do believe, since she is VERY thorough and eager to learn new things, that she will take it upon herself to do some research herself. She would be receptive to anything I could give her, such as websites, and names/places of research(ers). The receptionist asked why I needed to make an appointment, and I told her. She put me on hold, and then came back and said she needed to schedule me for a 30 minute session. That made me think the Dr. was willing to take extra time to talk with me. I will post tomorrow afternoon when I get back. Thank you! mscarrie
"No amount of guilt can change the past, and no amount of worry can change the future."

ViewsAskew
Moderator
Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: New member - needs help

Post by ViewsAskew »

Very good!

A few things that may help:

Give her the link to the WED Foundation's main site. There are many brochures there.

There are many links to research on the site - links at respected journals. We often can't see the whole article because only journal subscribers can, but she likely can.

If you have an extra $30, buy a copy of the 2nd edition of "Clinical Management of Restless Legs Syndrome," by Lee, Buchfurher, Allen, and Hening. Give it to her. It has the most updated info of any publication and mentions serum ferritin levels needing to be higher and even talks about how to raise it. The information is limited, though.

Find any post by Badnights, one of the moderators. She has a link in her signature to a paper written by Dr Buchfuhrer. This has references to ferritin levels and much more. Even though you can't print it now, you can either send her the link or you can print it later and send it to her.

The best info on ferritin is to read the papers written by doctors at Johns Hopkins about their studies - Dr Earley is likely the lead on most of all the studies. Not sure where they are published, but a search of "RLS ferritin Earley" would find them.

Hope this helps.

Oh - we have a topic/thread that includes links to important topics/posts. It's here: viewtopic.php?f=5&t=6532. There is a section in the topic about ferritin and has links to some of the above so you don't have to search for them.
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
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: New member - needs help

Post by badnights »

Somehow I missed that you were taking Sinemet - I thought you were not on anything except a muscle relaxant, a benzo sleeping pill, and a blood thinner? No wonder you're having problems. And to go from Sinemet to another dopaminergic drug with no break in-between, this is the usual nightmare again, will it ever end? ALL we want is for doctors to stop unintentionally hurting us, but it seems to be taking a disgustingly long time to get this.

Sorry, I am constantly appalled at the same same same repetition of misery that unfortunate people like you and me and too too many others have to go through, simply because doctors don't know anything about augmentation in WED> caused by dopaminergic drugs > which you're on! and moving to!

OK. Rant is over. Information time. How much Sinemet are you on and how much Mirapex are they proposing to put you on? look in my links, especially the paper by Buchfuhrer in the second link below my name, at the bottom of this post. Also the excerpt from the Clinical Management book. These can be printed and brought to your neuro; be sure to present them in a questioning way, tell her you came across them during your hunt for information and ask her what she thinks of them. Are they reputable and dependable? Hopefully, she will take them and learn from them.

Sinemet is notorious for causing augmentation when taken daily. Are you augmenting? The criteria are that your symptoms begin earlier in the day than they used to before you took the Sinemet, and/or have spread to other body parts, increased in severity, or happen sooner after sitting or lying down than they did before. When you stop a dopaminergic drug, especially if you are augmenting, you go through a withdrawal that is even worse than the augmentation, also consisting of worsened symptoms. It is important to get the current medication (Sinemet) completely out of your system before starting another dopaminergic drug (Mirapex) because the augmentation (and withdrawal) effects mean you require a higher dose of the new medication than you otherwise would. This higher dose brings its own problems, for any drug you should stick to as low a dose as possible, but for WED patients on DA (dopaminergic) drugs, higher doses increase your chance of augmentation, so you don't want to start at a higher dose than you need.

The only published literature I know of that states that WED patients should have minimum levels of 75 or 10 ng/ml ferritin are also in the second link. I think Buchfuhrer might have it.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

mscarrie
Posts: 8
Joined: Fri Feb 07, 2014 6:11 pm

Re: New member - needs help

Post by mscarrie »

Badnights, after reading your post, I am left wondering what the hell my neuro is doing! He starred me on regular Sinemet PRN, then as my symptoms became worse, he switched me to the controlled release form. My symptoms continued to get worse, until he had me taking 6 controlled release tablets a day! OMG, I have to tell you, It was a nightmare. I finally figured out what was happening, and I cannot believe It took me so long to realize I was augmenting since every other med in this class has done the same thing. I took myself off over a period of 4-5 days, and my symptoms were off the chart. All I could do was pace and cry, for hours. I was visiting my sister in South Dakota so it was way to cold to take walks which is what I do here in Ohio. Then the time came for me to come back to Ohio, and I had no choice but to go back to taking Sinemet because I had to fly home. I knew if I had nothing, I would not be able to sit in my seat. When I get into confined spaces while symptomatic, I freak out and cause a scene (not meaning to). Now, I just went back to him (the neuro) a week ago. I told him I was still symptomatic, so he told me to stay on the Sinemet, (I was taking it 2 times a day) and start Mirapex at a small dose (0.125 mg) and then gradually taper off the Sinemet. I decided on my own to completely stop the Sinemet because I knew what it was doing to me. I went to my GP today, and she seemed interested in what I had to say, but also cautious. She had me start iron therapy. She said she will do another iron level in a few months, and if it is still low, she would have me try an iron infusion. She jumped on the bandwagon right away while my neuro was ambivalent toward iron therapy. So, I am now starting with the iron ("High potency" 27mg) twice a day with 500mg of vitamin C. I am also taking magnesium at night. I really don't know the best time to take that? This forum is such a life-savor. Thank you for all of your suggestions, knowledge, compassion and recommendations. I look forward to your opinions on this post. Thanks.
"No amount of guilt can change the past, and no amount of worry can change the future."

badnights
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: New member - needs help

Post by badnights »

Wow! Lucky you have a good GP! I hate when the supposed specialist doesn't keep up with the literature. But you know what, if your GP is willing to go the mile with you, and set up an iron infusion and all, you don't even need a neurologist. So keep your fingers crossed. Meanwhile, read every paper you can about augmentation (some of the ones in my second link are only there because we needed a formal reference for the 100 ng/ul recommendation for ferritin, and those were the only things published at the time). (but some of the others are very informative for patient and physician both).

As you can tell, you need to get off the Sinemet and the withdrawal is hell, because it consists of even worse WED than augmenting which consists of even worse WED than normal. In other words - never forget this - the medication that was prescribed to help you is causing you worse torture than you could have even imagined before. But to keep your spirits up, the withdrawal ends, and after it ends, you should be back at your baseline level of WED -- less than withdrawal, less than when you were augmenting. Perhaps a little more than before all meds, because of natural progression of the disease. So you just have to get there.

People who are in good hands get prescribed an opioid to get them through that time. It's very hard to bear without such help, but people have done it. No one should have to go through such torture, but the ignorance among physicians on this topic is endemic and even almost surreal - it frightens and angers me at the same time. It should not be.

The withdrawal may last 1-4 weeks but usually 2, and the worst of it is typically over with in about 3 days - you start to see a light at the end of the tunnel. How long were you off the Sinemet?

Also your neuro wants to start you on Mirapex While taking Sinemet - I already said why that is a recipe for disaster. Even if you go off all the Sinemet before taking Mirapex, you are not likely in good hands- he will just raise your dose when you start augmenting - and if you've augmented on Mirapex before, you're going to augment again - that's not in the medical literature but it's my prediction, so please discuss alternatives with your doctor. Your GP, who cares to learn.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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