New here looking for guidance.

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devn67
Posts: 5
Joined: Fri Jul 21, 2017 9:06 pm

New here looking for guidance.

Postby devn67 » Sat Jul 22, 2017 4:21 pm

Hello Everyone, I'm new to the board but certainly not new to this disease. My mother passed it on to me and I've been dealing with a pretty bad case of it for the past 10 years or so. Found that tramadol worked wonders and have been on it steadily for the past 8 years. Now however my doctor tells me that with tramadol being upgraded to schedule 1, she wants me to scale back and start looking for an alternative. As you can imagine I'm scared to death because I know I'm possibly in for some really tough times ahead. Been researching the dopamine antagonist ones like miripex and I'm really not liking what I'm seeing with regard to augmentation. My case is severe enough I don't want to regress. I would appreciate and and all help/recommendations that you can offer me. Thanks in advance.

ViewsAskew
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Re: New here looking for guidance.

Postby ViewsAskew » Sat Jul 22, 2017 6:04 pm

Welcome, devn67. My guess would be that a lot depends on finding an RLS savvy doctor. I see two likely outcomes.

First, you stick with her. The only way (in my experience with docs once they get afraid like this) is to try what they want. If you do this - and it might work fine - you need to use the most current treatment guidelines. These can be found in The Clinical Management of RLS, 2nd edition, written by Lee, Buchfurher, and two other docs. Mine isn't handy and I am not awake yet, lol. To stave off augmentation, you should have your serum ferritin at LEAST 75 and preferably over 100 BEFORE you start using a DA.* of course, we are not sure how much time that buys you. But, you might get many years. To be doubly sure you do not get it, you can always suggest that you take regular breaks from it - since the usual onset of augmentation without ferritin being high is 14-18 months, you could try short regular breaks or longer less frequent ones.

Second, you find a doc who is willing to continue. That is possible, but less probable. Even after augmenting, it took me 9 tries to get a doc who would work with me using opioids. And, eventually he refused to continue. If we know your general location, we might have some suggestions.

And, not a way to work with docs, but many of us find that we do best with a small amount of multiple things. I take a bit of kratom or medical mj to make me fall to sleep, a small amount of methadone, and a small amount of pramipexole for my regular and best working combo. I take regular breaks from the pramipexole and the methadone to prevent tolerance and augmentation. Others do different things, but also use a combo approach.

*My ferritin was around 8 when I started. I augmented in about a week. A few years after I stopped it, with ferritin in the 30s, I was able to use pramipexole by alternating it and never taking it longer than 2 days. I never pushed it to see if I would augment. A few years after that, I had several iron infusions. Now that my iron is staying in the 100s for a longer period, I am up to 90 days right now without augmentation. I have been slowly testing it - 15 days, a break, then 30, a break, and so on. My hope is that I can get to at least 6 months without needing to stop it.
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.

Polar Bear
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Re: New here looking for guidance.

Postby Polar Bear » Sat Jul 22, 2017 6:43 pm

I'm glad you have found us but sorry that you need us.

You say that your doctor wants you to scale back and start looking for an alternative. Do you mean that she literally wants 'you' to start looking. Or is she also proactive in the search for effective treatment.
Is your doctor herself familiar and experienced in the treatment of RLS. Many of us have found that we need to educate ourselves and then educate our GPs.
Have you tried other medications for treatment or was it just fortunate that you were prescribed Tramadol first, and it was effective.

This is a book worth reading - it is easy to read and can be used for discussion purposes with your doctor.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon. I refer to this book constantly, it is full of pencil markings ad post-its on the parts that would be relevant to me. I take it with me to any RLS Doctor appointment.

Also, have you had your ferritin serum level checked, this is pretty important. It is a blood test that is not normally done with routine blood works and you need to ask for it. This tells the level of iron stored in your brain – and that is what is important to us sufferers of WED/RLS. We need a level of around 100, especially if we are taking a DA drug such as pramipezole or ropinerole. When getting the results of this test please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us.

To be asked to scale back is scary. Has your doctor discussed with you a plan on how to manage this reduction in what is in fact an effective medication for you. Does she have another medication in mind to replace the Tramadol, as it reduces and not leave you unmedicated.
DAs were for a long time considered the first line medication to try in the treatment of RLS. This is't just as clear cut as it was.

I started ropinerole when it was considered that 4mg was a daily dose, it is now considered best to be kept to a maximum of 1mg.
I wish I'd known then that there were other options. But my doctor literally listened to me when I told him that I'd heard of this medication (ropinerole) and he prescribed it. We both now use and refer the book mentioned above.
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

stjohnh
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Location: Palo Alto, California

Re: New here looking for guidance.

Postby stjohnh » Sat Jul 22, 2017 7:09 pm

Welcome, devn67, you've come to the right place. Lots of really nice folks here that know lots about RLS. Ann made some really good suggestions. You are understandably leery about dopamine agonists (ropinirole/Requip, pramipexole/Mirapex and Neupro patches) - DAs. That said, ALL RLS meds have significant side effects, and for many people the effectiveness is better than other meds. Augmentation problems can be minimized by keeping the dose low, keeping your ferritin above 75, and not increasing the DA dose.

Also the goal, for people with moderate/severe RLS, is to treat so that you can live a tolerable life, not to complete elimination of symptoms. Trying to eliminate all RLS symptoms is very difficult and increases the likelihood of augmentation and other side effect problems. This is a difficult to treat disease and many doctors don't know much about it. You may have to educate your doctor with judiciuosly delivered information.
Blessings,
Holland

legsbestill
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Location: Dublin Ireland

Re: New here looking for guidance.

Postby legsbestill » Sat Jul 22, 2017 8:04 pm

Just to say that the advice you have had so far is spot on and absolutely what I would have said also - though with less authority than the very experienced moderators and Stjohnh. In particular, if you do go down the dopamine agonist route, be sure to have a high serum ferritin and if you find you need a higher dose than that which was previously effective, consider reducing rather than raising the dose and/or taking a complete break and using an alternative med for a while as Ann suggests.
There is one other category of drugs that your doctor may suggest - the anti-convulsants (alpha2delta ligands such as pregabalin and gabapentin). There are some for whom these also work well although they did nothing for my RLS.
The book already recommended is extremely useful also to highlight (1) the various non-pharmaceutical options (which you can investigate in tangent with pharmaceutical options) and (2) the various pharmaceutical and non-pharmaceutical factors that may inadvertently aggravate RLS - in case you are not already aware of them.
Best of luck,
Rachel

yawny
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Re: New here looking for guidance.

Postby yawny » Sat Jul 22, 2017 10:19 pm

Great advice...I'm wondering, would a doctor at one of the RLS Quality Care Centers be willing to keep a patient on Tramadol if it's working? Or Dr Buchfuhrer?

Rustsmith
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Re: New here looking for guidance.

Postby Rustsmith » Sat Jul 22, 2017 11:03 pm

yawny, as I understand it, one of the requirements to get the Foundation Quality Care Center designation is a willingness to prescribe opioids for the appropriate patients. Therefore, if the QCC doctor believed that current opioid use should be continued, then they would be willing to keep the patient on Tramadol. I have heard that the doctors at Johns Hopkins were told that they could continue opioids for patients already on them but could not put new patients on them. But that was hearsay and probably before Drs. Allen and Earley started pushing for less restrictions on the use of meds such as methadone.

Also, to correct what devn67 said, Tramadol is not being moved to Schedule 1. Schedule 1 is the list of drugs that the CDC and FDA deem as having no medicinal benefit. It includes things such as heroin, LSD and currently - marijuana. Tramadol has been on Schedule IV, so maybe it is being moved up to Schedule III, which is the list where codeine is. Most of the rest of the opioids are on Schedule II, which is where there is a LOT of red tape.
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.

devn67
Posts: 5
Joined: Fri Jul 21, 2017 9:06 pm

Re: New here looking for guidance.

Postby devn67 » Sun Jul 23, 2017 5:32 pm

Just making sure I'm doing this properly. Yesterday I did a second post after reading your replies and tried to answer some of the questions that were asked. I don't see it in the chain though so I'm thinking maybe I did something wrong. Did any of you see my second entry?

Polar Bear
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Re: New here looking for guidance.

Postby Polar Bear » Sun Jul 23, 2017 6:16 pm

If you look over to the right of your post, where it says your name, and underneath it says.... Posts: 2.
That seems to be your original post and the one above. And it means 2 posts total over the entire Discussion Board.
Don't know what has happened to your 'second entry' but we all get little glitches at times.
It's possible you did nothing wrong, so If I were you I'd just do it again.
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

devn67
Posts: 5
Joined: Fri Jul 21, 2017 9:06 pm

Re: New here looking for guidance.

Postby devn67 » Sun Jul 23, 2017 10:45 pm

Gonna try this again. So I live in the New Orleans area and Dr Maria Palmer is my doctor. Actually, shes the doctor who treated my mother for 40 years so she very well versed in treating RLS. I found that Tramadol worked by accident prior to even going to her though. It was right about the time my legs starting bothering me to the point of being really disruptive. I took some tramadol after having dental work done and noticed that my RLS symptoms completely diminished so when I saw her the first time I explained that to her and she's been prescribing it ever since. That's been about 8 years now. Whenever I'm without it, It's horrible. That's why its so scary. She told me in a phone message that she was going to scale back the use of Tramadol and that Miripex would be available if I wanted to do that instead. I called to make my next appointment and she returned my phone call to schedule and that's what she said in her message. She's getting up in age and sometimes hard to understand on the phone so I won't really know the extent of what "scale back" means until I visit with her in 3 weeks. Somewhat knowing her intention though prompted me to reach out and search for any and all other options as well so I can be prepared for the appointment.

I see Kratom mentioned on different threads. I personally don't have any experience with it but will try anything that others find successful. My mother took Sinemet for as long as I can remember and I not really comfortable with taking that or similar ones though.

I appreciate everyone's responses. It's nice to know there's support out there. I watched my mother struggle with this for years with hardly any help at all.

yawny
Posts: 203
Joined: Sun Nov 08, 2015 4:20 pm

Re: New here looking for guidance.

Postby yawny » Sun Jul 23, 2017 11:35 pm

devn67, just an opinion...medications are very tricky from them not working, to uncomfortable side effects, to withdrawal symptoms from "scaling back." If something was working well for me like Tramadol is for you, there is no way I would be open to trying a new medication. If you feel the same way, is there any way you can travel to an RLS Quality Care Center so you can keep your Tramadol prescription? There are people on this discussion board that have moved to states where they can get the medicine they need, or they travel every year to a great doctor that knows how to prescribe appropriately.

legsbestill
Posts: 358
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: New here looking for guidance.

Postby legsbestill » Mon Jul 24, 2017 12:08 am

Kratom works very well for me. I take it for a few weeks and then use a neupro patch for a few weeks. My hope is that this will keep my dose on each at the lowest possible level for the longest possible time.

stjohnh
Posts: 401
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Location: Palo Alto, California

Re: New here looking for guidance.

Postby stjohnh » Mon Jul 24, 2017 1:50 pm

devn67 wrote:I see Kratom mentioned on different threads. I personally don't have any experience with it but will try anything that others find successful....


Here is the link for the kratom I buy. SoCal herbal remidies has lower prices than most other vendors. You can buy 1oz to try for $5+shipping. I use red vein Borneo kratom, the most commonly used strain by members on this forum. Note that this site does not use the word kratom anywhere. They call it herbal tea.
https://www.socalherbalremedies.com/product/red-borneo/
If you want to see all the types of kratom they sell, put speciosa in the search box.

Oh, almost forgot, stay away from sinemet, it is effective but causes augmentation much faster than other meds.
Blessings,
Holland

devn67
Posts: 5
Joined: Fri Jul 21, 2017 9:06 pm

Re: New here looking for guidance.

Postby devn67 » Mon Jul 24, 2017 4:33 pm

St John, yes I watched my mom take more and more sinemet as the years went by and it worked less and less. I also learned as she got to 70 years old and beyond that it deteriorated her mind as well. She started developing schizophrenia and even became bi-polar. So in doing research I found that one of the side effects of taking sinemet for a long time is just that. So I definitely don't want to go down that road.

Yawny, I wasn't even aware that specific RLS treatment centers even existed. That is certainly something I would be willing to travel for. Would be hard to relocate though.

Rustsmith
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Re: New here looking for guidance.

Postby Rustsmith » Tue Jul 25, 2017 1:32 am

devn67, the nearest Foundation Quality Care Center to New Orleans is at Methodist Hospital in Houston. It is run by Dr. William Ondo and I was one of his patients for about a year before we left for Colorado to escape the Gulf Coast summers after 40+ yrs. Dr Ondo is not only a physician who has specialized in treating RLS since he was an intern, but he is also a leading RLS researcher and an advisor to the RLS Foundation. If you cannot find someone in the NOLA area who is willing to continue your treatment with Tramadol, I can guarantee you that Dr Ondo would be willing to. When I started with him I saw him six months following the first appointment and then he said that as long as I was doing well, that he was comfortable with annual visits. The drive between New Orleans and Houston is a lot better than the cross country airline flights that some on this board have had to put up with in order to get acceptable care for their RLS.
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.


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