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New and Concerned

Posted: Sun Jul 19, 2015 12:54 am
by MaryAnneW
Hi I am Mary Anne from Va. and was diagnosed in March 2014 by my primary physician at my yearly physical. He listened to my symptoms and said I had RLS and prescribed Requip 1mg to start. He didn't explain about it being a neurological disorder just said what I had. After a month he increased me to 2mg as the lesser dose no longer worked. This past March at my yearly physical , I was again was increased to 4mg after I told him that I now have it during the day at times and in my arms at night. He said I could try taking it during the day too. I did not take it during the day as it made me feel dopey and sleepy and at night I had to take it with pepto bismol or I would be sick within the hour. I also started getting acid reflux and was sick to my stomach in the am, well I wake up now at 3am and stay awake. This past Monday I had horrible indigestion and was sick so I did not take it that night and was awake all night but at least I was not sick. On Tuesday am I called his office and said to take me off it and explained my symptoms. I am now taking Pramipexole 1mg at night. It is helping but I am afraid of the side effects. It upsets me at the lack of info from my Md and I appreciate all the information I am learning from this forum. Are you all being treated by with your primary care Md or see a neurologist? I also have Hashimotos.

Re: New and Concerned

Posted: Sun Jul 19, 2015 1:24 am
by Yankiwi
Hi MaryAnne, I'd say you definitely have augmentation which has been caused by your high Requip dosage. Instead of continuing to increase your dosage your doctor should have lowered it and found another way to treat your symptoms. There is a lot of good information on this discussion board, look at the board index for augmentation. There's a whole category for it.
I am treated by a GP but go in armed with information from this website, literature from the foundation and the book "Clinical Management of Restless Legs Syndrome, second edition" which can be purchased from Amazon.
I had my thyroid removed due to goiter and with medication have not had any bad symptoms so hopefully your Hashimotos is not an issue for you.
Good luck.

Re: New and Concerned

Posted: Sun Jul 19, 2015 1:56 am
by Rustsmith
Mary Ann, as you have probably already learned by now, your doctor has been treating you with higher doses of both Requip and pramipexole than are normally recommended for RLS/WED. These doses are fine for Parkinson's, but are larger than the experts recommend for RLS.

Also, what you are experiencing sounds a lot like augmentation. For that, take a look at the information included in my signature as well as the discussion in the Augmentation forum. To conclude that you are augmenting and determine how to proceed will require the cooperation of your doctor.

As for your question about the type of doctor, I can only reply that I currently see a neurologist who specializes in movement disorders. My history is that my GP has an idea and was able to diagnose me when my symptoms were mild, but has not been as good a source now that I am severe. I was also seeing a "general" neurologist to treat my migraines and that doctor left me to suffer without treatment for over six years and never did really understand, even when told about my diagnosis by another physician.

So as general advice about a physician, if you can get to one of the RLS Foundation's Quality Care centers, you should do so. The closest for you is probably Johns Hopkins. If that is not possible for you, then try your local RLS support group (if there is one) for suggestions.

Re: New and Concerned

Posted: Sun Jul 19, 2015 5:22 am
by ViewsAskew
Great advice so far.

As to who to see....that is indeed the problem. Some of us have great luck with our primary care docs, some of us do not. Some of us have had great luck with neuros...others have not. Same with sleep specialists. It's so hard to know who can treat you.

If you are in an area where there is an RLS Foundation certified center, go there. But, many of us are not. I actually live in Chicago and fly to California to see a certified RLS specialist. I've not have a lot of luck with any doctor here, having seen neuros, sleep doctors, GPs, and so on.

You do need someone who understands augmentation. That might be the question to ask whomever you find locally - how often have they treated it and what do they do. Then let us know and we can match it to what the certified specialists are currently saying should be done.

Re: New and Concerned

Posted: Sun Jul 19, 2015 10:09 am
by MaryAnneW
Since I started the pramipexole on Turesday I have been able to sleep and slight indigestion in morning. I haven't had symptoms during the day and they start about 7pm. I found a neurologist on this site that specializes in movement/ RSL in Roanoke which is about 26 miles from me that I plan on calling. This scares me and I need someone who will not just "medicate@.

Re: New and Concerned

Posted: Mon Jul 20, 2015 5:17 am
by ViewsAskew
One of the issues with RLS/WED is that, as of now, there is very little research that proves anything besides medications work. One study suggests that regular moderate exercise does reduce symptoms. Other than that, most doctors rely on research and science, so they have few options.

A good doctor should:

1. Obtain hemoglobin and serum ferritin levels. If anemia is present, iron should be provided. If serum ferritin is below 75 and they prescribe a dopamine agonist, iron should be provided before the dopamine agonist is used. If the serum ferritin is below 50, it's likely they would prescribe iron.

2. These days, start with the alpha 2 delta ligands - these include gapapentin, gabapentin encarbil, and pregabalin. Instead of the dopamine drugs - which can cause augmentation - it may be more prudent to start with this class of medication if medication is needed.

3. Be aware of the current trend to use much lower doses of the dopamine drugs. For example, the authors of the book, 'Clinical Management of Restless Legs Syndrome,' suggest that the max dose of pramipexole should be .25 mg a day, yet many doctors are unaware of this and follow the 2005 guidelines and prescribe upwards of 1.5 mg per dose, up to 3 times a day. Big difference!

4. Only prescribe daily medication if the RLS/WED occur at least 4-5 days a week. If symptoms occur 3-4 days or less, then other medications can be used as needed.

5. Inform patients of the many triggers - from other medications to caffeine to sugar. Not all people have the same triggers, but eliminating these can help many people get relief without medication.

6. Be knowledgeable about augmentation and current ideas about how to deal with it.

I am sure there are others, but these are the main ones I'd want in a doctor.

Re: New and Concerned

Posted: Wed Jul 22, 2015 7:08 pm
by MaryAnneW
I called my primary dr for a referral to the neurologist and his nurse got back to me and said that he said I could double my dosage of pramipexole and I he just started me on 1 mg this week . I told her that is the last thing I want and I just want to see someone who specializes in RLS so hopefully I will have my referral tomorrow. Geezzzzzz

Re: New and Concerned

Posted: Wed Jul 22, 2015 11:55 pm
by ViewsAskew
Yeah, it's really hard sometimes to get a doctor who is knowledgeable!