Effects of Amitriptyline or Kenelog 40 on RLS?

[ppadill35]

I am new to both the organization and the discussion board. And I am so grateful to have found both, but especially the board. I have learned so much already!

I am not sure I really have RLS. The sensation I feel in my legs is pain, not the urge to move per se. I do move my legs when I have the pain (in the same way I would move when I had menstrual cramps painful enough to make me writhe as a younger woman), but I do not have the urge to get up and walk around, and walking does not alleviate the pain. The pain does, however, begin whenever I lie down. At the suggestion of one doctor (skeptical about the RLS diagnosis that other doctors had made about 12 years ago), I began taking alpha lipoic acid, 200 mg, each morning. Apparently, alpha lipoic acid is used quite frequently in Europe to treat peripheral neuropathy. Since starting this, I have rarely had the leg pain in the morning. However, in the past few months, I have had greater and greater pain in my legs in the afternoon (upon lying down only) and at night, when lying down to sleep. At the same time I have felt achy and fatigued and sometimes weak. I have very poor quality sleep due to the leg pain. Timed release acetaminophen helps somewhat, along with Aspercreme.

A new doctor diagnosed RLS again recently and placed me on Ropinirole, which has not helped much at all, even when I went up to three 0.25 mg tablets three times a day. When I complained again about fatigue and pain, he sent me to a rheumatologist. The rheumotologist felt I did have RLS and not an immune disorder, but he conducted an experiment of sorts this past week to try to substantiate that. He gave me a shot of Kenelog 40 and told me that if I felt much better that would indicate inflammation was causing my pain. If not, then likely RLS was causing it.

Well, the pain is gone. Would the Kenelog 40 have affected RLS? Does anyone on this board have experience with Kenelog 40?

My legs began hurting about 12 years ago. At that time, I was diagnosed with RLS. Requip (Ropinirole) never worked for me. Neither did Mirapex or Neurontin. I then began taking Amitriptyline and continued to take it until early this year, when it began to not work. Does Amitriptyline generally work on RLS? I read on another area of this board that it can make RLS worse. Could it have made it better for me?

To confound the situation even more, I have osteoarthritis in my hands and possibly knees, so that has added some pain. However, that pain is quite different from the leg pain that got me started on the Amitriptyline so long ago.

Thanks in advance for any insight anyone can share regarding Kenelog 40 and/or Amitriptyline and RLS.

[ViewsAskew]

First, so glad the pain is gone!

To be RLS, as you likely already know, there are some criteria that must be met. It sounds as if you do not meet them. Movement helping is required. The other is that you do have the urge to move - for me, it's almost like an internal anxiety in my limbs. While your symptoms occur when you lie down, if it were RLS, it would also most likely occur if you were sitting in a chair. It's related to being tired, not the position you are in. If you were tired and sitting in a chair, would you have this pain?

Also, ropinierole and pramipexole are sort of the gold standard of treatment in the sense that many doctors believe that if it doesn't help, then you cannot have RLS. People may have issues with it so they can't take it, but it seems to help everyone.

I had never heard of Kenalog 40, so I looked it up. I think I know about every RLS/WED drug, so I was pretty sure it wasn't ever used for it. It's used for many things and is a synthetic glucocorticoid corticosteroid with anti-inflammatory action. While there is some evidence that some forms of RLS may be worsened by inflammation, this drug shouldn't affect any form of RLS.

Amitriptyline would at best do nothing to RLS - it would never help it. But, it can help neuropathic and chronic pain.

While it could be the ropinerole dose wasn't sufficient, given the other information, I'd guess that this isn't RLS. While your pain occurs when you lie down and affects your sleep, it isn't resolved by movement. It may be more related to your position that that you are sleeping.

http://www.rxlist.com/kenalog-40-drug/i ... dosage.htm

Hope this helps some - feel free to ask any followup questions.

[Polar Bear]

Absolutely.... what Views has said.
If it's RLS/WED then -
Requip/Ropinerole at a correct dose should help.... even if only to start with.
Walking should relieve symptoms.

Regarding amitriptyline, I took it to aid sleep, in the hope that it would not have a negative affect on my long standing RLS/WED symptoms.
It didn't seem to annoy my RLS, but neither did it help my sleep or my fibromyalgia (as was expected). Also, it made me so foggy that eventually I weaned myself off it over about 3 weeks. Foggyness cleared and I felt no difference in any symptoms from the lack of it.

Very glad that Kenalog 40 eased your pain.

[ppadill35]

Thanks so much to both ViewsAskew and Polar Bear for sharing your opinions of my situation with Amitriptyline and Kenelog 40. I certainly wish that doctors knew more about RLS. And I wish I had known about this organization and especially this discussion board earlier. In just a few short days after joining, I learned enough to be a much more informed patient. I have avoided taking Ropinirole unnecessarily, it appears. I am going to have to educate my primary doctor while I work with the rheumatologist to figure out what is causing the pain and what I can do about it.

[ViewsAskew]

Do feel free to hang out here and keep us apprised of what happens. It will help us learn more and help others if they come and are in your situation.

One thing might help...contact Dr Buchfuhrer - somno@verizon.net. He's a pulmonologist and RLS specialist. He answers emails - amazingly - and he might have some ideas of what it could be instead of RLS. Or at least give you some ideas of what to do next.

[Yankiwi]

In just a few short days after joining, I learned enough to be a much more informed patient.

That's what this discussion board is all about, I'm grateful for it too.

I have avoided taking Ropinirole unnecessarily, it appears. I am going to have to educate my primary doctor while I work with the rheumatologist to figure out what is causing the pain and what I can do about it.

At first I thought Ropinerole was a miracle then I augmented and thanks to this forum was able to cut way back down to one .25mg tablet. It isn't perfect but I hope I can stay on this low dose forever. I still have to be careful about sitting for too long and need to take codeine on long car drives and movies.
Good luck.