I'm BACK! Please read!

[Karl]

Hello, Karl here from New Zealand, I also have my name as Andreas .Please look up or search my previous posts (theres not many) to read my range of meds tried and tested etc.I am in the final stages of RLS with little meds working.Now my question is a while back I tested thialidamide (SP) as its used in leprosy nerve damage cases and it DID work for me.However side effects got too much for me and I stopped.Now I'm trying to get funding to try it again ($1000 month).My pain clinic Doctor wants me to ask if any of you in the US etc have tried it or heard of it being used.
Please veiw my posts to learn my family history of RLS and the medications etc I have tried.
Hello again to those who remember me, I got a Doctor or two visiting here too! Thats got to be good!
Karl/Andreas

PS Just went though my posts and guess I posted as a guest first for a while, heres some back ground: I had jumpy legs at 12 then it passed until I was 26 and it got worse over a year until I was loosing weight and had to leave my job that I had built myself a good position in.( I am 37 now, and my gt grandfather was crippled early with knee pain, plus my mother and a nephew have had it).
I was on mild meds and had all the mri scans/x rays done with something going on nerve wise but apart from poor design of my knees it came up with nothing.I then tried a tens machine and codine etc and have tried over the last 6 years 30 or more meds through the hospital pain clinic, some have needed one off goverment approveal,some were tried for weeks, some longer, going up then down.My wife who sorts my meds even short changed me to see if things were working at times!
I have fought with so called experts over this condition as you guys have.I ended up so ill with a stomach condition due to meds I lost a serious amount of weight and was living on toast and soup.
Now here is what I take now:
ibuprofen
paracetamol-works great it you keep a high level in your blood,
methadone-found a level that once passed did no better so I am on a level amount after inceasing it over 3 years or so-its been the main drug to work darn it.
Gabapentum
clonidine
baclofen
epilim
plus bowel medications!
I have tried a lot as I said and the above are what deaden it the most with activeity making things worse, though I can be fully rested and still get that bad I just rock on my chair or curl up in a ball.
I have mild fits that have been put down to the long term affects of all the meds over time, the fits are triggered if I slumber during the day and are scary for my wife and son (11).
I have always tried anything and have had mostly a great team of Doctors behind me.The condition is in my knees , the right one the worse.I had a minor test operation done to one leg and after that the RLS was in my elbows for a time as well!
I have tried pretty much all the meds on this site listed by members and not all are available though in New Zealand.I tried sinemet medicine and it stopped my legs moving during the night while I slept but did nothing to pain.I am starting it again today.
If anyone can help with my question above please do.
Karl

[jan3213]

Hi Karl from New Zealand! Welcome back!!!! We've grown a little bit in a year, haven't we??? Hey--thanks for getting the doctors to post. We're always glad to have nurses, docs, pharmacists, etc. here with us.

I've never tried the drug you're asking about (I'm not even going to try to spell it!). Someone else may have, though. Hopefully you'll get a reply.

Sorry you're having so much trouble. It does seem that the older I get, the less effective meds are---could be becuase I've been on them for so long.

I'm going to have to look up your old posts to get reacquainted. Hope to hear from you again.

Jan

[Karl]

I edited my post to tell more about me as my old posts did not have what I though was in them.I wrote a case study for the site that was used at one time too.The thialidmide is the drug that damaged all those poor babies in the 60's/70's remember? that sort of got to me while I was using it too.
Thanks for the welcome
Karl.

[jan3213]

Hi Karl

I thought that was the same drug. Yes, I remember. I'm not sure it's even available anymore....but, I don't really know.

Hmmmm, I'll have to check it out.

You mention methadone. We do have some members who use that. I also have painful RLS and I find that the Mirapex and Clonzapem I am on are starting to become less and less effective.

Sounds like you've been through the wringer! Hope someone sees this. I'm sure you'll get some good replies!

Jan

[Karl]

I was on Clonazapam, is it the same as what you were on? I find, like you, some only work for a while. When I was up with the play here, I found like others that over the years either you get use to the medication (even with it being increased) or the condition worsens to more of a pain condition. That seems to be the common denominator. I find myself at an all time low activity wise and most of the nerve jumpiness is suppressed, though I can feel when it peaks. The pain however is another story! I was worried it was going tos tart up in my elbows full time, but it hasn't as yet. My wife had it while she was pregnant as well, she also has had it 11 years on now starting again driving her nuts. So she knows how it was for me. A good soak in a bath helps. Sometimes at night a short burst of exercise settles some people too, long enough to get to sleep.
Thanks for writing Jan
Karl.

[ViewsAskew]

Hi Karl,

Like Jan said, it sounds like you have really been through the wringer. Ugh. I've been through a few meds myself and am now on methadone. For me, it's still working. I don't have much pain, though, mostly just the horrid feeling that makes my skin crawl just thinking about .

I had a couple of thoughts, though not sure if they will help much. Many people find that after they go off of something for awhile, they can take it again and it works again. So, it's possible that some things that used to work and stopped working might work again now. Also, if the methadone is controlling the heebee-jeebie part, maybe something specifically for pain might work. Methadone is really not very good for pain compared to some of the other opioids (I think I read that somewhere ).

I heard a couple of years ago that thalidamide was being tested for some disease, but that people obviously were having a hard time accepting it because of its history. I've never heard of it for RLS.

You know, I just realized I didn't see any of the dopamine agonists on your list. I think they are differently named where you are than what I call them, but Pergolide, Mirapex, Requip, or Cabaser all are effective for many. If you haven't tried any of these, or if you tried and they stopped working, these may be something to look into again.

Ann

[Karl]

I was here over a year ago on thialidimide, maybe thats where you heard it? it did work for me.Just the side effects I got scared me.My Doctor travels to Australia as well and is very on the case (I am VERY lucky) He is the main person in the pain clinic.I was on coedine drugs but they stopped working after a while.
I have been on and off the same 13 or so main drugs at least 3 times now so stay with as little as works!
The methdone is the only drug working for me that gets me though and thats after 2 years of refusing it before I had to( been on it for a few years now).I find I get more into a pain condition these days and its one sure drug that has always worked, (I know if I forget it!) and it made a big fix at the time of starting it.However I have twice by mistake taken twice the dose which with the amount I am on is counted as a overdose by the poision centre, so I had to go to hospital-no ill effects ,just played it safe.Anyway on double the amount ,the activety of the car trip flared up my pain proving to me that a higher dose is not a help.My Doctor said a lot of drugs are like that where a certain level is it -no less-no more works.
I have looked into every drug listed on this site and can grant you I have tried over 30 in NZ which is not many over the years really.I have been with 2 pain clinic Doctors at different times with overseas help.Most what was listed here did not help, only helped for a limited time or is not approved in my country
I have a combination that takes the edge off if I don't get worse but I hardly move now and at times that makes no diff anyway
I am pushed by pain back into thialidimide again as I just don't care about the side effects which can stay with you the longer you stay on the stuff.
I will say as you have said in the way back past that what works for some does not work for all,I feel the nerves still going crazy at time but are suppressed mostly, my knee joints are badly designed as well which does not help.I don't have a list of the drugs I have tried but up to a year ago we ran out of what was out there that are mostly used and what was available here off this site so have just been living day by day since.
As you are I guess ,I am tired on being a guinea pig and side effects.Some drugs make my chonic sleep apnoea worst, some keep me awake like simenet(sp).
I think it some respects you are a head of us and very lucky to have the research etc and drugs that we don't here.I contacted the RLS people in Australia who where going to send me info stuff but never did.My Doctor is in contact with the NZ Doctor listed on this site as a contact as well to keep up with new meds.One Doctor even took my case home over Christmas to study and came back empty .He also took me though all the meds I had tested -again.......
I have a supporting wife and good staff at the Hospital and of course my son!
Thank you for your ideas and comments!
Karl.