Page 2 of 2
Re: Augmentation Evaluation
Posted: Fri Jul 19, 2024 7:02 pm
by Vadowa
Augmentation usually happens when your symptoms get worse or start earlier in the day after being on meds for a while.
Re: Augmentation Evaluation
Posted: Fri Jul 19, 2024 10:52 pm
by ViewsAskew
RestlessNan wrote: Thu Jul 18, 2024 2:02 pm
Rustsmith, Do you know how the information about augmentation was first made public? Was it something people would read and just think, "No big deal!" I'm lost here. Even the pharmacies I've dealt with haven't gotten a question mark about when sending it through insurance, they frequently do with other issues that's for sure. Things could have been so different if say 15 years ago someone would have said, "I've read in medical journals that the dopamine agonists are raising heck with RLS." I'm not a litigious person, but I would think lawsuits would have come out of the woodwork. Whatever. The campaign needs to continue to stop the use of DA's for RLS, have more education available, update information about DA's, most reference books are sadly outdated, I could go on... Thank you.
I augmented in 2005. When I looked back, I saw medical journal articles from the 90s.
I've read that it takes upwards of 15 years before things become common knowledge in the medical field, but this has been 25 years and yet many do not know.
Like you, I've often wanted to be a litigious person. I lost so much of my life - my career, a partner and step kids, and years of not being able to participate in life - all during my 30s and 40s when I should have had a very different life. I did get a husband who has been with me every step of the way and I hope I have helped others here by posting my story and helping others navigate their way through the hell that is augmentation. I just wish our work here was obsolete. But, it isn't, sadly.
I am so sorry you are going through this. From my own experience, I only know that I've tried every opioid except one and the only one that really works is methadone. I just finished a trial switch to buprenorphine and it was a disaster. I was at the maximum dose and still needing 50% of my methadone dose. There was no way I could stop the methadone. So, as much of a pain as it is, I guess I am stuck with the methadone for the near future. I do hope for new options to be identified, but none will be here soon.
Re: Augmentation Evaluation
Posted: Tue Aug 13, 2024 5:49 pm
by RestlessNan
Thank you for your reply. That is unbelievable that it went back that far as the 90's. I thought when ropinirole was prescribed to me in early in 2000 something that it was a new approach to RLS and the prescriber was a well regarded neurologist. He started me on a low dose it was only years later that family practise physicians and PA's increased my dose to the awful 12mg/day that I came off of. Now, I feel with the pain clinic that I'm working with that it's an uphill battle to get that right amount of opioid for the RLS and other chronic pain I experience, I know I've been educating them regarding RLS. Odd that methadone doesn't work for me, I think oxycodone in the dose I need, will make my life bearable. I needed to change providers from a neurologist who was ordering the iron infusions, but it was a long drive away, to a hematologist who does outreach much closer. I kind of thought my primary MD had missed the mark on this referral. But after waiting 4 months for the appointment, I was pleasantly surprised how aware he is of the role ferritin plays in RLS. He's also deeply looking into the causes of some other pain and the reason I got blood clots several months ago. He's a smart cookie. They're so few and far between! Best wishes on your journey, your deserve the best considering all that you've endured.
Re: Augmentation Evaluation
Posted: Wed Aug 14, 2024 7:58 pm
by ViewsAskew
RestlessNan wrote: Tue Aug 13, 2024 5:49 pm
Thank you for your reply. That is unbelievable that it went back that far as the 90's. I thought when ropinirole was prescribed to me in early in 2000 something that it was a new approach to RLS and the prescriber was a well regarded neurologist. He started me on a low dose it was only years later that family practise physicians and PA's increased my dose to the awful 12mg/day that I came off of. Now, I feel with the pain clinic that I'm working with that it's an uphill battle to get that right amount of opioid for the RLS and other chronic pain I experience, I know I've been educating them regarding RLS. Odd that methadone doesn't work for me, I think oxycodone in the dose I need, will make my life bearable. I needed to change providers from a neurologist who was ordering the iron infusions, but it was a long drive away, to a hematologist who does outreach much closer. I kind of thought my primary MD had missed the mark on this referral. But after waiting 4 months for the appointment, I was pleasantly surprised how aware he is of the role ferritin plays in RLS. He's also deeply looking into the causes of some other pain and the reason I got blood clots several months ago. He's a smart cookie. They're so few and far between! Best wishes on your journey, your deserve the best considering all that you've endured.
YAY that the referral has been good. That is so important.
While it's not always true, it does sometimes appear that some of us seem to only respond to whatever we first tried - as if our receptors have decided that this is the only thing they want. I find it truly odd that only ONE opioid works for me, for example, and the I can ONLY use pramipexole - none of the others work for me, either. It's just weird.
I hope you hang around and share your experiences - it helps others and hopefully it will help you, too. We greatly appreciate your participation.