Hi, All. I enjoy this website and now consider it to be my primary RLS resource. The articles, comments, replies, and videos are informative and inspiring.
It will take a while before I have fully mastered navigation of this website. However, in my limited exploration thus far, I have not found a discrete link to a lexicon by which a visitor quickly might learn the pseudonyms for various of the patent and generic medications mentioned. [The link to "RLS Medications" appears to be to comments and replies but I did not find a conspicuous link to a list of popular RLS medications and their aliases.] Instead, I surf elsewhere only to find find that I was taking the same medicine but didn't recognize it as named.
Examples: I knew that Tylenol and acetaminophen were the same, but recently learned that another name: paracetamol. Same for Mirapex and pramipexole which appear to be the same as "Sifrol." And, while updating my list of RLS medicines within the past month, I was surprised to find that two of the listed medicines (Klonopin and clonazepam) were, in fact, the same.
Apologies if I missed, but If a lexicon is not already posted, I thought it might be helpful to do so. If feasible, it also might be helpful to have a hyperlink to the lexicon for each name of each popular RLS medication mentioned in a comment or reply.
As a neophyte to this website, I would not presume to make this suggestion to the website owner or administrator. So for whatever it may be worth, I am posting here.
Interesting. It could be useful, as US members of this forum sometimes use brand names - such as Tylenol, Advil, Mirapex(in) - which have to be looked up here to find the generic name or active ingredient name (paracetamol, ibuprofen, pramipexole respectively). And no doubt the same thing happens in the other direction. And of course we have forum members from many other countries... How feasible a lexicon is....? I'd hate to think how many different brand names there are for some medications! There are *at least* five for Pramipexole. And I'd hate to think how many there are for anti-histamines, anti-nausea drugs etc!
Hi, ChrisColumbus and thank you for your insights.
I hadn't realized that the task might be as daunting. Nevertheless, some of the otherwise insightful comments and replies posted here have gone over my head or have been left unread simply because I was unaware that the medicine under discussion was one that I already was familiar with or interested in learning more about. And, though I am possessed of my full faculties, I routinely find myself having to look-up "Roprinole" and ""Rotigotine" as I just can't seem to remember which is Requip and which is Neupro (though I have taken both in the past).
Your remark about persons speaking other languages is, in my opinion, well taken. Though this is an "English" language website, some of the same medicines have different popular names even among the visitors from countries where "English" is the primary language. When one adds the visitors from from countries where English is not the primary language, it might be impractical to list "all." Maybe I was a tad too selfish?
Perhaps there could be a page or whatever on this website where, e.g., the most "popular" two dozen prescription medicines for RLS could be posted by the name of the patent medicine (e.g., Tylenol) and then registered visitors each could access to same to edit (like a "Wiki") to add popular names for the same medicine (e.g., paracetamol, acetaminophen)?
I have 38 pages single spaces of medicines that help, hurt, or have no affect on RLS, and also many OTC ones too and have all the names I have found for them, but obviously am not going to post them. If anyone has a question about any specific one I will be glad to answer. For example: Tylenol (Panadol, Acetaminophen, Ofirmev, Mapap, Pharbetol, FeverAll, Tylophen, paracetamol, Tactinal, Acephen)
Hi, SueJohnson, and thanks, as always for your prompt reply.
I appreciate offer. I may not have been quite as clear as I should have.
I wasn't suggesting that an entire inventory of all the many medicines, their side-effects, the dosing, etc., be posted. Rather, just a simple "also known as" that might appear either as a highlight to a medicine named in a post (e.g., if someone wrote "Mirapex," when a cursor scrolled over same it might provide some other popular names, e.g., "pramipexole,")
Alternatively, in the absence of same, if a visitor clicked on a popular medicine mentioned in a comment/reply, a hyperlink might take the visitor to the same type of basic info.
I confess that, though I consider myself more than casually familiar with the many available RLS medicines (both Rx and OTC), I find myself having to look-up the names of the medicines about which many comments and replies pertain. Sometimes, when I do so, I end up leaving the page that contains the very comment or reply that I was reading, as I have to open a different website altogether.
I agree that a lexicon would be useful as it can be difficult for new members to navigate the various medication names.
I don't know if the set-up of this site would support what you're suggesting in terms of the hover effects/hyperlinks. That would be a question for the administrators.
While it's good practice to refer to a medication by its generic (active ingredient) name, I appreciate that sometimes people don't know the generic name.
Long term forum members and those of us who use the site regularly do tend to become familiar with the various medication names, whether generic or brand names.
If you were inclined to prepare a lexicon then i'm sure other members would be happy to input to it. It could then be pinned as a post (subject to administrator approval).
If the lexicon were limited to the major RLS medication classes - eg alpha delta ligands, dopamine agonists, opioids etc then it might be more digestible - and manageable as an undertaking.
Hi, Amrob, thanks for your thoughts. I try not to make work for people and have found that the easiest approach is often the best. My own list (compiled from memory) has many, but not all, of the popular medicines. I certainly wouldn't mind adding to that list to contain some others that I may not have taken. I will do so in the next couple of days. The list will be short and simple: Patent name(s) and popular generic names that are readily found following a quick surf of the 'net. I'll post the fact that it's good-to-go here when done, but will defer posting the actual list as a link or hot-link or whatever to others.
Some names are so similar that, with the passage of time, I sometimes confuse despite my superb memory. For example: as noted, the list that I presented last week to my current general practice physician was going to include both Klonodine and clonazepam; I struck clonazepam after confirming that they were the same. But that list also included something called "clonodine." Silly me! I also deleted "clonodine" thinking I had mis-spelled Klonopin; in reality, clonodine is a different medication altogether. I will include all in the list.
Just thought of something: "Patent" names will be based principally on US names. In the case of different Patent names for the same medicines in other countries, I am not sure if I should include in a separate column. I'll think about it.
Me, again. I work very quickly and efficiently. The task is done!
I prepared an easily modifiable spreadsheet, "List of Popular RLS Medicines." I contemplated various formats (e.g., whether to include a separate column for each country, how to treat multiple names for the same patent medicine in the same country, whether to include different "strengths" of the same medicine, whether to include entire formulations or simply the short-form generic name, and among other things, whether to distinguish between "standard" and "extended release" formulations). Again, I defaulted to simplicity.
As presently constituted, the list contains contains only four columns: one for a patent name; and three for generic names. One name in each column. In the case of multiple patent names, each is entered as a separate line entry, complete unto itself. Popular, short-form names are used, and I did not distinguish items based on strength [n]or whether standard or extended release. All Patent names are "assumed" to be US (though I suspect that I might have been a bit generous); patent medicines believed to be of foreign use are annotated parenthetically (e.g., "UK," "Canada").
Much of the information was derived from my own memory and usage. However, I double-checked with what I believe to be reputable on-line sources. I relied extensively on information published on: drugs.com/ Though I made a good faith effort to ensure the accuracy of the information listed, it should be considered a "rough draft," both as to form and substance, and a pattern upon which some final iteration, proofed for accuracy and more completeness may be based.
I can present same in Excel, Open Document Format, PDF or however else convenient.
I think your idea and work done is very useful. And most appreciated. What does surprise me is your take to put US patent names first, as this is a UK website, maintained by the UK patient organisation rls-uk.org and supported by the European EARLS.
Also, you mention 'several generic names' and that puzzles me. The generic names refer to the substance name of the medicine. I suspect by 'generic name' you mean broadly known brand names. But that depends very much on the country you live in!
The generic or substance name of the active ingredient is only one name that is/should be the same all over the world. Or two names in medicines with a combination, eg oxycodone slow/extended release with naloxone for the one opioid officially tested (double-blind placebo-controlled) for RLS: Targinact. A bit like the Latin or Linnaean names for plants and animal, e.g. 'Homo sapiens'. Using the substance/active ingredients names in the first column would be best and most logically in my opinion. And always add a remark that the package of each medicine always gives the substance name in addition to the 'brand name'. That would help people to know where to start looking.
I would also take Amrob's suggestion to limit to main medicine groups used for RLS and order them accordingly.
Incidentally, are you familiar with the listing and discussion of medicines on dr Buchfuhrer's site rlshelp.org?
Kaarina, can you agree? And when ready, can RLSIconoclast's list be marked as a pinned post?
Good morning, LotteM, and thank you for your considered reply. I concur with various of your points. In fact, before reading your reply, I wondered whether there was a need at all to enter the country of origin. In my defense (defence), US names were not listed "First," in my latest draft; rather, the list contained all Patent (now, "Brand") names sorted alphabetically. And, I did watch a YouTube video of Vera Lynn singing "We'll Meet Again," before I went to sleep earlier this morning.
My research occasionally found more than one so-called "generic" name and more than one "Brand" name for the same medicine. I suppose that there may be as many Brand and generic names as there are countries in which the medicine is dispensed. Only this morning did I learn that yet another medicine that I had been taking for 20+ years that had been labelled "hydrocodone 5-300" is in fact "Vicodin" and not "Hycodan."
I also changed the term "Patent Name" to "Brand Name" as some medicines may be, in some countries, trade-secrets rather than Patents in the technical sense. The name of the List also has been changed to more closely reflect what it is: "Brand and Generic Names of Popular RLS Medicines." I did include one non-Rx medicine: Tylenol. I did so because it is a popular component of various other RLS medicines.
Again, I emphasize, that the List was prepared as a starting point. I claim neither ownership nor any rights with respect to its form or substance. It would not offend me at all if UK names were listed "first" or if the format were totally reworked so long as the intent was served.
On the last major point about Dr. Buchfuhrer and RLS.org: For more than 20 years, I regularly donated to and supported RLS.org. I distributed literature at a US Congressional Subcommitte on RLS, I participated in a joint National Institutes of Health/Johns Hopkins University Study wherby I was examined by eminent European Physicians expert in RLS; and I read and valued various of Dr. Buchfuhrer's comments and replies to questions posed. Respectfully, I no longer have anything to do with RLS.org and no longer visit that website nor further read the postings of their "experts."
Be aware that Dr Buchfuhrer's site rlshelp.org is not up to date as he has admitted. For example under treatments he mentions NEW for medicines approved in 2012 and it said the average dose of gabapentin is 800-900 mg, the usual bedtime dose is between 300-800 mg. and it says totake iron 3 times/day.
Good morning, Munroist, and thank you for your reply. My question is how do I post the List? In this regard, please note that it is intended to be a work in progress, subject to editing howsoever a person might wish to. It may be best for me to present in a spreadsheet rather than a fixed format.
Pardon my ignorance, but the last icon in the row below (looks like an image of sorts) appears potentially useful. Does that mean that I can upload a photo? If so, I can take a snapshot of the List as it presently exists and post so you and others can see what I am talking about.
Be well.
PS: I figured out how to post List as "image" file. Uploaded same.
I’m sure you will have seen that Kaarina has offered to add the information as a pinned post and I can also see that you’ve worked out how to to upload an image or a file.
This article below may help, at a minimum to show that each drug can have several generic names depending on country as well as many other brand names.
I have had a quick search but couldn’t find any convenient lists … the WHO ones are very detailed and not easy to use I’m sure a list of just those related to RLS will be a useful reference .
Thanks, Munroist, and I very much appreciate link. Having studied six or more languages over the years, I confess that I nonetheless got lost when the discussion turned to international naming conventions.
While I continue to believe that there may be utility in the List, it was my intent to keep things simple and to minimize workload burden on myself and others. I thought of adding to the title "Some" Brand and "Some" Generic Names. Again, at the risk of sounding lazy (curmudgeonly), I did not contemplate making an exhaustive list; rather, simply suggesting and presenting what I thought to be a reasonable paradigm that I and others might add to--or subtract from--as they felt warranted.
Of course, it would also be helpful if people knowingly using a brand name could give the generic name afterwards - e.g. Crestor (Rosuvastatin)
And an additional point, it's often useful to know which country a member is in: there's a field in the Profile for country which quite a few seem to leave blank. I used to assume that this meant the member was in the UK, but realised that often wasn't the case! I can understand some people's reluctance to reveal how old - or young! - they are, but country is useful info in considering/replying to a post. While as Lotte points out this is a UK/ European site, we know that we have a lot of members around the world
Good morning, ChrisColumbus, and thank you again for your reply. I didn't realize that Crestor was used for RLS; did you mean for me to include in List?
I thought I had included a disclosed country of origin in my Profile. If not, I will try to do so when I get the chance. While I concur with that the country of origin might be useful, I now will defer to smarter folks than I to make that call. The present draft has removed all references to US, UK, etc.
Be well.
Hi, All. I hope I am not out-of line, but while you consider utility of the List, I found a way for me to post an "image" (v. spreadsheet) of what I am talking about.
I've uploaded here pending a decision by others as to whether and how to post in spreadsheet format. Again, though I believe the List to be accurate and have presented same in good faith, it is my wish that it be treated as a rough draft, not to be regarded as authoritative, accurate or complete till someone with more expertise than I has looked over.
Note that the List includes one extra column for "Generic Names," which as yet has no entries to illustrate that additional (or fewer) columns may be included.
Almost forgot: I made a slight annotation at the base of the list to give credit to two of the principal resources (in addition to my own memory) upon which I relied: drugs.com/ ; and rls-uk.org/ If found to be unnecessary or inappropriate, the citations may be deleted.
To enhance viewing, you may wish to: (1) Click on magnifying glass to enlarge image; and then (2) "save as" the enlarged image to your computer or smartphone. You then can further enlarge or otherwise manipulate the saved image. [I found that saving the image before enlarging with the magnifying glass resulted in a truncated image that displayed only a portion of the List.]
Be well.
UPDATE (December 20, 2022): Per SueJohnson's obervation on the earlier image, I edited the List to change the generic name of Sinemet to "Carbidopa and Levodopa" rather than separately listing each as a discrete generic name. I also changed the Title to include the word "Some;" i.e., "Brand and Generic Names for Some Popular RLS Medicines." Other changes were made to enhance ease of viewing:
--Opaque white background to Title and bottom narrative texts;
--All medicines now are in boldface;
--Date of last revision included (months will be alphabetic v. numeric to avoid potential confusion due to different dating conventions);
--The last column has been deleted as superfluous; and
--The format is now "Portrait" rather than Landscape to fit in one page.
Please excuse issues regarding quality of image. I'm not a photographer and did as well as I was able to. After about a dozen or more attempts, this is as good as I could get.
Upon their request, I will email original in LibreOffice Open Document Format (or other format) to any of the administrators so that the List may be edited further on the fly by them or by anyone viewing same without having to rely upon me to keep current.
Brand and Generic Names of Some Popular RLS Medicines
Hi, SueJohnson, thanks for mentioning. I apologize. I too had difficulty. To resolve, I think you first need to enlarge using the magnifying glass icon adjacent to the image. Once enlarged, you then can "save as" the enlarged image to you computer or smartphone.
Once saved, the image may be further enlarged or manipulated as necessary. [I found that saving the image prior to enlarging may result in a truncated copy being saved.]
I've edited my post, above, to incorporate your observation and remedy. Please let me know if this did not fully address your concern.
Hi, SueJohnson, and thanks for your diligence. I am soon off to my doctor; If I can, I will remove earlier image and repost as edited (with conspicuous revision date).
Meanwhile, if you or anyone knows how for me to attach or upload in open document format (LibreOffice) or Word or pdf, it might facilitate revisions/edits by me and others v. taking photo with less than stellar image quality. I can, if preferred, email in open document or other format to the email address of an administrator.
Hi, Kaarina, and thank you for your quick reply. I thought as much. However, ...
While surfing this website, I found at least three email addresses, conspicuously posted. I've redacted, in part, in case you do not wish reproduced here::
2. Membership Contact: [redacted by me].membership.rlsuk@btinternet.com see: rls-uk.org/contact ; and
3. Chairman Queries: [redacted by me]@btinternet.com ; see: rls-uk.org/contact
I inferred, therefore, that there also might be an email contact for remitting information of common interest. Sorry!
I think that I've taken this issue as far as I can. It doesn't appear to be efficient for me to continuously update, print, photograph and upload an image every time the List is edited. If there is no easier alternative, you may retain or delete the image in your discretion. Thank you for your consideration.
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