Current docs don't consider the RLS guidelines for iron infusions. Just keep upping doses on Ropinerol.
Now having augmentation & strange compulsive thoughts/ behaviors.... Can't continue much longer like this.
Got iron infusions for Covid and side effect was my RLS disappeared for a month after each.
I always have low but not quite anemic iron levels so docs won't prescribe more infusions.
Need a doc who will go by RLS iron guidelines.... Not anemia. Send help! 😩
Other members may give you advice, but meanwhile the RLS Foundation lists four in NY - two in NYC, one in Yonkers, one in Albany. If you click on their names from the link below it will also show which institution they work for etc:
rls.org/treatment/find-a-he...
Thx! Yes, I reached out to RLS foundation because I have been to the Weill Cornell neurologists and they just kept upping gabapentin & seemed quite Rx oriented instead of listening to the iron infusion guidelines. My ferritin is always 12-15 (normal range 6-137) so I'm very low but not anemic.... so the docs there won't do infusion.... I have not been to the one in Albany yet. I will try her office today when it opens. Thx again for your reply. I feel so alone I in this. It's nice to have camaraderie.
Hi Sky, I am so sorry of your struggles within the medical system. It seems we all ("me") have crossed those struggle bridges throughout our RLS histories. I can only add one thing here based on my experience with a low Ferritin which hovered around "6". I found out I had a Helicobacter Pylori gut overgrowth. I had a breathe test for a particular gas H. Pylori emits and it was positive. My gastro doc put me on a specific antibiotic for it for 2 weeks and then I had to test again to make sure I was negative. In the meantime, my hematologists approved an iron infusion. So between the two things, my RLS was helped in intensity, but not frequency. I'd say it improved about 40-50% which was wonderful but I still had the RLS problem. My ferritin and iron panel have held to normal levels for 2 yrs now since the infusion and since getting rid of the H Pylori. Both docs said the H Pylori was probably the reason I wasn't absorbing oral iron through supplements and food prior to making the discovery. I won't go into the mechanisms of how H Pylori can affect iron absortion and even trigger RLS but the research is there. So... just a thought, since your husband is in the field, maybe get a H Pylori test at the lab, it's simple - just to rule it out and go from there. Best of luck
These are the doctors ChrisColumbus mentioned:
David J. Dickoff (914) 968-0620 Yonkers
Jennifer Durphy (518) 262-6611 Albany
Ana C. Krieger (646) 962-7378 New York
Harini Sarva (212) 746-2584 New York
They are recommended by members of the RLS Foundation so are knowledgeable about RLS, but remember that just because they helped a member, they may or may not be uptodate. For instance the member may have been helped by a DA so recommended them, so ask questions of their office before making an appointment. For example ask them if they are familiar with the Mayo Clinic Updated Algorithm for RLS and follow their guidelines.
They may or may not have been recommended by a member. Members can suggest that their health care provider registers for the Directory, but the Foundation also invites providers to register if they have "knowledge in the treatment of restless legs syndrome (RLS)."
"The RLS Foundation makes no representations concerning the quality of medical care or level of professional skills of any specific healthcare provider. In addition, the listing of these persons does not constitute or imply a recommendation or endorsement by the RLS Foundation."
But at least a member or the health care provider *thinks* that they know something about RLS!
Thx! Yeah, I've been to the Weill Cornell docs .... They are very Rx oriented. Just kept upping gaba & DA & oral iron. Refused to consider infusion unless my 13 ferritin dropped below 6. (Normal is 6-137). I'll try Albany today.
PS if anyone on thread had different result at Weill Cornell please let me know how you convinced them to consider iron infusion. 
if you have already proved that iron infusions relieve your RLS completely then it’s blindingly obvious that the simplest and least damaging course of action for your health is continued infusions. The current best practice document, The Mayo Clinic, agrees and furthermore expresses significant reservations about dopamine agonists with their issues of compulsive behaviour, eventual augmentation and horrendous DAWS, and “preferred” first choices such as pregabalin can also have significant side effects for many along with altered perception and disinhibition. Pregabalin is a class C drug in the UK because it can be addictive and changes mood. Put simply, iron infusions address the root cause and done properly will give you a life long solution without life changing mental effects. I can’t see how a doctor with intelligence and integrity could still justify anything other than the infusion.
Right?! Yet again today my hematologist said she couldn't do iron infusions if I wasn't anemic .... I quoted someone on this RLS support group and said I'm not anemic and don't need to be treated for anemia- I need the standard of care given to others with my syndrome.
On the basis my 12 ferritin (6-137 is normal range) she agreed to 2 iron infusions but no more.... And she was so grudging about it.... Like she was doing me a favor. I should be jumping for joy that I'm going to get proper treatment soon.....but I'm kinda seething. Why do I have to wheel & deal & for an anemia treatment instead of getting it on RLS merit alone? I feel like RLS is not acknowledged as deserving of it's own criteria. And I kinda get it.. . Not a lot of docs study it. RLS is not the sexiest of disease names. It sounds trite. No one is doing a fundraiser walk for us... except maybe down the bedroom hallway.... all night. Can we get a re-branding? Something with more allure? Something docs will actually click on when selecting CME's? 😅
I agree you are having to work too hard for this but sounds like you have a result and once the precedent is set it will become harder for them to refuse. Most treatments require continual administering, they wouldn’t just give you a few DAs and then refuse to give you more and iron therapy is no different other than needing to ensure you stay within safe limits. I hope this works for you.
It is extremely rare for pregabalin to be addictive. Yes it can have significant side effects for some, but not for most. Yes it can change mood and alter perception in some, but no a side effect is not disinhibition and believe me I have researched it and compiled a list of all possible side effects. It is a side effect of DA's.
Hi Sue. OK addictive might not strictly apply but I suspect you can become dependent on it and there can be problems with misuse. Regarding disinhibition I was warned about this when I took it (for over a year) and definitely noted some decisions e.g . while driving and in conversation that were very out of character and where I was lucky there weren’t significant consequences.
I think the link below explains what I’m referring to in useful detail. My view is that I could live with pregabalin if my RLS got worse and I had no alternative but otherwise I was glad to get off it.
I'm seeing Dr. Daniel Barone from Weil Cornell medical center in NY. He is a sleep specialist that follows the Mayo Clinic guidelines for RLS.
So far things are going well. Slowly getting off pramipixol
Which I have been on for 10 years.
The compulsive thoughts and actions are terrible from these meds. I'm down to . 125 mg and doing better. He has prescribed a low dose Methadone to help with withdrawal from Mirapex.
And it is helping like nothing else has.
It may take a while to get an appointment but he's worth it.
All the Best,
David
Methadone has been the missing link of comfort while coming off Mirapex. Sometimes there is a little constipation which I treat with MiraLAX.Don't overthink it. Best David
RLS specialist in Ireland
Informative video on updated RLS guidelines
How to avoid iron overload
