Hi everybody!It has already been a month since stopping pram because of augmentation (i had been on 1× 0.18 pram since 2012 but i also have to admit that ignorant doctors made me upper the dose some times) and 5 weeks since starting lyrica.(Currently 200mg 2 hours before bedtime) I have started to get some better nights but still get some very bad nights.Still get rls during the day when i feel tired and lie down.
I d like to ask those who have already gone through it.How much time did it take to get a stable improveness and when did the rls get settled at daytime?
Thank you!!
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Katerina22
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Hi Katerina, very well done for getting this far in discontinuing pramipexole.
I’m not sure there is a straightforward answer to your question. People’s experiences vary individually and a lot also depends on the drugs prescribed during and immediately after withdrawal. I think it takes a good while for lyrica to start to take effect after d/a withdrawal.
It took quite a long time for my symptoms to settle down after I discontinued pramipexole. I was on a much higher dose than you however (1.66mg daily) and had been on it for a long time.
With hindsight, I think my daytime symptoms started to settle down when I really made an effort to get my serum ferritin levels up. Unfortunately, I did not prioritize this and I think it started to happen about 8 to 10 weeks - maybe longer - after I took the last pramipexole.
I too started lyrica as I came off pramipexole. I only went up to 150mg but found it didn’t help at all so came off it after about a month which may have been a mistake. It can take a long time to take effect and you should probably stick with it for another month or so anyway. I wonder if you were to space your dose through the day, would it help with daytime symptoms? The question then I suppose would be would you be getting enough in the evening to get you through the night. I really don’t know the answers to these questions - it might be worth discussing with your GP.
When I came off lyrica, my Rls was totally untreated and was wild. I became deliriously exhausted and sort of spiraled. After about 2 months my GP prescribed oxycontin and I got the first proper sleep at night. Once I started to sleep at night, things settled down a lot. Definitely RLS symptoms behave better when you are well rested (in the ultimate of ironies). Once the symptoms started to improve I embarked on the journey to find the optimal management/treatment of my symptoms. I have looked back over my notes from the time and it looks like I continued to improve for nearly six months - maybe even longer.
Sorry for long-winded ramblings. To sum up I would say that my experience suggests that you will continue to improve for maybe another couple of months.
If you wanted to expedite your improvement, you could ask your GP for a temporary course of tramadol which might help your daytime symptoms and even your night time sleep for now. A word of warning, however. I’m not sure how difficult it is to discontinue tramadol but OxyContin is not pleasant to come off. I would say that it’s not a good idea to stay on those drugs for too long unless they are part of a long term strategy.
Thank you very much for your answer!May i ask you if the the high ferritin levels would help during augmentation? I had an iron infusion -my ferritin levels got very high-when augmented and while i was still taking pram but didnt help at all.
That’s an interesting question. I don’t actually know. I have seen speculation that high serum ferritin can delay augmentation and also that high levels can help with the impact of withdrawing from pramipexole but not specifically if they would help with Rls during augmentation.
I suspect that augmentation would trump the positive impact of raising serum ferritin but don’t know for sure. There is also the possibility that you are one of the minority for whom raising iron levels does not help.
When I took Lyrica the effect was instantaneous and it was a total surprise and not recognised at the time ( was given for another condition ). Was initially taking only 50mg. But my RLS had not been pretreated with anything else so it probably takes longer and/or you need higher doses if pretreated or had augmentation. It eventually caused augmentation too though.
I augmented badly on ropinirole and I withdrew off that, amitriptyline and zydol xl all at the same time! I started pramipexole at that time. I was off work for 8 weeks but I’d say it took 3 months to get stabilised on pramipexole and start sleeping better.
I was on 1 mg pramipexole, 3 to 4 x day. I stopped on Jan 20, this year and spent two miserable weeks, in which I got about 8 hours sleep, total. Then, I had another 2 weeks with the symptoms consolidating to night time and gradually easing, somewhat. Toward the end of the 1st two weeks I found that 1, or occasionally 2, 10/325 Oxycodon/Acetimaphen would enable me to get some sleep. I didn't want to even think about easing the symptoms with pram. or any other dopamine agonist, and was concerned with addiction to the Oxy/Acetim. So, I tried to take them as infrequently as possible. About 5 weeks into withdrawal I got into the RLS Clinic and met with a Specialist who put me on the right course.
Sorry, have drifted off with my story.
Back to your question. I quit "cold turkey" which I would not recommend, but I didn't know any better. It took about 6 weeks + for me to begin to feel semi normal and see the light at the end of that awful, Augmentation tunnel.
However, everyone acts and reacts differently to RLS and to the various attempts to control it. So, you have to select your course of action carefully, and hopefully, with guidance of a RLS Specialist and not your average PC Doctor. Check the RLS.ORG web site for a list of Certified Clinics and Doctors and get their help.
Best of luck and please let us know how you are doing.
Gee, Bd, I never cease to be aghast when I read the size of the dose of pramipexole you were on. You showed unbelievable tenacity to get off that and get yourself sorted with Horizant.
I was really anticipating they would switch me to dipyridamole to ease the problem with Horizant. But, my Dr. is not familiar with it! So, I guess I will have to put that one on hold for the time being.
But, the good news is he is scheduling me for Iron Infusion. Will let you know how it goes.
Please keep posting your updates on your program. I am sure we all are hoping and expecting the best for you.
Well! I got the Iron Infusion last Friday. Slept good with minor RLS for the last 3 days, with NO drugs. It was the best most restful sleep I have had in years. The RLS seems to be isolated between 12:30 AM and 3:30 AM. And, it is minimal enough that I have been able to turn over and go back to sleep. Of course, it has only been 3 days, so I hope I am not counting my blessing too soon.
I estimate that the iron infusion has remedied 80 to 85% of my RLS. I don't know how long it will last, and I don't know if others will have the same result. I certainly hope so, in both cases. I have ask my Dr. to give me a second infusion, in hopes of getting closer to the 100% mark. Awaiting his reply.
That’s great news, Bill. So pleased for you. I have heard of some people who continue to improve for some time after their transfusion so maybe you could get even better. I am inspired to contact my GP and try to push him over the line for a transfusion.
That is really good news, Bill! I sure hope it keeps up. Amazing that it works so fast. From what is known about brain iron influencing the amount of braincell receptors crucially involved in RLS, I would expect the positive effects to take a little longer to reveal themselves. Thus, be patient and keep us posted!
Meanwhile, reading that you’re “able to turn over and get back to sleep” makes me a little jealous.
Incidently, Bill, what were your ferrtin and other blood levels of iron that prompted the doc in the RLS Clinic to offer you the iron infusion? Or what other considerations prompted it?
LotteM and ID, thanks for your encouragement. I too am pleased and sincerely hope you two and others are able to get this option. My Dr. is off for a few days, so I am waiting to hear back on the 2nd round. My first 2 questions are, how long does it take for the iron to get to the brain; and, any idea how long it will last.
LM, my iron numbers were pretty much middle of the road. In my first meeting with my Dr., I told him that I had researched the Iron Infusion and would like to try it. He stated that he had not yet bought-in on it, but if I really wanted it he would consider it. I think my problems with Horizant on gait/balance, hazy mental state, and sexual dysfunction, spurred him on to action. And, they all, have turned around. I know you can't imagine which one I was most concerned about!
I hope you are both right and the results will improve with time. I'm not sure my wife wants to hear that.
Looking over posts by others who had infusions it seems that it can take up to 4 or 5 weeks from the last transfusion (there is quite a range for the number of infusions people get - from 1 to 5) for the iron to afford full effect.
It seems that the good effects can last from 6 months to about two years. It is probably worth getting serum ferritin checked the about 4 weeks after the last transfusion and then every 6 months or so.
I really hope the results continue to improve, bill. I’m sure your wife is secretly delighted also! It’s important not to let husbands feel too entitled 😉
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