I’m hoping this will be of interest to some of you. Any comments really welcome.
I am reducing my pramipexole, by half a tablet every 2 to 3 weeks. Currently I’ve cut out 2 x half tablets and about to cut out the third half.
I’ve also had a full iron panel blood test. I discussed with the Doctor who has diagnosed ferrous fumarate 210 mg tablets. I currently take gentle iron tablets every other day. I’m not decided yet if I’m going to take this iron tablets or not. I need to do some research on it and think about it, somethings I read on here seem to suggest it’s not the best idea.
I have okay days and rubbish days/nights. There is a pattern emerging in that the worst days are occurring just after I’ve taken the half tablet. Every so often I get an afternoon evening when my brain stops working, I feel really ill and I just have to go to bed. It’s hard not to panic on days like this!
I also suck a cbd Gummy Bear a bedtime which I’m convinced helps. During the day I will suck on one occasionally if I’m having a bad time.
Night times vary too. Some nights I get full body jerks other times it’s not too bad. I seem to sleep since I’ve taken the gently and every other day, and suck the gummy bears. This is a result in itself, but I don’t feel rested.
Anyway thank you for listening. Not sure I make much sense really, but it’s nice to just say things out loud.
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RestlessMe
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How much pramipexole is in each tablet and how much are you currently on? I assume you mean the worst days are after you have just reduced by a half tablet and that is to be expected. The ferrous fumarate is OK, It may or not be as good for avoiding constipation. You will quickly find out once you start taking them. What was your ferritin?
Hi thanks for your postI too have suffered several years with rls and am on Pramipexole which until recently was one tablet three times a day but want working. I had meeting with gp when I requested to change to pregabalin or similar but was advised against due to side effects so suggested increase Pramipexole to one in morning two at 4pm and two at 9pm and so far it’s working great with no symptoms of rls. Unless I forget to take of course 🥴
That is .9 mg a day whereas the acceptable maximum daily dose is 0.5 mg. As far as side effects of pregabalin most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. Whereas up to 70% of people on pramipexole will eventually suffer from augmentation which believe me you don't want and the longer you are on it, the less likely when you do have to come off it that pregabalin will work. In fact if you need .9 mg you may already be augmenting. Try reducing to .5 mg and if that doesn't control your symptoms, you are augmenting.
I am on 0.88 of pramipexole, so a low dose and I avoided taking two a day which the doctor did recommend, other than on odd occasions. Ferritin levels to follow
Your transferrin saturation is below 20% so you probably need an iron infusion and your ferritin is below 100 which if you improve it to that helps 60% of people with RLS and in some cases completely eliminates their symptoms. The usual advice is as follows: if your ferritin is less than 75 take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day preferably at night at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you may need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.
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