Just had a blood test and my HB is 155 the doctor say this is OK? RSL seams to be getting worse was on 4x25mg per day now on 6x50mg per day and if I miss a dose or not on time the legs start to go, and body (arms at night) I do not want to increase my dose but else can I do , (repinirole) plus lansoprazole (1 a day),and 1 outer table (1 a day).
Help
I am getting tired to this and need help the doctor say I can go to 9mg per day ,I donot like the withdrew symptoms when I miss doses is there any thing else I can approach the doctor with?
I am eating more bananas I do not know if this helps,but it seams too
Mark
Written by
Africatwin
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It might be a good idea if you were to see a doctor who is more knowledgeable about RLS. Your current doctor seems quite ignorant.
Firstly, it's great your haemoglobin is OK, this means that you're not suffering iron deficiency ANAEMIA. However, RLS is associated with BRAIN iron deficiency (BID) which can exist in the absence of anaemia.
BID is due to a problem with iron getting from the blood into the brain. In order to test for this you need tests for serum iron, transferrin and ferritin. Even if you had these tests and your doctor said these were normal, this wouldn't help. E.g. a "normal" level of ferritin is anything above 15ug/L, but for someone with RLS a ferritin level below 100ug/L is considered insufficient. 50% of people with RLS have improvement with raising their ferritin to at least 100ug/L. I guess your doctor doesn't know this.
Some RLS experts say it should be 300ug/L, but that is quite difficult to achieve.
Normally, you can raise your ferritin level by taking an oral iron supplenent, no prescription needed. A "gentle" iron will work. It's best to take this once every two days, (NOT every day). You should also take it in the evening, on an empty stomach and swallow it with a glass of orange or a vitamin C tablet. I'm guessing your doctor doesn't know this
Ropinirole is a class of drugs known as dopamine agonists. I think you may have made a mistake with the dose you take, the usual dose for RLS is 1 or 2mg, perhaps up to a maximum of 4 mg. 25 mg is absolutely massive! Even 9mg is over twice the recommended maximum.
However, what your doctor also seems to be ignorant of is that although this dopamine agonist (DA) can be very effective at first, in the longer term a DA can cause a condition called "augmentation".
This is where instead of relieving symptoms, the DA starts to make them worse. Not only do they get worse, but they can start earlier in the day and they spread from the legs to other parts of the body, e.g. the arms.
You are suffering from augmentation.
I think you're getting the message now about your doctor! Increasing the dose of ropinirole will only make augmentation worse.
The solution to augmentation is to REDUCE the dose
Another suggestion many doctors wrongly make is to switch from ropinirole to another DA, i.e. either pramipexole or rotigotine. These are also DAs and hence also cause augmentation.
The only sure way to deal with augmentation caused by any DA is to stop taking any and all DAs. This is what RLS experts, (which your doctor isn't) advise.
In addition to this, lansoprazole is a medicine known as as a "proton pump inhibitor". (PPI). These are great for reducing stomach acid and hence help prevent the damage that can be caused by such things as acid reflux.
However, PPIs also inhibit the absorption of iron and magnesium from the gut and can prevent the absorption of vitamin B12. Deficiencies in these 3 can make RLS worse and in some cases cause RLS.
If yiu do have deficiencies if these then, correcting these deficiencies may help improve your RLS.
Unfortunately, taking oral supplements in iron, magnesium and vit V12 might not be too successful if you are taking lansoprazole.
There are many other medicines which make RLS worse. I don't know what "outer table" is, so can't comment on that.
In summary, your current situation is that you are suffering augmentation caused by taking ropinirole. Your situation is also made worse because you are taking lansoprazole. Your RLS may also be worse because you may have BID and this may be due to your ferritin level being too low.
The single most effective thing you can do is to reduce and possibly stop taking the ropinirole. Do NOT increase IT!
This is not an easy thing to do. Firstly you must NOT stop taking ropinirole suddenly. This is very dangerous and can lead to a condition known as Neuroleptic Malignant Syndrome which is potentially fatal.
This is luckily rare, but within no more than 24 hours of suddenly stopping ropinirole you would experience withdrawal effects. You have probably already had a taste of these. Withdrawals usually consist of a significant worsening of RLS symptoms and sleeplessness.
This is because you are dependent on the DA and your brain cannot manage without it.
Withdrawal from ropinirole therefore needs to be done by slowly reducing the dose in steps. How long this takes depends on what dose you're currently taking, but it should be done in no less than 3 months.
I usually advise reducing the dose by 0.5mg every 4 weeks. If withdrwals are too severe after reducing by 0.5mg, then it's better to reduce by 0.25mg every 4 weeks.
You can see that if you really are taking the dose you state it could take you years, but I think you're mistaken.
If and when you stop taking ropinirole altogether, the augmentation will probably disappear. It takes a while for withdrawal effects to disappear, but after that it's highly likeky that you will still have RLS symptoms.
In which case you may need a replacement medication for your symptoms. There are 2 medications that are recomnended as alternatives to DAs. These are either gabapentin or pregabalin. Pregabalin is the stronger of the two. They both work the same way and they do not cause augmentation.
It's now becoming accepted that one of these should be the first choice for someone newly diagnosed with RLS.
You can take one if these at the same time as ropinirole. It's better to start taking one BEFORE reducing the ropinirole.
This is quite a lot to take in so I won't add much more for now.
Unfortunately, like a lot of doctors yours appears quite ignorant about RLS. This is not to blame him/her. They can't know everything.
A good doctor will admit their ignorance and discuss things with you and be willing to learn from you. If they don't, then find a doctor who will.
First you need to learn yourself about RLS, augmentation, how to deal with it and how to manage it.
You can always come to this forum fir more information.
In the meantime I suggest you read the links below.
Hello Manerva I have read quite a few of your posts on this forum and I really admire how informed you are. Your answer to this person's question is nearly the same as I might expect to mine. as follows. In October I will be 90 and have had RLS since I was pregnant at 22 It has got worse and worse over the years and shows no sign of diminishing. I was given the usual D.A meds but couldn't tolerate any of them . I have been on Tramadol for about two years now and it has been fairly successful. Two months ago I went into what I can only call remission, it was heavenly. It came just out of the blue, I had done nothing different. It lasted for about 3 marvellous weeks but now the RLS has kicked in again with a vengeance. I'm getting no sleep and can't even rest during the day now. I have been so desperate I have taken another tramadol in the middle of the night (I know I shouldn't but get desperate.) I am wondering if I should come off Tramadol and go onto Pramipexole but don't know how to achieve it. Can I drop one Tramadol and take one Pramipexole and so on until Tramadol is finished and I am onto the new med? I am trying to find a way around dreadful withdrawal symptoms, at my age I don't think I could cope. I live on my own with no family nearby. My Dr did listen to me in the past but admits to knowing nothing about RLS I do take an iron supplement and also magnesium so do you think I am experiencing Tramadol augmentation? Hope you can help
I'm here again. I take 4 50mg tramadol tablets between 4.pm and 9 p.m and just sometimes in desperation another in the middle of the night. I also take one Temazapam 20mg
Hi, is it Edith? I hope you are enjoying being 90!. I think I'd be happy to be that age as long as I have all my cognitive faculties.
Being paralysed from.the neck down both sides might be a bit of a challenge. I hope you are otherwise OK.
I'm not entirely sure my cancer issues will allow me to survive another 21 years!
The main thing is to rejoice in the time you do have, and adapt!!!
Sorry about the lifelong RLS. It can have a major impact on your quality of life no matter your age.
I have read a few claims on here that Tramadol can cause augmentation. However, recently a member I trust has recently written, that tramadol does NOT cause augmentation.
Rather than that, it causes "rebound". I have experienced this myself. It's where whatever you're taking for your RLS wears off before you take the next dose. Really, it's more like withdrawal symptoms.
It has been suggested it could help to switch to an "extended", "slow" or "controlled" release tramadol. I believe there is one. In this case the tramadol won't wear off so fast.
I'm sure your dr can guide you on dose. After years, you will have built up some tolerance. It may be better to take a slightly larger amount regularly than taking "extra" now and again as this can lead to more ups and downs in your blood level.
Sure you could take gabapentin, as well. no need to stop the tramadol.
Side effects can make you dizzy, drowsy and stumblimg when walking at first. This can wear off in a few weeks, which is also how long it takes to start working. You have to try it for a few weeks.
Only take it at night!
I'm used to seeing people writing their RLS suddenly got worse, not suddenly better. This is usually because something has triggered it.
I wonder then in your case if there is something triggering your RLS which you had a break from for a few weeks.
There's a lot of other medications that make RLS worse. Are you taking any?
Thank you for your reply Manerva all suggestions noted I may go down the Gabapentin route if Dr will prescribe with Tramadol. I was a little puzzled by your reference to paralysis is this you? I still cannot account for the three weeks without RLS . I was taking nothing different so it will remain a mystery but I wish it would continue to happen. Did taking Gabapentin make you gain weight? Bit worried about that. Best Wishes.
No, I'm not paralysed at all, apart from fear at times, or stunned by other peoples behaviour. . I was implying that IF I was paralysed, I 'd find it challenging, but not necessarily impossible.
Weight gain due to gabapentin hasn't entirely been explained. It'd been suggested that it's parytly due to water retention and partly because it's sn appetite stimulant.
It is possible to control appetite, there are also natural diuretics.
Thank you for your reply and for your help Manerva. I'm so glad you are not paralysed , I must have taken the wrong meaning Sorry/
• in reply to
Really good reading hope you don’t mind if I print it to give a copy to my gp Who hasn’t a clue but what makes it worse is that they cannot comprehend the misery I’ve broken.bones had severe burns but that went away this is a life sentence thanks again
• in reply to
You are quite welcome to print out anything I write. However I suggest you do NOT show it to a doctor.
Doctors are trained to base their practice on the best available evidence. What people write in this forum, even what I write myself, is not evidence.
There's no guarantee that anything you read here has any basis in fact. There is some very good information in the forum but there's also misinformation.
Health pofessionals may often be very dismissive of what's written in forums like this,.
I try to base what I write on authoritative sources of information, and if you take anything it's best to print out what the original sources say, not what's written here.
To that end I often give links to the sources. However, I know of a lot of sources and in order to give appropriate links I'd have to know what someones particular information needs are.
I also try to tailor the links I give to where a person lives. This is becasue there are some very good links I often give which are particularly useful in the UK, but aren't even accessible from outside the UK.
The reply from Manerve was detailed and on the mark. When managing such a complex disease as RLS, I think it is important to be seen by a specialist such as a sleep medicine physician or a neurologist THAT HAVE EXPERIENCE in treating RLS. I know that insurance plan rules vary between countries and country health plan depending on where you live. I would insist on seeing a specialist through whatever means you can at least to get started and to seen once a year. With the specialist's initial evaluation consultation with your GP, and annual follow-up, your GP may be able to manage this in between. This is a complex and life-altering disease that is way too important not to be driven by someone in the know.
The squeaky wheel gets the grease in this case and you may have to make some waves with you insurance or countries' health plan. You might need to go outside to the press or file a complaint that you are not being treated correctly. This is too important to screw around with.
• in reply to
Hi, great advice, but I'm not sure where this member lives so it might not be entirely appropriate.
Most members of the forum live in the UK and most neurologists here know very little about RLS and may have very little experience. Seeing a neurologist isn't therefore necessarily a great advanatage. That's why here it's essential to learn as much about RLS as you can for yourself.
In addition, we don't have any insurance plan here, anybody can get the treatments they need if they're available.
However depending on where you live, in the UK, it may take 6 months or more to get see a neurologist. Quite a while to wait to see someone who you then find out has little knowledge or experience of RLS. Hence it's important to be proactive and self-manage as much as possible. (In collaboration with a GP).
Nonetheless, if Africatwin lives in the US, then a good idea. Furthermore, the US does have the advantage of having some internationally and/or reputable RLS experts, e.g. Baltimore, Sountern Cal etc, which is great. Not necessarily in your insurance plan, i.e. if you have one.
I wouldn't advise seeing a neurologist in Cleveland about RLS unless you believe soap relieves RLS.
Mark, Manerva has given you excellent advice. Your doctor is negligent and clearly doesn’t know anything about RLS. You have come to the best place. Most of us come here after augmentation on Ropinirole or pramipexole and we now realise our GPs were making our condition worse.
I’m off Ropinirole and in a much better place.
Increasing any dose of a dopamine agonist is ‘pouring fuel on a fire’.
Get off it. It will be the best thing you ever do- you’ll get your life back.
I’ve actually put this before but in the us during their research they did autopsy on a sufferer that had a normal blood count but parts of his brain were very low I take supplements every for last 8years ido think it helps one of the things I had before starting taking iron was serious craving for dark chocolate which I normally detest
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