can anyone help please?

I have had RLS for so long I can't remeber a time without it. Of course it's worse now I'm older. Went to my G.P. in desperation about a year ago who put me on Requip. I got up to 2m.g and they helped but I suffered a lot of nausea and fainting fits. I then heard of Nuepro patches so with reluctance G.P. put me on them. I have now worked up to 2.mg. put on at 6.p.m. and at bedtime 1 mg each. They were marvellous, I knew at last what sleep was like without the torture of constant twitching. I sat through a film and a show and a coach ride. I also began to enjoy T.V. in the evening all things I had previously been unable to do. However about a month ago developed a rash on my chest which has gone on to develop into a raw weeping itchy infected mess over the whole of my torso. I am unable to sleep because of the burning and irritation and have developed infected sores where I have scratched. G.P. had taken me off patches and I have gone back to the tabs. Rash and itchy skin still with me so looks like I am violently allergic to Dopermine. Where do I go next??? My G.P. is tolerant but doesn't know much about RLS and I don't really know what else to ask for. I do know I can't go back to the sleepless nights and the torture I went through before the patches. I feel so disappointed and so depressed I hardly know what to do PLEASE HELP SOMEBODY I am an 82 year old widow so need help desperately

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  • Hi Romany I was using the patch for approx 4/5 months before the rash came but there had always been very red marks where the patches had been. I could put up with that for the sake of the wonderful rest I was getting. I am ssuming the rash is caused by the Dopermine because it is not getting any better despite the fact that I havn't used the patches for about a week now but am still on Reqiup 2.mg. I'd b e very pleased if it isn't the Dopermine but I don't know what else it could be and I suppose Ive' got come off it before I'll know, but I DREAD the results.

  • Hi bedith

    Romany's right sounds like the adhesive on the patch rather than the dopamine know lots folk that have allergies towards the adhesive on medical stuff ... where you put the patch it's self you have to make sure the skin isn't broken too or put the patch in the same place for 14 days i think it was so if you was putting patch in same place can cause irritation too ,

    good luck hope you find out it wasn't the Dopamine

  • Hi Yes I went to my G.P. who was shocked when she saw how bad my skin was. She took me off the Patches and gave me anti -biotics for the infection. I could not face the nights without help so I went back onto the Requip 2.mg (as I had some left over from before) but my G.P. doesn't know that Ive done that. It is me thinking I must be allergic to either the patches or Dopermine itself because I can't see anything else in my life which could have caused it. I believe that with an allergy the chemical to which you become allergic may not cause the symptoms straight away but only show when enough has built up in the body, which is what I though had perhaps happened to me. My G.P. has made an appt. for me to see her again on Tues to see if the Anti- biotics have worked. I'm not sure she's bothered beyond that which is why I feel I need help to know what to ask for myself.

  • Hi Bedith6. Sorry to hear of your problems. I don't think it's a good idea to take the medication without the agreement of your GP and It's only my view but you should tell her when you see her on Tuesday as you said that she has taken you off the requip. I don't know about patches but do you get more than twitching and insominia with your RLS? It might be a good idea rto ask your GP to refer you to a neurologist with an interest in RLS. Wishing you well.

  • Ask her of she thinks it is shingles! You said the whole of your torso, correct? Nt just your chest. :)

  • they always prescribe antibiotics for shingles, and it itches and burns alternately, it seems like forever, if you don't catch the first red spot. Shingles is caused from the chicken pox virus, which settles into your spinal fluid, AFTER you have chicken pox. It is`also called Herpes`Simplex, which we hate to use that for a name. :) Could be the worst dopamine patch reaction of all time, or something totally different. Irritation of the skin occurs at the patch site only. It may NOT be shingles, but she is`describing it to a "T" with the "rash all over the torso" description. Best thing- if rash is not healing, go back to the doctor and ask him if it could `POSSIBLY be shingles. This gets missed a LOT. I am with Romany on this one. It is not a dopamine allergy. going to go google it for kicks!

  • did you put the patch on the same place each time ?? cos you only mention your chest

  • she said the whole of her torso was where the rash is, and I have had shingles before, and it is nihtmare, and that is what it sounds like, not to anything to do with the patch.

  • Neupro in pills. I really think the Mirapex has caused augmentation for me. See neurologist again on Monday. I would like to be off itt, but need something.

  • The following link has a .pdf file which is the patient information leaflet for Requip.

    medicines.org.uk/emc/medici...

    It does specify that 1 on 10,000 may have skin problems as a side effect of this drug.

    I'll see what I can see regarding neuro patches.

    As an alternative perhaps your GP could prrescribe Pramipexole (Mirapex, Mirapexin. This is an alternative and vaguely similar thing to Requip This is also given for Parkinson's disease in stronger doses. Anyway, It works for me.

  • So far failed to find any info on requip neuro patches, only extened release tablets Requip - XL.

    Run out of time looking for now - perhaps somebody else has got more info on this ?

  • hear hear Romany ..... i was on Neupro patch and it states that you shouldn't put the patch on broken skin or on the same place as the day before and from what Bedith saying it's her chest that has the sore and no where else and so sounds like she's putting it on the same spot , the Neupro patch isn't a requip patch as Romany has already said

  • Neupro not neuro - ah, that rather explains why I could find nothing about them

    I found the following regarding Rotigotine

    The patch must not be exposed to heat while it is on the skin, for example excessive sunlight, heat pads, or heat from a sauna or hot bath. The patch should be covered by clothing if it is exposed to direct sunlight.

    If you get a rash or irritation on the skin exposed to the patches you should protect it from direct sunlight until the skin heals. Exposure to sunlight can lead to skin discolouration.

    and included in list of side effects -

    Skin reactions at the patch application site, eg redness, itching, irritation, burning, blistering and inflammation.

    And there's what Gypsy mentioned as a risk factor about using a different place for the patches.

    Regarding the antibiotics - I believe you can get rashes as a side-effect from taking antibiotics but in this case the rash came first., The initial cause of the rash seems to remain a matter of speculation. Which is a great shame since Edith was benefiting so much from the Rotigotine patches..

    If anyone hears of a definite cause for Edith's rash then I would be interested to know

  • I believev the rash has NOTHING to do with the patch in this case. She` said she has it all over torso, not just at the `patch site. I think she Bedith got scared off by the info that was`too technical. The poor woman is 82, lives by herself and` is confused.

  • If it was an allergy problem then such a rash could develop and very quickly too. And if it was an allergy problem then it could be anything in Edith's environment rather than anything to do with what we've all been debating. So it could be just coincidence.

  • Any luck yet?

  • Hi Bedith6, It seems to me that you are not making enough use of your GP. Does he/she have the full picture of your condition? She should know which medications are best for you. If she knows little about RLS then it's high time she read up some of the info readily available to GPs. There is a really excellent book available on Amazon or from any good bookshop: RESTLESS LEGS SYNDROME by Wayne Hening.(elsevier Press .com). This is for doctors and patients alike and tells you everything you could wish to know about all the drugs available for RLS, dosage and side effects etc. I wonder if your doctor would prescribe Gabapentin capsules? I have found them to be most effective in stopping all the unpleasant symptoms of RLS, once you find the right dose. This might well be 300mg or even 600mg. You take these in the evening or before going to bed, allowing 2 - 3 hours for them to 'kick in'. You will certainly have a good night's sleep and it should stop all the RLS symptoms. But please note - you will probably be a bit groggy in the morning for the first hour or two.

  • i also am a fan of gabapentin. I take it along with clonazepam and my problem is getting too much sleep instead of not enough. The tablets also have a slight sedative effect which is nice.

    I tried Requip and it didn't work at all for me although I still haven't tried the patches. I have patches for HRT and they make me itch a bit so I'm not terribly keen.

  • Sorry that was meant as a comment to the answer before this one. It's true the gabapentin and clonazepam both make you drowsy so as an 82 year old widow living alone she would have to be very careful but she sounds a bright enough lady and as long as she was aware of this it may turn out to be another option she could explore.

  • Hi Bedith6,

    Here is some info that you may find useful to understand what has happened:

    Neupro patches contain the active ingredient rotigotine, which is a type of medicine called a dopamine agonist. Rotigotine works by mimicking the activity of a substance in the brain called dopamine.

    Dopamine is a substance known as a neurotransmitter. Neurotransmitters are found in the brain and nervous system and are involved in transmitting messages between nerves. These messages allow the normal functioning of the body. Dopamine is known to be involved in movement disorders including RLS.

    Dopamine normally transmits messages by stimulating specific receptor sites in the brain and dopamine agonists "pretend" to be dopamine. These drugs stimulate the receptor sites for dopamine.

    So, you cannot be allergic to dopamine since your body produces it itself.

    All the dopamine agonists have side effects and of course the patches can cause allergic reactions.

    My advice would be to try going the natural route.

    As we age we become more and more malnourished and the levels of all our neurotransmitters fall, giving rise to lots of chronic conditions. So, as a naturopath I always start with nourishing my patients as best as possible. For this I recommend the superfoods such as Klamath blue-green algae. This is the most nutrient dense food on the planet and is particularly good for the brain and nervous system, rapidly restoring neurotransmitter levels including dopamine.

    You can get Klamath at H&B but I have been using products from a specialist UK company for the last six months with fantastic results on many of my patients.

    Let me know if you would like more info.

    Also, you may ask the doc to look at your vitamin B12 levels and if these are low, which they probably are, you can be given injections every few months.

    You can't heal unless you are getting all the nutrients you need and our food no longer supplies them!

  • maybe not an allergy, but you can build up dopmaine toxicity, which is very dangerous. See my blog post. Just because dopamine is made naturally by humans, you can have too much or too little. Too much will cause "allergic" type reactions in people with asthma, plus the toxicity problems, like high blood pressure, stroke, etc. It is the same thing as insulin. Our bodies can produce too much or not enough. Just because our bodies make insulin, does not mean that we use it the "correct" way in our system. A blanket statement just does not cover everything, here, Vitalone. The receptor sites for dopmine CAN get overloaded, and that is a fact.

  • see link on my dopamine blog. :)

  • you shouldnt really be putting patches on your chest anyway - try bottom or tummy and dont put in same spot more than once every 2 weeks, good luck x

  • Did you actually see the doctor??? I have had shingles, and the rash you describing as "weeping" sure sounds like shingles. If it has gone this far the antibiotic for it may be too late. But, if it is shingles you must see the doctor. I got it all over my torso, It follows the nerve paths, the left side of my face, my butt, owwwweeeeeeeee, it is miserable. Please read the treatment page on rlshelp.org. I do not seriously think the patch could give you a rash like that which you have described, and it should not be on your chest. Also, you can see what ither meds can and cannot be used.,. It is US nased site, but the BEST one. You can email the doctor, too. he emails everyone back, and he advises me on my groups I own. :)

  • Hi everyone Thanks for all your comments and care. I really appreciate it. I would like to put a couple of things straight though. I have never put the patches on my chest only on my arms or legs and nearly always on my legs as they seemed to work better that way. I have never put them in the same place twice and have allowed 2 weeks between putting them in the same place. The rash I told you about began on my chest but then has spread rapidly to stomach arms legs and back in fact as I said the whole torso. Since having the anti-biotics I think it is no longer infected but it is still irritating and burning especially when I go to bed. I know I shouldn't take the requip tablets really without G.P's consent but couldn't face the nights again without help so maybe the Gabapentin that has been mentioned would be O.K. I don't really like feeling groggy in the morning as I am very active and like to get on with my day, Is it really bad? or would Mirapexin be better? What do you all think? I do feel I have a very good diet loads of fruit and Vegs and fresh food etc also lots of excercise so am trying to do all the right things.

  • Have you tried Sifrol Tablets? Many people find them excellent.

  • Some people find that Mirapexin suits them better than Ropinerole, the side effects of nausea seem less. I am taking Mirapexin, but they do make me dizzy some days all day. But i am sensitive to all meds and usually get side effects of being dizzy and sleepy during the day.

    Gabapentin i have tried and made me very sleepy during the day and didnt help my RLS. But we are all different and react differently when taking medications, so its all trial and error.

    I would say it would be very unusually to have such a reaction to the patch, and most likely you have something else going on...

  • Hi I can only suggest what works or helps for me and that's Mirapexin. Also lying on the floor on your tummy or lying on the bed on your tummy. Also a hot bath before bed. As hot as you can stand it and then keep adding more hot water an keep washing it over your legs. It seems to release the tension for me so I hope it gives you some relief. Be strong a keep logging in here. It's only members like us who can honestly say we know what you are going thru.

  • To be honest I have been really put off taking any dopamine stuff from the side effects and problems people seem to have. I am taking co codamol when my symptoms start and it seems to work well for me.

    So sorry to hear you are having such a hard time bedith. I hope you get better soon x x x

  • Edith, Just to mention the Gabapentin 'grogginess' - I've experienced that, but it's not severe, soon disappears in the morning, and it's infinitely preferable to all the symptoms you're experiencing. I'm only on 200mg, 3 hours before bedtime, ... and it works.

    Wishing you well and hoping you get relief soon.

    Pat.

  • Hello Bedith

    I am so sorry you are having such a problem. I don't post on this forum often but I picked up the desperation in your post and thought I would ask if you have ever tried Liquid Oromorph to see if that helps any. (hope I'm not repeating something which has already been said here). I have never been referred to a neurologist for my RLS but my GP gave me some oromorph just to see if it would help as a kind of "quick fix" and, for me, it has been fantastic. It doesn't deal with the underlying problem but for me it zaps the RLS almost completely when I take it. Currently I take 10mls in the early evening and another 10mls just before bed and it helps me hugely. I also take it in the day if need be. Now I am used to it it doesn't tend to make me particularly drowsy at this dose - although I wouldn't like to try driving or taking important decisions whilst "under the influence". The other positive thing about the oromorph is that it works for me really quickly - I guess because it is a liquid - which means I can take the minimum dose I think I need when the legs and arms start twitching, and then just top up if it's not enough. Because I have other medical conditions I take many other drugs and I like the oromorph because, for me, it has no major side effects (constipation possibly, but that's potentially easy to rectify) and doesn't interact with any of my other medications.

    I really hope you find something which helps you Bedith.

    Tillyx

  • Sorry, fogot to say what strenght oromorph I use (I think there are different strenghts). Mine is 10mg/5mls.

    Tillyx

  • Iron and Manganese help increase dopamine. I have manganese pill in evening when I get leg twitching - it stops it every time.

  • Hi Everyone It is so heartening to have a place like this where you feel people really care and understand your probllems and not only that but do their best to help. I have never heard of Sifrol tablets or Oromorph liquid but will try to do some reasearch on them than ks for the suggestions and also for the suggestions re. Mirapex and Gabapentin. As you say I think it's trial and error but I hope I can resolve it soon or I won't have any skin left - YES!! I'm still scratching and burning. Thanks again to everyone who posted.

  • Edith, please may you post any results from trying whatever it is that you do try. Thanks.

  • I have avery severe case of RLS and saw a neurologist who put me on Pregabalin,.This made me feel like a zombie whilst it did not relieve the RLS SYMPTONS. So now he recomends I try Amantadine 100mg twice a day.I have been on these tablets for 2 weeks now and there is still no relief.How long does it take to ease the awful distress of RLS. I am worn out with lack of sleep and would welcome any advice from other sufferers who have found relief in other medications or homeopathic remedies MADDYMAC

  • Hi Edith. I know it must be so difficult to be dealing with these problems on your own at 86yrs.

    My mum is 91yrs and has suffered from RSL for years, and has a very unhelpful Doctor (they seem to loose interest in the UK elderly), but she has badgered him and after other medication which didn't work is now on Mirapexin which seems to work after her dose was increased. So go armed with lots of literature as backup and badger the Doctor for a solution. Have you looked at Images on Google for shingles and compared them with your own rash. I have a skin irritation which comes and goes, and by comparing it with Images on the internet have tracked down information on it, which is a type of eczema, which the Doctors could not tell me even after loads of tests. Also have a look at this link rlshelp.org/. click on Treatment Page, it gives all the medications for RLS, dosage, effects, side-effects and more, I use it to check what the Doctor is giving my Mum. Good luck.

  • Hi Edith

    I've just caught up with this thread and very much hope that you derive some effective help from all the suggestions that have gone before. My only comment would be to be wary of the Oromorph which I understand to be quite a powerful morphine derivative. I have just changed to Gabapentine which I finds helps my condition although not entirely. I think that Gabapentine is not a dopamine agonist so may be better for you.

  • Hi Everyone Thanks again for all your comments and help. I saw my G.P. this morning who now definitely thinks that I have a rare and severe reaction to the Dopamine in the drugs. I am so disappointed because in particular the patches were doing a really good job for me. I even got to sit through a cinema show and a musical without having to jump up and down. I have now been given some cortisone cream which should help with the burning and itching also I'm to be off the requip tablets entirely and in order for me to get through the nights while the allergy is hopefully getting better I have some Tramadol.. Never having taken sleeping tablets before I'm not sure how I'll get on with them but hey! it's worth a try. I'm to see my G.P. again in 2 weeks and then she said she will discuss what more can be done for the RLS So thats it folks for the time being. Again many many thanks for the help and support I have received from this group.

  • Hi Again I've just looked again at the tablets the Doc. has given me thy are Temazapam not Tramadol. Don't know why I'd got that into my head I'll blame lack of sleep.

  • Temazapam - only recommended for short term use (1 or 2 weeks) as can become adictive

  • Yes my G.P. did warn me of that, but I have now had two nights of much more restful sleep and my jumping legs even seem calmer during the day so, as I feel at the moment, I coudn't care less at my age (82) whether or not I become addicted. I don't suppose the Doc. will prescribe them for longer though. The itching and burning is still with me but I'm not completely off the Ropinirol yet so I have high hopes that the allergy will go once I'm off them completely.

  • Hi bedith6, my heart goes out to you, I'm taking Ropinirol too and have to take other medication to counteract the nausea! We all can react to the same drug in different ways. I find when I'm particularly agitated because of the legs and need desperately to sleep but can't, the bath beckons! Lots of bubbles, the radio and a nice cuppa tea...decaffeinated of course! I've told my doctor, I'm 64, I don't mind at my age becoming addicted to sleeping tablets too, just let me have a couple of years, sleeping and enjoying life, but they don't listen. Keep your chins up and keep reading the messages, I've found lots of people to talk to with the same problems and it helps the ears of my poor family and friends!

  • Hi Insomnia Yes this web site helps a lot. Despite the Temazepan I hardly slept at all last night , my legs are back with a vengeance. To cap it all the one thing I've always used to give me temporary releif has broken , it packed up last night. It is a percussion massager and I know I've overworked it. I don't know what I'll do without it tonight. Perhaps the Temazepam will work. I'm not seeing my doc. until the 5th Dec and still don't know what she'll suggest but it had better be something because I am at the end of my tether and feel I can't can't go on like this much longer. I know loads of sufferers feel the same but I am so very very depressed now.

  • Do you have a list of questions written down for your visit? And, you should have suggestions or questions about certain meds, etc. The more you know the more you can help your doctor help you. :)

  • Go see a neurologist. He will have loads of help to give you after first determining whether there is an underlying cause. Mine has given me some tablets to try whilst waiting for test and scan results.

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