Peripheral neuropathy, it's medications and RLS? | Arthritis Information

confusing title, I know..... but I think they are all tied together .... and I wanted to address these issues enmass.

I have PN.. and I have RLS... I was taking Requip, but a week ago, I went to bed without it and slept fine.. I've not taken it since.. I no longer have the major stomach issues, reflux and awaking with nausea, or going to sleep with the horrible almost indescribable sensation it gave me that said: Get in bed before you fall down. Additionally, it has caused some issues of incontinence...

I hate Requip... I hate RLS.. and I hate Peripheral neuropathy.

My PN has been Dx'd as a secondary issue due to the RA.... I have pins and needles with some shooting pains at times... and numb places that a pin prick isn't felt...

Some of you posted about neurotin (sp?) and lyrica.... I'm curious as to how those meds work for you.. and if there are any bad issues... My neurologist closed my file and said that my PCP can order the requip and that should i have future issues to call him.... which I may.

As I said initially, I've had lessened RLS issues recently (due to improvements in RA? IDK) but I fear that it's just waiting for a night when I need sleep to pounce and cause me alot of pain and trouble..

I'd appreciate anyone's thoughts on this.... please.

babs102009-05-27 11:32:27Love Lyrica. You have to be sure you are taking the correct dosage to help you though. I have suffered with PN and fibromyalgia (undiagnosed) along with RA for two years. It was just recently that I switched doctors and started getting some relief. I am like a new person. I was worried about taking too much Lyrica due to side effects like weight gain. However, a nurse convinced me that the benefits outweighed the risks. I am virtually pain free most of the time. I encourage you to try it, feeling better is so worth it. Physiotherapy, bracing, and Gabapentin (generic Neurotin) are my current therapies of choice. It was my PCP who sent me for neurological evaluation of an ever-escalating sense of tingling, numbness, and a burning sensation in my extremities but with my hands/arms feet/legs feeling as if they were encased in layers of cotton batting (hard to describe but a powerful motivator!).

The neurologist told me that peripheral neuropathy is a common component of RA, however it is just as commonly unrecognized and/or under-treated. He Rx’d me Lyrica in an escalating dosage schedule and once my signs and symptoms had stabilized he then added physiotherapy. Then he recommended switching down-the-ladder to Gapapentin. I made the switch without incidence and unless I miss a dose or two I have almost no symptoms. That is unless I foolishly go away for a couple of weeks and don’t take my nighttime braces with me… … …

Babbs,

I don't have PN, but I wanted to chime in and tell you that I hated Requip too. The best med for my RLS was the Neurontin. However, I couldn't stand the side effects. My "word recall" sucked big time.

I was one of the lucky ones that found out mine was better once I got my low iron levels increased.

yes.. the requip isn't actually for the PN.. but I think that the RLS is associative.

I hate that med... I love that it let me sleep when I was so sleep depraved...

I'm like others who don't wish to take anything every day that we may not need except situationally....

I"m working on other corrections for the RLS.... one thing I came across says it is caused by diary!! an allergic reaction... wow.. IDK about that.....

Hi Babs, can't help with the questions but wanted to let you know that my partner suffers from RLS and some nights I really feel it.
Like, WHACK, safer to sleep on the couch on those nights.
PN is something that has gotten worse for me over the last year. I was diagnosed, but not really treated, early on in my RA life. I don't really take anything currently for the PN, but that may change soon. The sensations Shug describes are right on the money for me, probably not as severe though. My left leg is especially bad. I am taking low dose naltrexone for my fibromyalgia, which has help me, but I don't really see much difference in the PN. I don't know if LDN would really address PN but I am hoping my new combo therapy will help with the PN as well, we will see.

Babs, I wouldn't be surprised at the things a diet change will do. I view my dietary changes as part of my combo thearpy and I know it has made a difference in the way I feel. Have you noticed a change in the RLS since you stopped gluten? Did that happen about the same time you stopped the Requip?
Thanks for all input.. I appreciate it!

I haven't started the gluten free dieting yet..... I needed to find the time to do a full and complete kitchen flush and shop.... if you know what I mean.... Can't do gluten free w/ cookies and such... my poor 13 year old will be miserable

my PN has improved as my RA has improved -- still have some places with no sensations or feelings whatsoever and still get those damn shooting pains/jabs... the RLS is also improving.. I am falling asleep in about 20 minutes, sometimes more or less. I am almost out of my meds and would have to see my PCP to get more..... IDK that I want to pay for 3 months of Requip that I may never use..... tough call here... that's why I'm wondering if I should look at

Diet could be a good help.... we shall see about that soon.

My RD sent me to a neurologist after complaining for probable two years (off and on) of some numbness in one leg especially. Once it got to where I had that pins and needle thing going on in my feet he was a little worried about he Humira and rushed me off to him ASAP. I was dx'ed with PN as well as low B12. Surprisingly enough taking b12 injections does a lot for the pins and needle thing for me. It's amazing how quickly it will take care of that symptom.

I have a compounded problem in that one leg though with some pretty bad nerve damage from an old surgery. Lyrica is a life saver. The pain from that can be over whelming and provided I take the lyrica I can barely feel it....but if I don't I quickly remember that I had forgotten to take it. Funny how you don't realize how well somethings working until you don't take it, huh?

Lyrica makes me sleep really well. I take 150mg at night verses 75 twice a day because it does make me pretty groggy.

I'd ask for a script. It's expensive if you don't have insurance......but sure worth the high level co-pay if you do!

Let us know if you try it. I'm definately in the group that loves it. It's the one I can't do without.

so.... everyone has the Lyrica for the PN.... but it helps w/ RLS? is that the gist of this? IDK that my neuro will prescribe it... I had asked for something else when I told him I didn't like the upset stomach and the way I felt 30 -40 minutes after dosing.... he said it was the best thing... He's an ALS specialist, and Requip is for that... I thought he wasn't thinking outside the box.. kwim?My RD prescribed the Lyrica for me before he even sent me to the neurologist. I was already on it by the time I saw him....but I assume he could prescribe it too. Just as easy to ask your RD too.

I don't have any knowledge of RLS though. Can't off much in that area.

A couple of years ago my DIL was dealing with RLS. When she went in for a physical her labs indicated she was anemic. By the pace she kept up you wouldn't have given this possibility a second thought. Her doctor prescribed some type of prescription iron because he had read literature that RLS quite often responds to taking an iron supplement. Within a few weeks her RLS disappeared. She still takes an iron supplement every day and RLS hasn't been an issue since.

The fact she was anemic blew everyone away for she is so health conscious and definitely is aware of the importance of a proper diet and the grandkids definitely aren't junk food junkies.
[QUOTE=SnowOwl]I have episodes of RLS, and do find that diet makes a difference to how it acts up. I'm not on a gluten free diet but I do try and stick to fresh veg and lean meats, fresh ingredients. I know when I've gotten careless with consuming too much caffeine when it also aggravates my interstitial cystitis which often comes on simultaneously with episodes of RLS. I've found that tonic water with quinine helps calm the RLS.

The other major contributor to RLS for me is water retention, and weight gain. It puts extra pressure on my pelvis and lower back and when I stretch out at night I tend to develop sciatic discomfort, and that triggers RLS. Near and during my menstrual period RLS also tends to be worse, whether from the hormones or the water retention, dunno, though.

[/QUOTE]

caffeine is the worst w/ this...... I am trying to remove ALL caffeine from my diet...... I am adamant about NONE after 4 pm...... nothing not decaffeinated in my beverages in the eveings.. and I think that has made a major change for the better...

I may be able to tolerate tonic w/ alot of lemon or lime.... I"ll have to try it.. I hate the aftertaste....

Green and Lean is the way to go... I'm certain of it!!

I have RLS and the sleep specialist I went to had prescribed a couple of different medications. What has helped the most is a Parkinson's medication called Cabaser. I know after a couple of nights not taking it my poor hubby feels like he is sleeping on a trampoline with a member of Cirque du Soleil. This medication has been my sanity for the last 6-7 years.

Iron and ferretin levels have been shown to have an effect on RLS, so keep your red meat up.

pammy........ Cabaser isn't marketed in the USA.... and it looks like an aphrodesiac from what I've read on the net!! wooot!! ;)

After having been off Gabapentin for several weeks, my peripheral neuropathy is back with a vengeance. I am partially successful at moving around it during the day, but at night the burning and tingling pain awaken me and no amount of moving tames it.

This is something I am simply going to have to live with as medication is out of the question now and for the foreseeable future.

I need to strengthen my relaxation techniques and have someone create a guided imagery/meditation CD for those middle of the night visits from PN.

To relief, regardless its source!
I have occasional RLS, which seems to hit hardest following a stressful or over active day, you know when I REALLY need my sleep. I have found Lyrica does nothing for it. I generally take my evening meds well after I am in bed, maybe 11 or so . So I know before hand if I'm having RLS.. If that happens I skip the Lyrica and take a gabapentin.. and walla, no RLS.. [QUOTE=Spelunker]After having been off Gabapentin for several weeks, my peripheral neuropathy is back with a vengeance. I am partially successful at moving around it during the day, but at night the burning and tingling pain awaken me and no amount of moving tames it.

This is something I am simply going to have to live with as medication is out of the question now and for the foreseeable future.

I need to strengthen my relaxation techniques and have someone create a guided imagery/meditation CD for those middle of the night visits from PN.

To relief, regardless its source!
[/QUOTE]

Shug..

I have still not taken my RLS meds (Requip) .... I have occasional issues but nothing like my initial DX'd issues. I canNOT eat chocolate/sugar/caffeine 6 hours before bed....

Now, I know from what I've read that many RLS symptoms are caused by renal insufficiency/distress.... ergo, there may be nothing diet-wise that may help. I also like having a WARM (microwaved) light blanket laid across my lower legs...... it helps me to relax..... as does a whirlpool bath/hot tub ..... I wish you comfort, Shug.

Babs, I take Lyrica for PN after being on Neurontin for years and it's worked really well. Like Shug, I'm working down the ladder to restart Neurontin. I want to lose some weight and I'm at a plateau. Lyrica will cause weight gain. I don't want to be on Lyrica forever and will be just as happy if Neurontin starts working. When RA is controlled the PN is better. Here's hoping for tight control sometime soon. Lindyoooh... maybe that is why I have lessened issues..... my RA is being controlled very well at teh moment!!

Yea; I gain about 25lbs since starting Lyrica! I'm down 12 of that now though....so things are looking up. I'm having to work hard at it though.

I've learned though that Lyrica is the one I do not want to do with out. The PN is annoying and does cause me pain; but I have some more serious nerve damage in one leg from that old surgery and it is EXTREMELY painful when I'm not on the Lyrica. I'd carry the extra weight if I had to just to avoid that pain. I can't deal with it.

I've also gained a lot of weight since I started Lyrica. I knew going in that might happen. It's been a very slow process to get the weight off and that's why I'm going to try and step down to Neurontin. I don't have surgical nerve damage so I'm hoping that Neurontin will step up and keep PN at bay. The weight is unhealthy and I don't feel well when I'm this heavy and it's hard on my knee that needs to be replaced and my hip. LindyWell I would have loved Lyrica but I could not sleep when I was taking it. Plus the doctor decided scince it did not work on enough things for me that my problems were mostly RA and not fibro. A girl has got to sleep once in a while. I was even taking my flexeril and could not sleep. So when I was really bad off and had to take two flexerils I still could not sleep. Also they told me that it was a contradiction to prednisone. I had quit taking it before I took the prednisone but it still made the prednisone react stronger towards me than it usually does. I guess it depends on who you are and what you are treating for good results. It did help with the pain after about a week. But I was having RA issues that were beyond what Lyrica could help me with. [QUOTE=babs10]I put the weight on w/ the REquip too.... about 25 lbs. and I am down half that.

Shug..... can you just put your legs into a whirlpool bath/tub? sometimes that is all I do.... It exhausts me with its warmth and I find I can get to sleep if I have no disturbances (i.e. hubby snoring)

I have been having hydrotherapy twice a day (along with debridement of necrotic areas on my lower legs from loss of circulation from arterial tamponade when my renal artery infarcted) and have not noticed and reduction in PN symptoms. However, this evening I will pay closer attention to that aspect. [QUOTE=Spelunker]I have been having hydrotherapy twice a day (along with debridement of necrotic areas on my lower legs from loss of circulation from arterial tamponade when my renal artery infarcted) and have not noticed and reduction in PN symptoms. However, this evening I will pay closer attention to that aspect. [/QUOTE]

I can hope you find that to be the case.

I've been taking Requip for RLS for almost eight months. It worked great until the last few nights, and now my legs hurt and jerk and are as bad with Requip as they were before I started on it. I don't have a clue why. They were so bad last night that I got up and rummaged through all my potions and lotions, looking for anything I could try for relief. I came upon some Blue Ice analgesic rub (active ingredient 2.5% menthol). I slathered it on my calves and, to my surprise (besides clearing my nasal congestion, LOL) it gave me complete relief from my "leg fits"! I'm not convinced yet that Ive found a cure......we'll see if it works the next time. [QUOTE=babs10]oh Shug.... I am so sorry. so sorry.

I had hoped it would work for you.

I had a bad night last...and believe it.. i was thinking of you.. IDK if it was the prednisone that made falling asleep so difficult or the diet coke I had w/ dinner hours before.... but I had those sharp jabbing pains!! I was up til 1:40 at least... I was contemplating taking a tylenol pM to get some rest...

I woke at 9 and dont' feel too bad for the poor rest.

How are you this morning? again.. I'm sorry...... when can you take something???

[QUOTE=babs10]... when can you take something???[/QUOTE]

At least for the foreseeable future, any relief from PN is going to have to be found without medications.
crap.

there must be a solution... or help.