Relief finally?

[Restlesssufferer]

Hi everyone I am fairly new to the group, and this is my first post. I am 60 and have suffered with this insidious , cruel, merciless disease ever since I can remember. However the past year or so it has become so bad that it is affecting every aspect of my life. Morning, afternoon, night it doesn’t matter it chases me no matter the time.

Recently my neurologist started me on Graslise. It is an extended release gabapentin and it more effective the regular gabapentin. I started at 300mg and have worked up to 1800 mg. I’ve had a few days where I was still bothered with rsl but for the most part this new med along with and an iron and magnesium supplement seems to be keeping it a bay.

It is an extremely expensive drug that required prior authorization by my insurance. No surprise my claim was denied. My neurologist told me about a pharmacy that fills prescriptions that have been denied by insurance companies. Gralise costs $1000 plus per month and I am now receiving it from this pharmacy for $10 a month. Incredible right.

Hopefully this new regiment will continue working because my rls was so bad I just wanted to die and I don’t want to be in that dark dark place ever again.

Good luck to everyone. I truly hope you find a regiment that works for you, keep trying and don’t give up!

[Hidden]

Hello! I’m glad to hear that you’re in a good place now!

[Restlesssufferer in reply to Hidden]

Thank you Sails! Peace

[Joolsg]

Thanks for letting people know about this. It must be awful to have medicines dictated to you by cost. I cannot begin to imagine what it must be like to have a serious illness in a country where healthcare is not available on the same terms to everyone.

Hopefully, others will be able to access this drug at the reduced cost.

[Hidden]

It's great that you've managed to get it at this unbelievably reduced cost, I hear that the cost of medicines in the US is significantly higher than here in the UK.

Unfortunately, I'm not sure if we can actually get Gralise here.

However, it is another form of Gabapentin, which we can get. Have you tried Gabapentin before? It would be interesting to know if Gralise is any more effective. How are side effects?

In fact, what have you tried before, it sounded like you were suffering from augmentation.

[Restlesssufferer]

Hi Manerva. Yes I was on gabapentin but it did not help at all. This is the first time I went to the neurologist. She first prescribed pramiprexole, it did not work so she prescribed Graslise which is an extended release gabapentin. Many years ago I used ropinirole and it worked very well. Overnight it stopped working and the rls began affecting my arms also.

What a horrific thing to be afflicted with right, but I have found relief for the time being and I’m going to revel in it because you never know how long it going to last for.

[Hidden in reply to Restlesssufferer]

Amen to your last words!!

[Ninny1957]

I am in that dark place right now. It's non stop, no relief in sight. I am on low dose of Gabapentin but slowly going up. I can't even sit and I'm like you were. I want to die. Right now I'm too miserable to even stand here and type. Sleep is out of the question. I don't know what that is anymore

[Jelbea in reply to Ninny1957]

So sorry to hear how down you are at present. I do hope the gabapentin will kick in soon and help you. What did you take before the gaba? I take oxycodone - not really by choice but because nothing else helped or they gave me severe side effects. I know that despair you are feeling and you know it will get better. Keep in touch and let us know your progress.Take care.

[Shumbah in reply to Jelbea]

Hi Jelbea

I found codiene worked for nearly 30 years now not working at all .

I have been on gabapentin for 3 weeks not helping yet 600 mg

Does the OxyContin work well for you ?

When I have been in hospital on morphine that worked totally

Kind Regards Kester

[Jelbea in reply to Shumbah]

Hello Shumbah. I also took codeine for many years at a dosage of 30 mg each night. Last year this no longer worked even on doubling dose to 60 mg each night. I now take Oxycodone (Longtec) 5 mg in the morning and 10 mg at night. This is giving good relief most nights and allows me to get better sleep. (I used to sleep at most 3 hours broken up during the night.). Also if I cannot sleep at least I can lie still and drift. I still get RLS most evenings but I do not want to take more oxy. For me the oxy can make me feel a little depressed but nothing else has been any good so I’ll stick with it at present. Hope this helps.

[FLAME43]

Dear RS. so happy for your relief, as you described it, so it is. I wish you continued relief so that your emotions can recover

[Jumpey]

Welcome.Long may your relief continue. X