Good News!!!

[lorri214]

My dr. approved the buprenorphine for me. I am thinking positive that it will work. She is giving me the patch. I am excited. I have to discontinue the horizant though which surprised me and of course discontinue the oxycodone. Hopefully now you won't have to listen to me complaining and I will be telling you happy things. I am praying. I have never prayed so much in my life!!! Thank you all so much for helping and listening me. I truly appreciate it!!!!

[Claire_lc]

Hi Lorri, I am so happy for you. I remember getting my prescription last month and feeling exactly the way you describe. Just praying it would work and change my life. And it really did! I’m sure it will for you too. Let us know how you get on.

[SueJohnson]

That is great news! So pleased for you. If you are taking 600 mg you can just stop it. If more the dose should be reduced to 600 mg daily for 1 week prior to discontinuation to minimize the potential of withdrawal seizure.

[Heatherlss]

Happy to hear that. Unfortunately, my time for such news has not yet come while my disease worsens. Left with no choice but to increase the dose while I pray that the help comes. In India, it really is the worst

[LotteM]

Looking forward to even more positive news. Incidentally, what dose have you been prescribed?

[lorri214 in reply to LotteM]

I have been prescribed 5 mg. Got it this afternoon. put it on right away. Don't think its working yet. My legs are starting to feel antsy. I'm getting nervous and scared that I am going to have a night from hell. How long before the patch kicks in?

[LotteM in reply to lorri214]

It may take a few hours before it kicks in. I always put a new one on in the morning and mostly it works by evening/night.

Do you have something to add tonight?

[lorri214 in reply to LotteM]

No. dr. said I could take one mirapex and I did that. The legs are bad. What could I possible add. Do you think the patch is not going to work. I had it on for 7 hrs.

[restlessstoz in reply to lorri214]

I am on a 20mcg/hour patch. Everyone is different in their need for the strength of medcation. I tried the lower patches and when they only offered partial relief, went up to a higher patch. I started on 10mcg/hour and it made a big difference but was not sufficient to remove symptoms completely. Now on 20 mcg/hr, I have no symptoms at all.

The other thing to note is that the patches are supposed to last for 7 days. In mine and others experience, they don't. I find, and my GP has agreed, that I need to change the patch every 5 days as opposed to every 7. Previously at 5 days, I was starting to get symptoms which increased until I put on the new patch. Good luck with finding your 'happy' level and I hope your doctor will increase the dose so you can get complete relief.

[Marlayna67]

great news! I’m thinking not to leave buprenorphine for methadone. It really does work so well!

[Jumpey]

I'm delighted for you.Good luck.

[HipHop1972]

Hi lorri214. I am so very pleased for you. I am on a very low dose patch and have just completed my first 7 days. I’m feeling positive about it but am going to ask for an increase in strength. What strength has she prescribed for you, stick with it, it takes a little longer for the patch to get absorbed than the pill. Great to have some good news on here.

My very best wishes HipHop1972 😁

[Kakally]

just in case…. A number of people find the buprenorphine patch doesn’t last 7 days. Including me…

So I have a low dose patch but put one on on a Saturday on one side of my body and the a second one on the other side of my body on a Tuesday.

Therefore 2 patches on all the time but one changed on Saturday and the other changed on Tuesday. This means I get a little boost halfway through the week.

You may find the patch lasts the whole week for you but I have eventually worked out this regimen works best for me..

I really wish you well. Be patient to hopefully get it right for you…🤗

[lorri214 in reply to Kakally]

I am curious how the patch works. Once you put it on does your rls miraculously go away. Do you feel any different? Lightheaded, dizzy etc???

[LotteM in reply to lorri214]

The patch takes quite a few hours to work. If you put it on it should work by evening, but takes a linger to reach full strength. The upside is, it then stays on for 7 days.

I didn’t feel dizzy, but other people reported nausea and sweating, same as on the buprenorphine pills. Impossible to tell in advance whether you will experience side effects.

[707twitcher]

instructions say not to cut the patch, but several of us have done so without issue. That does allow for some flexibility. If you are on, for instance, a 5mcg patch, and it doesn’t provide complete relief, you could add an extra half a patch to see if that works. But you have to allow for at least a 24 hour delay in the additional patch kicking in at full effectiveness. Then you would know that you need a 7.5mcg patch next Rx. But you may find, as I did, that insurance company approval is limited to exactly what the Rx calls for- so you can’t refill the Rx for a full 28 days (comes in a box of four patches). Hopefully your doctor can work with you on this to allow for needing a higher dose or needing to replace it after 5 or 6 days. But the insurance rules might make that difficult. the flexibility of having some fast-acting sublinguals on hand if needed is ideal.

[lorri214 in reply to 707twitcher]

Now I'm nervous. The pharmacy is waiting for insurance company to approve the prescription.

[707twitcher in reply to lorri214]

What dose patch?

[Floordefleur]

I only need one fourth of a 2 mg tablet. So try to take as low as possible. Good luck!

[707twitcher]

the patch is more expensive than sublinguals (in the US at least). I think that’s why the insurance companies put up more of a fight over it. If you get much pushback, ask the doctor to revise the Rx for 2 mg Suboxone strips. And then try 1/4 of a strip. Tell the doctor that the sublinguals give you more flexibility to adjust dose quickly, and the combination with naloxone makes it safer and less likely to be abused. Even without insurance, 30 Suboxone strips cost $40 (using GoodRx), while 4 patches cost at least three or four times that. And 30 strips would likely last you for 4 or 5 months, vs 28 days with a box of four patches.

[Kakally]

Hi Lori

I think the drug in the patch gets absorbed into your blood vessels through the skin. It seems to take a day or so to build up to a noticeable level . But as you are starting it , it takes awhile to get to reduce your RLS completely. Plus it maybe that you have been given a low ish dose and after 2 weeks or so you should probably report back your progress so the doc can consider whether you might be on the correct dose or whether you need a slight higher dose patch.

Read the side effects as there are some but you may be lucky not to get much that is problematic. They made me a little bit drowsy but that went away quite soon. Some get nauseous but as Joolsg says marajuana can help. I’m sure she will advise on this though she has tablets rather than patches (I think)

All the best with your buprenorphine experience. Be a bit patient and reach out again if you have problems/questions

🤗

[lorri214 in reply to Kakally]

Having a difficult time getting the bupremorphine patch. Insurance co. won't approve it til they get authorization from dr. since i was on oxycodone. So I have to wait til that happens. I have called the dr. office. Saw the pharmacy and they have none in stock so it may not be til monday. How much more can one person take! Plus it costs $165. I was thinking last night as I was pacing the floor. This is what it must be like in hell. This is sheer torture.

[Kakally in reply to lorri214]

It does feel like torture. I totally agree and empathise with you and send my best gentle RLS thoughts. Do keep going. It could be so good hopefully. Keep posting and everyone who can will give you best wishes, tricks and things to do to help you if they can . LOVE 🤗🤗🤗🥰

[lorri214 in reply to lorri214]

The pharmacy can get it for me for $55. Good news. I told the pharmacy I will go to another pharmacy to pick it up and thats what I will do. Am I going on to much. Sorry if I am. I got a little excited when they told me I will be able to get it tomorrow at a different pharmacy location. Thank you all for your help. Tune in Monday for the next chapter!!!

[Kejimkujik in reply to lorri214]

Under the Geneva convention it is illegal to use sleep deprivation to get any kind of inforrmation. A worse form of torture after sleep depravation adding forced exercise. Hen my GP had me try coming off premipexole, without any other meds to support this, I went theough hell. That is when someone told me about the Geneva convention rules. When after a week I went and saw my GP and he was dismissive about what I went through, I told him that he had effectively broken the Geneva Convention. I had also set up the camera to cideo what I was like when being hit with restless legs. Not sure what hit him harder but that was when he got on to the neurologist to get me in asap.

[lorri214 in reply to Kakally]

The rls is bad. I'm scared the patch won't work. Put it on at 12 and it is now 7pm. I can't take anything else. No oxycodone. I feel like I'm loosing my mind. Things are supposed to get better not worse. I'm so upset.

[restlessstoz in reply to lorri214]

Hi again Lorri, do hang in there! I know how hard it is to suffer with RLS all night. If you can, video what your behaviour is like when you can't keep still to show your doctor. She MUST understand what we go through. It may well be that you need a stronger patch and you might put another one on to see if it helps. However, once you've done that, you will need to see your doctor as you won't have enough patches for a month. If you can, print out the experiences of people here in this feed. Let him see, it's quite normal to need a stronger patch. If she can prescribe the oral medication, that's better still as you can keep the dose lower and adapt it as your symptoms change.

Keep your chin up and hang in there for a bit longer. You're going to find huge relief once you get the dose that is sufficient for you. I'm in Australia so it's morning here. I'll be thinking of you. 🥰

[lorri214 in reply to restlessstoz]

Thanks. I haven't gone to sleep all night. The patch should have worked by now right???? Since its sunday i can't get in touch with the dr. more suffering. I don't know how much longer I can go on like this. No one could imagine.

[LotteM in reply to lorri214]

Lorri, what else do you have available? It most likely will not help to take other opioids as buprenorphine is supposed to outconquer them on the receptors. But paracetamol (tylenol) may potentiate the effect of the buprenorphine.

Also, you said you took “1” mirapex. But how many mg are in that “1”? And on how many mg were you before? If you are going to fast on the withdrawal, you may experience increased symptoms due to the mirapex reduction, and a 5mcg/h patch may not be enough to cover that.

Do keep in mind that you are in a transition phase, with several things going on at the same time. Therefore it is very likely that it will take some time (several days at least) to find what works for you. You may have to endure a few more quite bad nights to he able to evaluate the effectiveness of your current combinations of medicines. However difficult, try not to be too anxious, accept that things will be bad for a few more days at least, and make a list of things to discuss with you doctor. Including faster-acting buprenorphine pills that allow for almost direct action if symptoms are not at all controlled. That is a good suggestion from restlessoz. .

[lorri214 in reply to LotteM]

I will try a tylenol. I'm desperate. Dr said not to take the oxycodone. I can barely sit here to type this. I already had too many bad days.

[lorri214 in reply to LotteM]

Im thinking about taking the patch off or adding another half patch to it. pharmacist said not to cut the patch to add.

[Kakally in reply to lorri214]

Hi, I and I know many others can really empathise with this torture you are going through. Personally I would add a whole 2nd patch . I’m not sure what others say Sue Johnson , Joolsg and others who may be familiar with use of the patch. Keep going, keep posting . Yes even paracetamol can help the buprenorphine patch to work a bit better.

LOVE🤗

[LotteM in reply to lorri214]

Sorry for the late reply Lorri. HU ‘froze’ for several hours.

I second Kakally: keep the patch on (it contains meds for 7 days) and add another. Hope you already did that and the RLS has lessened.

And ignore the pharmacist. Many people cut the patch, including me. It is a good way to adjust the dose.

[Marzipana]

I will be praying for you as well, Lori! Since I found this forum, I have been touched by the suffering people with RLS experience, and have been praying for healing and relief for ALL OF US!