Progress is being made!

[Leeserann]

Good morning everyone,

I apologize in advance. I've let too much time go by without sharing needed updates. Due to the amazing feedback, I have received from this forum, MANY changes have been made in a short time and I'm truly in awe at the results so far. Last night I was reviewing and consolidating the pertinent information into one place so that I can easily locate certain details for accuracy and reference and noticed that despite being told NUMEROUS times, I'd neglected possibly the most important advice I've been given to date; getting the full iron panel done to see if an iron infusion could possibly help. I've jumped through 20 other hoops, but the one that would be in my best interest by "first doing no harm" - a relatively "natural" approach - meaning no medication, and it's the one thing I've not done. Sigh. I'm going to follow through with that.

I also realized that I made a simple math mistake - I was taking 1.5 mg of pramipexole when I first joined this group. We're advised to reduce the dosage by approximately .125 mg every 2 weeks. How I worked that out in my head that it meant a third every 2 weeks is beyond me. The first 2 weeks I reduced to 1 mg. The second 2 weeks I reduced to .5 mg and because I eliminated coffee and sugar in the beginning, I've kicked less in the last 4 weeks than I may have in forever when I should have been kicking more! Yesterday, I was REALLY struggling to stay awake during my workday at my desk though, so I had a half a cup of coffee, and a bunch of sugar Guess who was kicking like it was my job last night??? THIS GIRl. SMH.

When I first posted 3+ months ago, I was on:

Lisinopril and metoprolol for blood pressure and pramipexole for RLS. I had recently discontinued the diphenhydramine or was about to. Since then, I got a new pcp and we got me off the Lisinopril and replaced it with Losartin. I then learned that the metoprolol was bad for RLS so we are switching that with propranolol. The latter has been prescribed but I've not switched yet because I'm about to start the gabapentin. I don't want to make too many changes at once. I shared the Mayo clinic RLS algorithm and some other details from the group regarding medication options. He's made sure my blood work showed that I could handle it and had a baseline to go off of first and we started making the adjustments.

Since I could tell from my first few days weaning off the pramipexole that I was going to be going through hell, I decided to find something that would help me sleep as well as help my anxiety. I had previously been on Mirtazapine so I thought this might be a good time to start it back up. It's helped with the sleep and anxiety tremendously, but it doesn't just stop making you sleepy because you woke up and need to start your day. I'm finding it hard to stay awake with it coursing through my bloodstream during the day. Since I started the mirtazapine, I've also noticed that I'm retaining a lot of water. My ankles and hands are swelling a lot. So that's why I was on the hydrochlorothiazide before . . . so I decided I should go back on it. I should have checked here to find out if those 2 are an issue with RLS. I'm playing all kinds of Russian Roulette with my meds.

Now, I'm down to .5 mg of the pramipexole. I had understood that I had to be completely off it before I could start the gabapentin. Now I see that that's not the case but after hearing the horror stories of another posters who didn't wean off their DA's first, I'm afraid to try it. Today was supposed to be my last day on the pramipexole, as I've been at a .5 mg dose for 2 weeks. After rereading previous posts, however, I see that since last night was so bad, I should probably wait before trying to drop again. (as well as staying away from caffeine and sugar!)

I've been doing a whole half a pill at a time, so my original plan was to stop it completely tonight, wait 2 weeks with nothing but the mirtazapine, and the bp meds and then start the gabapentin. My PCP said he was going to start me at 300 mg. Now, I don't know what to do. Do I bite the bullet and stop the pramipexole tonight? Do I wait until I'm sure this withdrawal kicking is passed before reducing again? Do I only reduce .25 mg instead of .5 since I've been successful so far or do I slow it down because it's getting ugly? Do I start the gabapentin now? Do I wait until the day after my last dose of it? Do I wait 2 weeks to make sure it's out of my blood stream? I haven't yet started the hydrochlorothiazide. I need it but am apprehensive to be starting and stopping so many things in such a short time frame and not know which one is doing what. If I have any issues, how would I know which one is the culprit? Please advise.

Thank you for your time and feedback in advance. You guys are really an outstanding support group. Sue, your knowledge and experience have been so incredibly helpful. I'm learning so much here. And yes, I know what I choose to do with the information I glean is on me. I've not heard anyone claim being a doctor. We're all responsible for our own health. I know. Still - Thank you, all!

[SueJohnson]

Start the gabapentin now since it takes 3 weeks to be effective. I would slow down the reduction in pramipexole since the last reductions are the hardest and I would wait until the previous withdrawal symptoms have settled before reducing further.

[Joolsg]

Well done in getting so far.Mirtazapine, like all anti depressants, triggers and worsens RLS, so ask for pregabalin or trazodone instead. Both help anxiety and are RLS safe.

[Pippins2 in reply to Joolsg]

Joolsg I notice Lisinoprol mentioned in this post and I take it for high blood pressure, is it a no ,no for RLS?

[Joolsg in reply to Pippins2]

patient.info/doctor/restles... inhibitors and beta blockers are common culprits, but everyone is different. It could be worsening your RLS BUT, it's important to discuss fully with your GP, as controlling HBP is very important.

There may be alternatives, or, if the RLS is fully controlled, and you sleep better, your HBP might reduce & you might be able to come off lisonopril.

[Leeserann in reply to Joolsg]

I chose to stop the lisinopril because they've released several reports saying that it was carcinogenetic. Metoprolol as well. Plus, I was told here that Metoprolol aggravates RLS and the propranolol didn't.

[Pippins2 in reply to Joolsg]

Thankyou Joolsg I must be slipping I wasn't aware of this 😅

[Leeserann in reply to Joolsg]

So far my only complaint about the mirtazapine is the same as trazadone - it's swilling in my bloodstream all day and making me sleepy. The trazadone made me sleepy and stupid and didn't help with the anxiety.

[SueJohnson]

Mirtazapine makes RLS worse for many people. Generally diuretics make RLS worse. I believe you were taking trazodone at one time which is safe for RLS. So is Wellbutrin.

[Leeserann in reply to SueJohnson]

The trazadone didn't relieve my anxiety as much as the mirtazapine and it helps me to sleep really well. I have notice not increase in the kicking with it. I just can't get it out of my bloodstream during the day. It was the same with the Trazadone. I'm trying to take it earlier in the evening in hopes of getting it not be such an issue during the day but so far, it doesn't seem to be helping. The trazadone was worse. I felt like I was swimming through jello and even lost a job because I couldn't remember anything while taking it. I was useless. That's my biggest problem with the both of them. I wonder what would happen if I halved the dose.

[SueJohnson in reply to Leeserann]

If you need something for sleeping, I would recommend lunesta. I take it.

For anxiety Buspar (Buspirone) is very good and may actually help with RLS.

[LotteM]

No-one has yet responded to your question about the pramipexole taper. I understand you reduced rather quickly from 1.5mg pramipexole to your current 0.5mg. Well done. You implied it wasn’t too difficult, maybe due to also reducing or almost stopping coffee (with sugar) intake. I do think that you should slow down reducing this last 0.5mg.

Wait for symptoms to settle for at least a few days before you do the next reduction. And don’t go from 0.5mg to zero. Try to get 0.125mg tablets (talk to you doctor and pharmacist). Then try a reduction of 0.125mg first using the new 0.125mg tablet ir by cutting your current 0.5mg into quarters. If at some point it becomes difficult, slow down even more and reduce by half a 0.125mg tablet (thus by about 0.063 mg). The last bits are usually the hardest, but by slowing down it may be more feasible.

And, as Sue said, start the gabapentin well before the last pramipexole dose. It take some 3 weeks to become effective. Also, you meed some time to build up to a dose of about 900-1200mg, which is the average effective dose (if I remember correctly).

Well done so far, keep going, you will be better.

[Leeserann]

Thank you. It WAS horrible the very first week of reduction from 1.5 to 1.0 mg but as soon as I stopped the caffiene and sugar intake, it immediately improved. So much so that my husband noticed that I was kicking less than usually, never mind having started to wean off the DA. For me, that's what made it possible to get this far. The moment I reintroduced them, it immediately got very bad. I'll stay off the caffeine and away from the sugar from now on.

[Gemgel]

I agree with Lottem

I weaned off of the same - 1.5 mg of prama I took about 8 difficult months so I would suggest you keep cutting the tabs (I know they are small). I used a very sharp knife and they were not all perfect but I divided them up into sizes and took the larger ones first and kept the smaller ones for the next wean. Stay on each one for at least 2 weeks. Once I got towards , what I felt was getting close to the end I started on 300mg of gaba. And did that for a couple weeks. Once off of prama I needed to experiment with the dosage but finally have settled on 600mg at 9:00pm. This may or may not help but I have also found that taking a half serving of THC/CBD/CBN gummy at the same time has been helpful.

I am 73 yrs old and had been taking prama for around 30 years. Since I had been taking it for so long I needed to take longer to wean off

I wish you the best of luck in this difficult journey. It is possible. It has been about 3 months now that I have been off of prama and I have felt sooo much better. It very rarely bothers me during the day now. It does pops up just occasionally through the night. But nothing at all like it was.

[Leeserann]

Thank you so much! I'm glad that you're doing better and I'm glad to have realized that I was doing it too fast and needed to slow down before I created an unnecessary nightmare.