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Restless Legs Syndrome

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Drug change to Clonazapam after allergic reaction to pregabalin

HilsK profile image
8 Replies

As a starter plan towards being weaned off Pramipexole after 22 years, I have been given Pregabalin, increasing dose each week by 25mg. Been doing this for the last 4 weeks. I have always developed an excessively dry mouth, sore tongue and blurred vision about 30 mins after taking it. GP said my body would begin to accommodate it! Mmmm

Last night I took 125mg and the sore tongue, dry mouth, blurred vision etc happened but also so did itching and a hives like rash and a tight chest to the point where I couldn't breathe and my O2 levels dropped. There was quite a lot of panic last night but I'm OK now. I feel sad because for the first time, I felt a lot of relief from serious Augmentation symptoms from that Pregabalin, but I guess I am very allergic to it. Pretty scary.

So today I find yet again another change to Clonazapam beginning on 250 mg every other night, increasing to 500mg every other night after a week ..... Has anyone had any experience of this drug??? I am beginning to feel very insecure in the hands of the NHS.

Thanks

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HilsK
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8 Replies

It does sound as if you had a reaction to the pregabalin, but nobody could have predicted that.

I'm not sure from your description that you had anaphylaxis, it sounds more like angioedema, which is bad enough in itself but not as quite as danmgerous as anaphylaxis.

It is however an allergic reaction and it must be due to the pregabalin.

Clonazepam is a benzodiazepine, popularly used for RLS. It has both sedative properties and muscle relaxant properties and some people find it helps. However. for RLS symptoms it's nowhere near as effective as a dopamine agonist or a gaba.

If I recall correctly you were suffering augmentation and still need to withdraw from pramipexole.

To help withdrawal and to replace pramipexole your next opiton is an opiate. This will bemmore effective than clonazepam, but you will most likely need to see a neurologist to get a prescription for an effective opiate.

Since both pramipexole and pregabalin have failed yoiu, then you do fit the criteria for a referral.

Your GP may be willing to prescribe a milder one in the meantime e.g. codeine or tramadol, you could try asking.

I'm sorry you've had this set back.

HilsK profile image
HilsK in reply to

Thankyou

Joolsg profile image
Joolsg

I’ve just replied to you - yes you can have a severe allergic reaction. Report it to Yellow Card Scheme.

yellowcard.mhra.gov.uk/

Clonazepam may help but if not speak to your GP about Targinact or OxyContin.

Jules1953 profile image
Jules1953

Two nights ago I commenced Buprenorphine 200 micrograms

(As hydrochloride)

In Western Australia it is sold under the label Temgesic Sublingual Tablets.

It is a controlled Drug here in Western Australia so possession without Authority is illegal.

My Doctor went through the appropriate channels to get me the necessary approval. I have had RLS for 49 years and all other medications have been exhausted.

The tablets are dissolved under the tongue. They come in very small doses and I took 3 tablets over a 1.5 hour period after going to bed last night.

So that is less than 1mg of the Buprenorphine.

I immediately stopped all my other RLS medication last night and commenced the Buprenorphine.

I was taking .....

600mg Gabapentin

5mg Endone (oxycodone)

0.250mg Sifrol (pramipexole)

It took me a while to get to sleep but once asleep I slept through to 6.00am

I then stayed in bed till 11.00am sleeping on and off with no RLS symptoms and no jerking.

I will keep you up to date with my progress.

Progress......last night it took a few hours before I could get to sleep.

In total I took 1mg of the Buprenorphine.

I will see how I go sleeping tonight.

HilsK profile image
HilsK in reply toJules1953

Thankyou for sharing that Jules I need to hear positive stories at the moment

jack101 profile image
jack101

Hi I take clonazepam for RLS and PLMD. Am curious though about your dosage. My tablets are .5mg each and over the years I’ve been prescribed between 2 and 3 mg total per night.

For me, clonazepam works pretty well. However sometimes need a pain med as well. Codeine phosphate or if necessary Oxycodone (latter from pain consultant).

Edit: I should add that as clonazepam is short acting I don’t understand how taking it every other day would work ??

Good luck with your transition 💗Augmentation is horrible :-/

xo j.

Felicity21 profile image
Felicity21

Hi there, I started on half a tablet of 0.5 mg Clonazepam and have been on a whole tablet for a few years. This is supposed to help me go to sleep. I don't think it is specifically for RLS. I tried in vain to come off it last year. I believe it has a long life so it would make sense to take it every other night. I should try that. Good luck.

I was started on Klonopin (Clonazepam) back when in the late 1980's (I think - it was right before I left Iowa for Florida) but I could be wrong on the date. After the first dose I was given, I became quite irritated and the littlest thing sent me into a verbal tirade. After the second dose, I threw a lamp through a window in my home. Fortunately, my husband recognized that this was behavior that was way out of character and contacted my GP. She asked him to confiscate the medication and if he could get me into see her right away. It was the next day when the symptoms went away, that I got into see here. She explained that it relaxed that portion of my brain that kept me under control. This allowed me to become upset and act out on things that were trivial. It also did not do my RLS any good.

I understand this is a rare reaction. Because of the long half-life of this medication (more than 24 hours), it tends to build up in the system. Half of it is gone in 24 hr. You take another dose in 24 hours, you have 1/2 the dose from the first day plus the whole dose now. That is 1.5 doses swirling in your system. On the 3rd day, you add 1/2 of of the 1/2 dose (1/4) dose from the first day plus 1/2 the second dose plus the whole 3rd dose. That is 1.75 doses and so on. eventually you have enough of the medication that the person is sleepy, etc. Side effects also increase. This is becoming a real problem in older people because their clearance time is prolonged.

It is rare for someone to have the reaction that I had but do talk to your support system (your family) about the risk of there becoming issues with this drug where it builds up.

Jerold Crawford, Citrus Park, FL

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