Aching legs: Is it normal when weaning... - Restless Legs Syn...

Restless Legs Syndrome

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Aching legs

Doings profile image
10 Replies

Is it normal when weaning off Pramipexole to have aching legs especially heavy calf muscles, i also began Pregabalin yesterday, might it be that? Im so anxious about it - or could it be related to my Astra Zeneca jab which was back in February.

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Doings profile image
Doings
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ELECTRONTRAV profile image
ELECTRONTRAV

Hello Doings,Just a word of warning about Pregabalin, I have just come off it as it was reducing my platelets by about 30% and still falling. Do read the side effects listed in the paperwork

with the capsules, I was affected by quite a few of them and THEY WERE SERIOUS, but they sneak up on you slowly so you don't notice, be ready and prepared. However you may be lucky and have no problems. I hope so, they did control RLS well for me.

My final dose level was 2 X 100 mg per day, one each morning and evening. In total I had been it for about 9 months, getting off it is not as simple as the suggested 1 week. If you get into problems, aim for 4 weeks to reduce the dose and you will still have some withdrawal symptoms for a few weeks and they are not nice either. Sorry to be a wet blanket, but better forewarned etc

hoooray profile image
hoooray in reply toELECTRONTRAV

Pregabalin!! Blimey it messed with me. At fist I had hallucinations, then on a lower dose it messed with my head - I lost all my memory and then I felt more pain than ever before. After three months off it I'm still experiencing issues and my Consulatant wont let me have meds which would normally be the right ones as I had psychiatric issues with pregabalin. This is a nasty drug which might help some but it most certainly didn't help me. Take with caution.....please......

Doings profile image
Doings in reply tohoooray

Now I’m petrified to take it, but my gp wont know what to advise either.

Doings profile image
Doings in reply toELECTRONTRAV

Wow that’s worrying. I’m hearing all sorts of unpleasant things I’m anxious whether to continue. The listed side affects are so many and seem cover everything going ! By the way what do you mean by platelets ?

ELECTRONTRAV profile image
ELECTRONTRAV in reply toDoings

Hello Doings,Platelets are the blood cells that stop you bleeding if you cut yourself, if they get too low you are in real trouble and you could start to bleed internally

Doings profile image
Doings in reply toELECTRONTRAV

That sounds awful i bet my doc doesn’t know. How frequently do you get blood test to check ?

ELECTRONTRAV profile image
ELECTRONTRAV in reply toDoings

Hello Doings,I usually have an annual MOT in autumn time, this year I had a sore throat for about 2 months so I was sent for a blood test, that is when the reduced platelets was noticed. I think if you are on Pregabalin a check every 4 months would pick it up early. If you have to come off Pregabalin do it over about a month and then from my experience it will take another 3 or 4 weeks to get out of your system

Parminter profile image
Parminter in reply toELECTRONTRAV

Could you please be a Very Wet Blanket and tell us more about the side effects you experienced. And the problems coming off?But only if you can bear to recall it, it sounds dreadful.

ELECTRONTRAV profile image
ELECTRONTRAV in reply toParminter

Hello Parminter,Well you asked for it, here is the full unexpurgated version. The side effects sneak up on you, so you do not realise they are there until something more serious is picked up.

Starting with side effects 1 to 10 people.

Decrease in sexual interest (this comes up again in a big way in 1 to 100 people, but I wont go into that)

Insomnia

Feeling abnormal

Problems with balance

Dry Mouth

Flatulence

Abnormal style of walking

Sore throat

Side effects 1 to 100 people

Change in perception of self

Sexual functioning (big list of problems)

Sensitive skin ( the sensation after touching or scratching would be intense and last for up to half a minute)

Dry eyes

Flushing, Hot flushes

Platelet count decreased (very dangerous)

Itchiness

The paperwork says you can come off Pregabalin in a week, I took 2 weeks to be safe but it was still too quick. It is only now after a further month that I am starting to feel more like me. Most of the side effects seem to have disappeared although I still get the occasional hot flush, so I don't think my temperature control is back to normal yet.

This is my experience of Pregabalin, Gabapentin would have more or less the same effects I have been told. Pregabalin may work very well for others. Now I need a neurologist who really knows about RLS and they seem to be a bit thin on the ground.

Parminter profile image
Parminter in reply toELECTRONTRAV

Thank you for that, Electron - Your warnings prompted me to do more searching amongst other patients and their stories of harm.

It is clear that serious damage can be done in a very short space of time.

The list of side effects is truly alarming, and the stories of withdrawal are as bad, if not worse.

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