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Pregabalin


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#1 dimarzio

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Posted 22 April 2016 - 04:34 PM

Was prescribed Pregabalin 3 week ago (after continually nagging the quacks having had to research it myself). Took a few days to start working but wow, what a difference.

No, It's not a cure but it sure seems to have helped.

For anyone being fobbed off with other medication, this is the one, Can't describe how much better I feel and how much more I can do since it was prescribed and then increased,

Currently taking 150 mgms 3 times per day, I suspect 100 mgms would do just as good a job and am tempted to try a reduction as I can increase it again if necessary,

Best treatment I've had so far but now still need to deal with the insomnia (as I type this at 4 am in the morning),

Don't know how long this treatment will last before I become tolerant, but going well at the moment.

The insomnia is terrible though - I don't get to sleep until 6 or 7 am and am then awake at 8 or 9 am but I'm no longer being prescribed Mogadon which was giving me a pretty solid 6 or 7 hours sleep.

Not sure how I manage to keep going on 2 hours sleep per night (and no I don't sleep or catnap during the day.). Feel so tired but just can't nod off.

But for anyone who hasn't tried it, I can't praise this drug enough.



#2 Joelf

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Posted 22 April 2016 - 08:31 PM

Hi Dimarzio,

Pleased to hear that you've found a medication that has helped you feel much better.

I would just mention that unfortunately medications do work differently for different people, and so although this particular drug has improved the quality of life for you, it may not have the same effect on other members. Also, like every other strong medication there are side effects, which don't always become apparent straightaway (prednisolone is a case in point; I felt wonderful after I'd started taking it, but that was before all the side effects kicked in! :wink:) I've never taken pregabalin, but took gaberpentin, which is in the same class of drugs, for a very short time when I had my hip replacement.

We do have several threads on the subject of Pregabalin (Lyrica) which I hope you'll find interesting.

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#3 Margaret

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Posted 23 April 2016 - 12:36 AM

Hi Dimarzio,  just  word of caution.   Gareth was put on Lyrica, probably 6 yrs ago, and did fine for about 4-5 weeks.  One day he went "schizo" yelling and screaming at me to "stay away",  pointing at me and saying "robot",   "kill me", he thought I was trying to kill him!  I immediately got him to the doctor and blood work showed that his liver functions numbers were sky high and his thyroid had shut down.  Since you're not DS/ASD, I am sure you would be able to feel/notice changes before you get that extreme.  Just be careful.

 

Take care, Everyone.

Margaret



#4 dimarzio

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Posted 24 April 2016 - 12:45 PM

Thanks Jo - I read the threads and do have some visual disturbance such as a bit of blurriness and double vision sometimes doing close up work.

Margaret - I will watch carefully for the problems you mentioned but so far, so good.

I can't be 100% sure the whole effect is down to pregabalin as it's been fairly mild here lately. Weather is expected to get colder this week so that should give me a better idea.

Still don't get any drowsiness and managing on around 2 hours sleep per night - I'm amazed that I have been able to function so well considering.

My wife tells me it's making me a bit Euphoric but that's not a bad thing in my situation.

I would still recommend that Scleroderma sufferers who have not done so up to now give some consideration to this drug - ask your Rhumo, general practitioner or just read some of the literature on the net. Be aware of it at least.

#5 Shelley Ensz

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Posted 05 May 2016 - 03:43 AM

Hi Dimarzio,

 

I'm glad you've found some relief with pregabalin. I'd like to note for others, and as a disclaimer, that it is generally prescribed to help with neuropathic pain, or fibromyalgia. It is in a class of drugs called anticonvulsants. It can have some very serious side effects and the dosage should never be altered, or stopped, without consulting a doctor.

 

As it happens, people who are not typically sleeping soundly for a normal amount of time every night, and awakening refreshed, should seriously consider sleep disorders testing and possibly even neurological evaluation. Inadequate or poor quality sleep is very hard on the immune system. Additionally, scleroderma is also associated with several sleep disorders.

 

Coping well with chronic illness requires good sleep hygiene, nutrition, and stress reduction -- all of which are challenging to achieve at best, not to mention, when we are tired and stressed!

 

Anyone reading this thread who is not sleeping well and feeling refreshed, in general for over two weeks (with or without scleroderma), should ask their doctor to evaluate them for a sleep disorder. This typically requires sleeping overnight in a sleep facility and being monitored while sleeping. It can detect things like insomnia, depression, restless legs syndrome, and sleep apnea.  Once the problem(s) are identified, then the appropriate therapy can be used.

 

Meanwhile, anyone who is significantly sleep deprived should avoid driving or operating machinery, as sleep deprivation can be as hazardous as drunk driving. See Neurocognitive Consequences of Sleep Deprivation, and Sleep Disorders and Scleroderma. With insufficient sleep, we are subject to "microsleeps".  See Microsleeps: 30 Seconds to Catastrophe.

 

I hope that with some good treatments and evaluations, you will continue to feel better, and more functional, soon!

 

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#6 dimarzio

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Posted 06 May 2016 - 09:40 PM

Thanks Shelley, I've asked about sleep disorder testing, but there are very few beds available and I can't get the doctors to arrange it.  They did however, give me an oxygen and pulse monitor thing to keep on my finger for two nights whist a machine monitored the output and I am still awaiting the results of this test done some weeks ago now.

 

The Pregabalin is still working, but not so well as at first - they are considering whether to up the dose a little.

 

I've also had a head MRI but again still awaiting results.



#7 Shelley Ensz

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Posted 09 May 2016 - 06:05 AM

Hi Dimarzio,

 

I hope you get some of your test results soon, and perhaps the monitor or MRI will provide a path forward for appropriate treatment. But if they don't, keep pressing for sleep disorders testing. It's just not right, to not sleep right, and we all need as much in our favor as possible when dealing with chronic illness.

 

:hug-group:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#8 Kathy D

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Posted 17 May 2016 - 08:18 PM

I have a relative who was prescribed this for fibromyalgia, it is helping her.


Diffuse Scleroderma Diagnosed March 2009