How succesful is lyrica for sjogrens ... - The Australian Sj...

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How succesful is lyrica for sjogrens sufferers out there?

bambino4 profile image
13 Replies

Hi everyone, as a sjogrens sufferer for the past 5 years i have a lot of joint and back pain which is getting worse over time, so my doctor has recommended i try Lyrica for pain relief on a long term basis ....can i have thoughts/opinions please from anyone taking this drug....thankyou😊

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bambino4
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13 Replies
jaki1963 profile image
jaki1963

I have not taken Lyrica. Ive been on orencia now for 3 months and feel great. I got diagnosed in 2013 but i had ot years earlier. My eyes joints and my body was in pain. Now im hiking and doing my normal stuff. Doesnt hurt to try. If you are not feeling its right try the next medication.

I have lupus, sjogrens and arthritus.

Sekka profile image
Sekka in reply tojaki1963

"ot" in your post? Do you happen to mean orthostatic tremor or does it stand for something else. Please tell me yes as it's so rare and would be so helpful to know someone else... if it stands for something else just let me know!

jakiblu profile image
jakiblu in reply toSekka

Its a error in my sentence. I meant to say "it"

Good luck hope you find a good source for your issue

Persiankiwi profile image
Persiankiwi

I've only taken it for fibromyalgia nerve pain but being a pharmacist didn't want to (side effects) but agreed because of GP. 75mg bd is starting Dose then normally monitored by GP to increase upwards. I got nausea, dizziness, disorientation, drowsiness, blurred vision, headache ( worse than normal) weight gain, increased appetite & worse cognitive issues. Put 9kg on in 7 weeks & didn't stop or help with electric shock type pain.or other pain. But saying that every patient is different, what works for one doesn't work for another. It's an anticonvulsant & it's thought to work by decreasing the number of pain signals that are sent out by damaged nerves in the body. Ask your Dr or pharmacist for print off from Mims, it will give you all the info to make an I formed choice.

weathervane profile image
weathervane

Hi bambino , i have been taking lyrica for about a year , i started on 25mg twice a day and increased very gradually to 100mg twice aday . I have found it has mainly helped my muscle pain , I couldn't bear to be touched and just ached . I was lucky as i have not had any side effects , increasing gradually to optimum dose may have helped . I hope , if you start on it that you have the same success 🌸

Megansheart profile image
Megansheart

Hello bambino4,

I commenced Lyrica about six years ago primarily for neuropathic and body-wide pain. I started morning and evening doses gradually working up to 150mg in the am and 150mg pm. However the am dose made me feel so ataxic (wobbly on my feet and walking like a drunk person) as well as sleepy, that my doctor suggested taking 300mgs before bed. This solved that problem. Furthermore I slept so well and for the first time in years didn't wake to go to the loo overnight.

In terms of how it helped my pain. I think it made the neuropathic pain more tolerable although it is still 24/7 pain.

The WORST thing for me with Lyrica is if I ever miss a dose (unknowingly) I have the most dreadful night. I may sleep lightly for ten minutes then wake in a bath of sweat and this goes on all night. It's usually about 4am when the penny drops and I realise I must have forgotten my night dose. By then it's too late to take it, so I consequently have a horrendous day following.

When I was on the 300 mg dose I never had any weight change problems at all.......

However just a few months ago my Rheumatologist suggested I try taking a morning dose also...starting with 25 mg for one week and adding an extra 25 mg per week until I felt ataxic again. This happened when I got to 100mgs so I reduced the morning dose back to 75 mgs.

I think this extra 75 mgs per day (added to the 300mgs) may have been the tipping point in terms of weight gain as since then I seem to have unfortunately had a bit of a fight with the kilograms, which is disappointing.

Overall for me Lyrica has been wonderful. I don't know where you are in the world bambino4 but in Australia until about three years ago Lyrica was not subsidised however I still purchased it on a private script because I found it to be so effective. I was very happy when it came on the PBS and became more affordable.

bambino4 profile image
bambino4

Hello...thankyou for your lengthy reply. I am in perth western Australia and yes my doctor told me its now on pbs and didnt used to be. I do feel a little scared to pursue this drug as i have a lot of lightheadedness and dizzy feelings with the sjogrens as it is! Id love to sleep well though! The weight gain is scary plus i do like a glass of wine and posts regarding alcahol and lyrica are very negative😣

So im very confused😏

Thankyou

Tally profile image
Tally

I am only able to tolerater 25 mg pm but know of others on much higher doage and swear by Lyrica .Hope that helps

Nepthys777 profile image
Nepthys777

Hi bambino4! I was on lyrica for fibro, didn't help much for the pain but my energy levels increased a little & it helped a lot with my sensitivity to lights which was fantastic while it lasted! Also helped a lot with my sleeping problems, night sweats etc. Was soooo good to finally get a good nights sleep I would've kept taking it just for that except after 4months I had gained 20kgs (no changes to diet) & it somehow reversed my menstrual cycle which was too hideous to bare as that was the one " normal" functioning thing i had left. Eventually all my symptoms returned so I decided to taper off it, much to my GPs disgust (need a new one asap) anyway latest rheumy app finally diagnosed my sjògrens & she said it was good I came off it as it can make some people experience dry mouth etc. So glad I trusted myself for a change :) hope you find relief soon

bambino4 profile image
bambino4

Hi nepthys...can i ask what dose you were taking for four months?

Thankyou😋

Nepthys777 profile image
Nepthys777 in reply tobambino4

Started with 75mg a day but gp kept increasing the dose until i was on 300mg (150 morning & night)

Been thinking about trying again on just a 25mg a day as I have heard others have success with that but I'm terrified of side effects. Did make me quite groggy also

bambino4 profile image
bambino4 in reply toNepthys777

Yes im thinking the same...a few people have recommended 25mg to me also..thankyou for replying to me😊

Fisherman01 profile image
Fisherman01

I am on gabapentin 2000 mg a day. Larica is an update of this.It has been very good for me I was on very strong pain drugs and manage to get off of them not saying it took all the pain away but helped to make it more bearable I am one pill away from maximum dose.

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