If anyone is on progabalin for nerve pain wh... - Vasculitis UK
If anyone is on progabalin for nerve pain what dose are you on. Thank you.
Hi Cloe
I'm on pregabalin at 150mg. However, this was prescribed for a different medical problem before i was diagnosed with vasculitis but my Neuro has said it is also given to vasculitis patients aswel.
I hope this helps.
Sandra x
I am on Pregabalin - 300 mg a day. My WG caused a stroke in 2002 which has left me in constant pain. Doctors told me that lower doses of drugs used for cases of epilepsy have been found to be beneficial to neuralgic pain.
To be honest, I haven't noticed any reduction in the pain. However, when i tried to stop taking them, my pain increased, so logically they must be doing something. I think that because the pain is constantly with me, any reduction is so gradual that I don't notice it, but stopping the Pregabalin causes a more noticeable increase.
Thank you! Thats very helpful, my sister has constant pain too, she has Churg strauss. She's also on amitriptyline. Thank you for your reply. 
I was tried on Amitriptyline, but it made me feel light-headed - I kept having giddy spells - as does higher doses of Pregabalin.
Sorry - just thought of something else. Has she tried a TENS machine? I was sent to a Pain Management Clinic where a doctor told me that in cases of long-term pain, the brain becomes used to the feel of the pain, so that it expects to feel the pain, and that a TENS machine can disrupt this.
He recommended a TENS machine for me. It cost me around £40 - the local Health Authority here in Plymouth does not supply them free. It didn't really work. Having said that, when the pain really get to me, I do use it and it helps.
Hi Cloe,
I am now on 600 mg a day Pregabalin as well as Morphine for the pain. On some days I get some relief, but I am not sure if it is the meds on an improvement in my health.
Overall, I would say that it has helped.
Hi - apart from having Vasculitis I have a Degenerative Spinal Problem ( not sure if linked?) but I am on 600mg daily as discs lie on nerves which are too high in the neck to operate on and this is a "dream medication" for The Central Nervous System.
Hi Cloe
I'm on 150mg per day (was on amitriptyline and morphine patches as well but have come off these). I also have Zacin (capsaicin) cream to use on affected areas.
Peter
Thank you everyone, your responses have been more than helpful. Given me thoughts for further direction. Thank you and wish you all the best. xx
I have churg Strauss syndrome which has affected the nerves in my legs and left me with footdrop in right foot. I am currently on 400mg pregabaline but it has been as high as 600 mg the maximum. I also find amitriptyline really helpful at night when my nerve pain is worse as it relaxes me and helps me sleep. I'm on 20mg. I have tried higher doses but couldn't tolerate them they knocked me out. Hope that helps
Thanks Katie, yes it does. My sister's treatment started 5 wks ago but her diagnosis was confirmed 3wks ago. Last friday they lowered her Prednisilone from 60 to 45mg, over the bank holiday she was in agony. Eventually we managed to get some advise to increase her preds back. I just spoke to my sister and she asked about a thousand questions, like When did they lower your preds? are you still on them? if so how much? How long have you had CSS, where are you from, (We're in Essex). It was nice to hear her say this because its the first I've heard wanting to connect personally as I have been doing all the talking and researching for her, so Thank you very much Katie, it's amazing to here her do this. Wishing you all the best!
Sorry Katie, also she asked what doses of your pregabalin you take throughout the day, She's wondering if she can split her doses for during the day, not just morning and night. Thanks again!!
Hi Cloe I was diagnosed last Oct with CSS. I was rushed into hospital and given high doses of prednisolone on a drip immediately and kept there for eight days whilst they carried out lots of tests to make sure other parts of my body were not affected. After being discharged I had to go back for six sessions of cyclophosphamide treatment as a day case. The docs started decreasing my prednisolone as soon as I left hospital. Initially I came down 10mg every two weeks from 60mg. I am still on 7.5mg and coming down 0.5mg every three weeks - so it's been very slow. After the cyclophosphamide sessions I went on to azathioprine and built up to 200mg a day.
For the pain - in hospital they gave me small doses of morphine during the night. I tried taking it at home but it was too much and gave me panic attacks.
I was also on tramadol slow realease 100g a night - that helped but also made me feel very sleepy during the day and so after three or four months I gave that up.
The pregabalin causes me less side effects - I have slplit the dose to 100mg three times a day whilst taking tramadol. I also went up to 200 three times a day when i first gave it up. Now I take 200mg in the morning, 100mg about 1pm and 100mg at about 6pm, then the amatryptiline at about 8pm. You need to experiment really which works best for you. It's nine months since I was first diagnosed and was really poorly - I would expect your sister to be on higher doses than I am now. My local chemist was really helpful - I used to ring her up and talk to her about the side effects of all the drugs and ask for her suggestions on pain relief and when to take what.
I live in Yorkshire - a long way from Essex.
It will be really tough for your sister - the best advice someone gave me was expect to feel pretty rough for about a year but it does get better. My experience has been it does get better within that year - but it's a slow process. I hope your sister does get better soon.
I have WG and over the last 18 months developed chronic 'tension' headache. Nothing to do with stress but constant.
I saw a Neurologist who initially had me on Gabapentin and then Pregabalin 600mg per day. Neither worked for me ..... though they made me eat for England! I have now been moved on a stage and take Duloxetine (I think 600mg). This has been beneficial though the headaches continue but to a lesser extent. Also doesn't make me quite a ravenous!
Gabapentin and Pregabalin are known to be bad for weight gain!
Hi...I'm waiting for biopsy results to see if I have vasculitis.....been waiting nearly 5 weeks now,.....I'm on Pregabalin 300g at the moment although been told I can increase....was previously on Gabapentin....which did not help and Amitriptlyne which made me have restless legs.
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