I was put on Gabapentin for the lower back pain caused by 2 bulging discs pressing on my nerves. I started taking it in September- 900mg per day. It didn’t seem to be making any difference but I saw the neurosurgeon in November after the steroid injections had worn off and he encouraged me to keep taking it. By the end of the month I had decided to come off this ineffective drug.
The withdrawal has been savage. I have had nearly all the symptoms listed on the NHS website- nausea, worse insomnia, hot flushing, severe depression and anxiety etc. The GP gave me a reducing plan which I got to the end of about 10 days ago and then all the withdrawal symptoms came back even worse, so I am on 100mgs per day just to keep me sane until I see the GP on Monday. The trouble is I don’t think GPs generally know a lot about drug withdrawal. I remember coming off Amitriptyline a few years ago and the withdrawal was very similar- awful!
Has anyone got experience or ideas of how to reduce further? On a very active Facebook page they recommend watering down the capsule 1mg to 1 ml and reducing by 10% per month. I haven’t quite worked it out but that would take me a long time! Plus, I am going to Sri Lanka for 2 weeks in 3 weeks’ time and wouldn’t be able to do that there. I may have to stay on this dose until I return.
Meanwhile, I am managing to reduce the Pred. the furthest I have ever got to in the last 12+ years - 7.5 mgs so far. Amazing!
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suzy1959
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They are far too keen to encourage patients to stick to these drugs that rarely help in PMR and have their own horrible adverse effects - including addictive dependency.
How quickly did you drop from 900mg? In this article
Very quickly down from 900 to 300 per day. Then all the trouble started! Have been up and down since then but getting lower than 100 seems quite complicated as the lowest dose is 100.
What happens if you use the DSNS approach? Miss one day, several days normal dose, miss one day, one day less normal dose before the next no dose until the no dose days join up.
That's sometimes a different matter - you get into a pattern that is hard to break. I just wish they weren't so keen to hand it out though I know a lot of people are on a far lower dose in rheumatology which possibly helps.
Don't know anything about Gabapentin but rejoicing that you've somehow managed to reduce the Pred my fellow long timer, a result. Any idea how/why, is that connected with taking the gabapentin?
Getting off psychotropic medication can be very difficult for some people. Dr Mark Horowitz has done a lot of research into the way many of these drugs work and has recently written guidelines for GP's. My understanding is that the drugs work hyberbolically. This means that a small amount of the drug has a big effect and doubling the dose does not double the effect. This has implications for withdrawal and explains why tapering from a large dose by initially halving may not have many withdrawal effects but when you get to smaller doses you need to go very slowly, ie 10% of previous dose is recommended. And yes, it will take a long time. Mark Horowitz has written a number of medical papers which are available on his website markhorowitz.org
Thankyou for your response. I have now come across Mark Horowitz and bought his book “ Deprescribing Guidelines” which I am ploughing through. Once I have sorted out the Gabapentin, I know at some stage I will have to come off the Zolpidem too which probably won’t be easy either. What with that and the steroids, deprescribing is rather dominant in my life!!!
I took Gabapentin for 2 years until it was decided that I needed to come off it as it was initially prescribed for neuropathic pain in my forearm before I could finally have surgery but during that time it became ineffective as I became tolerant to it but I refused to increase the dose as I knew what was happening and understood how people get hooked on opioids even though Gabapentin is not an opioid.
Although the dose I was taking was no longer addressingg my pain before surgery I continued taking it as it was still effective for sleep (I always took it at bedtime) but a new doc wanted me to come off it as I was also taking Ambien ER for sleep.
It took me about 6 months to be completely come off it from 200 mg (two 100 mg capsules). I won't lie, it was brutal. I think following a tapering schedule like we do for prednisone is a great plan and is really helpful.
Unfortunately, I didn't have a tapering schedule to follow and just did it by the seat of my pants but hopefully with you following a tapering schedule it will be less brutal for you than it was for me. 🙂
I can't help with Gabapentin but you are re-enforcing my worry that my daughter has been put on it! I got badly stuck on 7 of pred but using the DSNS method I have been at 2 for a few months and just going to start another slow reduction. Well done for the progress.
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Has Actemra been helpful for PMR?
Prednisone withdrawal, Pepcid withdrawal? 
Same old question - withdrawal or flare?
appointment 
steroid withdrawal?
