Because of a very careless mistake my primary care physician' staff made and then my pharmacy made I was without gabapentin for six days. Gabapentin which I take at 900 mgs daily is a neurological drug that works so well with my symptoms of shakiness, that I don't appreciate it as much as I should. I am also on taking 2.6 mgs, of prednisone, The bottom fell out of my life. My doctor didn't respond to my call for a refill of gabapentin before the weekend. By Sunday I was in such a state that my husband took me to Urgent Care. It was gabapentin withdrawal. I am doing much better today having taken 300 mgs yesterday and 600 today, Tomorrow I will be at full dosage. But my point is that all through the chills, fever, and some delirious moments there was no PMR pain, none at all, and it was what I was most dreading. I may be able to get back to my normal routine of exercise and working in my art studio. Thanks to you all for your support and great hints, Has anyone else had this problem?
Near disaster with gabapentin withdrawal - PMRGCAuk
Near disaster with gabapentin withdrawal
Not with that drug but I regularly detox from sleeping pills, tramadol and Amitriptyline. I don't do them all at once I have also missed 4 days of cellcept/dmard for 2 periods of 4 days. I did this at Easter but was fine despite panicking...though I did increase pred from 6mg to 7mg just in case.
The tramadol and Amitriptyline had terrible withdrawal. Chills, fevers, feeling lightheaded, usually pain and nausea. Once I reintroduced and got back to a proper or near proper dose they felt ok and worked again. I usually found they worked better for a bit. I haven't daren't do a detox since pmr as like you i expected PMR symptoms..
I have taken amitriptyline for a number of years for depression and for some reason didnt order them on my regular 4 week cycle and ran out last night. It was the worst night ever and the sleep I did get was punctuated with very vivid dreams!! I got up this morning feeling very odd. Luckily my normally stroppy gp surgery agreed to do an urgent prescription and OH is collecting it now.
Good you are getting them. I missed off my prescription once and hadn't realised it's power, was only at 20mg then. I have 4 boxes of 10mg as I had just picked up my prescription when they took me off it. I had a very wobbly month emotionally waiting for new one to kick in - duloxetine replaced Amitriptyline and citalapram and it wasn't good.
I take 150mg at night so last night was a very odd experience and I was wide awake at 3am.
Omg that would be VERY disconcerting. That's a proper dose not a baby dose like i had to relax muscles. I was only at 40mg of it. The citalapram was reduced to 10mg but it did help keep anxiety down for 20yrs.
I am pleased you are almost back on track. My husband takes 2100mg per day of gabapentin for pain due to having previously broken his back and having neuro surgery on it so I was very interested to hear about your withdrawal problems. Like you he probably doesn't appreciate it enough but thank you for alerting me to the symptoms of withdrawal. Hopefully you will be soon back up to speed.x
I was not warned about withdrawal from gabapentin--had to find out the hard way. My best to your husband and may it never happen to him! Thanks.
Why do doctors just assume you either wont suffer withdrawal or that you dobt need to know the symptoms. OH was never warned about it either. Makes me mad and as hes been on it for 9 years I dread to think what state he would be in.
A lot seem utterly oblivious it is a potential problem. I think they sleep through their pharmacology lectures.
I thought I was fairly up to date with side effects etc but never dreamt the withdrawal could be so serious
I agree, We should be warned. And then someone should be--well, nevermind--there are some good doctors out there.
I have a very good gp within the group of doctors but it sometimes is pot luck with who you get and how up to date they are about anything.
That's an awful position to be in .
I was on Garbepentin like you , but found little relief with it at a level I could take it before the zombie effect like Dad Cue ( 600mg a day was my limit) , and the way it increased the symptoms involved in my Sicca Syndrome and IBS .
They swapped me to Pregbalin , eventually last year , even though this had been suggested by the Pain Clinic five years before , but was ignored by my GP because of costs.
Garbepentin and Pregbalin are virtually the same but Pretty has less side effects on the stomach and dryness . You also take less mg for the same effect as Garbepentin but they don't prescribe it as a first line drug because it is more expensive .
Although I still can't take a level high enough before the zombie effect comes in , especially at the moment with the GCA/ PMR , I do find it better .
When they swapped the medications though , they didn't bother to tell me to taper down the Garbepentin I had to ask remembering that if I had to taper up on the drug in the first place that it probably meant I would need to wean myself off it too.
Thank goodness I realised this , when I asked they finally told me that I would obviously have to have a couple of painful weeks while I tapered off Garb , spent two days on nothing then tapered up on Preg.
They said it in a very matter of fact way , like I should have just realised that myself. This is the problem really. The doctors either don't know of the effects of the ones that do just assume that you the patient already knows.
I luckily do remember that no matter what drug or supplement you are on , even paracetamol or vitamins and iron , you should taper up the dose and then taper down , unless it must be stopped because of a severe allergic reaction .
I also know that sometimes , especially with the drugs that they will only prescribe rigidly in 28 day cycles like Methotrexate etc. the GP or pharmacy will often leave you in the lurch.
Its always best to keep an eye on your stock and when you've four days left , check that you won't get stuck because of their opening times at a surgery. If your prescription day hits a weekend , or you are on holiday and lose meds, and you could be left without call them and remind them of what will happen if you go with no medication.
They should at least give you a prescription from the GP or out of hours for a few days to get you through.
But , if you cannot get hold of this because you are stuck in the middle of nowhere , the best plan is too divide what you have left so that you take at least some dose per day , decreasing the amount in a taper then taper up again after your script is filled for gabepentin or others drugs with high withdrawal effects .
It is not a great solution but can cause less severe issues when you are stuck.
Lovely to see that there was some light to your story by your not having a flare and that it has made you feel more confident about getting back in the studio. At least there was that silver lining and we got to see a piece of your beautiful work , even if it was attached to a sad story.
Take care xx
I really didnt know that the withdrawal effects were so bad. OH has a huge surplus of gabapentin luckily and it is reordered every 28 days which should make sure he doesnt ever run out. You would think sk.eone would have mentioned it in 9 years on the drug and because of the amount he takes!
Thanks, Blearyeyed. I hope never to see repeated the mistake made both by the pharmacy and then by my doctor. I am today finally on the full prescription dosage. I am still not a 100%, but near to it. I think I will go out to the studio this afternoon--such a lovely day.
Always talk to your pharmacist. I really don't believe doctors know that much about the drugs prescribed.
Yes, I went through Gabapentin withdrawal 3 years ago. It was horrible but had to be done as the combination of drugs I was on was making me very poorly. I went cold turkey but I was only on 300mgs. I remember a few days of agony, fatigue, feeling sick, chills and sore tum.
I was on 30mg of Pred at the time for PMR. So I didn't get the PMR pain.
Got that down to 6mg now which is keeping the PMR under control.
On different drugs for my other issues now and hope I don't have to go through that again.
So there is hope at the end of this tunnel of drugs? I felt better yesterday and not to well today. Hard days coming along. Thanks!
There's always hope , you have just been very unlucky that you didn't get the right advice about tapering off any sort of drug or supplements to stop withdrawal effects.
Things should improve in a few days and I suppose the silver lining is that at least you will know what to do in the future and you won't feel so bad.
Take care x
Out of interest , what are your other issues ( if it isn't too personal ) and what drugs did they change you on too?
Was it because of side effects or did you have to change them because they weren't suitable to use with the steroids ?
It would be useful I am sure to get the info if you don't mind for others on the forum with similar conditions and PMR.
No I don't mind at all. Here goes!
I was on co-proximol, gabapentin, fluoxitine and diclofenac. Plus pantoprazole, gaviscon and buscopan. When I was first diagnosed I was on 30mg steroids but the combined drugs were affecting my digestive system and making me dizzy and very very fatigued and lethargic. Also became even more depressed.
Currently I am on Sertraline, Amitriptyline, Tapentadol, paracetamol and prednisolone only 6mg now. I also have lidocaine patches, ranitidine, Buscopan and peptac.
My diagnosis was PMR (didn't take steroids for a few years then had to as couldn't get out of bed). Osteoarthritis in both knees, both shoulders and degenerative disc disease too. Also recurrent depression (Seasonal) and IBS.
Currently my diagnosis is under review as my gp and rheumy think that possibly I have another auto immune condition.
I have just finished going through tests to rule out crohns, celiac disease or colitis, and my diagnosis is IBS and possibly SIBO. Since the colonoscopy and by following the FODMAP diet I am back in control and asymptotic. So no further action there unless it all kicks off again.
Since February a new condition has developed, superficial thromboplebitis in both legs and arms. I never knew your veins could hurt up until then.
So when I go to see rheumy in June I fully expect him to be looking at Sjogren's, Behcets, Lupus or Ankylosing Spondylitis!
My rheumy thinks that the 30mg of steroids has hidden a lot of symptoms which have started to show themselves as I have reduced. I have stayed at 6mg for 3 months as I was supposed to see rheumy in March but been cancelled twice and next appointment is early June.
I am off to see a friend in France tomorrow for two weeks holiday with my OH. I have one case full of meds, creams and potions a walking pharmacy!
Well Blearyeyed you did ask 
x
You sound like me , if we were horses they'd shoot us!😋😂😂😂
I am currently be assessed ( it's taking a year!!!) for Behcets after having Coeliac , Crohn's , Sjorgrens and Lupus dismissed.
They have added to my woes by adding Fibro and Degenerative Joint Hypermobility Disorder , probable Pots and this is likely to upscaled to EDS ( either with Behcets or without). They are assuming that it is the connective tissue and autoimmune issues that may have caused me to get GCA then PMR early ( I'm 48).
Do you have skin issues and ulcers as well?
It's a long painful journey with it all , and getting the new drug balances right is an uphill struggle that causes alot of pain in itself , pain and side effects from changing your pills around , or finding pills don't work together , has been the worst part for me. As the pain of getting the drugs right brings on flares of everything. But hopefully , just a little longer for both of us and we will be sorted out to get the quality of life we deserve .
I was changed to Pregbalin from Gabapentin specifically because , although virtually the same drug , it causes less gastric and dryness issues , and the side effects have been less , but it was a nightmare getting the GP to change it as Preg is much more expensive than Gabapentin.
There are many drugs that they have tried on me that did not make any significant difference so I do feel like I was on a rollercoaster for months , tapering one drug after another , up then down.
Luckily , I asked the right questions though because they didn't tell me about the heavy withdrawal without a taper automatically. I have noticed now however that unlike the Gabapentin pamphlet the Preg does recommend tapering off it in the box leaflet.
I think all drugs should be given to you with this helpful advice.
Keep in touch and let me know how your diagnosis journey goes xx
Thanks, Blearyeyed! You do have quite a list to be checked out. The gabapentin is for muscle jerkiness at night that had in the past prevented me from sleeping well. With the gaba, I have very little of it. And I have PMR and four or five auto-immune diseases. Most of which keep pretty quiet most of the time. I am usually able to enjoy life very much. I hope you are too.
And I will pay more attention to to the leaflets that come with new meds. But no one here, even the nurses, knew about the gabapentin problem. They did skip that day in nursing school. I am just glad the PA looked it up and confirmed.
Time for me to go read!
My best to you!
Twins!
Yes to the skin issues, dry skin, slow to heal, bruises that appear for no reason. Flushing, redness around neck and hives in the heat.
I have had some terrible mouth ulcers, one of which made my dentist panic and refer me to oral surgeon.
Also nosebleeds and sores in the nose. Dry eyes when not even hayfever season.
Hearing also was affected, gp thinks by inflammation of eustasian tubes.
All this over 3 years.
I was 46 when first diagnosed with "mild PMR".
By 54 " mild" had turned ferocious and steroids it had to be. 70% better in 24 hours when put on 30mg.
Despite everything I have remained positive. My GP has been very supportive as has my Rheumy when I get to see him.
At the moment I am not doing too bad really. I need to be careful how I use my spoons and get plenty of rest. Hoping to have a relaxing holiday 
xxx
The Behcets Disease could well be an option because of the ENT issues and ulcers.
Take photos of any ulcers , skin issues or bruises you get in the next few weeks
( I know it sounds horrible ) if you have any previous photos or records of ulcers and other skin things from the GP or dentist take them with you. They all help with the diagnosis or send them down the right route for tests to speed up the process.
Write a full history of any significant medical issues you have had . Surgeries , injuries , recurring infections , gynae and gastro issues , ulcers , joint pain etc. This will help too. Do you or have you ever been diagnosed with hypermobility?
As connective tissue disorders like Ehlers Danlos may also need to be investigated for you , just like me too.
Keep in touch , PM me if you want. Hugs Bee x
I take photos of everything. Mainly because without mirrors big enough or someone to look I have had to use the camera and video to look closely. I often think if anyone hacks my pictures they will upchuck and regret it forever. 😉
I know my gallery on my tablet even fills me with fear ,
Marigolds , Unicorn Welly in a tree , apthous stomatis ulcer , view of the sea , bulging swollen eyelids....😂😂😂😂
" Grandma " ( my youngest daughter) had to take some photos of burst blood vessels in my eye and had forgotten to delete them from her phone. She was sat on the sofa looking something up at the weekend then suddenly went " argh!" , jumped back in the seat and threw the phone on a cushion .
" What the heck was that?" says Me , holding my heart.
" Pictures of your flipping pokey eyes!!"
One of the few funny moments of going through this health hell.
😂😂😂
Hi,
So pleased you are getting "there" .
Gabapentin didn't agree with me, I had been taking to for only two months. I felt so unwell on it. Finally, I was so desperate I just stopped it, oh dear... For at least a week I was really unwell with withdrawal sweats, itching, burning with pain inside my body, so cold, couldn't sleep much, unable to think or make decisions. I was under such a dark cloud. Two weeks on, I think, I'm starting to recover. I saw my GP this morning, she said, yes, you have experienced withdrawal symptoms, one should reduce slowly with this medication...
Hello Marion7.
Yes, it should have been more gradual. Too bad that it wasn't. This is my first day on a full dose, so, hopefully, more relief is on its way. Thanks for your story.
My own GP didn't know that gabapentin withdrawal could be so hard on a person. I don't have any zombie effects, so I am lucky. And it almost closes down all the night time jerking.
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