So whilst I await further test results and my second opinion referral to a rheumy who specialises in seronegative, i've been told I definitely have chronic neuropahy resulting form my spinal injury following my snowboarding accident.
I went to the pain clinic on Friday and was told Tapentadol was my best bet. I was told I would never be pain free, but that I might expect to see a 50% improvement. This is a new drug, specifically designed to treat chronic pain after spinal injury, but it's pretty nasty stuff.
It's a controlled substance, has some horrendous potential allergic reaction, side and withdrawal effects and is highly addictive (it is similar to Morphine), but apparently more effective for this kind of pain.
Apart from possible side effects, I never expected taking a new pain medication would cause my symptoms to be even worse though, and i'm pretty freaked out and worried.
I got my partner to read all the side effects information and was told by my specialist I absolutely had to read the important information section. I let my partner read the rest and after I took my first dose, reported to him the plethora of strange sensations, pains and so on I was getting, some, but not all of which were reported in the known side effects, both common and uncommon.
Since starting these meds, my pain levels have sky rocketed. My joints in particular are much, much more painful and i've been flaring between a 5 and a 9 for the past 36 hours. The medicine does not need time to build in the system and works effectively after just 30 minutes from the first dose, however anyone taking it should wait 2 weeks before assessing if it has indeed helped bring down the overall level of pain.
Side effects for me so far:
Agitation/restlessness
Confusion and fuzzy head
Stabbing pain in eyes
Extremely dry, tired eyes
insomnia (both falling to sleep and early waking)
Clammy hands
Pins and needles in back of head and neck
Extreme sense of pressure across front of head and sinus
Suddenly getting red hot
Uncontrollable muscle twitches/spasms
On top of this my pain is much higher than usual. The joint pain is more intense and i've got aching pulsing sensations in my fingers and in my muscles (never had muscle pains/aches before).
Have any of you taken medication that has made your pain (original pain, not side effects) much worse in the short term?
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ShellyWelly
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In general gor me and only my personal experience my pain is worse after biologicals but not after pain relief. Your problems on the meds sound severe and I would call 111 urgently or if you prefer the hospital on Monday but for me the first option and ask them to contact a Rheumy for advice got you . Hope you get sorted soon sweetie xx
That's interesting allanah thank you. All of the side effects i'm getting aren't constant, so i'm coping OK. After about 10 minutes I start getting a sucession of sensations/pains which generally ease off after about 3 hours....that gives me a couple of hours feeling a little better before I have to take the next dose.
My rheumy didn't prescribe these, it was the seperate pain management clinic for my neuro pain. I've got to see my GP for monitoring in 2 weeks time, but i'm at the surgery for a blood test tomorrow, so i'll ask for some advice then I think.
Not me but my h. I hope your prescriber also told you that you must absolutely not drink alcohol whilst taking tapentadol. It's been around a while now, licenced in the UK in 2011 & another of the ones I was offered but refused when I had a full pain med review, I opted for BuTrans transdermal hourly release patches (buprenorphine). Don't you just love it when a new med is introduced & med profs expect you to carry on for a fortnight when such reactions happen. With some meds it does happen but how do we know if they're to be expected before wearing off & it starts working? I take it it's been introduced at a low dose intending to increase if you find it helps? If your symptoms increase tomorrow I'd take the packet & seek help at A&E.
Thank you, yes, I read about the alcohol thing after and wanted to cry. I don't know your reasons, but I really don't blame you for refusing it.
The potential side effects, allergic reaction, addiction and withdrawal effects are all very scary, but I figured i'd rather try something new designed specifically for neuro pain, rather than technically off-label use for a an anti convulsant or anti psychotic. The research looks like it was very effective for lots of people and my pain consultant seemed very confident it was the best thing for me. It was a very difficult decision. I hate taking crap like this. Pain killers as an when required and my nightly Ami is fine, but taking a class A drug is scary.
I'm going to have a read about the BuTrans patches. How do you find them?
There is so little information I have no idea how long I should give it really on these. 2 weeks seems like a very long time to be suffering with all of these side effects which are making me even less able and more poorly and in pain than I previously was!
I have been started off low 100mg split between 2 daily doses I've got a blood test booked for tomorrow evening after work, so i'll at least have a quick chat to the nurse and get her thoughts.
I had butrans patches, not for me at all, I was out of it even on low doses . However I know people who have had great benefit.
Does HU have a neuro site too so you could get even more info as well as here. If so I bet they will have advice too? Ps that didn't mean swap it meant you need more info on a particular neuro problem at the same time as here.
I c&p'd a comparison link of buprenorphine v tapentadol but it won't open here. I can read so I'll try again if you want to try to open it manually, if still no joy I'll copy the text on a pm. It's a US user site but it's worth a look.
My GP was a friend before my doctor & I've also worked with her (Ass't PM before moving to Spain) so she knows my feelings about some of the strong drugs & when they're necessary or, more to the point, not! When I had my pain relief review she had a list prepared of the ones she thought I'd dismiss which I scanned & the next was BuTrans. She was convincing enough stating she would start me off on the lowest dose, 5mcg/h, & would monitor me monthly until I was settled. The first couple of days I was woozy on & off more or less hourly as the drug released but nothing concerning & I had some relief for a week then it became less effective. Last week she upped it to 10mcg/h & last night had my first full nights sleep for ages. It's covering the pain quite well presently so I'll see how the next few weeks pan out. At the same appointment she also put ami on repeat for cervicogenic headaches which the buprenorphine wasn't touching & that's certainly working, only had slight tension & far more movement as it's relaxed my neck musculature.
If you're still feeling as you have over the weekend you must not drive. If you cause an accident, are involved in one or are stopped by the police for some reason there could be serious consequences.I wouldn't risk going to work anyway until you speak to the person who prescribed it, failing that your GP. You don't need reminding it's a strong drug & with the symptoms you write about you would be breaking the law going behind the wheel. Common sense, really if you think about it! I wouldn't just stop taking it either, even after not being it long, without the ok from a medical professional.
Thanks for all of this information and sorry I missed this. I've had an eventful few days!
I ended up being rushed to hospital on Sunday, and the drs think it was an allergic reaction to the Tapentadol. On top of all the side effects i'd already reported, on Sunday, I took it and felt weirldy fine for several hours and then all of sudden I felt really sick, my vision went blurry, i was finding it hard to breath, parathesia down the right side of my head and arm and a rash all over my arm. An ambulance was called and I spent several hours in hospital where they told me to definitely not take any more Tapentadol.
It does concern me that doctors are so contrary about prescribing this kind of thing, with no advice or warnings whatsoever apart from what you read yourself. He didn't warn me I might need time off work or anything and that makes me angry.
Anyway, after less than 48 hours on it, i'm now off it and un-medicated. Thank fully i'm currently not flaring, but I strongly feel they are agressively treating something that accounts for only a tiny portion of my problems and has no effect on the disability my joints are causing.
Now at least I understand the difference between nerve pain and all the others pains/aches I have. My pain questionaire revealed high pain levels, which he wrongly took to mean that was the nerve pain when in effect I can cope with that, its the joint pain that I can't cope with and is worst for me. *sigh*
Thanks for the advice, I really appreciate it. On a diferent note, i'm really pleased to hear that the BuTrans is working for you, I hope it remains effective and you get continued/more relief! Shell xx
Oh what a weekend, it must have scared th bejesus out of you. At least you're off them now & should be out of your system. And there was you thinking you'd be ok to drive to work! Been there with this type of med with my h & the reasons for swerving them & my GP understanding & starting me straight onto BuTrans. Conversely she takes time to make sure her patients fully understand the meds she prescribes AND tells you to fully read the patient info leaflet though I fear she's in the minority.
Yeah, it would be nice if they could have told me i'd potentially need time off etc. he acted like he was prescribing me paracetamol. I don't know what happens next.
My next routine appointment with my GP outside of work hours is 2 weeks away. I called the pain consultant's secretary on Monday and left a message to let him know what had happened. I've not heard anything back so I really am totally in the dark right now.
I hate having to continually put work and earning money ahead of my health. It's a horrible situation and something i'd never even considered when I first got poorly.
What the neck has happened within the NHS when a patient is basically disregarded having had need for a 999 call as a result of a reaction to meds. We're advised to report such things yet you received no support when you did. Have you not even had acknowledgement from his Secretary? These are powerful drugs & as such, in my view & experience, need careful monitoring, particularly if you've not had anything of this class before & formed a good part of my horror of needing them myself, though fortunately I've been ok with mine. Mini rant over but It will be interesting to hear of your GP's take on this event.
My h (& I) learned the hard way that putting work before health concerns isn't viable so I'm obviously not best placed to comment but save to say but for the timely annual medical he had & sent straight to hospital it's unlikely he'd still be here now. At times like these we have to make difficult choices & his was to resign his demanding position in order to regain his health. Unfortunately the damage was done & now needs surgery but had he not made the decision to leave & change course it could have been a very different story.
It's less likely you'll have recurring problems having only taken tapentadol a few days so that's a positive & I hope the investigations needed to determine just what is causing your neuropathy & joint pain are expedited now.
Thanks for your understanding. I've not had any form of contact back, so all I can do I wait 2 weeks until I can see my GP.
I agree, we are told to take certain side effects seriously, but given no support or advice when we do!
Sorry your husband had to learn the hard way
xxx
Gosh that does sound really awful for you re those side effects. I'm struggling with Gaberpebtin too but not in that league - just no change to the neuro pain and a lot of dizziness and sense of being crushed. I too was told by my GP to give it a few weeks and get up to the right dose before deciding whether it is the drug for me. My GP has gone on holiday now too
Gosh that does sound really awful for you re those side effects. I'm struggling with Gaberpebtin too but not in that league - just no change to the neuro pain and a lot of dizziness and sense of being crushed. I too was told by my GP to give it a few weeks and get up to the right dose before deciding whether it is the drug for me. My GP has gone on holiday now!
What a shame when you www doing so well in your last post.
Sorry to hear your are struggling with Gabapentin Twitchy The dizziness is horrible isn't it? The crushing feeling sounds awful too. As mine is meant to work immediately, i'm scared of getting my body used to it, then having to taper to come off and suffer withdrawal effects whilst tapering off, which means I'll feel rubbish for longer.
Sorry to hear your GP is on holiday now, it might be worth you ringing to surgery and asking for advice in his/her absence to report on the fact it's had no effect on your pain.
It's all swings and roundabouts isn't it? I'm really scared about having to drive to work tomorrow feeling off my head and so dizzy. I had almost 6 full days of feeling relatively good and really had hoped i'd stay that way, not perfect, but much better and pain levels I was easily coping with, then BAM everything goes painfully pear shaped again!
I hope your side effects settle soon and you start to see some benefits xx
You can't possibly drive feeling that way Shelly - it would be like drink driving! You should stop it regardless. I'm not sure if this is possible with your drug - it isn't with mine apparently. Surgery is closed tomorrow so I would have to phone NHS 24 and then that would be a case of weaning back off it I'm guessing. GP would say I should have stuck to our plan as might be worth it in the end when/if my body acclimatises.
Your drug sounds like a nightmare. I work at home mostly. My youngest would ideally love me to drive him down to look at art college open day in Edinburgh on Friday but obviously this isn't an option right now and hubby has work. He will have to go on his own by train which makes me sad. Ah well. X
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