Update on paracetamol and long term use.

[Jules13]

So my post a few days ago caused quite a response. And I took everyone’s advice and went back to my GP to review medications and pain relief.

I told my doctor exactly what I told my RA nurse, that I’d been taking paracetamol for over 10 years, every day. My GP had the same reaction as my RA nurse... concerned look, pinched face, and a gasp. For goodness sake.

She agreed that it’s likely I have MOH (medication overuse headache) and wants me to slowly reduce and then stop taking the paracetamol. But of course, I then burst into tears saying “so what do I do about pain?” She read through my notes, looked all the things I currently take, and have taken in the past, what pain meds haven’t worked and what I can’t take because of my asthma.

And she decided to prescribe Gabapentin, at the lowest dose possible. She said that my recent diagnosis of Fibromyalgia (on top of the RA) is a real illness and that this drug could possibly help with the pain and sleep. But of course it might be as awful as my reaction to the Amitriptylene. So I shall let you know. X

[Ruth12345]

Hi. I have been flowing this closely as been on paracetamol for 2.5yrs and just started with headache. I will look forward to hearing how you get on. I will say ive started cbd oil and within a few hrs my headache was not as bad and has continued that way. Thank you for starting this and previous thread.

[Jules13 in reply to Ruth12345]

I think paracetamol is fine to take over shorter periods, or longer periods but not everyday, it's just I got into a habit and took it with my vitamins like they were nothing. 10 years later and realising that you've done that is quite shocking. I was shocked at myself. But then when you realise I've had a permanent headache for nearly 30 years it makes you re-assess everything. x

[Gigi71]

Just to say Jules, I started Gabapentin just before Christmas, 100mg and took that dose for a while, with severe canal stenosis and the vertebrae on L4 has collapsed onto L5 so I was in incredible pain, I have increased up to 1200mg and have to say it definitely helps, as far as I'm aware no side effects, I absolutely couldn't 't get on with Amitripyiline. I'm sure it helps with sleep too. Please be aware it's being re classed as a class C drug from the 1 st of April and you will only be able to get 28 days supply at a time, I have my meds electronically sent to my chemist, but this has to be a paper prescription, I was told this morning my chemist can pick this up and dispense. All the best X

[Jules13 in reply to Gigi71]

Thanks Gigi. I'm quite sensitive to this kind of drug and the Amitriptyline floored me. So I was worried this would do the same thing. I was going to wait to take it until the weekend but I was in so much pain last night, that I thought, what the hell, and took it.

I slept quite soundly and slept until 7am which is a miracle, as I usually only sleep until 6am. It could have been because I was exhausted anyway but we shall see. I did wake up with that jet lag feeling again though.. slightly woozy, but not nearly as bad as the Amitriptyline x

[Gigi71 in reply to Jules13]

Hopefully you will benifit from this drug for pain the same as me, we are all different though, slowly does it. I took 100mg for about 3 weeks didn't touch the pain, but I got used to it. The first dose made me woozy but the second was better, I increased up to 1200mg taking 3 times a day, the morning dose is 2x 300mg afternoon 1x300mg and the same in the evening. Each increase made me woozy but didn't last more than a day, except when I took the first 600mg that was a couple of days. I can go up to 1800mg, but this dose helps a lot so staying with it for now. I hear good and bad reports on Pregabilin, I was going to ask to go on this, but not yet. I am seeing the Neurosurgeon on the 13th March to see if an op possible, they didn't hold out much hope. I hope this helps you Jules. Take care. X

[NeonkittyUK]

Hi, is it possible you could talk to the doc and rheumy about transdermal patches if you don't want to take oral painkillers anymore although they have their own issues too. Being careful not to promote them here .. There's something I'm certainly not doing as I'm wanting to reduce mine now but I did not react well with oral painkillers long term and I had many on and off years on paracetamol/panadol between failed meds and new ones starting.

[Jules13 in reply to NeonkittyUK]

Have tried those and they did nothing.

In fact I've tried everything for pain... Tramadol, Diclofenic, Codeine, Transdermal patches, even an experiment with chilli infusions at my hospital in London (horrendous). My asthma prevents me taking things like Naproxen etc because it triggers wheezing.

I have quite a tricky pain history... the headache pain is separate from all my RA pain. And my nerve pain from knee surgery is different again. I also have early onset osteoarthritis so that pain is different again. 3 different types of pain that cant really be treated the same way.

The knee pain is horrendous though and I have cortisone injects under my plastic kneecap to help that every 4 months. I'm sure that also helps with the RA pain by default. Paracetamol helped my osteo arthritis pain (I thought) but nothing really helped the headaches. So my doctor is basically cleaning out my system from all pain medication and seeing what happens.

She knows it's going to be a very uncomfortable few weeks but it's the only way to see what's really going on. We blot out so much with pills and painkillers that sometimes we need to have a deep clean. I do not suggest this to anyone. It is under the complete direction of my GP. With regular blood tests to check.

[helixhelix]

How nice to have a GP that takes the time to listen and think. Hope this plan works out for you.

[Jules13 in reply to helixhelix]

I know. It's a GP that is new in my practice and she was lovely.

[Shalf]

Glad you went to GP Jules.

I was prescribed Gabapentin for Fibro too. I thought it was working at first but unfortunately the symptoms were still there. I do get relief from hot steam. Hope it helps you. x

[Jules13 in reply to Shalf]

I just need to clean myself of all pain meds and start again. I have a steam every week too and baths with epsom salts. I also had all try blood levels checked yesterday.... Vitamin B12, magnesium, iron, calcium, phosphates... plus my liver and kidney function as normal. So we will see if I have any deficiencies.

[rab1874]

Yes it’s nice to have a go that listens and dies something,hope the new drug works for you xxx

[Hidden]

That’s is nice your GP is listening and in agreement with you 💐

[happytulip]

Thanks for the update Jules. I didn't get on with amitryptyline at all but had a good response to gabapentin. In the end I was switched to pregablin which seems more effective but gabapentin was good.

Good luck with it!

[Jules13 in reply to happytulip]

That's really interesting... you know why Gabapentin is prescribed over Pregablin? Cost. Pregablin (or Lyrica as it's sometimes known) is 5 times the cost of Gabapentin. But Pregablin seems to be a better form of a similar base drug. Less side effects and better absorption.

So I could ask for it and see but I think my GP (and anyone on the NHS) is probably advised to start with the cheaper medication. I'm not surprised. I don't want to cost the NHS more than I am already!

[happytulip in reply to Jules13]

I was only switched to pregablin as my disease activity was increasing but couldn't tolerate any DMARDs and biologicals arent an option for me at the moment. I actually had less side effects with gabapentin, some effects were actually quite fun....I got the giggles big time with gabapentin!

I hope it suits you, but you are right because of cost they put you on gabapentin first then step up to pregablin.

What I was wondering this morning is how you are getting on with your headache and paracetamol issue? I know its early days but I'm keen to find out how you get on.

I have a persistent low grade headache very often but I've been told that it is down to one of my AI diseases and if I don't take it I am worse systemically but I am following your story with interest. Unfortunately, I can't take NSAIDs.

[Angels-delight]

I was told that paracetamol is the same as Tylenol that they have the same ingredients. I use to take paracetamol when I lived in the UK and I find it works better than Tylenol. I live in Canada and unable to get Paracetamol.