LUPUS UK
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Advice on painkillers please?

I’ve had a headache for about 7 weeks now. I insist 1 headache as it just not let up at all. My GP told me that I should stop taking Co-dydramol tablets as my pain medication as I could “become addicted and they are probably causing my headaches”. He gave me a script for Amitriptyline (1 tablet before I go to bed) instead and advised Paracetamol “if I needed” throughout the day.

First, let me say that I used to take 2 Co-dydramol before bed and used to take as/when required in the day. Sometimes (before the headache) I didn’t have any in the day and others, when I was hurting/aching, I would take a couple.

I have Lupus, APS, Hyperthyroidism, Fibromyalgia and an annoying ear (Meniere’s)! In the warm weather I also have Edema. Doc gave me 7 days’ worth of a diuretic to help with the swelling. My last blood test shows Monocytosis and a mildly elevated ESR.

I’ve gone to the GP for help so I’m not discounting his advice, but I’m on my 4th day with only Amitriptyline and Paracetamol and I’m not coping very well; the Paracetamol doesn’t touch the pain and muscle aches throughout the day (aching/painful knees/legs, hands, shoulders, etc.). I also have a Meniscus tear which is not helping either and a mass in my leg which is the fluid leaking from my knee which is quite painful.

I’ve done a bit of research (I googled it) and a codeine headache is a real thing so he could be right, but I think I need something more than Paracetamol during the day. Can you advise other options to codeine please? By the way, due to a stomach bleed I’m not allowed Ibuprofen.

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Hi, sorry you are going through this. I have a friend who had 4 months off work for headache/migraine and after extensive testing it did turn out to be codiene related. She won't touch the stuff now.

I think that your GP is trying to help you by putting you on amitriptyline, however it can take time to work. Other treatments include propranolol and sometimes 15mins of high flow oxygen can help, although I realise that it is not readily available.

One of the best treatments for migraine is 900-1200mg aspirin. It works wonders although isn't very commonly used. Obviously you won't be able to take that as it falls into to the category of an NSAID. It's interesting that your ESR is high. Maybe your GP should look at treating the cause of your headache instead of the symptom itself. Would a short burst of steroids help to reduce any inflammatory process that is going on? The only other suggestion is oramorph instead of codiene. Codiene is a opioids derivative and oramorph is liquid morphine. It's all a bit long winded but some level of the population can tolerate oramorph well but can't break codiene down which results in a build up which can cause a n accumulation of side effects. Years ago in clinical practise we used to shy away from giving people oramorph because it was deemed stronger than codiene. However, new research came out and literally overnight we changed practise and gave doses of oramorph instead of codiene. For example, with me, if I take codiene I am pretty much zonked out for 12 hours with drowsiness, sleep and a low BP. But with oramorph I can function, my BP doesn't drop and it gets rid of my pain. It's all to do with some people having a certain enzyme to break the codiene down or not. Your GP is correct about codiene in that it can be addictive and that is the same for oramorph so both should be used and monitored with caution.

My gut feeling is that maybe as your inflammatory markers are up you need to get the inflammation down and that might result in your headache going. Maybe a short burst of pred can help?

Other than that it's just the usual things of checking your BP isn't too high . Sometimes caffeine can help a bad headache, I usually avoid the stuff but a strong coffee for a headache does help me.

No other advise to give, sorry. I hope it gets better soon.

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Thanks HP. I'm on pred daily (2.5mg so low dose) together with hydroxychloroquine (200-400mg), thyroxine (125mg), asprin (100mg) & daily Desunin (vit d). The more I hear about codeine the worse it appears but I guess it serves a purpose. I need middle ground.

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Hello,

Happytulip has already exceeded my pharmacological knowledge, so I have only a little to add. I had a problem with chronic headache for years, and the same issue with having to avoid NSAIDs due to gastritis. Added to that, 4 years ago, I shattered my femur and have chronic pain from that injury. Through trial and error, I seem to have found a reasonable regime. For my UCTD I take hydroxy and low dose prednisolone, and for pain I take a single dose of Zapain (500/30 paracetamol/codeine) and 20mg amitriptyline at bedtime. During the day, I manage pain with ice packs or cold flannels.

This has got me to a place where my headaches are less frequent and less persistent (touch wood). But it is really tricky to find the right balance when the options for analgesia are really quite limited.

Hope you find something that works anyway X

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Poor you. 2 things spring to mind: could your knee problem and meniscal tear be knocking your gait a bit which in turn might be having a knock-on with your spine and neck? I've had this kind of thing before but I've also had a lupus headache that was with me when I went to sleep at night and still there when I awoke each morning so I know how you feel.

My GP gave me very low dose amytriptilline when I had a headache (due to whiplash when I fell out of the loft . . .) - it knocked me stupid with fatigue so I gave up on it. My GP was very clear at the outset that this was the most basic of this family of drug and that there are many more she could prescribe so please don't suffer any longer - go back and demand the next level. And the next. And the next ....

I hope you're feeling better soon xxx

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Hi , I had horrendous headaches for 6 months following surgery on my head to remove an accoustic neuroma , I was in tears they were that bad . Like you I can't take NSAIDs because I have lupus nephritis . I think at the time I was on tramadol but I have always found that HEADEX EXTRA work best for headaches , they contain paracetamol and caffeine , it is true that caffeine helps I drank black coffee aswell . I also use tiger balm rubbed into my forehead that helps a great deal , also ice packs do help , I have a gel eye mask which I keep in the freezer permanently I put that across my forehead when lying down . Codeine can cause bowel problems and so you should definitely avoid that . Tiger Balm can be bought from boots it's about £5 a jar , don't buy cheaper versions they sell in pound shops they are not the same and don't work . I hope you find something that helps and definitely ask your GP to look into what could be causing this especially if they don't stop when you stop taking codeine .

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Hi Nat1969,

We are not medically trained here therefore we are unable to advise you on what medication may be suitable to take as an alternative to codeine. We published an article on our blog discussing pain management, the article contains helpful tips and information that I hope will be useful; lupusuk.org.uk/pain-managem...

Headaches are common in lupus. In some patients a history of headches going back to their early teens is a feature of the disease. They may be a part of lupus itself or may be associated with a clotting (antiphospholipid) syndrome. A systematic search for known causes should be carried out including blood pressure checking and, very important, an examination of the blood for antiphospholid antibodies and ultimately, if indicated, a brain scan. This information is included in our factsheet ‘LUPUS: and the Brain’; lupusuk.org.uk/wp-content/u...

Please let us know how you get on, all the best

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Hi ,I can't advise on painmeds ,but you can get rebound headache especially with codeine tabs. I'm taking magnesium (oceanpure) from natural marine salts one at night and one with breakfast .no further headaches.all the best Elfie

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