OK so I've been on warfarin for 9 years and during that time taken loads of ibuprofen and luckily suffered no ill effects but I know I have been playing with fire now (didn't know then though) and hardly touch any as my headaches for which I took them were 80% gone.
However at the grand old age of 51 I am pretty sure I'm in perimeno and getting new different migraines despite INR being OK. I know these are related but haven't got a clue what painkillers to try. I really don't want any which make me drowsy as I'm tired enough right now. Any body got any ideas?
I am planning to ask a pharmacist and trying some soya based supplements but right now my head feels like it did pre warfarin and it is miserable.
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Jade
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The pharmacist will probably ask you to check with the clinic who monitor your warfarin. Most medications will interact with it but ibuprofen is completely out because of the additional risk risk of gastrointestinal bleeding which on warfarin is indeed playing with fire.
You should also be discussing the headaches with your APLS doctor.
Unfortunately I don't have a warfarin clinic monitoring me. They refused to see me when I bought my own machine under Professor Hughes advice. I have self checked and self medicated for 9 years.
My APS doc is Professor Hughes but I am not seeing him until February to keep costs down. I have emailed him though .
Have you had your machine checked to see if it is correctly calibrated and so giving you accurate readings? Mine gets checked every six months. I take paracetamol for pain.
I get mine checked every six months against the machine they use at the warfarin clinic as part of the contract I have with them. So far it has been ok so not sure what happens if it's not. Will ask them next time I have to call with my reading.
No panda I haven't, my GPs have changed several times over the 9 years but I have never been asked to have my machine checked. About 2 years ago I was asked how much warfarin I took and what my INR was for an NHS check.
I guess there is nowhere to get it checked if the clinic refuse to treat me.
I would much prefer to be under some bodies care but I am stuck especially now if warfarin is being withdrawn, I feel the need to stay under the radar even more.
Right, basically (and I know what I'm on about as I trained as a nurse AND worked closely with Haemo & Rheumy),MOST meds will say not 2 take or take with caution if u r on anticoags but in truth, it's generally only 2 do with it interfering with the warfarin's ability 2 do it's job properly. It depends more on u're medical history ie previous strokes, DVTS, abdominal bleeds, kidney function etc and the fact that u're on warfarin, rather than just being on warfarin (if that makes sense, I don't think I've worded that very well!).
I have been on warfarin 4 APS 4 19 years (previous stroke, TIA's, DVT's, internal bleeds blah di blah) & 4 years was petrified of touching ANYTHING that warned about touching whilst on warfarin (in all honesty certain food & drinks will interfere with u're warfarin far more than any med will) until I sat down with a fantastic rheumy & haemo who told me basically what 2 b wary of, why it was 'advisable' not 2 take certain things & what meds I should use with caution. Basically, I take (have taken) CoCodamol, Codeine, Brufen, Morphine (very regularly) Tramadol, Diclofenac, Dihydrocodeine (often). I will double check which others I take as trying 2 remember it all off the top of my head is a bit difficult Obviously, steer clear of anything that has an anticoag effect (aspirin) & yes, I know brufen contains aspirin BUT the haemo told me it was preferable 2 take them in place of the cocodamol. DO remember that we r all different & what is suggested 4 1 is not necessarily suggested 4 another Hope this helps a bit
Hi Sher78, not to unlike yourself I take Brufen as a painkiller,( and many of the other ones mentioned over the years for different things) and my docs are aware of it, I have never been told not to take, I do have stomach pain which is agreed comes partly from the Brufen, but it's the lesser of two evil, the Brufen helps with the other pain! I think you should always consult with your doc, because everyone is different. I have taken pain killers for most of my adult life, along with warfarin, the pain killers for a while where even prescribed! Sarahx
That is very helpful. Professor Hughes knows I take ibuprofen but asked me not to take too many. Plus all my GPs know I do, at one time a GP allowed me to take 600mg 3 times per day. Crazy. I try never to go above 200mg once these days. I would like to feel safe, but paracetamol, though safe does not touch my pain. I reacted badly to plaquenil twice and will not take pills which make me drowsy. What a catch 22 we are all in.
The Diclofenac surprises me. One of my consultants went berserk when he found someone had prescribed me diclofenac pointing out it's potential for causing stomach/ulcers bleeds and that I was in the highest risk group, (over 60) for stomach bleeds on diclofenac and that there was a high risk of fatalities for that group. Haven't touched one since.
Was on tramadol, codeine phosphate , now on Butrans (Norphene/synthetic morphine) also 8 paracetamol every day for many years.
After countless years of never going near aspirin, apart from when I suspected a couple of TIAs, I was put on it for six months after the closure of a hole in the heart.
My understanding is that many drugs can be taken with warfarin, (so long as they are not likely to cause a bleed), if the warning is only bout them effecting the rate of coagulation and IF TAKEN REGULARLY as the effect is to be taken into account and warfarin dose altered accordingly. What we must avoid (as well as anything that might cause bleeding) is the irregular effects, by food or drugs, on our system as these cannot so easily be catered for.
I know, I was quite shocked myself as I have had major abdo & gastro surgery because of clots wrapped around my stomach & intestines (& having done nursing myself) knew all about the stomach bleeds but all the medics have said as long as I don't take it more than a couple of times a week. Like u say, I would've THOUGHT I'd b in the 'High Risk group', but I've had a GP, Haemo & rheumy ok it all separately & sometimes it's the only thing that will work on certain types of pain so I guess I just have 2 trust the medic's judgement :/ But u r very correct Tim, so many other Docs recoil in horror when I tell them I take diclo (they generally recoil in horror at me anyway but there u go )
Can only reiterate what I added to another post. Told to stay clear of ibuprofen (unless recommended by professional in very rare cases) and take Codeine (can't tolerate opiates) or paracetamol if taking Warfarin.
I have been doing my own play with fire thing for 3 years now. I take naproxyn for my arthritis, as well as the warfarin. I always take the naproxyn with food and I drink tons of water (rarely -- as in once a month? maybe?)sodas. So far . . . (knock on wood) I've been OK.
I tried the pain killer route, but none of the ones I tried dulled the pain -- they just made me sleepy. So not only was I in too much pain to go shopping at the grocery store, on the various ".. ols" I tried I I was also too sleepy. Didn't do much to improve my quality of life.
Hip replacement surgery is in 42 days (but whose counting?)
This is my logic too, I always take ibuprofen after food. I too can't tolerate ones which make me drowsy, life is bad enough without being drowsy too. I paracetamol rubbish for my headache and muscle and joint pain.
It's such a dilemma I have been trying to manage without ibuprofen but my pain levels are climbing by the day right now, I'm at my wits end.
When I was first prescribed Warfarin I was told only to take Paracetamol. When I was discharged from hospital I was given a bag with a few boxes of Paracetamol in it. I was surprised after open heart surgery I expected to be in more pain, but I wasn't. My chemist always checks out and I am reminded only to take that. I hop this info is useful.
I was told sporadic usage, or a 1-2 week only duration of Tylenol, approx 1000 mgs daily, would be ok, but not to take Ibuprofen. That's a pity since ibuprofen helps inflammation and Tylenol just helps the pain. Ibuprofen always used to be my savior for pain before my APS diagnosis. I must say, a year on Plaquenil seems to have helped the stiffness but when I get a nasty bout of Reynaud's pain in feet and hands, or the neuralgia pain in my head, Tylenol helps.
And when it's really bad, yes, I've thought "I don't give a shit" and down a few Ibuprofen that works with me better than Tylenol. It's comforting to know there are some other meds available that you fellow APSer's have mentioned in case I can't cope anymore.
Forgot to mention. In UK they like to get you to try other ways to control pain than drugs, or in conjunction with drugs. Some of the teaching can be helpful, very keen on exercising as much as possible and recognising ones limits to know when to stop basically (pacing is the buzzword for it). Sometimes impractical of course but I do recommend those in constant pain think about a referral to a pain clinic. Be warned though they have very long waiting lists in many parts.
If you are taking paracetamol on warfarin it is recommended to take the same dose each day. If you start taking it and then stop your INR can go up or down.
Anything which contain aspirin or ibuprofen can cause ulcers which is very dangerous when on warfarin.
Last time at the the rheumatlogist I asked about Non steroidal anti inflammatories as an alternative to the steroid injection I was discussing with them, and was told "the haematologists wouldn't like that".
Haematologists get very concerned about anything which could cause a bleed.
Why aren't you getting treatment directly for the migraines?
Yes I know haemos panic about that, I saw one who straight away said that my INR should be put down to 2 immediately. I never went back to her again.
The reason I don't have migraine treatment is because in all the years before diagnosis I tried all treatments to no avail but upon beginning warfarin my headaches improved. It's only now at peri menopause that things have changed back.
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Obviously, steer clear of anything that has an anticoag effect (aspirin) & yes, I know brufen contains aspirin BUT the haemo told me it was preferable 2 take them in place of the cocodamol. DO remember that we r all different & what is suggested 4 1 is not necessarily suggested 4 another 
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