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Hughes Syndrome APS Forum

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Hello I have APS, fibro and bursitis and I have been in pain since my diagnosis in 2001 I have been on and off narcotic pain meds for years

grovet29 profile image
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I was wondering if anyone else takes this kind of medication and if so, have you been on it for years? I was told not to take any anti inflammatory medication because it interacts with the blood thinner as do most meds. I can not take lyrica due to the swelling side effects. Sometimes it helps to know that others suffering from the same things take the same kind of meds.

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grovet29
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MaryF profile image
MaryFAdministrator

Hello there, I take co codimol and limit anti inflams alhtough not on any blood thinners other than aspirin. Lots of people may have ideas for you, on here, do you have a good team around you with the correct expertise? Mary F

Suzypawz profile image
Suzypawz

Hi unfortunetly quite a lot of us on here cannot take anti inflamatories because of blood thinners, but for the pain Tramadol can be good but it doesn't agree with everyone, also Plaquinil for joint pains which some also use on here but you have to be careful with the ammount given because of side effects, but your gp will sort this out for you.

I take both and are ok with them but I will still get bad days where the pains do not seem to go.

Have your docs not suggested any type of drugs to help you with the pain? I've just read up a little for the bursitis & that doesn't sound nice either :(

Hopefully you will get help with these as its not nice to be in pain, all the best & def' keep smiling xx

tassie profile image
tassie

I have nothing to offer about meds but just wanted to say welcome and my thoughts are with you ...pain is no fun at all. I hope you get some relief soon.

paddyandlin profile image
paddyandlin

Hi Grove,

I was in a similer position where i was on narcotics nearlyt all the time until i was put on a drug call Targinact (oxycodone and naloxone) it had the pain killer (opiate) and other drug for conspipation combined it as Lynn said does not help with fibro pain but defo helps with others. It may be worth a look and Bursitis is a real pain i had it in my right knee before i fell ill again the doc took the view of the antibiotics was better to sort it.

Please let us know how you getting on and welcome

Paddy

Renae profile image
Renae

Grove, my experience with fibro and narcotics do not work well together. A side effect of lyrica is swelling, usually it isn't bothersome. Cymbalta is also approved for fibro.

I take antinflammatories such as advil daily and it has never bothered my inr, and the coumadin clinic says it is ok to take it.

I do take pain meds usually daily for lupus and ms pain. I believe doctors who give narcotics for fibro are doing their patients an injustice.

GinaD profile image
GinaD

I am lucky to live near a compounding pharmacist who whips up some topical rubs which help a lot. His favorite concoction is a mix of gabapentane, ketamine and clotidine. This works well when my sciatic pain is acting up. I also asked, and he and my doc agreed to give it a whirl; a naproxen rub as an anti-inflammatory for my arthritic joint. There is some systemic absorption of the NSAID in me, but not much. -- though I'm told the amount of systemic absorption is an individual thing. So I usually hit the naprosyn on the groin pain and the keto-GABA-clon on my back. They help but they are dearly expensive--as in a few hundred dollars a month! --which is why I'm hoping that raising my INR is going to help.

Gina

Lori-Bowers profile image
Lori-Bowers

I have suffered from fibro for many years. I cannot take Lyrica or cymbalta. I usually just grit my teeth through the pain but when I gets really bad I take hydrocodone which is a life saver. Sometimes the pain is so bad along with all the other things I have going on that without it some days I could not function.

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