PAIN RELIEF AND APS

[Jetticat]

I was just wondering how many people with APS such as myself who takes large amounts of warfarin, have been advised that they are limited with any pain relief especially anti inflammatory meds because of the contradiction with the warfarin? Any suggestions other than paracetamol?

[Lure2]

Hi and welcome!

How much warfarin we take is very individual but what is important is what therapeutic range your Specialist has told you to be within. I also wonder what sort of pain you have as if we are not enough (high enough with the INR) anticoagulated we can have different sorts of symptoms with pain. Most of us need an INR of 3.5 - 4.0 to feel better.

You do not write anything about your APS and yourself so it can be difficult to tell you the interactions perhaps. Many here use Warfarin and use painmeds but that thing you have to talk about with your Specialist.

APS also often go together with other reumatological illnesses like Sjögrens, SLE (Lupus) , Thyroidea-issues and they may give you pain also and therefor it is important for us to have a Specialist of autoimmun illnesses who works with these illnesses daily.

Where do you live?

[Jetticat in reply to Lure2]

I live in Leicester I see all the relevant consultants, stroke, haematologist, pain management and several others including a rheumatologist who is of no help...in addition I suffer from fibromyalgia, secondary sjrogrens, sero negative RA, OA, pernicious anemia have route nerve impingement cerebral vertibra, and have suffered multiple cerebral strokes with long standing ongoing severe neuropathic pain and also chronic dupetren construction. Warfarin level disired range 3.5 so between 3 -4, I am seen locally as well as in London.

[Lure2 in reply to Jetticat]

If you have had all those diagnoses I think you do need a Specialist of autoimmun illnesses who is usually a Rheumatologist. Did he or she give you all these diagnoses?

Could you perhaps look for a better Rheumatologist of autoimmun illnesses incl APS?

[Jetticat in reply to Lure2]

I was diagnosed in London in the specialist APS clinic and also by professor dcruz, I have been seeing a rheumatologist in Leicester but other than scans that on the majority show nothing active dispite having terrible recurrent pain and joint swellings by the time I have scans swellings are not active, I have had better blood testing results in London as they are more expanded locally generally tell a different story!? I have been sent to pain management locally so many times but cannot offer me anything other than accupuncture which yes does at the time help but then stops, I don't think I should waste my time on my rheumatologist anymore as unless scans show anything I've been told there's nothing they can do for me, and just state that it's my fibromyalgia flair, which I agree but the pain is far too wide spread, I am overwhelmed and exhausted by the countless frequent appointments week to week not to mention that I have to hospital venous bloods at a hospital based setting as I am discrepant from the inr ratio machine, sorry for the long post xx

[MaryF Administrator in reply to Jetticat]

It is important to rule out other things such as low vitamin D, low B12 and Folate, Ferritin and poor Thyroid function, this is often missed the Thyroid bit, unfortunately as mine was, it only showed up when I ordered my own panel of Thyroid tests, which showed that I was very Hypothyroid, naturally I then took these tests results to all my main consultants and my GP. Is your Pernicious Anaemia being treated? MaryF

[Jetticat in reply to MaryF]

Yes I have bit b12 12 weekly injections, but nobody has ever gone into detail regarding the impact it has on an individual. Thyroid I have mentioned on a few times but I don't really know what panel to ask for as the basic seems okay? X

[MaryF Administrator in reply to Jetticat]

Unfortunately many of us save up and order our own, as the basics done by our GP's and at the hospitals, are not good enough, they don't have access to ordering the tests, there are tests listed over under pinned posts, over on the right hand side of the forum: the-rheumatologist.org/arti...

Mary F

[HollyHeski Administrator]

Hi, on top of anti inflammatories, you cant take any pain meds that contain aspirin, as these will also thin the bloods.

There are stronger pain meds that are prescription only, to paracetamol-

Codeine, tramadol, morphine, but none of these are recommended for long time use.

Talk this through with your GP, as there may be other therapies that may help with your pain.

[Jetticat in reply to HollyHeski]

Unfortunately I cannot take tramadol as am very sensitive, and react very badly to codine. X

[HollyHeski Administrator in reply to Jetticat]

I cant take Tramadol either and yes codeine seems to stop my bowels working and causes more pain than I started with.

I'm not on warfarin, so only have to avoid aspirin pain killers.

This study gives a clear understanding to the interaction -

ncbi.nlm.nih.gov/pmc/articl...

Others may have other solutions that may help them - hope they answer you.

[Jetticat in reply to HollyHeski]

Thank you that very helpful x

[Jetticat in reply to HollyHeski]

I am always talking to my GP and other professionals, was just asking why does anti inflammatory meds cause problems with warfarin, and any views? X

[panda60 in reply to Jetticat]

Anti inflammatories not allowed with warfarin as risk of stomach bleed which is a nuisance for me as I am stuck with paracetamol as anything with opiates or codeine make me very sick an dizzy☹️

[KellyInTexas Administrator]

This is a great question, and one that needs addressing.

The problem is is needs addressing by several specialists.

1. Pain management specialist.

Is it long term pain you are talking about?

Is it from inflammation? Then is it steroids we are talking about? ( that’s an entire series of lectures at university. I have a quick brief thumb nail I can put in if you’d like- it’s very informative.)

Short term pain? What about flu with high fevers? Paracetamol spikes my INR sky high. ( not unusual. One is ok. More than one for controlling fever with flu is disaster for INR.)

2. Hematologist view point- bleed risk.

Rule of thumb with APS: ask a simple question, you will never get a simple answer!

[Jetticat in reply to KellyInTexas]

Thank you everything makes my INR spike even paracetamol, steroids work at the time but have been advised only small sporadic doses as they are not worth considering long term x thank you for your reply x

[KellyInTexas Administrator in reply to Jetticat]

I really didn’t help you though... I don’t like that I couldn’t. Your question is one that I fret with also.

I am told... “ we will deal with it as we need to.”

Codeine makes me vomit as well.

I’m on Rituximab infusions and have just recently starred long term steroids. ( Vasculitis also and very high inflammation markers. )

[Jetticat in reply to KellyInTexas]

You have many thanks for your support x

[Fra22-57]

Have you tried to co-codamol .I take these when pain too bad

[Jetticat in reply to Fra22-57]

I can't because of the codine in them x

[Fra22-57 in reply to Jetticat]

One nerve painkiller I take is pregabalin.has that ever been offered

[Jetticat in reply to Fra22-57]

I already take gabapentin, tried the other but it completely conked me outx I seemed to have platoed on the gabapentin x

[Fra22-57 in reply to Jetticat]

I normally just take paracetamol along with my other meds if needed.I am on 10mg steroids.Been trying this past month to try and reduce as been on them 7 years.only even tried 1/2 mg every other day and in so much pain and had to cancel visitors so going back up dose.I know what a struggle it is to be comfortable

[Lure2]

I think you should have a Rheumatolgist though as it is imporssible for you to have control of your APS-blood if you only have to go to a hospital very seldom, as many of us can not afford or get a selftesting machine. My specialnurse for coagulation says that one paracetamol does not change your INR (I selftest here in Stockholm but very seldom have to take paracetamol) but if you take it a longer time (let us say every day for a month or so) the INR will go up but as it is with Warfarin we must keep a steady level of what we take into our mouth. After some time the INR would be steady if you take the same amount every day that is.

As you have got so many autoimmun illnesses and you say you have no trust in your Rheumatologist (many of those do not know APS well enough as they do not work daily with those illnesses) I still want you to try to get to a Specialist who really know autoimmun illnesses as if you get the correct diagnose (I doubt you have got that but I do not mean APS now) and the correct treatment and above all the correct anticoagulation-drug that will work for you in your situation. You know there are other anticoagulants than Warfarin but it is very important that we keep our blood thinned one way or the other!

Fibromyalgia can be mixed up with other autoimmun illnesses like Sjögrens or perhaps RA etc. As Mary says it is also important to get your Thyroidea checked.

Best wishes to you and hope you find a Specialist. I understand you are tired of it all. We really have to fight and help ourselves to get the help we need with this illness!

Please do not give up! Let us hear how it goes for you also.

[Lure2 in reply to Lure2]

Read also "Sticky Blood Explained" by Kay Thackray. A good book to read and also for relatives to understand what we are going through-

Kerstin

[Jetticat in reply to Lure2]

Have read it x

[Jetticat in reply to Lure2]

I have to be on warfarin and have discussed others so many times, but because I have suffered multiple cerebral strokes am told that warfarin is the only and best way for me disired level 3.5 if I drop below 3 symptoms dramatically worsen and I have to inject clexane x

[Lure2 in reply to Jetticat]

Good that you have got Clexane but it may be difficult to know when you have to use the Clexane and when exactly your INR is under 3.0 if you test your vein-value rather seldom. How often do you test the vein-value? Many of us with cerebral symptoms (like me) need a steady INR otherwise we get a lot of symptoms back.

I forgot you have read Sticky Blood and there you can read about it.

[Jetticat in reply to Lure2]

I have regular venous blood tests done through my local general hospital each week to make sure I am in range between 3-4 I am looked after and managed by the warfarin nurses who then call me and dose me to the correct dose, if I am too low I have a repeat prescription at home and inject myself until I am back in range, I have a regular supply of blood forms sent to my so the warfarin nurses pick the results up x

[Lure2 in reply to Jetticat]

Perhaps you do not have positive Lupus Anticoagulant in your blood that makes it difficult to keep an INR steady.

If we have LA positive, some of us must selftest every second or third day to know we are in range. Go to hospital for vein-test (the only reliable test) not necessary so often if the difference between the vein and the fingerprick tests are the same.

Do you have LA negative and the difference the same?

[mariamoo1]

I really feel for you, I too was in so much pain, I also could not keep my INR within range, also had to use the injections, bloods done at hospital weekly , all just like you. ( trying to keep this short and sweet) I now do not use warfarin, it was more dangerous I am told for me, as my range was to unpredictable, dangerous highs and lows within days. I now take apixaban (eliquis) so no need for INR and blood testing. As for pain zomorph, capsules, oral morphine, and the wonder drug! Hydroxychlooqine. And paracetamol when needed. My pain is due to all the symptoms associated with APS and all it’s other add on autoimmune friends! Plus I have a shattered shoulder, which is displaced and a broken humerus bone, that has healed completely out of place, I have now been on the NHS waiting list for well over 2 years for surgery on my shoulder. (It was not operated on at the day of injuring, as the surgeon would not because I had suffered a stroke a few months earlier, his choice, not mine if he had bothered to ask) So he has left me in all this pain, all this time! I’ve now had to find a different surgeon, who is prepared to operate on someone suffering with APS and all the add on compilations. But still a horrendous waiting time “ on the list for the op” but I do cope on the above painkillers