Amytripyline: Saw my RA consultant last... - Hughes Syndrome A...

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Amytripyline

Fra22-57 profile image
17 Replies

Saw my RA consultant last week as since I went on warfarin for APS my RA and Fibromyalgia has been worse and I feel rubbish. My last INR was 2.4 and at moment I take 6mg warfarin every day but Friday which is 7mg.I have been out I. INR range of 2.5-3.5

I questioned consultant if this was OK n he said yes.only thing he would help with was 25mg amytripyline.one at night would help me but of course it's just antidepressant to help you relax and sleep.first night I did but pain us still the same.I also take 1000mg sulfasalazine a day,10mg prednisolone and 450mg pregabalin. See consultant in January again.he just said I have the three diseases which is unfortunate and they run along each other.any one else on the amytripyline that has helped.

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Fra22-57
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17 Replies
tobiasm profile image
tobiasm

I am also on amitriptyline, but I take it to help cut down on the number of visual migraine symptoms I get, which it has helped with that.

Fra22-57 profile image
Fra22-57 in reply totobiasm

Oh.I don't get migraines Tobias.suppose its used for many things and I will have to be patient and see if it does help.thank-you for your reply

Lure2 profile image
Lure2

Hi,

I do not remember if I have asked you if you have got a real good doctor for your 3 illnesses. I think you need a Specialist of our illness. Those doctors (mostly Rheumatologists) understand what to look for as to symptoms as your illnesses are reumatological illnesses.

An APS-Specialist also knows how important it is that we are enough and correctly anticoagulated (also at a stable INR all the time). It is not so important how much warfarin you take but the INR is very important. You know no doubt that you have to be CONSTANT with what you eat. New drugs also change the INR.

Best wishes from Kerstin in Stockholm

Fra22-57 profile image
Fra22-57 in reply toLure2

Yes Kerstin I do have a rheumatologist who deals with all three and he is lovely but I don't understand why my RA co ditions have become worse since taking the warfarin and doubt if consultant knows.the amytripyline not helping thou I should give it time.

MaryF profile image
MaryFAdministrator

I see you have had quite a few answers already, I will just add in, please regularly make sure that your levels of Vitamin D, B12 and iron are checked, as if these are a bit down, it will make you feel generally worse. Also I know I go on and on about this, but please also make sure they review your Thyroid with regular tests as this can creep up insidiously and at times this is the cause of the 'Fibro' MaryF

Fra22-57 profile image
Fra22-57

Thanks Mary...yes all been checked and OK and I do take Calcichew-D3 Forte for vitamin D.waiting for thyroid result.Consultant said all 3 diseases were clashing with each other. Hoping the warfarin will soon help me feel ok

shardavis3 profile image
shardavis3 in reply toFra22-57

My doctor also prescribed the amytripyline for my fibro but I did not get relief until I was up to fifty mg. I also feel better with a inr over 3.5 to 4.0

Fra22-57 profile image
Fra22-57 in reply toshardavis3

I will see how I go.I also thought my INR should be higher but consultant has set it at 3

Lure2 profile image
Lure2

Hi again,

I still wonder if you have got a Rheumatologist on the recommended Specialist list in the UK??

I can assure you this is of utmost importance for you!

Kerstin

Fra22-57 profile image
Fra22-57

Not sure if he's on the list.I asked if I should see another specialist for the APS and he said no as he is specialised in APS.In UK some do both. I see him again in January and if I'm not happy will ask to see someone else

Hi fra22,yes I take amitriptyline, too,same dose. It has helped me sleep,too.

I have Lupus, fibro and Raynauds... so I have overlapping diseases, too.

Before the amitriptyline, I was only sleeping 4 hours a night,and felt really terrible.

Now at least I sleep a good 7 hours.It does help to sleep better and longer.

Still have terrible pains in my hands and feet though.

Wishing you well...dunkxx

Lure2 profile image
Lure2 in reply to

Hi,

I guess they have tested you for APS (Hughes Syndrome) also?

Kardiolipin IgG, IgM, Beta2 Glycoprotein1 and Lupus Anticoagulant (the last one is not Lupus but an antibody to test for APS).

Many autoimmun illnesses go hand in hand, so Thyroid, Lupus, Sjogrens, APS and sometimes Fibro (the last one if not correct diagnosed can be APS).

Just in case ....... Best wishes from Kerstin in Stockholm

Fra22-57 profile image
Fra22-57 in reply toLure2

Yes Kerstin I have APS and was diagnosed in July thou consultant had my blood results of it in February

Fra22-57 profile image
Fra22-57 in reply to

Thanks for your reply Dunk.. These diseases are poo as you know yourself.the amytripyline isn't helping yet and still waking alot in pain but I will perseverance for a month.Wish you well

Hi fra22...I hope eventually it helps you!you may need a higher dose,or a dif med.yes..these diseases certainly are poo for sure!I hope you are well.All my best,dunkxx

shardavis3 profile image
shardavis3

yes, it has helped me. I take 50mg daily at bedtime and it has helped my pain from Fibro. I was on Norco for pain, but I have not taken any for months. I would worry more about the Prednisolone. That is nasty stuff. Doctors kept giving me more to help my "asthma". After 21 days in the hospital {ICU} They were giving me the drug thru my iv. Finally after weeks of me getting worse and worse the lung biopsy came back with aps diagnosis. My doctor noticed one leg was larger. How she could tell I do not know. I was so swollen I could not walk because my legs were too fat to move, I looked like the Pillsbury dough boy on steroids. Tests showed two DVTs in my left leg. The next day they found two massive clots in my lungs and many little clots. Part of the lung had necrosis from other clots.

To make matters worse, the prednisone caused my shoulder ligaments to dissolve.

Another operation to rebuild my shoulder.

That is my experience from Southern California

Fra22-57 profile image
Fra22-57 in reply toshardavis3

Wow shardavis that's scary stuff.I have been on prednisolone for nearly 4 years.knew it effected bones so that's why I have Calcichew-D3 tablets .wish I could get off it but nothing is helping enough to wean it off.

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