Off Humira, On Amitriptyline, Waiting for a drug trial...

kmt297

Hi All,

I hope everyone's OK. I still pop in and check on everyone often even if I can't post at work... I went to see my consultant on Friday, it was an interesting visit, the Registrar poked my joints and made them very sore - found some "squishy" (her word!) bits on my wrists that weren't there before plus all the usual suspects, knuckles, toe "knuckle" joints, knees, shoulders, elbows, SI joint, neck, TM joint, collar bones. We chatted about the Humira - finally gave it up, it's not working and too dangerous to keep on it as I keep getting infections. She said no current drug trials that I'm eligible for - we just have to wait. She did say that she feels they haven't got to the bottom of what's wrong with me, the PSA isn't follwing the usual patterns and no sign on x-rays that there's any degeneration apart from slight in my SI joint. So she's ordered a full bone scan and another bone density scan (mainly due to my hips "grinding" when I walk) and put me on amitriptyline. I have to see my GP if it hasn't worked in a month to get the dose increased. She thinks that I am in less pain than my brain perceives and as my joints aren't getting damaged they can safely mask the pain and not cause long term damage. They tell me the amitrip will also help my sleep - the Dr actually put her head in her hands when I told her normal for me is waking about 5 or 6 times a night stiff and in pain.

Needless to say this whole thing isn't helping my desire to pretend nothing is wrong - or my distress that I still can't do the stuff I think I should be able to... Anyone had a bone scan? Or anyone on amitriptyline? 2 days in and I'm feeling very sleepy all the time which the Dr says will wear off after a week or 2 but sleeping all night (about 6 hours before waking) which is great!

Sorry for the long post - will try to pop in more often so I don't end up sending everyone to sleep with my long ramblings...

KT

dorcas

Hi KT

You're certainly going through the mill just now :shock: it must be really hard to be stuck in what seems to be a diagnosis dilemma but at least your doc is doing more tests to see how your bones are.

It's not unusual to have more than one form of arther so perhaps that's what's going on with you.

I have PA too and had to come off Humira in March as I had produced antibodies that stopped it being effective, but that was after 4 yrs so I've no complaints about that. I was on Enbrel prior to that but had an allergic reaction so discontinued that one very abruptly.
It is 'trial and error' with lots of the meds as many of us know, and we all are such individuals so what works for one doesn't necessarily work for another. :roll:
I don't know if you've been on any other anti tnfs ?? but PA peeps can have three 'trials' ....in Scotland though so might not be the same elsewhere?!..and I'm just waiting to start infliximab.

I haven't had a bone scan..so can't comment about that, but I am on Amatriptyline 60mgs and find it really helps with night pain. I found that it's best to take it early evening...about 8 at the latest...to avoid feeling 'hungover' in the morning. Any later and I can hardly get myself moving!

really do hope you get some answers KT to the pain you're having. :!:

best wishes,

Irisx

ps. your post wasn't long, rambling or boring! xx

frogmorton

Hi KT

sorry this is not as full as I want it to be.

I am having a migraine and cant see properly. :oops:

I just want to off er myy support and to tell you i love my amatript now

You needs your sleep girl

Will read it properly when I can see peoperly so sorry

Love

Toni xx

tillytop

Hi KT – sorry you are having such a bad time at the moment and so sorry that you have had to stop the Humira because it wasn’t working for you. Interesting to hear your doc’s theory about not being in so much pain as the brain thinks – but I know that it doesn’t help you very much – hopefully the Amitryp will give some some relief (and some more sleep!) whilst investigations continue. I have RA not PsA but I do understand how frustrating it is when you are unable to do things so you have all my sympathy. I haven’t had a full bone scan so don’t know what that involves but the bone density scans I have had are not much different from x-rays. The only uncomfortable part is having to lie down on the couch and stay still while the scans are done. Not always comfortable if your joints are sore.
As Iris says, is there any possibility for you to try an alternative anti-tnf?
Thinking of you – and please do keep us posted.
Love Tillyx
Ps: Toni, hope your migraine is better soon. Love Tilly xxx