Psoriatic Arthritis
Islandblue89
Member Posts: 3
Hi everyone, I am new to this forum.
I was diagnosed with PA in June 2009. After the initial tests and repeated blood tests as my Liver function was not at the correct level, I was given Meth to start. I was only on it 2 weeks and was taken off it as the Liver tests were reading high. At this point, my wife and I were trying for a baby, so I stayed off all other medication until my wife got pregnant which also coincided with the pain and frustration peaking. (Hopefully I am not boring you at all - But it is actually helping putting this in writing). I then went back to my consultant in December 2011 and had repeated tests. I am at a point were I am currently taking 2 Diclofenic daily, 2 tramadol daily before I go to bed and 2 co-codemol during the night so that I can get some sleep. I feel very edgy, frustrated, short tempered, anxious and to round it off, the latest blood tets have come back reading a high liver function so I am currently unable to start sulf. I am 33 years old, highly motivated person, but this is really starting to get me down.
Can someone tell me if I cannot take sulf, will that entitle me to go for a biological treatment?
Thanks
I was diagnosed with PA in June 2009. After the initial tests and repeated blood tests as my Liver function was not at the correct level, I was given Meth to start. I was only on it 2 weeks and was taken off it as the Liver tests were reading high. At this point, my wife and I were trying for a baby, so I stayed off all other medication until my wife got pregnant which also coincided with the pain and frustration peaking. (Hopefully I am not boring you at all - But it is actually helping putting this in writing). I then went back to my consultant in December 2011 and had repeated tests. I am at a point were I am currently taking 2 Diclofenic daily, 2 tramadol daily before I go to bed and 2 co-codemol during the night so that I can get some sleep. I feel very edgy, frustrated, short tempered, anxious and to round it off, the latest blood tets have come back reading a high liver function so I am currently unable to start sulf. I am 33 years old, highly motivated person, but this is really starting to get me down.
Can someone tell me if I cannot take sulf, will that entitle me to go for a biological treatment?
Thanks
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Comments
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hi it is so hard before they find some good meds to help you sorry to hear about your liver do hope things get sorted soon. valval0
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Hello Islandblue
Welcome on board mate sorry to hear your feeling so down I also have PA along with RA and one or 2 other things. Had PA since 1980 I know it can get to you and its not just the pain but the emotional side as well and people don’t seem to understand that. (WAS IT A BOY OR A GIRL) by the way.
It will get you down mate if you let it, the mixture of RA / medication and tiredness along with uncertainty and frustration that you can’t help yourself is hard to cope with. Its been years for me and there are times when I feel so bad its hard to cope. Regarding the sulf or biological treatment Give the Rheumy nurse at the hospital a call and see if you can make an appointment to go in for a chat, Tell her how down you are and you need to talk. The nurses are great and understanding just remember your not going to tell them anything they haven’t heard before.
Take carte mate and if you need to talk this is the place lots of good people hear who can relate to you and how you feel.
Keep your chin up
ColinWHEN GOD GIVES YOU LEMONS MAKE LEMONADE0 -
Hi there
welcome to the forum from me.
Congratulations on your wife getting pregnant...that is so often a problem on here with some of the medications so fantastic news.
I think the criteria for bilogics is 2 DMARDS having failed...so worth checking whether you qualify. I hope you do.
So often those on here who get this sort of thing are exactly like you motivated and determined people. :sad:
LOve
Toni xxx0 -
frogmorton wrote:I think the criteria for bilogics is 2 DMARDS having failed...so worth checking whether you qualify. I hope you do.
So often those on here who get this sort of thing are exactly like you motivated and determined people. :sad:
LOve
Toni xxx
Think you are right T on the 2tries, that is if u r not in my neck of woods, and new consultant changes your diagnosis & undiagnoses coz he's not sure...
Anyhow good luck with that, speak to rheummy nurse , (if nice) and get some info.
Take careClare xx0 -
Hi Islandblue
Sorry to hear you're having a rough time. I too have PA, diagnosed in Oct 2011, right out of the blue, as I've only ever had colds. All started when I fell over in Aug. I've been on Sulf, and at first it worked really well, but the last few weeks I seem to be going back to square one. Have pain in toes, knee and shoulder again. Little finger is so red and inflammed I wonder if it will ever look normal again?! I find walking difficult, can't enjoy walking the dog at the moment. To be honest, I too am getting a tad low with this. My next appt is in Feb, not sure if they'll change the meds or keep me on them. Thing is I'm wanting to start a family so i'm worried if I can take other meds other than Sulf? Sorry, I'm waffling on here!
Anyway, congratulations with your baby, and I hope you get some relief soon.
x0 -
Hello and welcome from me.
Congratulations on your new/impending arrival!
So sorry you are struggling so much and sorry too that you have not yet managed to find meds you are able to take because of your liver. Not sure in terms of the biologics but what I would say is that there are a goodly number of other DMARDS available (certainly for RA and I think PA is treated pretty much the same way) so hopefully there is something else you can take in spite of the abnormal liver problems.
I completely understand why this is getting you down. but hopefully posting here will help you and make you feel less alone with things.
Thinking of you.
Tillyxxx0 -
I think the rules for 'qualification' for the biologics vary from area to area: I was granted them after four (or maybe five years, I cannot remember) of failing with sulph on its own, then sulph with meth, then leflunomide, and finally cyclosporin. The thinking at my hospital now is straight onto them after six months of little progress. (Oh to be newly diagnosed!) Ask the rheumatology nurse or ring your rheumatology helpline (if you have one), they should be able to tell you what's what - but if your liver is sensitive even they might not be the answer. These are strong meds, our poor bodies do take a hammering sometimes, as if the blasted disease wasn't enough. :sad: I too have PsA and now OA in four of the PsA affected joints. DDHave you got the despatches? No, I always walk like this. Eddie Braben0
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Hi Island Blue,
Welcome from me and also your right it does so help to write it down, kinda helps to get it out your system really.
Congrats to you and your wife though
Its hard when you can't take the meds.... I think Toni is right. Technically you have to fail on 2 DMARDS and one has to be MTX. I think there is also a pint score as to how many joints are effected.
Cus you can't take them that should mean you have failed on them and they ought(I hope) be looking for other ways for helping you so hang in there and maybe they will move you to the biologicals?
I don't know how it works though to be honest it just seems fair they help you and that would only leave the biologicals..... Have you been able to ask them what they are going to do?
I know I would qualify for them but they have said I am not worth funding us i have the pa and oa in the same joints and even if they treated one they can do nothing with the other so i will lose the joints proper function anyway.
I kinda understand what they mean but on a bad day I kick so hard against it.... see thats my frustration aspect even if not being able to do things too well isn't
It all seems to be down to funding and your rumo's willingness to fight for you here. I think if you haven't asked them maybe you could ask them about what comes next?
I hope the liver will settle and it might cus sometimes it can be just a blip. Nice to meet you and hope things will improve for you. Cris x0 -
Thanks everyone for your kind words, support and advice.
With a baby girl already and 1 on the way, I just feel that I need to get this sorted for the better of my family and also my own life. Since I took it, the only time I had pain free was hen I had the oral steriod. Even when I had the injected sterods, they did not relieve the pain.
Will give the nurse a ring tommorrow and take it from there.
Thanks0
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