The rheumy actually apologised to me as he couldn’t find anything to calm the Psa down
He has given me Leflunamide as well as the enbrel for the next 6 months if that doesn’t work he will switch me to Humira. I would never be able to sneak up on anyone I rattle with all the tabs I take lol currently have enbrel leflunamide arcoxia amitriptyline and Tramadol. Hope something works soon as I am losing all faith of being normal again
i cant wait six more month's for enbrel to work. Ive been suffering since jan 2012. I could really use some painkillers lol. Just took my 3rd shot this morning and i still cant tell it workn..
I take Tramadol for the pain and at the moment they work really well. Was told by the nurse specialist that the Enbrel can take upto 16 weeks to work have had them for 20 weeks now and to be honest cant see the difference just seen to be getting worse all the time but hey ho everyone is different and it might work really well for you
Catherine don't give up hope. There's 4 biologics approved for PsA but there's several more used off label. There's also a bunch of new meds coming out. Some work very differently.
Thanks Andrew for the support think I was having a bad day I feel a lot more positive today
You're welcome Catherine. Don't give up hope but do be concerned and proactive. You don't have a particularly easy case to treat. You may have to be your own advocate and lead your own care to a certain extent. You probably want to have an organized list of all the meds currently prescribe for PsA, especially the TNF alpha blocker (biologics): Enbrel, Humira, Remicade and Simponi.
Then try to get some idea of the DMARDS, MTX, arava which you're taking, and the others. They aren't as effective but they can be used in combination with the biologics.
After that, look at the systematic meds used for psoriasis (Stelara) and for rheumatoid arthritis (Cimzia -- another TNF blocker, Orencia -- something else, others).
Finally look at the new drug pipelines. Most notably there's the IL17 blockers -- similar to the TNF drugs but more focused with less side effects and the two pills, Apremilast and Tofacitinib. I know this is a lot of information and learning about them will take even more time. You can get a lot of information at psoriais.org including a page which lists the new meds in the pipeline: http://psoriasis.org/research/drugs-in-development/pipeline and the webcasts. http://psoriasis.org/events/educational/webcasts You'll have to create a login to see them. Feel free to ask me questions if you want.
Thanks for the info tried the methotrexate and sulfasalazine first but had a really bad reaction to both got a really bad skin rash and physically could not get up out of bed had a headache and flu like symptoms the rheumy stopped them immediately tried the enbrel on its own so will have to see what it’s like with the leflunamide aswell but you’d right there is still plenty more left to try so will keep going till there’s nothing left lol
Hi, I’ve also been looking for something to work for me since Jan 2012. Mtx,embrel,humera,Simponi, tried them all without much difference, except having migraines. My rhummy started me on leflunamide now. Took my first dose tonight. I’m also beginning to wonder if I will ever be able to function normally again. I have 5 children, it’s very hard to explain this to them and others. I’m not sure if I even know what this PsA is doing to me. Will keep on looking for THE right meds.
Hi mybabykk my children are nearly 7 and 10 they don’t understand why I can’t join in on activities or go for long walks with them I sometimes feel like an outsider looking in watching them run and play on the beach and all I can do is watch they also don’t understand why I am so tired all the time. I also have to stop myself from being grumpy and short tempered. because I am tired or in pain. Every now and again I join in anyway knowing that it will cause me to have a weeks worth of severe pain because sometimes it’s worth it
Hi Catherine, my children are 21,17,15,8&6. Crazy how much you sound like me! I guess we’ll just keep looking and praying they’ll find a cure for us. I try to stay positive as much as possible. Stress is hard to stay away from because of this PsA, children, wife, etc. My mother was murdered 2days after Christmas in a home invasion and the depression just about got me. I happy to say that has passed now and I am thankful I can be any part of my children’s lives. Sometimes it’s just important to BE there with them in any form. God has givin me new insight with the loss of my mother…just being there is sometimes enough…even if we can’t run ,walk, bike, etc…we can give hugs, listen,encourage,counsel etc. Keep looking at the positive …I’m still here! My new motto!
When I started enbrel I got a lot more nauseous. Might want to up your folic acid. That helped a lot.
I agree with the warming up part of it. That made a big difference for me. I prefer shots over pills. Seems like I take so many different ones. I was on enbrel for a few months. It took the pain of PsA away, but I was so tired from it I didn't want to get out of bed in the mornings. I also got a rash on my stomach. The tiredness and rash got worse each month. I was finally taken off and now have to wait for it to get out of my system before moving on to something else. I am flaring again and in a lot of pain. Wondering at this point of the tiredness and rash were that bad after all.... Don't stress the shot...it's a piece of cake.
enbrel hasnt helped me at all.. I feel like an antique lol........
Sorry to hear this driveshaft, when do you see your Rheumatologist again?