Good Stories with the Drugs especially DMARDS / Biologics

[scalysteve]

I think Enbrel has been wonderful, although it hasn't really helped my skin.  I did have 3 infliximab infusions back in 2004, now that is a miracle drug - cleared myt skin and joints for 6 months - unfortunately did not persist to stay on it and because of the risk of hypersensitivity I can't have it again :-(

I was on Enbrel for years, and for the first year or so it really did help to clear most of my patches of P.  It never totally cleared it and became less effective as time passed.  During one summer where my P started looking a little better (from spending tons of time in the sun and smothering my body in coal tar constantly), my dermatologist reduced my dose of Enbrel to a 25mg syringe.  That sucked.  My P flared back up instantly and I went back to demand him re-double the dose.  He put me back on 50mg a week, but it just never seemed to be as effective.  I continued taking it anyway, habitually I suppose, along with other creams for quite some time but my dermatologist retired this year and I haven't found a new one yet.  I'm off the shot and barely noticing an increase from the amount I still had on my body while taking the shot (which is still substantial coverage).  I'm looking for a new doctor now and just ordered some of that Proz92.  I spent 115 bucks on that stuff and have no idea if it's going to help, but I read a lot of good stuff online.  Anyone else know anything about it?

[Tracykim8]

i was put on sulpphasalazine a year ago.did not see any difference.mtx was then added 6 months later.i guess only in the last month have i been feeling so much better.i still have a few bad days and am not pain free but my quality of life has improved.i no longer feel like a robot in the the morning who needs oiling before i can move.i have learned slow and steady wins the race.before tablets i was finding very hard.i walked like in old woman of 90.my hands,some fingers,a toe,shoulder,elbow,foot,neck and back were swollen and sore and very painful.i know find i take less pain killers.my knee still plays up and my back is still sore when i have been sitting for to long and going shopping and walking for too long is hard but improving.i am not 100 percent back to my old self.i guess that will never happen.but if this is as far as i improve then i am happy with that as it is a long way from when i started my journey on tablets.it took longer that the doctor told my tablets would start to work and when you are in pain you cling to everything they say.so lets hope things stay like they are for me and more people on here follow suit.good luck to everyone.

[em-121]

I have had Psorasis for more than 25 years and have tried everything, creams, Puva, MTX, Cyclosporin and each time the drugs stop being effective so I graduate up the chain to stronger and stronger medicine. Each one has worked- the psorasis has almost cleared- and now I am on Enbrel and MTX. I have had about 13 doses of Enbrel and feel fine- no side effects to speak of and have lots more energy than when I was on Cyclosporin. So apart form the pain of the injection, I really get on well with enbrel.I couldn't believe it when I was told how much it cost and feel lucky to have it. I am part of the study at Manchester University too.

[Artycrafty]

I have suffered since 2006. Just last November having tried sulphasalzine and metheotrexate to NO effect what so ever I finally started Anti-tnf. Humira by subtucaneous injection once every fortnight. Although my liver numbers are up they let me continue as I CANNOT live without it now. Humira has CHANGED my existence to a life once again. Within 48 hours of taking it I was able to use my hands again. It was a WOW moment. Now, six months on I am feeling the effects don't last as long and am craving my next dose! (Am I anti tnf junkie? LOL!). I don't know why this is but will be raising it with my consultant next time. I have weekly blood tests too... (hate this!) but anything to keep them happy and my humira flowing...! 

[Sue S]

I too started with PA in 2006 and last December started on Humira, so that makes it about 7 months on.   Good effect for me as well.  Can't say it has taken me back to pre 2006 but at least I have a life again.   Also noticed that just lately been really ready and waiting for injection day.  Hope it's not going to wear off so soon.   I have never had a single mark or reaction rash to any of the injections until this week.  I have a red spot that is just like a mozzie bite and am trying not to scratch it.   Saw the anti TNF nurse today and mentioned it, and she said that can happen at any time.  Oh well, small price to pay really.   My wrist still not very good though and it is the right one so affects everything I do.  Nurse going to ask Doc if he will give me an injection in the wrist.

Sue S.

[ChristineBY]

Thank you all for this thread... I'm due to start an anti-tnf soon, don't know which one yet, as part of a study. Ive had p since I was just 18 months old i'm now 39. it has always been severe, diagnosed with pa at 16 but has only really got bad in the last 12 months. This thread has got me really excited that my skin could clear and the pain in my hands and feet could be a thing of the past!!!! I will come back and hopefully post again that it's worked wonders for me 

[kev]

Myself, i had quite a sudden onset of P and Pa. At 26 i had never has any sign of p anywhere on my body and joints were alive and kicking. Then (enter the dreded p) i had a small patch that i believed to be a fungal infection, within a year you can guess the remainder of the story, i was completely covered and every joint in my body was quite badly effected. I also compete professionally in sport and being active is the most important part of my life. After about a year i finally got on mtx. And WOW!!!!!!!!!!!!!!!! AMAZING!!!!!!!!!!!! my p which covered places on my body i had never before new existed, had was completely gone, and my PA was down to a tiny insignificant ache, and all this on a very low dose. However it did make me very sick and i stopped taking it 2 years ago to make weight for a big competition i was fighting in. Again i remaind symptom free!!!!!! YIPPIEE!!

The sneaky P didnt even make any sign of a comeback for a whole 18 months, and in that time i was completely back to my old self. At present i'm back in a bad state, but now i know that there are drugs out there that work i am so much more positive. Unfortunately the mtx makes me really sick so its not practical for me, and i'm not responding well to other drugs at the minute. However i'm going on the biologics soon and can't wait. And when i do i'll post the second half of my succsess story on here.

Anyone who is struggling at the moment there are lots of people who are going through the same thing. Often the stuff going on inside your head and the feeling of helplessness is much worse that the symptoms. The secret is to stay 100% positive until you have your own success stoy to post on here.

thanks for all the other stories on here guys made me feel good reading them.     X

[ChristineBY]

hi guys the study i'm on is Certolizumab Pegol which is injection form every two weeks.  It is a 3 year study. ... I'm now 7 weeks into the study (4 Injections)  and I can say it's like a miracle has happened. My skin is clear. you can just make out where the sores were in some places..My SCALP!!! COMPLETLEY clear  , in my ears ALMOST clear.  even my nails are looking almost clear.  My right hand is almost back to normal and my aches and pains are minimal.  I ache for a much shorter time 1st thing in a morning.  I feel less depressed and am having no side effects what so ever.  I can still feel quite tired somtimes though. 

I am sooooo Shocked at how quick this drug works. and what is even better for the first time in my life i look like i don't have P.          
 
I just pray when the 3 years are up this drug will be widely available so everyone can hopefully have these effects. 

One very happy bunny. 
Christine

[alec101]

Hi all

This is a post on behalf of myself (41) and my daughter who is now coming up to her 3rd birthday.

I have had pa since I was 15 and it flared for 5 years whilst I was in school. The doctors gave me feldene and piroxicam and steroid injections. I used a walking stick and I have damaged joints in my fingers and toes, perhaps elsewhere but I cant see them. I went into remission when I was 19 and didn't have more than the odd ache which went away after taking brufen.

Last year in the aftermath of my wife having tongue cancer I started to flare badly. My daughter became very ill - could be Leukemia , could be arthritis, turned out to be Systemic onset Junior Idiopathic Arthritis (not rheumatoid). The only joints not affected were in her spine. She has had over 10 prednisolone infusions and lots of steroid injections - one occasion 17 separate ones under general anaesthetic - would have been more but the joints were too small!

After my experiences in the 80's I was scared...but these systemic drugs have saved our lives.

My daughter has been on a trial of Canakinumab which did not work but now she is on MTX and Enbrel and is off the pred at last! She has a normal life other than 3 injections a week.

I am on 15mg injection of MTX which means I can walk and can use my right hand again, rather than having a painful piece of useless meat hanging off my arm!

I had a bad reaction to the pred which also wrecked my then moderate psoriasis and pushed it into being severe. I am now starting enbrel and have been offered Humira if that does not help the P. My derm want me on one drug if at all possible - Good bloke! Hope to post a good story about my P soon

[Sue S]

Good to read.  Hope your story just gets better and better.  Reading about your little daughter nearly made me cry.  It has put a few things in perspective and I will try not and moan so much - after all I didnt get PA till I was into retirement.  Thank goodness I never had it when I was young.  May both your recoveries go from strength to strength.

Sue S