I've been on Humira since last summer and have now been told its not working does anyone have any idea what the next step is please. I spent six years on Mtx with very little result.
My walking and pain is so bad that I'm getting worried that there is nothing left out there for me to try and I think all the worry is making my symptons worse - any ideas? :(
Oh, I am so sorry Jackie- that really stinks. Have you been on any of the other biologics? Embrel, Remicade, Simponi are all approved for PsA (am I missing anything else?) and one of them might be a good option for you. The MTX is really helpful along with the biologic- seems to help prevent to formation of antibodies. I have been on all of the anti-tnf's that are "approved" and am now fighting the good fight to get my insurance to pay for one of the others (Cimzia or Orencia). Frustrating. Would a course of Prednisone help you feel better until you can get on another biologic? Do you have a good pain med along with NSAID's? Your DR. should be trying hard to get you comfy and if s/he is not then that is a problem!
Hang in there and remember to advocate for yourself- you deserve good health and excellent, compassionate treatment!!
Blessings, Kyra
Haven't been offered anything else as yet. I still take Lefludomide every day, but was told that Embrel is a weaker version of Humira which I suppose in my case wouldn't work. When I speak to my Rheumy about pain relief he just tells me to go back to my Doctor. Unfortunately because my Dr practices general medicine he really doesn't know what my needs are. I feel like I am going round in circles all the time and the Rheumy is just not helping matters. I have never heard of Cimzia or Orencia so I will ask my Rheumy about them at my next appt.
I also think worrying about what's going to happen to me in relation to my work isn't helping matters but I suppose this is the nature of this foul disease. It's really looking like early retirement for me at the ripe old age of 50!
Thank heavens I found this site and all the lovely people like you, at least you can understand what I'm going through and we can all share our woes and support each other which is fab.
Really appreciate your advice and support - thank you - bless you :)
kyra said:
Oh, I am so sorry Jackie- that really stinks. Have you been on any of the other biologics? Embrel, Remicade, Simponi are all approved for PsA (am I missing anything else?) and one of them might be a good option for you. The MTX is really helpful along with the biologic- seems to help prevent to formation of antibodies. I have been on all of the anti-tnf's that are "approved" and am now fighting the good fight to get my insurance to pay for one of the others (Cimzia or Orencia). Frustrating. Would a course of Prednisone help you feel better until you can get on another biologic? Do you have a good pain med along with NSAID's? Your DR. should be trying hard to get you comfy and if s/he is not then that is a problem!
Hang in there and remember to advocate for yourself- you deserve good health and excellent, compassionate treatment!!
Blessings, Kyra
My rheumy changed me from humira to embrel and the embrel is working. Im concerned your rheumy is not helping you. second opinion?
Enbrel doesn't work for quite as many people as does Humira, but it works differently. If Humira doesn't work, Enbrel might. Remicade and Simponi are also different from Humira. You have lots to try still.
Next to Humira, Simponi worked the best and the longest for me :-). Embrel did not work quite as well and Remicade was great for about 4 months. Why must this all be so complicated??Your Dr. does not sound like a whole heck of a lot of help- is there another Dr. in the same practice or somewhere else that you could see? Strongly ditto the 2nd opinion!!
Thank you guys, until I came onto this site I had never heard of Embrel, Remicade or Simponi. I've had the same Rheumy since this all started so that's nearly eight years now. Over here in the UK our health system is called the NHS. Up until two years ago I was being treated by privately by the same Rheumy but in a different specialist hospital. Because my husband's company were paying for my treatment he couldn't do enough for me, then two years ago my husband was made redundant and I had to be referred back to the NHS and now it appears that he isn't really interested.
When I have been in lots of pain I have telephoned my Rhuemy for advice and support but I always get to speak with his Secretary who takes a message. Last time it took him two weeks to get back to me and by then my poor G.P was doing everything he could for me but because his expertise was limited all of his efforts were to no avail.
The last two days have been good and I have managed the pain myself, however I know this is going to be short lived and I just wait for the next flare up. I know I should live for today but this thing as you know is like living with a ticking time bomb. I think its the unpredictability of the disease I have problems coming to terms with.
I am going to call my Rheumy's assistant tomorrow and put all of your suggestions to her and see what she says. So wish me luck! Once again big thanks to both you and Andrew for your advice. Watch this space!!! Big hugs x
Good Luck Jackie!! I'll be thinking of you and hoping that you get the care and attention that you deserve. {{Hugs}}
Bless you Kyra - Thank you... watch this space!! :) Big hugs too
kyra said:
Good Luck Jackie!! I'll be thinking of you and hoping that you get the care and attention that you deserve. {{Hugs}}
One word: STELARA. Enbrel and Humira both quit working for me after 6 months each. I was on them for my severe psoriasis. I didn't realize I even HAD PsA until the second one quit working and I was drug-less for a short while. During that short while I found out (the extremely painful way) that I developed PsA sometime during the time period I had been on the drugs (I'm sure now that I have had it in a milder case for years, in hindsight). My dermatologist put me on Stelara, which was relatively new at that time and *not yet approved* for PsA. It's approved for psoriasis and you have to have tried - and failed with - Enbrel and Humira to get it prescribed. It took care of both my psoriasis and PsA, and has been doing so for a year and a half. My dermatologist tells me they are working on FDA approval for PsA too, but I am here to tell you that it** works**. I do fear that it will stop working someday for me, and even wonder now if it's starting to lose some effectiveness, but I do not know where life would have been now without it. This is a massively expensive drug but ... fortunately ... it REQUIRES injection by a doctor in their office. That means it is not technically a prescription. That means it will likely be covered (as it is for me) under a different part of your medical plan. I have no prescription drug coverage, and so Enbrel and Humira (self-administered) would not have been covered under my current plan. Stelara, however, is covered under some type of "medical" cost out of the realm of prescription drugs. And, for the expensive co-pay, Stelara has a fantastic co-pay support program.
Hi Rebecca, thanks for the update. At the moment my skin is a mess, I think though its been predominantly caused by stress at work. The Humira was working fine and then all of a sudden stresses at work started and it seemed to stop working. I have continued to inject myself in a vain hope that it kick starts it into working again. I have been off from work for five weeks now and although I feel better in myself, my skin and PSA are still a mess.
I have a Rheumy appt in May, but despite requesting an appt sooner which has been to no avail I'm just going to have to suffer until then. The problem we have over here in the UK is that our medical system is so medieval that when a little used or known drug is requested it goes to a panel called NICE for funding. If this organisation are happy to fund the medication then your lucky, if they won't then its just tough luck!
My Rheumy nurse has said the next step for me will be to have infusions which I know very little about, any ideas?
Thanks for your advice I will certainly put it too my Rheumy at my next appointment. Wish me luck... Big hugs Xx
Rebecca said:
One word: STELARA. Enbrel and Humira both quit working for me after 6 months each. I was on them for my severe psoriasis. I didn't realize I even HAD PsA until the second one quit working and I was drug-less for a short while. During that short while I found out (the extremely painful way) that I developed PsA sometime during the time period I had been on the drugs (I'm sure now that I have had it in a milder case for years, in hindsight). My dermatologist put me on Stelara, which was relatively new at that time and *not yet approved* for PsA. It's approved for psoriasis and you have to have tried - and failed with - Enbrel and Humira to get it prescribed. It took care of both my psoriasis and PsA, and has been doing so for a year and a half. My dermatologist tells me they are working on FDA approval for PsA too, but I am here to tell you that it** works**. I do fear that it will stop working someday for me, and even wonder now if it's starting to lose some effectiveness, but I do not know where life would have been now without it. This is a massively expensive drug but ... fortunately ... it REQUIRES injection by a doctor in their office. That means it is not technically a prescription. That means it will likely be covered (as it is for me) under a different part of your medical plan. I have no prescription drug coverage, and so Enbrel and Humira (self-administered) would not have been covered under my current plan. Stelara, however, is covered under some type of "medical" cost out of the realm of prescription drugs. And, for the expensive co-pay, Stelara has a fantastic co-pay support program.
Hi Jackie,
Oh, you're in the UK? Well, anyway, I want to butt in and offer one more word of advice ... take it or leave it. ;-) Here in the states Stelara (as I mentioned before) is approved for psoriasis but not *yet* for PsA ... even though it totally works for PsA. So I'm thinking your NICE panel (ironic name) won't approve and your rheumy won't even ask for Stelara for your PsA. Advice? Go to your dermatologist to get the Stelara. Since it *is* approved for psoriasis, your dermatologist can just say it's for that - which it is! Then you'll get the benefit (most likely) of cleared skin and ... oh yeah as a side benefit ... your PsA will get under control. I really have psoriasis bad, but my skin is 100% clear with Stelara with the exception that my head is getting a little bit scaly again. Humira stopped working and so did Enbrel. If you've had the same experience, then you would qualify for Stelara. Best of luck, keep us posted and big hugs back to you! :-) Rebecca
Jackie D said:
Hi Rebecca, thanks for the update. At the moment my skin is a mess, I think though its been predominantly caused by stress at work. The Humira was working fine and then all of a sudden stresses at work started and it seemed to stop working. I have continued to inject myself in a vain hope that it kick starts it into working again. I have been off from work for five weeks now and although I feel better in myself, my skin and PSA are still a mess.
I have a Rheumy appt in May, but despite requesting an appt sooner which has been to no avail I'm just going to have to suffer until then. The problem we have over here in the UK is that our medical system is so medieval that when a little used or known drug is requested it goes to a panel called NICE for funding. If this organisation are happy to fund the medication then your lucky, if they won't then its just tough luck!
My Rheumy nurse has said the next step for me will be to have infusions which I know very little about, any ideas?
Thanks for your advice I will certainly put it too my Rheumy at my next appointment. Wish me luck... Big hugs Xx
Rebecca said:One word: STELARA. Enbrel and Humira both quit working for me after 6 months each. I was on them for my severe psoriasis. I didn't realize I even HAD PsA until the second one quit working and I was drug-less for a short while. During that short while I found out (the extremely painful way) that I developed PsA sometime during the time period I had been on the drugs (I'm sure now that I have had it in a milder case for years, in hindsight). My dermatologist put me on Stelara, which was relatively new at that time and *not yet approved* for PsA. It's approved for psoriasis and you have to have tried - and failed with - Enbrel and Humira to get it prescribed. It took care of both my psoriasis and PsA, and has been doing so for a year and a half. My dermatologist tells me they are working on FDA approval for PsA too, but I am here to tell you that it** works**. I do fear that it will stop working someday for me, and even wonder now if it's starting to lose some effectiveness, but I do not know where life would have been now without it. This is a massively expensive drug but ... fortunately ... it REQUIRES injection by a doctor in their office. That means it is not technically a prescription. That means it will likely be covered (as it is for me) under a different part of your medical plan. I have no prescription drug coverage, and so Enbrel and Humira (self-administered) would not have been covered under my current plan. Stelara, however, is covered under some type of "medical" cost out of the realm of prescription drugs. And, for the expensive co-pay, Stelara has a fantastic co-pay support program.
Humira is NOT a stronger form of Enbrel... Its a biologic but a completley different mechanism as are the Humira is the only one that the body actually builds antibodies against which is why it often is given with MTX on trhe "side" But tes there are still many other options.
The question I have though is a bit different and mostly curiosity... Bio similar are approved for use in the UK, were you getting actual Humira or a Bio similar. Unlike a generic they are not the same just similar. Its not clear (to the FDA anyway) that they perform the same.
I'm not sure if this is a silly question, but everyone keeps saying it "works" for me. What does that mean for PsA? Does it mean improvement of pain or slowing of deterioration of joints? I'm confused???
Hi Achy,
I can only speak for myself, but when I say Stelara works for me, it means my skin is 100% clear and my joints don't hurt. I do still have multiple problems with tendinities here there and everywhere, but my joints don't hurt. Hope that's helpful! :-)
achy said:
I'm not sure if this is a silly question, but everyone keeps saying it "works" for me. What does that mean for PsA? Does it mean improvement of pain or slowing of deterioration of joints? I'm confused???