Hi everyone,
There’s been lots of people asking about biologics recently, and a few of the seasoned members have mentioned developing antibodies. So what’s it like? Do your symptoms just get gradually worse - how do you tell if its a long underlying flare (I can get those - last for a month then recede), or if its antibodies?
I can tell because the symptoms increases with time. When I have a flare the symptoms come back more quickly. And I no longer get much relief with each infusion or injection. The fatigue becomes over whelming when the bios cease to work. When I flare I have a week or two where I am tired but with a flare I feel like I am walking in pudding for months. I notice I am taking less trips to the pool and I am not cooking but it lasts for months not a week or two. At this point the Remicade is doing nothing for me so I know it is time to switch.
I do not know that developing antibodies to the biologic was my issue, perhaps, but I recently failed humira after about two and a half years give or take. My symptoms gradually worsened, not so much a flare as my whole baseline just kept rising, more simultaneous issues and no lulls really just kept escalating. I was trying to do PT and would get symptoms kicking up in response to the lightest exercise. My rheumy took one look at me trying to walk to the exam table and proclaimed I was failing humira. My sacroilliitis was the worst it has ever been. When he questioned me about how I had been doing since the last appointment, I realized he was right. I think I was in what my friend likes to call warm frog mode. Things getting progressively worse but since it is gradual you dont acknowledge it until the pots is at a full boil. The thing that made me really realize it wasnt working was that I didn't get any relief following an injection and that was the case for multiple injections. I switched to Cimzia and after the first injection I noticed a difference, not profound, but definitely an improvement. I am hoping the trend continues with each subsequent dose.
I was taking Humira for P, and had not yet developed PsA, or the Humira was keeping it at bay, and a I didn’t know I had a it. Either way, I knew it wasn’t working when I had my first flare. Gradually, I began to have more and more pain with swelling. When it was withdrawn so I could start Humira, the flare went full bore. Owwie.
I tend to have a gradual worsening of symptoms over a series of months.... a steady worsening like dandlyons described.
Thanks very much for all your answers guys. Hopefully I’ve just had a few underlying flares in a row - not getting insidiously worse yet I don’t think.
My main worry is that I’ve started to lose weight again. Whilst I’ve still got a buffer on my BMI (I’m currently a healthy 21.6 BMI - but 6kg lighter than pre-PsA/IBD), Im big framed and muscular for my height, so another 3 kg, and im going to start looking anorexic! Another kg and I’ll head of to the Rheumy so we can start monitoring it. On that note, did any of you actually get tested for antibodies, or was it just assumed because your treatment wasn’t working anymore?
For me, it was assumed. I had been on Humira for 2 years at that point.
For me it has been assumed. I have been on 5 biologics so far and it seems to happen at about 1 year for me on each of them.
I was never tested, it was just assumed.
out of curiosity, what exactly would they test for to know you have developed antibodies (please don't laugh at my total ignorance!)
Not entirely sure, but from a brief stint working in a pathology lab many moons ago (pre biologics), they would probably add some of your blood plasma to the biologic protein and if there was clumping in the solution it would indicate the presence of antibodies in your blood or something similar along the principle that the antibodies will bind to the protein. This is pretty much the way they test for the antigens on your red blood cells to determine your blood group.
Nobody would dare laugh at Our Jane! It is a good question. I am not sure what the test would be called but it would be a type of titer like when testing to see if someone has had chicken pox or mumps. It would be a measurement of antibodies to a specific protein in the biologic. I am not sure how it would be interpreted as in all of us who have been on Enbrel would have some markers in our antibodies but what level makes the biologic ineffective. Is a certain number of them make it ineffective in all patients? There is also the cost. Specialized tests such as this would be expensive and since you need to try the med to see if it works on your PsA what good does the testing do? Insurance is very picky about paying for things that are not of clinical use. When the book on diets for blood types came out we had a lot of patients calling to get their blood type done. I made sure to let each of them know that while I could ask the doctor to order it their insurance won't pay for it without a medical reason for it.
thanks for not laughing!! I'm really interested in this idea that your body creates antibodies to make you resistant to the very drugs that are specifically designed to help you. Equally I'm fascinated by the tipping point at which it is determined that a biologic is no longer effective. Like you both suggest, Ali and Michael Ann, the test sounds complicated and perhaps even unnecessary as there are very clear and cheap ways to find out if the biologic isn't working--like asking the patient!
Its not always antibodies that make the drugs quit working sometimes they just stop. The fact is there isn't a single med that won't lose effectiveness over time or require increased levels to work. When we solve that mystery we can effect "cures"
I guess it's the same in that some bio's simply just don't work to begin with .... I had no luck with Humira but after just my first dose of Simponi I've had some improvement. Did my second dose today and my fingers and toes are crossed that I'll see further improvement. Hope that I may get a few years benefit before it stops being effective.
i was on remicade for about 7 months. i would do the infusion every 4 weeks vs the recommended 8 weeks. it lasted about two weeks then gradually wears off. I was forced to stop the medication as the cost of it was too high it is $850 (thats my share after insurance) every month. It was really helping but not enough for me to continue to pay so much for only two weeks of relief. I am not back to square one.
keep me posted on this medication as I have not heard of it.
Jules said:
I guess it’s the same in that some bio’s simply just don’t work to begin with … I had no luck with Humira but after just my first dose of Simponi I’ve had some improvement. Did my second dose today and my fingers and toes are crossed that I’ll see further improvement. Hope that I may get a few years benefit before it stops being effective.
Simponi is golimumab, I'd not heard of it either before I found out this is what my rheumy was recommending to try next. I had side-effects/efficacy issues with DMARDS (methotrexate and leflunomide) so I assume he proposed this as it can be given as a mono-therapy for PsA although it can also be given with mtx.
24 hours after the first dose I felt as if I'd been run over by a truck but this hasn't happened with the second dose and today, just 48 hours in, I definitely feel better than I have done - less fatigue and less joint stiffness. Hope that the only way is up! After two years of ineffective meds I truly feel that that I deserve a change in fortune :-). Desperately want to get back to work ........... I'm self-employed so no working means no income!
Silverfox said:
keep me posted on this medication as I have not heard of it.
I am hoping for some advise on biologics.I've had PsA for over 20 years, and have been on Enbrel for 6 years. I saw a new Rheumy in Feb and she was very dismissive of my symptoms and complaints, suggesting I may not even have PsA.
When I saw her today she was totally different. After reviewing all my test results and many x-rays, she seemed surprised I can even walk. LOL
The enbrel is working about 80 per cent as well as when I started it, and she wants me to switch. (I guess she's right, I just hate new meds) She offered: Humira, Remicade, Cimzia.....or Stellara. She said it my my choice (assuming my insurance covers it), but she pushed me toward Remicade (I.V.) I think I'd rather have a weekly injection than a bi monthly I.V. but I need information.
I've tolerated the Enbrel very well and hate to leave it, but can you guys tell me about your experiences with these other meds and give any advise that might help Thanks to you all.
Diane
Thanks for asking for the rest of us Janeatiu! :)
janeatiu said:
thanks for not laughing!! I'm really interested in this idea that your body creates antibodies to make you resistant to the very drugs that are specifically designed to help you. Equally I'm fascinated by the tipping point at which it is determined that a biologic is no longer effective. Like you both suggest, Ali and Michael Ann, the test sounds complicated and perhaps even unnecessary as there are very clear and cheap ways to find out if the biologic isn't working--like asking the patient!