I'm wondering about everyone's experience on biologics and the brand of biologic they are taking. I still need to call and see if my health plan will cover me for biologics.
I am also contemplating participating in a clinical trial....but the idea of taking something and not knowing exactly what it is freaks me out. I suspect it would cause a lot of anxiety so I really doubt I will do the clinical trial. Plus they will likely tell me I can't use other things that I use now to help give myself some relief so that doesn't sit well with me either.
I'd love to hear your feedback on the biologics and even the clinical trial if you have any comments to add.
That's a really big question, and everyone will have a different response. You may want to start off by doing a search on this web site on the different biologics. In terms of your insurance, I've had a hard time calling and asking about specific meds, but your doctor's office should be able to find out more easily if you will be approved for a specific med, and will be able to process this.
I have never participated in a clinical trial. By the time I was seen at Rheumatology I really needed relief so would not have done it. My Rheumatology office does all the research on which bios my insurance will pay for. They also fill out the prior auths and then call me to let me know when they have called it to my mail order pharmacy. They also applied to Enbrel and Humira for their co-pay assistance programs when I was on those. I did do some research on each one but ultimately left it up to my Rheumatologist on which one to try next.
Thanks Michael and Stoney. It is a big deal...I have an appointment in 2 weeks. I think i"ll wait and speak the the rheumy about it so I can get the help I need. I agree Michael...I really don't think I can afford to wait either. If I end up with the placebo...then I'll have longer to wait before going on real meds and feeling some relief.
Good luck! What did your doctor decide to put you on? I had a bad reaction to Enbrel, and and even worse reaction to humira… Started Stelara but became very sick and had to quit it for 8 weeks. Back on it, and hoping it works soon.
I have been on humira for two years. It has been working well. I still get occasional flare ups
I can say it has really saved additional damage to my joints.
Best of luck!
I am newly diagnosed so not much experience, but have taken Humira for 2 months. Dramatic improvement in level of fatigue and joint pain. I didn't even realize how bad the fatigue was until I took this medicine! I did have a skin rash initially, but that is now resolved. Only other weird side effect is chapped lips...
Hi Dini, I'm interested to hear how your appointment turned out and if you have started any meds, and, if so, are they working for you? I'm just like you--need a lot of information before getting up the courage to start a biologic! Dini said:
Thanks Michael and Stoney. It is a big deal...I have an appointment in 2 weeks. I think i"ll wait and speak the the rheumy about it so I can get the help I need. I agree Michael...I really don't think I can afford to wait either. If I end up with the placebo...then I'll have longer to wait before going on real meds and feeling some relief.
I have been on Remicade with fantastic results and Enbrel with pretty good results, but just not as good as with the Remicade, I had little to no side effects except the tiredness the day after, but as whole, the Remicade was the best.
I was on Humira and it put me in remission. Then I stopped taking it because it was goign to be $2000 when my deductible started over. I've now met it and am getting back on it. I'm not having flare ups again, so this is perfect timing! I can't wait to get back on it. I was able to work out after a few weeks on it. I can't even think about trying to work out right now!! I LOVE Humira!!! I haven't tried any of the others though, so my opinion is quite slanted and limited. Hope this helps!
Wow ! that is really great to hear. It makes me feel even more confident that the biologics will help me. Thanks so much for sharing. I hope it does as well for me as it has for you :)
I'm with you, Dini, these guys are great! I want to hear how it goes for you....my appointment is June 11. Hoping to start Humira or Enbrel after that.
Dini said:
Wow ! that is really great to hear. It makes me feel even more confident that the biologics will help me. Thanks so much for sharing. I hope it does as well for me as it has for you :)
Hi Dini and everyone. I can also vouch for Humira working wonders for me. My story - 34 yr old man, 3 young kids and wife and last summer I thought I had a sports injury, It got worse, and spread through a number of my joints combined with severe psoriasis and I was eventually diagnosed with PsA sometime around October. I struggled through MTX, steroid injections, leflunomide etc until I was finally granted biologic treatment and my Rheum opted for Humira which I started 8 weeks ago. 4 injections in and ALL of my psoriasis has gone, joints are much better and I am back at work, playing with my kids, even doing some DIY in the garden. All of this seemed impossible a few months back so I am eternally grateful for my experience with Humira. Injections cause me a bit of a rash and the drug can make me a little nauseous but it is nothing in comparison to the pain this miserable disease can put you through. I can't recommend it highly enough.
I also wanted to say thanks to all the lovely people on here who offered me support when I was struggling. If you have any questions or want any advice just ask me and hopefully I can repay the favour in kind.
OMG, so, okay, I was certain I would tell my Dermatologist I'm ready for a biologic (my appointment is tomorrow). I've turned down my Rheumy's recommendations to go on biologics and DMARDs for about 6 years now, hoping the disease won't get worse, but my Ps and PsA got worse. When I read positive comments like yours, Ali Surrey, I'm so ready to get on a biologic and get some relief. But, for all the good results I hear about on this site, there are just as many bad results and people saying they've switched biologics many times, they've taken biologics and Methotrexate together, or with prednisone....and they still seem to be having pain! Today I had a really good day--pain in places, but not unbearable. I don't even bother to take OTC pain meds during the day--usually only at night cuz they help me sleep better. I'm wondering if, because my PsA has been a slow progression, I've gotten so used to dealing with pain and knowing that when I have a flare, it will let up in a couple days and I can deal with the aches and pains I've had for so long.....I only wish I knew I would have positive results from a biologic! I'm such a pessimist!!! Although, I'm trying to be optimistic about the disease and hoping it won't disable me--I can't help but worry that it will--whether I take a biologic or not! What to do??????
Ali Surrey said:
Hi Dini and everyone. I can also vouch for Humira working wonders for me. My story - 34 yr old man, 3 young kids and wife and last summer I thought I had a sports injury, It got worse, and spread through a number of my joints combined with severe psoriasis and I was eventually diagnosed with PsA sometime around October. I struggled through MTX, steroid injections, leflunomide etc until I was finally granted biologic treatment and my Rheum opted for Humira which I started 8 weeks ago. 4 injections in and ALL of my psoriasis has gone, joints are much better and I am back at work, playing with my kids, even doing some DIY in the garden. All of this seemed impossible a few months back so I am eternally grateful for my experience with Humira. Injections cause me a bit of a rash and the drug can make me a little nauseous but it is nothing in comparison to the pain this miserable disease can put you through. I can't recommend it highly enough.
I also wanted to say thanks to all the lovely people on here who offered me support when I was struggling. If you have any questions or want any advice just ask me and hopefully I can repay the favour in kind.
There are types of PsA that are typically slower progressing than others. I don’t want you to give your hopes up, it’s possible that you may only need a biologic temporarily. Less than 10% typically see those results, but if slowly progressing you may be able prevent it from getting worse.
I had severe psoriasis, extremely resistant to steroids and systemic drugs. After a year Stelara even the darken skin where my psoriasis use to be is starting to disappear. I still have a bit of inverse, but that’s to be expected. If it wasn’t for my PsA, I’d stop treatment and see what happens.
Don’t worry too much about people switching biologics. Some people build up drug antibodies. When that occurs the drug isn’t as effective and side effects can occur. That may not be you.
Thanks, again, mataribot. I do need to think positive and not be afraid to begin a biologic.....some people call me a pessimist, but I like to think I'm a realist. When I weigh all the pros and cons, I tell myself if it works--it'll be like heaven, but not to expect it to work, just to hope it will work. Looking back, I've had so many good results from doctoring for different things that were just "killing" me---horrendous back pain, neck pain, foot pain, high bp, histoplasmosis, etc., and each time I trusted the doctors and did the therapy or took the pills they prescribed, I got better. I need to have hope that my life may drastically change once I get on a biologic--I want that sooooo bad. I don't even know what it would be like to have clear skin after having psoriasis for nearly 40 years and being embarrassed about it every day! And now having the pain all over and disfigurement of my hands, etc., from PsA--if I get good results, I'm not super holy, but I will get down on my knees and thank god if that happens! mataribot said:
There are types of PsA that are typically slower progressing than others. I don't want you to give your hopes up, it's possible that you may only need a biologic temporarily. Less than 10% typically see those results, but if slowly progressing you may be able prevent it from getting worse.
I had severe psoriasis, extremely resistant to steroids and systemic drugs. After a year Stelara even the darken skin where my psoriasis use to be is starting to disappear. I still have a bit of inverse, but that's to be expected. If it wasn't for my PsA, I'd stop treatment and see what happens.
Don't worry too much about people switching biologics. Some people build up drug antibodies. When that occurs the drug isn't as effective and side effects can occur. That may not be you.
I have got to Grandma J, say this is the perhaps the first time I have ever heard that despite the known fact treatment is effective in keeping 90% of folk up and moving someone continues to refuse treatment because it might not work.
Martibot is correct about 10% of folks do go into remission (most of those are men) So have got to say it makes absolutley no sense to me to continue in the folly you maybe in the 10% who won't need treatment instead of the 90% who do.
So you might have to change your meds along the way, so what? I change my socks too. Its a part of life. PsA is not going away. Its a part of your life. Incidentally, It isn't only about pain. Its about function. Some peple do have pain, bot they are able to live life, something you have a tough time doing on the couch when your joints are gone, your heart goes flooey, and the costo has control of your chest making it hard to breathe.>