Ok, sulfasalazine was a no-go, hydroxychloroquine has stopped working, and MTX was an allergy.
So, sooner than expected, I’m going to be going down the biologics route - next month, it seems. But, I’ll be honest, I haven’t done much reading about them at all, and there’s so many of them, there doesn’t seem much point at this stage. But are there things I need to ask the rheumy? Or tell the rheumy? What side effects I’ve read about seem much much milder on a day to day basis than the other drugs I’ve tried - is this the general feeling here too from people who have taken them? And by those side effects I mean nausea, vomiting, running to the loo, etc. I know there are problems with infection and liver etc, but they’re not so much the day to day issues, if that makes sense.
I’ll give my usual plug for Enbrel. I think Enbrel and Humira are the oldest biologics. Enbrel is a once-a-week injection* and Humira is every other week. *If you have moderate to severe psoriasis along with moderate to severe psoriatic arthritis your dermatologist can order 2 injections per week of Enbrel to start off (for the first 3 months). That’s what I did and it worked extremely well for me!
No liver concerns with these biologics. Your health history is very important. I had histoplasmosis about 15 years ago and that was a concern. An X-ray of my lungs had to be examined by a pulmonologist to make sure the lesions left behind didn’t look like active disease, and luckily they didn’t. You’ll also be checked for TB. I worried so much that taking biologics would weaken my immune system but during the 3 years I’ve been on Enbrel I had two mild colds and strep throat once, and that all happened within the first 14 months. I’m not a perfectly healthy person, but I’m a lot better off without about 80% of the PsA and psoriasis I used to have. It makes it easier to deal with my bad feet, ringing ears, vision problems and heart trouble–all secondary to PsA, I think!
Have fun deciding–I imagine your doctor will suggest either Humira or Enbrel–no matter what you choose, good luck!
I am on Orencia and have been for almost four years. It has been amazing for me. I got off crutches and can walk without assistance. I do a once weekly injection. I am on a patient assistance program and receive the medication for free. It took about six months to really work and that required some patience on my end. It has been prescribed off label for me, but I believe it is approved for PsA now. Previously I was on MTX, Enbrel, Humira and Remicade. All of the previous meds quit working in a year or two, Orencia is still going strong!
Now with me,I too have allergic reactions to sulfa and all the other beginning things. Was on Enbel for a little while but after two rounds of pneumonia which put me in hospital, the rheumatologist put me on Otezla which seems to be helping for now.
Thank you for the comments and replies which are, for the most part, reassuring. Otezla has only just been passed in the NHS, I believe, and is still generally avoided because of cost unless it’s an all-else-fails scenario.
Sure, darinfan! You’ve got it pretty much figured out. Day-to-day side effects tend to be minimal, while effectiveness for most is better than the regular DMARDs. What’s not to love? The expense … unless you have a great insurer.
Keying “biologics” into the search/magnifying glass feature will give you enough reading to keep you out of mischief for quite a while.
My personal experience was pretty typical, I think: it took a good three months before I could say “it’s working”. And it did work very well, especially for my aching, energy levels and my depression. It stopped (or drastically slowed) the progression of my joint damage. The only side effect (if you can call it that) was a large red itchy patch wherever I decided to inject.
Although it took me three months before I could say it was working, I knew almost immediately that it was going to work from the strange fleeting little bursts of energy that I felt soon after my first injection. Hard to describe, but I knew something was happening. Others have had the same experience.
I had a slow, steady improvement from months three to nine or so. I don’t know if that was an effect of the biologic, or whether it was the effect of all of the “feel better” things that the bio allowed me to do, such as exercise.
My first bio lasted almost two years. I’ve now been on my second bio for almost two years and it seems to be holding. Fingers crossed it continues to work for a good while longer!
For me, darinfan, there have been no side-effects whatsoever … it was only the DMARDS that had me feeling rough in all the ways, and some, you describe. I’ve now been on bio’s for nearly four years (Humira - three months or so, Simponi just over three and a half years).
You’re in the UK and the NICE guidelines state that treatment should start, where possible, with the cheapest biologic which is still, I believe, Humira. So I suspect your rheumy will probably but not definitely start there. Some people get quick relief, more within three months but Humira can be a slow burner and my current rheumy (who was involved with the development, I believe) feels that six months is a fairer trial period for it. But just be aware that your rheumy department (and I know this because they were mine way back when) are a bit too swift to pull the plug at three months. If they do that you are then in the territory of them having to submit an individual funding request to the Health Care Trust for you to have another bio. They apply a very narrow and not totally accurate view of the NICE guidelines.
I’m just giving you the heads up here so even if you’re not bouncing around like a spring chicken at three months don’t blow it off if you have some improvement or they have been able to measure improvement in your joint count. When I went for my review, I think it was 14 weeks in the end, I wasn’t spring chicken like so subjectively declared it a failure … they pulled the plug and left me with no treatment at all. Turns out, so I’ve subsequently discovered, there was enough clinical evidence in their joint count for me to have stayed on it for at least a further three months for it to show it’s true worth (or not).
If I was travelling the same journey again, I’d get a copy of the joint count diagram so that I was measuring the same thing they were and could objectively assess any changes. But I’m much more knowledgeable now than I was way back then, both about PsA, the treatments and my own body. My expectations were not managed … I thought I’d be a spring chicken again because no-one told me it could be otherwise. You’re much more enlightened that I was so you’ll be fine.
Thank you for all the comments and info. I am in London at the moment so don’t think I am not grateful for the input, but my pudgy fingers struggle to write with the phone!
I believe that is correct, but I’ve never taken MTX, so I’m not positive. I take Enbrel (which is a biologic like Humira) and I’m barely monitored for it anymore. They’ve never checked my liver and I’m pretty sure they check your liver when you’re on MTX.
Hi darinfan. My first RXs were sulfasalazine (bad stomach, headaches) and mtx (even worse headaches) and those months were miserable because it was all side effects but no benefits. For me at least. In February I started Enbrel and now I have a lot less fatigue, stiffness, and overall pain. I still have SI joint pain but it is noticeably diminished. I may have had low grade headaches the first month or two on Enbrel. I do notice that cuts take a little longer to heal. I don’t think I’ll get a tattoo on Enbrel. But I’m not catching colds or the flu. Traveling with the sureclick pens has been easy enough. I’ve had one injection that looked bruised up the next day but the rest have been clean and uneventful. My CRP has come down. It wasn’t the miracle drug I was hoping for, as I still have some SI pain, but I have a good quality of life compared to what I had before my diagnosis and before switching to Enbrel. Hope this helps a little.
I feel like I’ve had really good results from Enbrel…the stiffness was completely gone within days of starting it…however, my back “went out” 6 weeks into taking Enbrel. Someone on here mentioned probably because I overdid it feeling so good from the Enbrel, and my back had damage from all the years prior not treating my PsA…my SI joint slightly shifted also, and I ended up with sharp pain down my leg–it felt like my leg was being filleted like a fish! That all fizzled out after several months. My feet are damaged and painful…but I still think Enbrel is working…all those other pains have been from damage, I think. I’m always cautious now about lifting, etc., don’t take any chances with my fragile body anymore!
The thing about the biologics is that they are very carefully targeted to “deal with” one particular inflammatory factor in your body. In the case of Enbrel and Humira, that’s something called TNF. Because it only acts on that protein (I think it’s a protein, but I’m sure tnt will correct me if it’s not), side effects are less likely that with other medications that have a more “random” action.
Kind of the same as the difference between a sniper’s rifle and a shot gun.
Biologics are the gold standard for PsA treatment because they work for a lot of the people who try them. I once asked a Rheum resident why she would choose a specialty where everyone is in pain and everyone’s incurable. She said that she couldn’t have done it before the advent of biologics: this new class of medications make it possible for her to help people have quality of life despite their disease.
Thanks Seenie. I had problems with my jaw this week, which hasn’t been fun, so I’m really hoping things work this time around. Am probably due for a break!
I am using Humira and have been for about 4 years. It is the only drug I have used so I cannot compare it to anything else. To say it is life changing is a gross understatement. It does not work on skin symptoms for me but for treatment of joint problems my life went from being effectively crippled to being able to coach my son’s little league team, ride a bike and swim. I have to get checked for TB once a year and my rheumatologist just has my GP send my annual bloodwork over to check on liver issues.
For some people it’s very good. For others, it’s simply amazing.
I’m not sure this observation holds water scientifically, but my sense is that starting the bio early in your “career” gives you a better chance of “amazing”. How long after your start of symptoms (not diagnosis) did you start using Humira?
I thought I was the only one having jaw problems! My left jaw will get very sore and pain and hurts to close my teeth. I’m not sure my doc thinks its from the PsA.