Biologics - Enbrel, Humira, etc.?

[kdow]

I’ve been on methotrexate for Psoriatic Arthritis for some time, and it’s just not doing the trick for me anymore, so my doctor is encouraging me to try one of the biologics, so I figured I’d just post here to see if anyone has experience with them and what they think. (General experience, but also horse specific - like do you find you get more infections than you’d otherwise expect even in someone on a biologic, from being around stables with all the dust and everything? That kind of thing.)

Also, with respect to Humira specifically, I saw a few places that weight gain can be a side effect, and I’m wondering if anyone has had experience with that. Due to the arthritis limiting my activity levels, I am already heavier than I am really comfortable with, and heavy enough that some people would start one of those “omg, she shouldn’t be riding” train wrecks (because I am not huge, but neither am I 125lbs) and if I gained significant weight as some people report, I would definitely be heavier than I would feel comfortable with for riding, especially as I’d like to learn to jump.

So, any experiences, information, whatever, greatly appreciated.

[Marshfield]

I take Enbrel for RA (also labelled for psoriatic arthritis) I feel mostly normal now. Burns like a @@@ when I inject it, but only for about 30 seconds

[RMJacobs]

I’ve been on Humira for RA since spring 2003, and it made a huge difference in my life. I had given up horses and took them up again (riding instead of driving, but still, it was a wonderful, positive change). Humira not only has prevented further joint damage, but it also addresses the fatigue better than anything else I’ve been on.

The only time I have an issue with infections is when I get a cold. That will almost always turn into a sinus infection and bronchitis. I get maybe one of those bouts a year, usually when I’m exposed to something from outside my usual world, and otherwise I don’t pick up common illnesses or infections. I do get any vaccination going–flu, pneumonia, boosters for childhood diseases, tetanus, you name it. I haven’t had any of the illnesses for which I am immunized while on Humira.

I need to inject Humira weekly instead of bi-weekly and I am also on methotrexate.

I did not know that weight gain is now considered a Humira side effect. Seems like everything I do causes weight gain. I think I’ve gained about 30 pounds since I started on it, but that was starting from a bad place–it’s not like I was previously thin.

The only other biologic I’ve been on is Remicade, and I seriously crashed and burned on it with a massive allergic reaction. I’ve been on all the non-biologic DMARDs at one time or another.

Let me know if there’s anything else I can tell you.

Rebecca

[rcloisonne]

I’ve just started Benlysta, a monoclonal antibody biologic, for the treatment of systemic Lupus. It’s the forth drug tried (including cytoxan) over the last four years in an effort to reduce the amount of prednisone I’ve been on. It’s given IV every two weeks, then once a month. Not sure it’s effective yet. So far the only side effect has been some nausea which is being treated with a Zofran.

Good luck with your treatment. Biologics seem to be the future for treating many diseases. They are uber expensive too. Thank the stars for insurance!

[Doberpei]

I took Humira for a few years, and never really got any benefits (it also burns like fire going in!). Methotrexate works for my joints, but after a while, did nothing for my skin (I’ve had psoriasis all my life, am now 53). My psoriasis varied from my scalp, elbows, ears, nails and spots on my legs, to completely covering my legs and lower arms. I was diagnosed with PA just before my 40th birthday. I am on the highest oral dose of the methotrexate, and for a while, we even tried injecting a higher dose. While it doesn’t burn like the biologics, it was difficult. You need a wide needle because the stuff is so thick. When I was a kid, my dad had cancer, and my mother used to joke that she wished she could steal some of his methotrexate, because it made his psoriasis go away! It did for me in the beginning, but it comes back.

I also tried Simponi for a while, but didn’t see any results.

By September of 2014, my skin was so bad, that from the waist down, I was completely covered, my arms were covered from the elbows down, and I was pretty miserable. My rheumatologist got me into a study for Xeljanz, and though it was a slow start, my skin has cleared completely. I just found two new spots, so I am hoping my body doesn’t just get used to the medication like it did with the methotrexate.

Other than one brief flare of my joints about 4 years ago, my joints are completely handled by the methotrexate. It took about 6 months from the onset of joint pain until I felt my joints were managed (today, my joints feel much better than they did when I was in my 20s and 30s, when apparently the PA was really doing all its damage. I had always felt my joint pain was a result of numerous broken ankles and a cracked kneecap. I did not know PA was even a disease - though I do have two aunts with RA, so I knew RA was a possibility.)

As for weight gain, I eat, therefore I am fat. But I did manage to lose weight when I was on prednisone, so weight gain by medication is not a given.

Keep in mind that everyone is different, and you might have to try a lot of different medications.

[aqhadreamer]

I’ve been on a lot of biologics for RA.

-Embrel for just over a year (had some issues with growths on my thyroid that may or may not have been related so all doctors agreed to stop Embrel just in case). It helped me function much better than just the methotrexate but I was still dealing with a lot of fatigue.

Remicade- Just over 2 years, found it helped a lot in the beginning but joint damage was still occurring so we changed again. (However this drug finally made me feel well enough to start riding again!)

Orencia- Just over 2 years. Helped a lot! Bought a horse and was able to get back into showing competitively. However the 24 hours following the infusion were tough, flu symptoms (feverish and throwing up) and major tiredness. We thought that it would get better in time but after a year of dealing with a once a month flu we all had enough, We also think that this drug did some damage to my lungs and I now carry a puffer, temperature changes and some exercise can cause asthma attacks now. Special side effect - bugs couldn’t stand the smell of me or my blood! Biting insects would stay away from me but people and animals didn’t seem to sense any difference.

Actemra - Currently on this one and seems to be going ok. Joint damage has stopped progressing (up to this point I’ve lost function of both of my wrists and part of my foot) I get a bit of a sinus headache and don’t feel great for about 12 hours post infusion but I can function which is way more than I was able to do on the Orencia.

I’m still on a low dose once a week Methotrexate

Side effects with all of them - any cold will turn into an infection - sinus/lung ect. I’ve been really lucky that any cuts in or out of the barn heal just fine but I just tend to get really sick really fast when I pick up a cold. I got tonsillitis in January that went from a sore throat to surgery consult in less than 3 days and with 4 different doctors. The first three apparently didn’t understand what immunosuppressant medication means. By the time I got home and to my family doctor I got rushed to the ER and put on IV meds. I’ve also become allergic to many things that I wasn’t before I started the biologics. Things like cats, dogs, pollen, some metals and a lot of scents. Apparently its not un-common but no-one mentioned it to me before I started

[Anon40something]

I have been on Humira since January for Crohn’s Disease. I was leery of it for years due to the dangers and possible side effects, but now I wish I would have started on it 5 years ago. I’m getting my life back!
I’m very grateful for Humira. The shot does burn, but it’s still easier than IV therapy. I haven’t had any side effects other than a mild reaction at the injection site, and I picked up a mild fungal infection on my wrist after rescuing a sick kitten. It was treated with an antifungal cream easily. I’ve only been on it for 6 months, so can’t answer to any of the longer term effects.

[West_End_Girl]

I’ve got rheumatoid arthritis. I’ve been on Humira, I’m currently on Enbrel, and I’ll be switching to Cimzia as soon as my insurance approves it. I wish I’d started a biologic sooner. The side effects, for me, have been pretty much nonexistant. I’m still on 25 mg/week of methotrexate - the fatigue from that is way worse than anything I’ve noticed from any other medication. I maybe feel a little bit more tired/blah the day after taking my biologic, but honestly, it’s hard to tell with this disease what’s causing what symptom. It could be the medication, the weather, what I ate, where I am in my hormonal cycle, how much sleep I got, stress, etc. etc. etc.

I was initially scared away from biologics by the increased risk of certain cancers, but I’ve since read elsewhere that RA patients are at a higher risk of developing those cancers anyways. Even if that’s not the case, I’ll take a slightly increased risk of rare cancer if it means I can slow the disease progression.

The biggest problem I’ve had with biologics is secondary failure - they’ve worked initially, and then stopped. These are all TNF inhibitors - if/when the Cimzia fails, the plan is to try a different class of biologic altogether.

So far I’ve been able to do at home injections. The Enbrel burns more than the Humira did, and I get more of an injection-site reaction (according to my rheumy, that’s due to the preservative in the Enbrel.) At first the injection site reaction was a big, itchy welt, though it has gotten better. I’ve found that icing my thigh where I’m going to inject for 10-15 minutes beforehand helps a bit with the sting. But, I mean, I expect my horse to suck it up and deal with it when I give him Adequan - and he doesn’t even understand what’s going on. I’m definitely less afraid of needles and injections than I would have been without a horse!

I did have walking pneumonia for a couple of months this spring, and a bile duct infection caused by gallstone obstruction. Gallbladder problems run in my family, so that one seems unrelated to the medication. The walking pneumonia undoubtedly was, although the methotrexate was at least partially to blame, and, it turns out, can also cause lung scarring. :eek:

[West_End_Girl]

My last reply was a little bit doom & gloom - sorry, having one of those days. It ain’t all bad! I’m just feeling frustrated getting my own health sorted out. I just wanted to add that if you’re having issues with fatigue, get all the usual bloodwork checked - ferritin & anemia tests, vit D & B12, full thyroid panel, cortisol, etc.

[cayuse]

It’s OK West End Girl. Sorry to hear you are having one of those days., but I can sympathize. I just started methotrexate yesterday as nothing is working for my Psoriatic Arthritis. Been on it before, but I forgot how the side effects were. I doubt I’ll be going for week number two with it.
I had pneumonia when I was on biologics, too. It took four months to get diagnosed, they kept telling me I had a cough from acid reflux lol.
Anyhow, hope your day gets better.

[RMJacobs]

Cayuse, have you tried injectable methotrexate? I had a horrible time with side effects from oral mtx, but I’ve been on the injectable for a long time now and have next to no side effects. No nausea at all, which is wonderful.

Rebecca