Saw my rheumatologist today. He was only behind by 1hr 20 mins at 10am. But I’ll let that slide. Recently I’ve had some flares (hips, low back, perpetually sore and swollen fingers and increased neuropathy). I’ve been cautiously watching and hoping it wasn’t what I thought; Humira is ditching me. I already take it weekly with Otezla, Meloxicam, Nifedipine (Raynauds) and Gabapentin (neuropathy in the feet).
Since my diagnosis, the winter months have been hell on my body. Enbrel pooped out on me in November. Humira was moved to a doubled dose in November and…well today I had to decide whether to stay with Humira and add Arava (leflunomide) or to break up with Humira for Simponi. I couldn’t bear thinking about being in a gap during the hardest three months of the year so I plumped for adding Arava and taking prednisone as needed for flares. I’m going to give this cocktail a whirl and if it doesn’t work I will have to make the switch to Simponi and the rheumatologist gave the go ahead from me call and make that change should I not tolerate the leflunomide. That he left the door so wide open for the possible switch to Simponi makes me think he believes I’ll be calling soon and asking for a first date.
I wish it was April or May so I could make the switch in the summer. But then again I feel so much better in the summer (usually) so I wouldn’t realize that things were tough.
Dating is hell! But do you know whats even worse? Being single without a date in site. I can’t even take NSAIDS for another 5 weeks. I’m curious about Simponi too. Hope we hear from some of those folks.
Sorry to hear that Humira is running out on you but good luck adding in the leflunomide even if it only tides you over the winter.
Golimumab (Simponi) has been good to me for two and a half years now. And I take it solo, no DMARDS. When I first started in March 2014 I began to feel the benefit within a couple of weeks, it plateaued without ever getting to grips with my knee pain so a year ago my rheumy switched up my dosage (from 50mg/monthly to 100mg/monthly) and that has dealt with all the niggly stuff. For me, the only downside is it hasn’t helped my skin or nails but I guess that is a compromise I can live with considering the bigger picture.
The dosages are based on body weight. I didn’t “qualify” on weight for the higher dose but for me it’s been a great result having a rheumy who used their professional expertise to try this.
Thanks, Jules. Glad to know that you had a good response–especially that it kicked in quickly. I’d be interested to hear how fast others responded, too. If it’s commonly that quick I might switch now. We haven’t even had our first frost here yet (we’re almost a month later than the average) so this would be the year to risk it!
Well, Janeatiu I am rooting for you! This is the most relatible post in awhile for me. I am noticing Humira loosing effectiveness as well. Almost the same locations and I suffer neuropathy and use gabapentin too. My doctor has wasnted to add something more but tge last med she offered was one with aweful long term effects ( proven 50% highblood pressure and 25% liver probs) so I declined and being unable to tolerate mtx have been looking for reasonable suggestions. Let me know how leufomide works out. If I dont add something my rheumy plans on pulling me off humira and have choice of remicade or arava. Sure hope things settle down so you won’t have to go into hibernation during the holidays.Tame care and please continue to share your journey.
thanks, MacMac. I have the leflunomide in my med drawer but now I’m waffling. I just emailed my rheumatolgist to start the Simponi process. This is the madness of prednisone talking!
Thanks for your message. I’m having second thoughts about adding leflunomide. I’m already taking Otezla (DMARD) and meloxicam (NSAID) so to add another DMARD seems like overkill and perhaps the more sane approach it to bite the Simponi bullet. I just emailed my doc to ask about getting that process started. I put myself on prednisone–just 5mg really took the edge off my aches and pains so I’m hopeful it will get me through until the Simponi kicks in if I start soon. So I guess now I’m waiting on the doctor and the insurance. I can’t cross my fingers today so let’s just breathe and hope instead.
I’m sorry that our stories seem so similar. Like you I didn’t tolerate MTX and sulfasalazine was terrible, too. I’m fortunate, though, that my blood work all seems remarkably normal and unchanged with no liver or kidney problems despite all the meds. Sorry I can’t serve as your leflunomide guinea pig. When I started Otezla it gave me gastrointestinal problems for weeks so I don’t exactly relish the idea of adding a new drug which could have the same side effects–especially going into the competitive eating season! Is Otezla an option for you? It’s a bit spendy but when I added it I did see benefit (after the stomach issues were resolved).
Prednisone madness … sounds more like a wise move to me. I lost a lot of weight on Lef, was told to stop losing weight but despite force-feeding myself chocolate cake and fudge (believe me, the novelty does wear off) I couldn’t stabilise till I stopped it. It’s the only drug I’ve had a real beef with but seems to work well enough for some. I just think if you’re going to try something new then the bio’s a better bet. I hope you get Simponi soon & that it really suits you.
thanks Sybil. There’s always something a little fun about the first few days on prednisone. I feel excited and energetic. Of course over time this changes to brittle and emotionally over-reactive. But I’m enjoying a little spring in my step today!
Enjoy it while it lasts! Was just thinking that a particularly good day makes me go a bit crazy, though perhaps ongoing effects of steroid injection contribute, but today I’ve been out doing a 101 chores with almost hysterical efficiency … it’s like ‘Don’t Stop Me Now!!’
Mmmmm, prednisone, the spring in your step!!! Boy, I loved how a bit of prednisone made me feel. If my doc would’ve let me, I would’ve gotten addicted to that stuff!!!
