When it comes to health stuff, there is never a good time for things to go wrong.
After my latest round of blood work, my liver enzymes are back up, and my white blood cell count is down, again, so my rheumatologist is recommending I stop taking Methotrexate for good, and try Humira.
(At least I don’t have to worry about the MTX shortage anymore…)
Medication changes make me really nervous, and knowing that it will take several months to kick in, I worry about the period of not feeling good that is likely to ensue. I kind of thought things were getting to a more stable place, but I guess not.
It’s a bummer because MTX worked so well in helping my arthritis symptoms, but ultimately, the things it was doing in the background were not so good.
And I guess we’ve done this dance with MTX long enough. It was the same when I was on the oral form; off, on, up, down. The injectable form definitely had less noticeable side effects, but seemed to not work for my overall health.
So my rheum told me to do some homework on Humira, and let him know if/when I want to start it. Right now, I can’t be on nothing, because I won’t be able to function at a very high level. And I guess I have to be willing to try everything once. I can’t rule it out until I’ve tried it, although many of the things I’ve read about Humira are just downright scary.
Humira is a biologic, unlike MTX, which is a DMARD (Disease Modifying Anti-Rheumatic Drug). Biologics actually change your DNA. That’s pretty scary, right?
And people say the injection hurts like all get out.
I feel like I had just gotten used to the MTX injections. I had figured out a way to do the shots myself, I had come to terms with this once weekly routine, and I had made peace with the fact that this ritual was helping, rather than hurting, me.
And now I start at the beginning again. With a new medication, and all that comes with it.
While I’ve heard about these medications from TV commercials, and patient bloggers who are on them, I haven’t paid that close attention to them. I was hoping that things wouldn’t have to get to this point, to be honest. But clearly MTX is neither a temporary nor permanent solution for me.
And I think we’ve followed the natural progression of things. First I was only on Prednisone, and then we added in Plaquenil. Then we tried CellCept. Then we got rid of CellCept, and tried oral MTX. Then we got rid of Plaquenil and added Quinacrine. And we moved from oral MTX to injectable MTX. And I was hoping that the Flexeril-MTX-Prednisone as needed-Quinacrine regimen would work.
But no such luck. So here I am, finding myself at the door to the biologics, which are really my only hope at this point.
I hate to be in a situation where I feel like meds are my only hope. I wish it weren’t that way. I wish I didn’t have to say that in order to be functional, I need the meds.
And I wish that these decisions were easier. I have gone back and forth about this, and I’m still thinking that I might chicken out. But what will that do? Only prolong the agony?
I need to find a medication regimen that works, and that doesn’t try to kill me in the process…
I hate this game, but I have to be strong, put up a fight, and win.
I had a former rheumatologist (fibro) that had me on all your former medications, plaquannel, methotrexate, cellcept and many more.I stayed with him for a few years but didn't feel comfortable with his behaviour and treatment. When i switched dr's in NYC, my new rheumatologist was aghast that methotrexate was being used in any other form other to save an organ i.e. transplant. It's very controversial, yet I felt good on the drug too. I take savella and it has helped, of course it's not perfect. what is? feel free to ask me questions if you want. I wrote a lot about methotrexate in my blog a while back. good luck. Laurie at hibernationnow.wordpress.com
ReplyDeleteWhy not Enbrel? Both Humira and Enbrel are a tNF and injectable. Just curious as most ra docs go with Enbrel first since it has been on the market longer. Good luck with the Humira if you decide to use it. And if you go online there are alot of suggestions in regards to the injection...how to help if it hurts. I did both Enbrel and Humira at one time. Got to be a pro at the injecting thing but when I did them they didn't have the pens like they do now.
ReplyDeleteI've been taking Humira for about 5 years. Stinging is short-lived and pretty minor for me. No site reactions, and I do feel better. It's the sense of well-being that is the best
ReplyDeleteAnnette
Hey Leslie, I read and really appreciate your blog! I have heard of Humira before - I have Crohn's disease, and I know that Humira is a fairly standard treatment nowadays for that. I haven't taken it myself. But I was just wondering if maybe it would be helpful to search for some Humira success stories online, even if you broaden your search to include Crohn's patients rather than just lupus/RA patients. (Sorry if I am making ridiculous suggestions... I'm just trying to help somehow and I will not be offended at all if you don't find my suggestions helpful and/or don't try any of them, because I know what it's like to be on the other side and have friends seriously hold it against me when I disagree with their advice or don't do what they say!)
ReplyDeleteAnyway, I guess one thing I'm trying to get at is that it is obviously important to be aware of the risks and side effects to watch out for when starting a new treatment, and to be prepared for other aspects of what you will experience (such as the injection). (Again, I have no idea if I'm being helpful or not...) But, since you are very good about researching and preparing for the risks/side effects and mentally preparing for the difficult aspects of taking the drug (which again, I thin is a good thing! I'm not suggesting you are just worrying unnecessarily!), maybe you could try to find out some information about possible positive outcomes and patient success stories as well.
On another note, have you seen the new "15 questions/ask an expert" article that was just posted on the LFA website? This month's topic is clinical trials. Some of the responses are kind of general and repetitive, but I still found it interesting and helpful for me. It just would be nice to also hear about some more specific scenarios and detailed patient experiences. Anyway, I guess I mention it because it sounds like you might feel like you are running out of options. I hope your doctor is able to help you find a medication/combo among the current options that gives you relief. It sounds incredibly tough to have gone through multiple medications and combinations of medications without experiencing the benefit of a nice long period of remission. I'm not trying to minimize that at all! I don't know if mentioning this helps you hold onto a little more hope (even though it doesn't make up for the time you've lost and the suffering you've endured), but I recently met a woman with lupus who participated in the clinical trials for Benlysta and it was awesome to hear her story. Even though the statistics might not sound all that encouraging for this new med and when I read the initial news articles about it I kind of poo-poo'd it in my head, she was and is one of the success stories. She's a real person, someone I met through a support group, not just some glossy ad on the drug manufacturer's website:)
OK, I'm rambling. I don't know how to comment on blogs:) I usually just read them and have a bunch of random thought in my head about them, and never try to compose any of it!
It is hard to find the best treatment plan for any condition it seems. I can understand the fear behind using Humira since it is a biologic. I get kind of freaked out about my IVIG when I think it is made from thousands of people's plasma. eewwwwww. But it works. I'm in the process of finding a new migraine prevenative and I just want one to work. The nortyptyline was working some, but it caused really bad side effects. Drat. Sounds like the MTX was doing the same thing. Hang in there, things will eventually work out.
ReplyDeleteHas anyone who has been on Humira ever had a shot of Heparin? I had one of those in the hospital and those sting a lot. Is that what the Humira sting is like? If so, I think I can handle that.
ReplyDeleteJust FYI--Humira does not change your DNA. It does change the dynamics of your immune system however.
ReplyDeleteI haven't ever had a shot of heparin, but I've been on Humira for coming up on a year now. Unfortunately, it's not working well enough for me so I'll be switching to Enbrel.
ReplyDeleteThe Humira shot does sting, because of the different pH level than our bodies. What both my boyfriend's father (Crohn's) and myself (JRA) do is ice the injection site for about 20 minutes or so while letting the pen sit out and warm up a little bit. Because of his stomach issues, David injects in his thigh. I did for a while too, but have enough muscle there that it really hurt like 10x worse. I would limp for a few days afterwards. A friend convinced me to aim for the stomach instead. I have plenty of fluff there and it is really mild stinging now - more like a couple bee stings instead of a knife now at least. I think one of the things people don't like about Humira - and maybe why the sting can be so bad - is that the pen is a spring loaded mechanism. You push the button, hear a very loud click, and a needle goes about half an inch or so into the skin very quickly.
I tend to shoot up right before sleep, because then any side effect like GI upset aren't really evident and I sleep through it. Injecting in the thigh, I couldn't sleep through the night. My leg would actually cramp up and then feel like it fell asleep. The worst with the stomach is if I inject too close to where pants will rub, or if I hit a vein. I felt effects really quickly, but they lessened within not even four months and have gradually disappeared for me.
Good luck in your new adventure! I hope that you get some relief with this wonderful medication!
Leslie: I was on Humira for 5 years and felt great! It worked the best of all the biologics. I used it back when it was in syringe form and only got to use the autoinjector for about 3 months. Now I am on Simponi. I felt better in just a few weeks and everyone is different so don't worry about how long it takes....all the best. Nan
ReplyDeletelivingwithra-nan.blogspot.com
Okay, I need you all to weigh in something else. Thigh vs. stomach injection. I use my thigh for MTX. Doing it in the stomach freaks me out. It also bothers me that you have to hold the injection sideways. I could just be making myself crazy, but I'm wondering if one is better than the other. I know everyone is different, as is evidenced by how many varying opinions there are about whether the sting is really bad or not. Thanks for all the support and advice to help me go through with this latest adventure!
ReplyDeleteI just took my second dose of Humira today. I injected in the thigh - it wasn't too bad at all - maybe a bee sting, but I haven't been stung since I was a kid, so I don't even know... Put it this way, I said ow but I didn't tear up or grit my teeth or yell. I was nervous because last time I did it in the doc's office and I didn't want to screw it up and waste the medicine, but it was fine.
ReplyDeleteIn terms of efficacy, I think I started to feel some impact this past week (meaning it took a week plus to have any effect), but it's really small at this point. I just feel more able bodied it general - less wiped out, sore and swollen. I am not 100% though - but I'd be surprised if it worked that well that quickly.
Oh, and I'm taking Humira in conjunction with metho, plaquenil, and prendisone... Sigh. A year ago, it was just the plaq and it was working well, but everything changed.
You may decide not to take Humira for any number of reasons, but the shot isn't bad at all. I did let the drug come to room temp first (20 mins out of the fridge) because my nurse said that makes a big difference.
Hi Leslie,
ReplyDeleteI haven't taken Humira but I've been on Enbrel for 10 years. I tend to switch back and forth between the thigh and stomach, although I find the thigh much easier. The skin is not as sensitive and it's easier for my hands to hold the needle that way. I switch to the stomach occasionally because if you always use the same spot, I think you can end up building up a fair bit of scar tissue which can make injection and absorption more difficult. I'm with you on the stomach thing, though - I much prefer the thigh.
Best of luck if you decide to give it a try!