I'm on my first biologic, and doing well. But I know that many of us have, for various reasons, switched horses.
So dish ...
What biologic were you on, and how long were you on it?
Why and when did you discontinue?
What did you switch to, and what was it like to make the switch?
How are things now?
OK, let's hear your stories!
I was on Enbrel --- not sure of how long - a year and a half maybe two years? Wow- no concept of time anymore! LOL It was doing its thing, and then my SI joints started bothering me and just got worse and worse.
I switched to Remicade, and it was life-changing. I put my mobility devices in the closet and started hiking again. Amazing. The time in between stopping Enbrel and the Remicade taking effect sucked, but that was to be expected. I'd already gone fairly far downhill by then.
Just as my rheumy and I were talking about an increase in inflammation, pain, and symptoms after I maxed out on Remi dosage/timing, I started having neuro symptoms and was taken off Remi and all tnf meds until the neuro tells me it wasn't related to the Remi. Not sure what rheumy will put me on if I get the ok, but fairly sure it will be Humira.
After a brief stint on mtx I switched rhuemy and meds, I went to Enbrel. Life went from sucking like a black hole to hey, not nearly so crappy! Yay! I noticed improvement after just a month or so. Then my immune system musta decided it wasn't going to take any of Enbrel's crap, and "adapted" around 4 months after starting. After that happened the remaining shots didn't do a thing at all, other than make my leg hurt, after a total of 7 or 8 months I think. My new rhuem said that it was up to me to try Humera or Remicade, but felt with the severity of my symptoms that the remicade would be better, lasting longer and with luck would also be easier for controlling things. I switched just shy of a year ago, and at that point I wasn't sure how much long I'd be able to continue working or doing even everyday tasks. I figured it wasn't going to make it worse, and needed to do something.
Remicade is a friend of mine! I noticed marked improvement by the time I was on the third loading dose. I was hoping to be able to go the 8 weeks between infusions but that wasn't to be, and now get it every 6 weeks. I'm at about halfway to max dose, just went up a bit this last infusion.
It's changed my life, I'm endlessly impressed at how much a medication can impact how I feel for so long. I've gone from hobbling around, worried my next step was going to be needing a cane, to being able to do pretty much what I want. My fatigue has drastically improved (but it could also be due to a change at work) but I can do so much more. I wear myself out being busy, and still get tired more rapidly than years ago, though I can say I feel leaps and bounds better than I did a year ago.
Right now a week or two before my infusion I can feel it's wearing off, and normally the few days just before start to really suck. Infusion day is like a holiday, time for drugs! And by the following day it's like a night and day difference. It's great, I try to plan things so they fall in the 30 days after infusion, and not as much in the last 12. Sounds dumb but it works!
It's nice to hear how well you people are doing on Remicade. In the U.S., as far as I know Remicade is the only biologic covered by Medicare. So, if Enbrel holds out for me until I'm 65, I don't think I have any choice but Remicade. I realize Enbrel probably doesn't pack much of a punch but I like it because I have no SEs and if I catch a virus or something the Enbrel isn't lingering in my body preventing my immune system from fighting off the "bug". That was a big factor in my choice of biologics.
I'd like to know if there are common SEs with Remicade, or if people on Remicade are more apt to catch viruses or bacterial infections. Nym, why was Remicade suspected to cause your neurological symptoms? Has it been known to cause these types of problems?
Judging from how a lot of people describe their symptoms, I don't think I have the severity of the disease. I have had foot pain and neuropathy in the past that I would often say I was sure it couldn't hurt any more if someone took an axe and chopped my feet off! Or the unrelenting tendonitis in several places, or the constant weakness and fatigue, or the psoriasis and, oh, the ugly fingernails. But I've seen pictures of disfigured hands and really severe psoriasis, and compared to that I'd say my disease is moderate.
So, I consider myself lucky, and I'm hoping Enbrel is strong enough to carry me through the next few years. But, if it doesn't, it's so good to hear about others' good luck with the different biologics!
I was on Humira September of last year. The first month no reaction. Second month, I noticed that fatigue was happening a lot. The third month my hands and wrists got so inflamed,I could barely use them. I started to get sores that wouldn’t heal. Called my Rhumy ,she took me off Humira. I have recently got Humira out of my system,and reduced my pain by half. I’m going to another Rheumy in two weeks. Hope something can help.
Oh dear, that sounds awful: taking the meds and feeling progressively worse. Good luck with the new doc!
Tired of pain said:
I was on Humira September of last year. The first month no reaction. Second month, I noticed that fatigue was happening a lot. The third month my hands and wrists got so inflamed,I could barely use them. I started to get sores that wouldn't heal. Called my Rhumy ,she took me off Humira. I have recently got Humira out of my system,and reduced my pain by half. I'm going to another Rheumy in two weeks. Hope something can help.
I was on Enbrel for a few months, but it stopped working rather quickly and I had a short (because of insurance) run on Cimzia, now am on Humira- since October. Humira seems to work much better for my axial symptoms, but Enbrel's initial, brief effect was more on my fingers and toes. My rheumatologist is thinking Remicade is probably the next step, but we'll be waiting a couple more months- I really like how much better my hip and back feel with Humira and I don't want to mess with it!
I'm on Stelara. It's taking its time to work. My fingernails are way better. It seems to wear off 1 month before the next dose. But I have only been in it since July, 2014.
I'm hoping for the best for you Seenue! :-)
Thanks, Cheryl! I'm hoping for the best for you too.
Cheryl (CLR) said:
I'm on Stelara. It's taking its time to work. My fingernails are way better. It seems to wear off 1 month before the next dose. But I have only been in it since July, 2014.
I'm hoping for the best for you Seenue! :-)
I have been on Enbrel, Humira, Cimzia,Simponi and Remicade. Most helped with the neck pain and hip bursitis, Remicade for fatigue.All do something, Enbrel was OK. Fewest side effects.
I had hives with Humira, allergic reaction.
Right after stopping Humira and starting Cimzia, I couldn't stand without excruciating pain, achilles tendons, plantar fascitis and that has not gone away ever since. May have been just constant swapping and the time off between that comes with that. I did try to stay on till obviously less help than hurt. Achilles are absolutely locked now.
I got very little result from Simponi.
Nothing has stopped the swelling in my wrists, knees pain and swelling around elbows.
I am on a break from biologics after while on remicade my AST and ALT went 10 times my normal and caused discontinue. Some times people spike and return but mine didn't come back very fast toward normal I had my last injection in November and still in the 90s. I am happy to be OK. Sometimes the disease itself is enough trouble and I feel like giving up because the drugs are so dangerous. Most don't have so much trouble, I hear.
I was on Enbrel first - for about 9 months I think - it changed my life and worked really well for my arthritis. Seems that it did not work so well for my mild IBD, and as I tapered off prednisone after starting Enbrel, that flared up worse and worse, so I switched to Humira which has also had amazingly good results on the arthrits, while keeping the IBD under control.
Like Jen, I was first on Enbrel. It was a game changer for me. I felt almost as well as I could remember feeling before my diagnosis. But that slowly petered out over time--about 9 months--and I entered a three month period with no biologics and no DMARDs.
Then I started on Humira and it took a while to kick in because of the slump/flare/inflammatory crisis I was in from having no meds on board. But now, after a year of Humira I am doing much better. I go through a cyclical inflammatory event (I simply dislike the word flare!) when the weather turns cold (usually mid-November) and my rheumy has now seen that cycle twice on two biologics and so has adjusted my Humira to weekly in the winter. This has helped tremendously.
Biologics are terrific and so incredibly helpful. And they often need the help of other medications or protocols. For me these additional protocols include adding in meds for leg/foot nerve pain and to keep Raynaud's at bay and engaging the PT department EARLY in November to try to stave off whatever this annual inflammatory event is so that I can stay mobile. These approaches together have dramatically altered my quality of life. But the biologics are the foundation.
I started my biologics journey with Humira. Here in the UK you only get 12 weeks of treatment in which to show a suitable response and although I think I got an extra two weeks it still hadn't started to have any noticeable effect so was withdrawn. In hindsight it may have actually reduced my knee pain but at the time I was having the worst time ever with my right shoulder and that pretty much drowned out any awareness I had of the rest of my body!
Then I went five months with no biologic and the last two of these with no DMARD either. I had been on leflunomide (Arava) up to that point but had to stop due to side effects and diminishing benefit. Those two months were miserable and I had no guarantee of a further biologic at that time. One of my doctors had mentioned 'palliative care' and that scared the living daylights out of me ..... far more than any fear I had of DMARDS or biologics.
Thankfully funding was secured and I started on Simponi (golimumab) almost a year ago. My response was amazing starting within the first week/ten days. I've had times when I've worried it was running out of steam but I think these periods have maybe been an inflammatory event (love that phrase janeatiu) and have resolved following the next dose.
Simponi is a once monthly injection and certainly in the first six months I could feel when the next dose was becoming due, nothing major just a bit of an increase in stiffness and the odd random aches and swelling. Over time this peak-trough effect seems to have evened itself out. I certainly haven't had flares of the magnitude the PsA used to visit upon me on a regular basis. It's not been great for my skin/nails but it's also having to fight another drug I take which can exacerbate psoriasis. I'll take relatively mild skin problems over the joint pain any day.
I can't take methotrexate so have recently started sulfasalazine as an add-in. Hopefully this will help my knees which have been resolute in their resistance to the Simponi. I also hope it will help slow or prevent development of anti-drug antibodies so that I get many years of effective treatment from Simponi. It seems to suit me very well.
Although it's too easy to only focus on what still hurts, when I suspend this default habit I realise Simponi has been a game changer. I'm now trying to sort out another ongoing issue which for a long time I've also blamed on PsA but a recent 'ah-ha' moment has got me looking in a different direction .... if I'm right, and this can be fixed, I hope I'm looking at an even brighter future.
I was started on Methotrexate and steroids at first. Then with unsatisfactory response when reducing steriods, and almost constant flares I was started on Humira. It took a good 3.5 months to work, then worked well, but only for a short 8 week period. Then back to the constant flares with pain and swelling. So my doctor has recommended Remicade, and I am scheduled for my first infusion next Wednesday. I'm a little nervous about process and SE's. I am excited by all the positive comments about Remicade, and my rheumy seems to think it will help. Humira did help, which I realized after stopping injections to clear system for Remicade, but did not keep me from flairing up often, and not enough, especially with pain swelling in knees, shoulder and hand. Thinking good thoughts for Remicade!
Oh and I have a question for those on Remicade. Why do I have to take 2 benedryl and 2 extra strength Tylenol an hour before the infusion? Makes me nervous to need those before hand.
I started on Humira after methotrexate did nothing for me. My left hand was so swollen I had to have my wedding band cut off. Humira brought the swelling down, but that’s it. Switched to Enbrel and then Simponi. Both kept the swelling down in my bad hand but my good hand started swelling and stiffening, especially when I was on Simponi. I’ve had good results with it, especially with keeping my good hand good. When I first started taking it it felt like a miracle. My fatigue went away and I finally remembered how it was to feel good. Fatigue is back now with a vengence but as long as the stiffness and swelling stay away, I’m good. I have a little pain now and again, but nothing major.
Gosh, Cece, you've had lots of switches so I'll ask you a question. Is there a standard procedure for switches? Is there a "washout" period between them, or is it when you are due for your next treatment of drug A, you take drug B instead?
I am about to do my first switch, off Humira and onto Remicade. I had to be off (missed two injections) Humira for a month before I can start Remicade. Dr. said Humira had to clear my system. It has not been much fun.
Seenie said:
Gosh, Cece, you've had lots of switches so I'll ask you a question. Is there a standard procedure for switches? Is there a "washout" period between them, or is it when you are due for your next treatment of drug A, you take drug B instead?
Yeah, Seenie, I’ve been through almost all of them. There was no “washout” period. The only gap was between the Simponi and Cimzia and that was just a matter of timing. I was due for my shot that day and he wanted me to hold off so I could take the Cimzia as soon as it arrived.
Probably to reduce a possible allergic reaction to the remicade, since the remicade is known for causing them. The tylenol is for discomfort from the needles and all. Not everyone uses them, but I guess it's really common to be told to use them before infusion, and some doctors say to take them where others don't. My doc says it's up to me, but if you're concerned then ask before infusion, nothing to be nervous about :)
Needs answers said:
Oh and I have a question for those on Remicade. Why do I have to take 2 benedryl and 2 extra strength Tylenol an hour before the infusion? Makes me nervous to need those before hand.