Hey All. I have been reading the posts about Remicade trying to get answers without starting a new discussion, but I still have some questions. I had my second infusion this past Friday, which was six weeks after the first. I was formally diagnosed with inflammatory arthritis in March, and I joined this group because my doctor is nearly certain it's PSA. At least this is what it most identifies with so I'm trying to fit in somewhere and get support. I have tried methotrexate (all I got was bald spots which led to depression and expensive hair extensions to cover the bald spots), sulfasaladine, celebrex, mobic, every other NSAID on the market, prednisone, cortisone injections into my SI joints that did nothing, enbrel and a few other ineffective treatments. I have had no relief from the Remicade thus far. I have been getting bronchitis every few months for the past 2 years. My rheumy can't explain the bronchitis and even the strongest prescription cough syrup barely helps. It is miserable. My knees and elbows have become a problem since my diagnosis, and my fingers have become really useless. It's hard to explain but it almost feels like I'm wearing a pair of winter gloves but I forget I have them on. My hands feel stiff, but they don't feel numb. I don't feel like I'm going to drop things, but I misjudge my grip constantly and drop things all the time. My fine manipulation skills are terrible. I can type for short periods of time but I can't open bottles, get pills out of bottles, dry my hair, etc. I spill things, knock things over, etc. I'm right hand dominant and this is really depressing. Since I got the Remicade this time, I have felt extra crappy. I just feel lousy and tired. I don't remember feeling this way after the first infusion. I felt fine after the benadryl wore off. Is this normal? My rheumy answers questions when I ask but I feel like I still don't know what to expect and every day I wake up with more pain. The only thing that has happened with the medications I've tried is negative side effects. I'm starting to think something is wrong with me. When I was first diagnosed, I was so happy! I know that sounds weird but after years of knowing something was wrong I was excited to get treatment. Now my doctor says I am running out of options. He says I've tried almost every combo. of drugs and after that I'm only eligible for clinical trials. It is scary being close to that. My job is stressful in some ways (lawyer) but I have flexibility to go to the doctor and paralegals to help me with tasks I can't complete. If I do not get better I cannot continue this type of work. I am hanging by a thread. If I can't do this I do not know what I can do without my hands, and that's only 1 out of 50 things going on. I feel like when one thing is not acting up (like okay, today I'm not limping from my knee, great), something else is a disaster. Does it ever get better? Is there still hope for the Remicade? Doctor says if this doesn't work he will increase the dose for the 3rd round and then that's it. Should I start feeling better now? Next week? Next month?
Wow. Wish I had the answers to your questions. When I read it, and realized no one had commented, I thought someone ought to at least say I'm really sorry you are experiencing all of this. Have you tried contacting the Remicaide manufacturer to see if they might be able to answer some of your questions? Often the manufacturer of these meds will have nurses on staff that you can call to ask questions. Keep in mind, though, that they usually will say that you need to see your doctor! The good news is that they have all of the information about the medication including a vast database of interactions, reactions, and other information that isn't necessarily available on the insert that is included with the medication (not that I ever SAW that insert while taking Remicaide).
Thanks for your response. I do feel even more of a mutant when no one here can answer my questions. I have read everything I can find on Remicade's website and still I have found no answers. :( I guess I could call them.
I’m so sorry you are having this experience. I haven’t had any experience with remicade, but can certainly empathise with not being able to open bottles, lack of fine motor skill etc.
At my worst, I could not walk the two blocks between my carparking and my office. I was very lucky that thre was a bench half way!
I understand how you feel about your job - I feel I have something somewhat similar - a professional job that provides for certain allowances - as long as you perform. But like you, I did have a stage where I believed I would not be able to perform and could not continue.
For me, the biologics were extremely effective. I still can’t get out of bed on a Saturday sometimes (much to my very energetic 4 year olds disappointment!), but I can usually make a 5 day week with only one late day / sleep in.
There is always a second opinion - in case perhaps there are other options, perhaps a different diagnosis or treatment.
But also remember that the reason people like me have gone from basic survival, brain fog dominating, unable to walk to the corner store, to living a full life, executive job, overseas travel (but with some extra rests), is because of successful clinical trials of new drugs. I can tell you right now, if they were the options I had left, I would take a trial over brain fog and pain oblivion in a nanosecond.
I can understand how frustrating it is. I don’t know when you will feel better. But the chances are that if you are persistent, you will.
Hi libby b. What a total bummer that you still feel bad on Remicaide. Despite your doctor's dire warning about having no more options, I think you should definitely fill him in about how bad you feel. Could you tolerate a short course of steroids to help as you adjust to medications? Could he add a second medication to the Remicaide for relief of inflammation?
It seems that most everyone on the site has gone through this experience of taking a drug and then adding another--or two or three--in order to get the right balance. I don't think your doctor's pronouncement is accurate, unless you've already gone through ALL the biologics. Get in touch with him very soon. You do not need to suffer unnecessarily while you "wait" (for what? who knows!)
Hi there,
I just posted this in response to someone else, too, but I expressed fear yesterday at my first Remicade infusion that it wasn't going to work due to failing on sulfasalazine, methotrexate, arava and humira. The infusion nurse told me not to worry that there are LOTS of otther things to try and rattled off a list of like 7 other meds. So, I'd suggest you have a chat with the theumatologist.
The other people in the room with me getting their infusions said it took several before they really noticed a difference.So maybe it's just a matter of waiting a bit longer?
I hate the trial and error involved with the meds. I feel your pain. I hope they are able to find something to help you soon. Don't give up! I also have a professional job and a small child, I'm exhausted and have some of that brain fog people describe that I never really attributed to my PsA. My mood also sucks and it seems like that may be related too. But we can't give up, we need to keep advocating for ourselves.
Hi, I'm sorry I don't have comments about Remicade. I haven't tried it yet. Just wondering if you have searched for any info online or with other sources. I know when I was having trouble with some of my meds...I was told the issues I was having weren't part of the side effects but when I looked into it further on my own, I found out many people had the same issues. Just because these weren't considered issues by the medical community, didn't mean they weren't caused by the meds. After stopping taking one medication...I found out for sure that it was the culprit.
I'm not at that the Remicade stage yet.... still looking for meds that will work but the doc told me I'm at the last step before moving on to some of these more expensive meds and biolgics.
I always feel like a mutant...have difficulty with so many simple tasks and worry about keeping my job. My hands are my biggest issue. Just writing this is a huge effort...only a couple fingers work, especially this early in the day.
I know the waiting sucks. If it's that bad there must be another option for you. Remember we're all here to listen and help as much as we can.