After posting a question about Remicade and getting one response (which was only posted because the person felt bad I didn't get any responses) I am feeling extra horrible today. I'm going to vent here for myself because I just need some place to do that. I had my second dose of Remicade 1 week ago and I have zero improvement. I still have bronchitis, which I have now had for 3 weeks. After 2 weeks of antibiotics, I have stopped taking them because they are useless. My joint pain is hard to bear and I feel like everything takes me forever to do. I'm always late for everything because I can't do anything at a reasonable pace, but then when I try to rush around, I end up in worse pain. I don't have time to see a mental health provider because I'm already maxed out on taking time off from work. If I take any more time off I'm going to need to leave my job. I realize I may have to do that, but I'm just praying and praying that one of these medications will start working. After two doses of Remicade and only one medication left to try if that doesn't work (according to the rheumatologist), I'm not very hopeful. What gives?
Hi! I just left a message on your other discussion.I'm glad you vented and got some of this out.
I'm truly sorry you're so down in the dumps. It sounds like you need to take the entire weekend off. From EVERYTHING. Unplug everything and REST. You keep getting bronchitis so clearly your immune system is compromised. With such a high pressure and busy job it will be easy for you to really deplete your resources and wear yourself out. I know you said you're out of PTO from work so that just means you're going to have to maximize weekends and evenings for yourself. If you need to get extra help around the house--get it. You MUST prioritize yourself or you'll never get well or shake the bronchitis. I don't mean to sound like I'm lecturing you--I'm just telling you what I have to tell myself and what all my friends tell me--TAKE IT EASY!
You did not take a loading dose of Remicade as near as I can tell. You won't see any improvement for 18 -24 week IF the dose in the correct amount. Now I really don't have a clue as to whats going on with your treatment. Frankly I tried to sort out make an outline your remicade post to figure out what was going on and came up with nada. sorry. I don't know how long or over what period of time you have tried almost "every combination" of meds. Whether you had serious reactions, side effects or were looking for different results from your meds I don't know.
There seems to be a lack of information flow with your doc, perhaps a conflict in style that makes it difficult, I don';t know. Your doc isn't giving me a warm fuzzy feeling. I don't get the impression that he is much of a problem solver nor has he used his brain in a while. The protocol changed several years ago for Remicade. He's still on the old one (and cookie cutter at that) At least thats my guess with what I've been able to discern
First of all hair loss with MTX is caused by folic acid deficiency and is pretty easily corrected (it takes time. The type of hair loss you were describing is not consistent with the rare hair loss that comes with the low dose of MTX we take. What you described is more consistent with stress, and hormones. (Both which are part and Parcel with the disease) If you have actual bronchitis, then it is likely that Antibiotics won't work as bronchitis is usually viral. In any event until you get the rest of you gets healthy (Bronchitis is inflammatory) its going to be hard to control inflammation.
You didn't mention which NSAID you are taking. that may be the place to look for some immediate change. most of us change those around pretty often. The only thing that will control pain in your extremities well is the NSAIDS and DMARDS. The biologic is for your disease.
I understand the need to keep up your billables, but I gotta tell you YOU DO need to talk to someone. The most difficult part of this disease is dealing with it and making the adjustments you need to make to live with it. That doesn't mean working less BTW. From people readings perspective your first post was all over the place with anger , this one was not much different except it seemed you were angry with everyone here.
I KNOW that isn't the case. You are an attorney and have been trained to write absolutley nothing in a passive voice. I am one of those professors that would throw back weeks of your work for rewrite because there were incidents of passive voice. That puts people off a bit till they get to know you. I'm working on it myself and still piss off somebody myself now and then. But here is the thing until you able to channel your anger, confusion, hurt etc. Things are going to get worse.
Its one thing (and a hard thing) to get through life with this disease when your work is routine laced with routine a repeatable tasks that allow you to spend at least part of your day in auto-piolot. BUT when your life is dependent on your brain to sort, process, create, and express. that jumbling of thoughts feelings and emotions as you learn to deal with this disease is deadly. Our work suffers, and we end up spending more time with it stress levels sky rocket and things get worse. (Don't confuse this with pressure - I LOVE pressure) Your disease goes totally out of control and NO med regime will help. These diseases are especially hard on professionals.
If you read this far, I hope you understand I understand where you are at. I've been there. YOU WILL get control of your disease but only the 1/3 of it comes from medication. The other 2/3rds is up to you.
I've been told to never stop my antibiotic unless the Dr. says to! It sounds like you need to see a Pulmunologist. I am not on Remicade, but I had hair loss on the MTX, so my rheumy incresed my dosage of Folic Acid. I do have a slight bald spot but my hairdresser cuts my hair so it is less noticeable. :) I had lung issues at the onset of PsA and the Pulmonologist worked wonders in getting everything under control. Sorry this post is a little disjointed, but today I am not at my best. Hang on! Don't lose hope! Everything eventually falls into place, sooner or later. :)
Hi,
I have to say I know how you feel. It takes me forever to get ready for work...some days are worse than others. I worry that one day soon, I won't be able to work anymore. The stress over completing tasks is unbelievable. My doc asked me last week if i have a lot of stress...I said yes, when I try to wash my hair, brush my teeth or open a door because I have so much trouble with it.
Can you not see someone after work hours ? That's what I do and I know it's helped me a lot. I don't get as bad as I used to with emotion. How long was your antibiotic prescription for ? When my chest is bad I make myself a hot drink of water, fresh lemon and honey. They both have properties that may help...at least give you some relief.
From what I have read it can take a few doses of Remicade before it starts to work but everyone is different. Did your Rheumy mention how many doses he wants you to try before moving on to something else ?
Hang in there.
I'm not quite sure why your doc says only one more medication to try: I've had PsA for over 30 years and I've STILL got a few more med combinations to work through (starting Stelara in the next month, just approved for PsA). And that's with med changes almost every year for the past 12 years. There are many combinations to try.
Having just come through a bout of bronchitis, I really feel for you. I was flat on my back for a week, and I've been known to power through just about EVERYTHING else, running on frustration and willpower, but the bronchitis took me down like nothing else.
tntlamb, you are correct about me being angry. I am very angry and frustrated. When I post on this website I do not worry about how I sound or how I might sound to others. Maybe I should proofread. I think of this as a safe place to vent and if I came off as angry at anyone here it was only in general frustration. My thoughts about this disease are completely disorganized and jumbled. I am not sure that I can tie them up in a bow and present them in a manner that is attractive to any reader. I do appreciate your thoughtful responses and your knowledge about the disease and the medications. It sounds like you know more than my doctor, which is sad, but I'll take the information from where I can get it.
My rheumatologist told me that a lot of people feel better after their first dose of Remicade. He said it wasn't a bad sign that I didn't feel better after the first dose but it would be a bad sign if I don't feel better after the second dose. He plans to increase the third dose. If that doesn't work he will try me on the drug that was just approved for PsA (Stelera). I get the Remicade every 6 weeks and I had my second dose almost 12 days ago so I haven't been on the Remicade very long. A lot of the reviews of Remicade I have read from other websites are for inflammatory bowel diseases but the reviews I've read from PsA sufferers generally say "I instantly felt better." Everybody here seems to be saying that I didn't get a loading dose (I presume that means that I don't have the maximum dose in my body yet) and there is still time for it to start working, but it is very confusing that my doctor seems to think I should be feeling better by now. I am treated at Duke, which is a very credible teaching hospital, but I tend to believe other patients over my doctor, who doesn't have the disease.
As for NSAIDs, I am not currently taking any. I have tried many, but none have ever helped. I know that everyone says it's the combination of drugs that do the trick, but the NSAIDs have always caused stomach pain and have irritated my reflux to the point where I had to stop them, plus they never helped me at all. NSAIDs never helped me with pain, even before I had arthritis (with headaches, regular muscle pain, etc.) so I'm not sure if I'm missing out in that area. I have been more than willing to try them when the doctor has prescribed them, but since he told me to stop the last one a few weeks ago he hasn't come up with a new one. I most recently tried celebrex and it had my reflux going full force, even with following a very "anti-reflux' diet and taking nexium twice a day. It's always the same cycle with the NSAIDs. I dread starting them because of reflux, give them a good shot, and then breathe a sign of relief when the reflux stops after they don't work and I go back to normal.
Going back to the MTX, I was on a high dose of folic acid when I was taking it. Maybe you are right that it was not the MTX but rather the stress that caused the hair loss, but the hair loss did begin right when I started the MTX and I've had the arthritis for quite a while. The MTX wasn't helping anyway, so that is what really prompted the doctor to discontinue it. I might be willing to add it in the mix again if someone can convince me of why I should do so.
I am surprised that my doctor thinks I am out of options. I have not tried humira or simponi, and those are only a few drugs I know the names of that I have not tried. I know humira is very similar to enbrel (which did not work for me) so maybe that is why he did not try it on me. I do plan to ask him a lot of questions at my appointment on 11/6, and I am going to look for a new doctor if I don't get answers that I'm satisfied with.
I think that the main reason why I am so frustrated is that I've been waiting a long time for a relief and I haven't gotten any at all whatsoever, and I've actually gotten worse since I was formally diagnosed. I knew I might not ever go into remission, but I didn't expect to get so much worse so quickly, especially while taking drugs that have worked miracles for so many people. I'm not going to give up, and I refuse to believe that I'm nearly out of options after only seven months of treatment.
Thank you for your thougtful reply I was getting nervous I scared you off. I certainly haven't learned to tie it up with a bow...
In any event as folk get to know you, you don't need to worry about it.....
A loading dose gets more into your system more quickly (they give a smaller does every few weeks.) It will work out.
One option for NSAID's is Voltaren gel. I can no longer take NSAID's regularly due to reflux and stomach damage. The Voltaren gel is absorbed through the skin, and might be something to have in your arsenal.
You are absolutely not out of options. For biologics, there is Stelara, Cimzia, Rituxan, Humira, Simponi, Orencia, Kineret, and I'm probably forgetting some (I left out Enbrel and Remicade, since you've tried those). Xeljanz is a newer drug, a JAK inhibitor.
Not to mention other meds like Arava, Plaquenil, Sulfasalazine, Cellcept, basically another of the older meds...etc.
And then combinations of all those.
Don't give up, you are right, trust other patients, and keep pushing your dr. Also, a top doc is not necessarily the best doc. I've had better care from some dr's in small, independent practices than I have at top institutions (like Mayo).
I wanted to add that of course you are angry and frustrated. I've had this for over 30 yrs and I still get angry and frustrated at treatment / meds / dr's!
Good Morning lillyb1983,
I as well have had just 2 Remicade infusions with my third due this Friday and though the intensity has subsided some over all it seems as though the Psoriatic Arthritis is affecting more of my body which in the big picture doesn't leave me feeling much if any better.
I had my concerns also about needing to take the time off and had to use the (FMLA) family medical leave act which has an option for an intermittent leave to cover the days for my infusions and if necessary any days where I just couldn't function well enough to work. Fortunately, at least so far I've found that if I can force myself to get moving in the morning I can usually do okay. I seem to have a sweet spot in the day from around 10am to 2pm where I can move fairly well most days. But my PsA has only become debilitating over the last few month and only God knows how well I'll be able to function a year from now.
Good Luck,
k
Hi. I saw your post and wanted to say hang in there. I've been on Remicade for a little over a year. I too didn't have any relief after the "starter" or "loading" doses. It took almost a year before I was beginning to feel better. I have to mention that that was after having the dosage increased a couple of times and the frequency changed to every 6 weeks. I also take other meds while on Remicade...Methylprednisolone, Methotrexate and Diclofenac/Misoprostol. While the combination works for me the majority of the time, I do still experience occasional flares.
You could ask your doctor about trying a combination of medications to address your symptoms. I hope you begin to feel some level of relief soon.
You'll find a lot of different people here and a lot of love as well ..... so VENT . We all need to and you have defiantly found a supportive place to do it. I don't know the meds but I know the disease as it's a family thing for me going back over my entire life. Misdiagnosis and lack of treatment plagued my father and grandmother and they both died of complications in the end as there where no treatments really back them. I have been in the diagnostic search myself for three years and just got diagnosed in July after nearly dying of a pustular outbreak last year at this time. I am ever so thankful every day to have this place to find info(really good) and friends who understand the frustrations that come daily.
Keep up the good fight and vent often if you need to........ :0 you will occasionally feel as if you have been stepped on but I find it's for my own good and I need to readjust my thoughts and focus on being the best me I can be now. You really can't get better knowledge anywhere out there. We are lucky to have what the grapevine says is one of the finest Doctors in the field as a friend here. I have let my mind heal now that I have someone to listen, respond and let me know if I'm being a crazy lady! :) XXXX