I took my third dose of MTX Friday night. I've tolerated it okay I guess, but it has definitely not helped yet.
I did my second injection of enbrel on Wednesday and some of it leaked out of the injection site. I'm not even sure how much of the medication I got. The best part is that it leaked because my clumsy arthritic fingers couldn't handle properly releasing the top button. I wanted to SCREAMMMMMMM when it leaked out. My rheumatologist instructed me to wait until next week rather than redo the injection.
Lastly, I had bilateral sacroiliac joint injections 13 days ago. It caused a significant flare in my low back/butt/hip/thigh pain for the first seven days. I've had cortisone injections in my hip before and I had the same type of flare-up. These injections have turned out just like the ones I had in my hip 2 years ago. 1) feel awesome immediately following the injection due to the temporary numbing medication 2) flare up for about a week 3) return to baseline 4) EXTREME frustration... and disappointment that yet another "miracle" treatment has done absolutely nothing for me.
I feel like I am going to lose my mind if I don't get some relief soon. One of you replied that narcotics are not a good choice because we would need such a high dosage that we would basically be high to get any relief. I agree with this. My body is extremely tolerant to pain medications, and besides that, my rheumatologist wants me to keep working full time and to take tramadol (which I refer to as useless sugar pills, because that's what I think they are). NSAIDs are a total joke for me. I definitely don't want to ask for pain medications because I'm afraid I will be accused of drug seeking, but what in the world am I supposed to do while I wait for these medications to HOPEFULLY do something?! Why isn't my doctor trying to make me comfortable in the interim? I am so anxious and upset due to the constant pain that I am nearly in tears and just want to run away (which I physically cannot even do). My anxiety is nearing full blown panic attacks at this point because I feel like I have no control over my body, that my doctor is not addressing my pain, and that I will never find medication that helps me.
I am starting to lose all hope that I am ever going to feel good. I cannot go on much longer like this. And, if one more person tells me to go "gluten free" or do some other hippy whole foods quack remedy, I'm going to end up punching someone in the face with my swollen fingers. I have already tried countless "natural" remedies. Does it ever get better? NSAIDs help most people, but not me. Narcotics barely help me. Cortisone injections help most people but not me. Yeah, I know, I'm full of wha whas tonight but I am at the end of my rope and I'm about to set the rope on fire....
I find narcotics extremely helpful. I use Tylenol-3 for mild pain, I used to use Vicodin but it started giving me heart palpitations, so for worse pain I take Percocet. How much of each is up to me and I take as much as I need. I can't take therapeutic levels of NSAID's because I had a bad bleed 9 years ago.
I have done time-release narcotics, and they don't work as well for me at this time because I basically need shorter bursts of a few days of higher meds then less, not daily high level pain relief.
I have had a little Enbrel leak out, but long term it has never affected my treatment as long as it is not every time .
If you search the discussion board you'll find lots of non-medical help for SI pain, other pain. For example, I find putting a Thermacare patch on my SI area helps so very very much. Yoga stretches for that area are helpful. Etc.
I feel your pain. I was there once and I will be there again some time.
You stated in your discussion that you took your second enbrel. The biologics take time to work. You need to give it some time. I started Ennbrel on September of 2012 and it was not until February 2013 that I started to feel it working. Now six plus months into it and it is doing what it is suppose to do.
If it does not take hold, there are others to try and more in the pipe line.
Do not give up for if you do then the disease has won and you do not want to be dictated by the disease.
Keep checking this site. It has been a life saving place for me and I have met some really neat people in my area due to this site.
And you're not the only one who gets nothing out of cortisone shots. I've had them in my back, toe, fingers, thumbs. . . . Nothing. I think I'm all done trying this out. It doesn't work for me.
I hope you get some relief soon.
One thought. . . . Not all NSAIDs are the same. I wonder if you might get relief over time with a different NSAID. You've probably tried more than one. Taking as needed doesn't do much good, but taking on a schedule does, for me.
Hi Lillyb , I feel your frustration ! I wonder if some anti-anxiety meds might help not only you panic attacks but also the pain, because stress will make the pain worse. Just a thought.
There are over SIXTY NSAIDS one of the will work as will Predi in the right sequence/dose.
Narcos other than dulling your senses, will not. There is NO component of this disease they treat
If the above two statements are not true even for short period of time, then it is highly unlikley that your pain is caused by inflammation. They may have to look elsewhere.
Part two is unless you are MOVING you are rusting, and nothing will work. I know its hard, I know it hurts. I double dog dare you to find a doc who will disagree with any of the above. Hers the thing. You are overcoming years of disease, you have layers of pain and inflamation. Even with effective treatment THAT IS working, you may not notice it for weeks, as each layer of pain is peeled off.
As far as injections go until you get some basic disease control save you money. The injections may have worked, but if the area is surrounded by inflammation you won't know. As far as SI injections go, I can't recall anyone they work for not to mention they hurt like h***.
I'm not trying to be discouraging, I know exactlly where you are. I and others have been there. It will get better, and it will sneak up on you when it does.
The narcos will only seem to help. They WILL make the pain worse. If you want a new kind of hell, wait until you have to take a break from the narcos because your tolerance has increased you are now dependent on them for even minor pain ( which to a dependent person, which is different than addicted, is major pain) That process of dependence can start in as little as 10 days)
Hey. Welcome to our club though I am sorry to meet you here. I'm here with my my clumsy arthritic fingers as well along with my back, neck, hip and left leg/foot as well. Give the drugs a chance. Been on methotraxate and humira for 6 months and believe it or not I can feel a world of difference, it took awhile to get to this point. Not every day, good days and bad days, you never know. Don't give up, work it, find out what works best for you! Keep changing if you have to until you find something that works for you.