I have to admit that I didn't see this one coming. At the most resent Rheumy visit my Dr. and I discussed how my treatment is going. WELL, it's not going so well. The portion of the discussion that most concerned me was when he stated that the damage is done and cannot be reversed. We discussed my blood work and it was noted that there was very little sign of inflamation currently in my body. What caught me was his next statement. The main goal of the Remicade treatment it to slow the damage to the body. The damage to the body is caused by inflammation. So if I understood the conversation properly then the pain that I am currently experiencing (which is intense enough that I require a walking cane) is with me for the rest of my life.
Then came the statement from the Dr. that I wasn't ready for. He said the after the "Starter Doses (3)" the prefered schedule in an infusion every 8 weeks. However he mentioned that I will require infusions every 6 weeks. If after 6 months and there isn't any significant relief we will cease the Remicade treatments an start a pain management program. His reasoning, again, is that the damage is done, cannot be reversed and the rest of my life will focus on managing pain caused by inflamatory damage.
Now I would like to ask anyone more knowledgeable in PsA matters/treatment if this is a correct assesment and (possible) treatment plan!
Thank you, everyone, for your input and support. I pray that you all (ya'll) receive the needed rest this evening (mentally and physically) so that you can fight the battle once again :<)
Hi BuickBoy, I’m nowhere near your stage, so don’t know much about it, and I’ll let others provide advice, but I have a roundabout question. I’m on the early end of things, a an MRI a few months ago showed no (bone) damage. I don’t have raised bloods (though everyone uses different definitions I guess, so they could be higher than yours).
My point being that as it can’t be bone damage causing my pain, it must be inflammation (and I’ve got the swelling as well as response to both pred and MTX to confirm that). Do you have any other indications of active disease, like fatigue that you feel is unreasonable in the context of your pain, random low grade fevers, red eye etc?
that's awful news BuickBoy :(. But it's not over yet. You haven't been through the Remicade treatment yet. Also there's other options such as adding MTX to the biologic as well as other biologics, some still in clinical trials.
Don't accept from just one doctor that your disease isn't active, get other opinions.
Have you gone yet to an orthopedic surgeon? Their job is to FIX damage. Damaged joints can sometimes be replaced. What about physical therapy? They can do a great job of helping you be able to move and live again. You should probably be seeing a good orthopod anyway. The best treatment is multi-disciplinary.
Do not quickly accept that you have to live in pain.
The thing that worries me about your doctor's statement is that you can test negative for inflammation and still HAVE inflammation. My blood tests came out normal when my left ankle was incredibly swollen, my right ankle was moderately swollen, and almost every joint in my body had visible inflammation. My pain is often the same while I'm on Remicade, but my mobility is better due to inflammation going down.
The “current” fad, if you will, is for the docs to treat the disease, anf pain seperatley. While the damage can’t be undone there are a number of things that can be done to mitigate it. Lab work can’t always find inflamation as many of the meds can effect it. There are dozens of studies in that area. Besides just how much inflamation does it take to cause pain in an area?
So GMman (, you are not a boy any longer) heres what I would do were I you… You have had so much pain for so long, its all pain all the time. You need to seperate the pain and chart it (I use a spread sheet) The ol’ “rate your pain today” you get the docs isn’t good enough. You might be at an 8, but your knees don’t hurt and they did last time… Just because you feel like doo, doesn’t mean all of youis. Once you are able to seperate the pain (which is th first indication you drugs are working) you can start to isolate it and treat it.
This may well be what your doc was getting at. For me it took several months to get there. When we did, we were able to start treating specific areas. It looks like I’m going to need at least one more roto-rooter job on one of my shoulders and one new one. My sister ended up with stabelization of her spine.
Hang in there, and no while thdamage may be permanent, the pain is not… But as nym pointed out moving with pain is better than not moving with pain…