It seems to me that RA is one big less in testing our frustrations and are levels of patience and tolerance. I am constantly amazing as once again I find myself amidst a lesson concerning RA that is again about patience and frustration. I can relate to the whole thing about having to plan musical drugs, at least they offer some temporary relief if only for a few months. You are on Fentynol patch plus oxycodone???? Does that help. I would imagine I'd be a walking zombie, that is if I could walk after talking that mix!! I can relate to what you are saying. It is indeed a struggle and it's hard to be patient when each hour seems like an eternity. The other thing that makes it difficult is that RA itself is extremely variable...it flares and subsides...which makes it very difficult to assess how well the meds are working. Sometimes you didn't realize that something was actually working until you stopped! My experience with Humira is a little different now. My RA has been more active lately and the Humira fades out before two weeks go by so when I get the injection I usually have some pretty strong symptoms somewhere. Within 24 hrs the Humira knocks it out remarkably well, so at least I know it's working. My doctor doesn't want to increase the Humira to once a week so I'm now trying a low dose of Arava to supplement the Humira...waiting patiently to see what happens. Happy Thanksgiving (just got up...off to walk the dog) ! Alan Cordy, I wish I could take on some of that pain for you. I know it seems like it's taking forever to find relief. Just have faith that it will come to you soon.
I hope you have a superfantastic Thanksgiving and an extra comfortable day! Hi Cordy! I'm sorry I didn't get to check on your appt. yesterday. As you know, it was our Thanksgiving Day. I'm so glad they have given you something else to try. I sure hope the fentanyl patches work for you. I was on them about a year or so ago. They helped me for a while, but like everything else I try, eventually had to try something else. I know that oxycodone is supposed to be a good pain med. Unfortunately, I am allergic to it, so I have no first-hand experience with it. What strength of fentanyl did they give you? Remember, they can usually adjust dosages if they need to. Did you ask about the methadone? Just wondering. I know that Liz and I are both on it as our main pain med. I don't know what she uses for breakthru, but my morphine is not really doing the trick anymore. But that happens with anything. It's about time for me to have a pain med conversation again, too. I hope you find relief from your pain with the fentanyl. Be well. Hugs, Nini Cordy, I am so very sorry. I hope this really does the trick for you, and you start getting some relief tonight. I understand the frustration and just feeling like you are hitting your head against the stupid wall. Take care, and let me know how you are. Love ya much, shel
Being on Rituximab I have tried every DMARD and every combination of DMARD's and then all the biologic DMARDS. All taking many months each to see if they worked or not.
Now, I find I am doing it with pain medications.
Up until two months ago, I had no pain relief at all but after 10 years in constant pain with no relief I reached a point where I could no longer stand it and I asked for something. There began the pain relief journey which is proving as difficult as the DMARD journey in finding something that works. I was put on morphine sulphate and oxycodone. I have gone through weeks of dosage changes and we basically had it right and three weeks ago, I flared so the pain broke through all the medications that I was now settled on, now new stuff was needed, doses were increased again but to no avail, they pain has continued undaunted throughout this week.
So today my gp and my rheumy consult each other because my gp admits that she can't control my pain levels so again it is changed, now I have been put on a Fentynol patch plus my oxycodone. Fortunately I see my rheumy on Monday so if it's not working by then I will be in front of him to jump up and down.
It just seems that both the DMARD's and pain meds are all trial and error. Some work for some and some for others, dosages need are different, we just need to keep going through the motions until we hit one that actually does something.
Ah...I am taking a deep breath...we have to find something that works at some point. This is driving me slightly crazy.
Alan, good point about the variable adding to the frustration. It certainly makes it more difficult and frustrating, for sure. It's always changing all the time.
I would just like to stabilize and settle for a bit. That would be so nice.
Argh!!!!
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