Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Ok, here is my Rheumie rant...
I went to see the Doc on Monday evening, my normal 3 month check in, but I have had issues with the Xeljanz just not seeming to work.
We went through the normal, touch my hands, wiggle my knees back and forth, squeeze his fingers, blah, blah, blah.
When he asked how I have been feeling, I told him that I am just not seeing any improvement, my pain levels are back to where they were before. Ok, touch the hands again, put arms behind my back ... one more time with the squeezing his fingers.
Then he looks at me and says, "Hmm... well it isn't debilitating or causing any deformaties. What you are telling me is not consistant with what I am seeing. We seem to be chasing this and not getting any results. (You think?) So, I want you off of all of your medication. (WHAT?) Stop the Xeljanz, only take the Arava 3 days a week, you can continue your naproxen. After 4 weeks we'll decide if we are stopping the Arava all together or if you should start taking it again full time. Come see me in 2 months this time."
I didn't even know what to say. Then he turns around and refills my Tramadol and tells me to continue to take those as needed - he gives me 6 of those a day. So, I guess just eat pain pills like M&M's and I'll be fine. WTH?
He then completed FMLA paperwork for me with an 8 hour a day permanent restriction and Intermittent as needed up to 2 times per month at 3-4 days at a time to get me through any flares. I just don't get it.
I am a huge procrastinator and have known for a while that I needed to find a new Doc, but I guess this was that final kick that I needed to get off of my tush and find one.
I have to run, the go to work alarm just went off.
Thanks for listening to my morning rant.
Gentle Hugs to Everyone,
Kim
I went to see the Doc on Monday evening, my normal 3 month check in, but I have had issues with the Xeljanz just not seeming to work.
We went through the normal, touch my hands, wiggle my knees back and forth, squeeze his fingers, blah, blah, blah.
When he asked how I have been feeling, I told him that I am just not seeing any improvement, my pain levels are back to where they were before. Ok, touch the hands again, put arms behind my back ... one more time with the squeezing his fingers.
Then he looks at me and says, "Hmm... well it isn't debilitating or causing any deformaties. What you are telling me is not consistant with what I am seeing. We seem to be chasing this and not getting any results. (You think?) So, I want you off of all of your medication. (WHAT?) Stop the Xeljanz, only take the Arava 3 days a week, you can continue your naproxen. After 4 weeks we'll decide if we are stopping the Arava all together or if you should start taking it again full time. Come see me in 2 months this time."
I didn't even know what to say. Then he turns around and refills my Tramadol and tells me to continue to take those as needed - he gives me 6 of those a day. So, I guess just eat pain pills like M&M's and I'll be fine. WTH?
He then completed FMLA paperwork for me with an 8 hour a day permanent restriction and Intermittent as needed up to 2 times per month at 3-4 days at a time to get me through any flares. I just don't get it.
I am a huge procrastinator and have known for a while that I needed to find a new Doc, but I guess this was that final kick that I needed to get off of my tush and find one.
I have to run, the go to work alarm just went off.
Thanks for listening to my morning rant.
Gentle Hugs to Everyone,
Kim
If you don't notice worsening, then he'll know he's barking up the wrong tree altogether and needs to look at a whole different drug regimen to help you.
And as for filling the pain medication - that's good in case you do get worse.
I'm ever the optimist unless it's regarding me. LOL
Honestly, it sounds like he's on the hunt to track down the pain and knows he'll have to do something sooner (hence 2mo, not 3). If he replaced all your med with prednisone he'd not get to the root. I hope you don't hurt too much, but that you do get it narrowed down to find a long term solution!
I know mine has stated there are times she likes one med to clear the system before starting another.
Good doctors are hard to find. It's not easy for everyone to start over with a new doctor.
Honestly if you have doubts consulting with another would not hurt.
I'm in your shoes so I get it.
Would be nice if there was an explanation as to why or a path forward discussed with the patient when something like this happens.
Wouldn't hurt to start inquiring or looking for another doctor. Perhaps you'd feel more secure knowing you have another opinion.
Good luck, Sammy
If you are unhappy with your rheumy, search out another one. Wouldn't hurt to get another opinion.
Several times I have found that the meds were actually working - only when I went off of them did I understand just how much.
Hang in there! I hope you arrive at a long term solution quickly.
Are you to phone or email him at four weeks to discuss the Arava? Maybe you could sneak in a few WTH questions at that time
If you are considering a switch, this might be a good time to look around.
Altoclef - nope, I didn't ask him why, I just sat there like a yutz looking at him...lol. I was just floored.
We have done the tapering on the Arava before. After about 2- 3 weeks I am back in his office for a steroid shot. He does not prescribe prednisone or MTX.
I have already gone through Sulfasulazine, Arava alone and then Arava with Enbrel and most recently Arava with Xeljanz.
I just really want to get off the constant pain pills. I have great days that I do not take more than 1 -2 tops, then I have days that it doesn't matter how many I were to take, nothing is going to take the pain away. Ok, now I am just whining...lol
When I can get my head together and not talk to him like "He just thinks I am a hypochondriac" I will give him a call and ask him to explain his logic to me.
I truly appreciate all of your input and thoughtful advice.
Kim
he gave you options and tools to help you take care of you.
you can take the meds if you like or not, he gave you an rx for them, they only can do so much anyway and use the pain meds when you need to.
you can take off work if you need to and he restricted you to eight hours only to help you not over do it - that will help you some too.
now you are a self manager!!! welcome to the club
You could also get a second oppinion without breaking up with him. Just someone to look over the course he's taken and reassure you. just get a copy of your records and bring them to someone independent.