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...
I'll start a new thread I guess as a follow up to my worst doctor appointment ever thread found here: http://www.dailystrength.org/c/Rheumatoid_Arthritis/forum/20480519-wow-one-awful
I saw another rheumy today and he did seem more knowledgeable than the last one. He added MTX to my meds and couldn't understand why I wasn't on it with the Enbrel. I realized later he didn't add Folic Acid however.
For fatigue he tended to blame hydrocodone and said it wasn't a good drug for RA and gave me Tylenol 3 with codeine for pain. He said this way he could give refills and he felt it would make me less tired. He said he hoped I wouldn't need it long term.
He did say that my thumbs were swollen from RA which is something I knew all long but that my old rheumy denied.
What I didn't like of course immediately attributing my fatigue to meds I don't even take daily and not the RA itself. I also didn't like the following statement:
"With MTX and a biologic most people with RA will achieve remission".
That's sounds great but it doesn't correspond with other people's experiences. It also doesn't correspond with a boat load of medical studies and literature. What do you guys think of this doctor's very optimistic statement?
Greg
I saw another rheumy today and he did seem more knowledgeable than the last one. He added MTX to my meds and couldn't understand why I wasn't on it with the Enbrel. I realized later he didn't add Folic Acid however.
For fatigue he tended to blame hydrocodone and said it wasn't a good drug for RA and gave me Tylenol 3 with codeine for pain. He said this way he could give refills and he felt it would make me less tired. He said he hoped I wouldn't need it long term.
He did say that my thumbs were swollen from RA which is something I knew all long but that my old rheumy denied.
What I didn't like of course immediately attributing my fatigue to meds I don't even take daily and not the RA itself. I also didn't like the following statement:
"With MTX and a biologic most people with RA will achieve remission".
That's sounds great but it doesn't correspond with other people's experiences. It also doesn't correspond with a boat load of medical studies and literature. What do you guys think of this doctor's very optimistic statement?
Greg
I'm also tired of beating around the bush with these doctors. It seems they don't want to hear that maybe my stressful job, early hours and 1 hour commute can contribute to my condition. I'm more convinced than ever that my work and early hours and lack of good sleep contributes to my flares. I've been off now for 3 days. 3 days and I feel like a new man with such minimal pain that I couldn't care less about it. I've observed time and time again that when I have a few consecutive days off I rapidly improve. When I state this it seems to fall on deaf ears and I have no idea why. I have decided I do want to work at least another year but if I have a year anywhere near as bad as this one then I want to have a say in taking what they refer to as a disability retirement. It doesn't mean I can't work, just that I can't do my present job without a whole lot of pain and discomfort. Is it to much to ask that I have a say in this and that a doctor take my claim seriously that when I modify my schedule and work from home at my part time computer business then I feel great? I know in my heart that it is the key to me even coming close to medical remission. I've told 2 doctors this. The first gave it zero consideration and said Enbrel will work through all the stresses of my job...100%. (We know that's a crock.). The second doctor listened with half an ear and said "maybe" when I asked if stress and a tough work schedule may contribute to my flares and then changed the subject. Apparently my own observations count for NOTHING!
Now I'm on a roll. Yes I want to get better. Yes I would love to teach so long as I'm not suffering from morning fog like I do daily and wicked flare ups as I do weekly when I'm pushing myself to work hard all week. I have no intention not to continue to try even though I know how much better off I'd be if I changed careers now. However, Being tremendously penalized for retiring early is no way an option which is why I need a sensitive doctor to back me at some point.
Also, if I continue this 4 day a week schedule that happens to be the only way I can keep working I will no doubt be told to apply for a disability retirement anyway. It would be pretty sad if my own doctor wouldn't back me while I went into financial ruin which is why I'm going to discuss this with my GP and the doctor who has treated me for chronic back pain for the last years. The panel that decides my fate, should I ever get to apply, has not denied an RA, chronic pain, or degenerative disc disease ever as far as I know and could look up online. This is a totally different procedure than SSDI and I'd still be allowed to work an easier, less stressful job should I desire to do so.
Sorry for the ramble. I want a doctor to not only treat me but to also listen to me as well and I haven't found that yet and that really makes me anxious. I think given my anxiety I need to be more direct in my questions to this new doctor and if he talks over me then I'll have my answer and keep looking. I can go on about these doctors for hours and I guess I'm fortunate that I've never been in this position before. If you guys have advice please share.
Thanks!
1. prescribe physical therapy
2. inject cortisone in different areas under fancy pants "guided imagery" you know a better shot with an x ray during, say than your rheumie - deeper and more on target with more crap put in
3. other crap like facet nerve ablation (look it up)
but NO medication. in fact the signs in both offices I have been in go on and on and on about how they will NOT prescribe. (how welcoming, not)
so unless you want or need deep guided injections of cortisone, feel like going to PT or want your nerves fried, you aint going to get prescriptions from these places
my rheumatologist does NOT presribe pain narcotics but she does prescribe neurontin (does not work) and light baby doses of muscle relaxants (depends on whether it will work)
my PCP does NOT prescribe pain narcotics
my surgeons have all prescribed 10 days sometimes with a renewal for each surgery I have had
i have had some success with motrin (800 mg), naprosyn (aleve higher dose) but I know others on here Sally et al are allergic or have stomach bleeding from nsaids but if you happen not to, give them a try.
to me nartictocs are like prednisone they mask the pain, having gone this long with different types of reactions to what I need for pain on a non narcotic level, , I am used to it. it is like the devil I know. it's probably why i accomplish so little. i can always feel the synovial fluid and the restrictions and pain in my joints so I move less. you all probably move more which is probably a good thing
depot
maybe its because you are so newly diagnosed that they are more optimistic than say if you had been through about 5 or 6 biologics already, and every dmard known to person kind. trying to assume best intentions kinda sorta
depot
I'm in the Northeast as well and there are pain management doctors in southern Connecticut who prescribe narcotic pain meds. My physiatrist used to but in small doses. Both rheumys do. Plus I've looked up quite a few in the greater Bridgeport area and several do prescribe narcotics. You are expected to sign contracts, submit to random urine samples, have never been treated with suboxone, etc.... They do exist however. Some states may be better but apparently some are worse. Tramadol is not a true narcotic. It helps me somewhat. Most docs around here give it out very easily. If you take it with Motrin you'd get the same analgesic effect as hydrocodone according to studies. Can you ask for Tramadol at least?
I've heard of these stingy rheumys but I would think that most will prescribe some type of pain med for acute pain even if its Tylenol with Codeine or Tramadol
it's a chronic til death disease. I don't want to take narcotics until death so her viewpoint meshes with mine. i can sees how others might have to leave her practice if they could not get her viewpoint to mesh with their's.
i think the posters about narcotic drug addiction in the pain management clinic I go to are over the top. but I am there for the deep guided injections so I keep my getting pissed at bay.
if your meds are what you want then you are lucky for your area. it does vary it appears.
I have had tramadol in the early diagnosis days of my RA when I did not have my current rheumie. you know the "bridge" period. It did not seem to agree with me (itching and such) so that one is out for me. I am glad it works for you.
I love 800 mg motrin i crush em in applesauce but there are people on here who can not take nsaids. I am lucky i can take nsaids.
depot
I can take NSAIDs and I prefer them over narcotics. Currently I'm on Meloxicam. I'm taking a break from all narcotic pain meds. If I really need them badly I''ll fill the tylenol with codeine the new doctor gave me. It is weak compared to other pain meds but much easier to taper off of. The more I think about this doctor the more I get pissed at his arrogance. I don't think he's for me though I will try him again. I do think he was very smart to substitute tylenol with codeine for the vicodin though. Stronger isn't always better and I appreciate him not wanting to get me caught up in taking meds that are euphoric feeling and super addictive!