Hate to start out this way on your forum with a "fire drill" of sorts, but in desperate need of "real people" feedback as I'm having a STANDOFF with my Rheumy about going off Pred first vs going off any other drugs first and really hoping some of you can help me out with your opinions and experiences and beliefs.
Here is the situation in as much a nutshell as I can get it in: Also in hopes that it would be helpful, I tried to get as much relevant info in my signature as possible.
So, out of the blue at my reg. appt this past Friday, my RD suddenly suggested that since I seemed to be doing better the last couple of weeks (following a horrible flare and a couple of high dose pred packs back to back) that I should stop taking the MTX and not do anymore remicade infusions (had just had 5th one the day before) either now that there wasn't any more inflamation in my body that he could see or that showed up on new test he just did. Just vaguely referenced that "whatever" (which he originally DXed as RA) I had going on initially must have been transitory and is gone now.
What is so odd here, is that although I do feel pretty darn good right now (comparitively speaking because I of course still have aching wrists, hands and ankles) is that I have been in this same pattern for so long now of feeling sort of good for a couple of weeks then flaring again for weeks and so on and so on for 8 months under this Docs care, so I don't get AT ALL why this would be his suggestion. I would have expected that we might have discussed switching to enbrel or humira maybe...
Or if he really thinks I am "all better" now or never had anything wrong with me other than Pain Syndromes (that he doesn't seem to believe in) of some sort and maybe some osteo in my thumbs which he said he would send me to an OT for. And (if you are still with me here) this is where it gets really funny because that is who sent me to him a year ago because they felt it was systemic and that is when he DX me w/ seropositive RA so I will now be going full circle here... Isn't this insane sounding or is it just me???
I unfortunately have no faith at this point (just a few days into feeling at all well) in there being any possibility of me being "cured" all of the sudden since it just seems like one of my typical reprieves following high doses of steroids.
But in any case, if we were going to be backing off drug treatments right now, shouldn't the PRED be the FIRST to go (which btw I do even recognize would need to be done slowly.
This seems to be a very active involved well read forum so I am really anxious for your feedback via experience and readings. From everything I have read (a lot) Pred is the drug you want to try to be on the shortest time and the smallest amount possible.
I really feel like my doc is just losing it or trying to get rid of me as a patient and I am quite upset. But no matter what is going on here, PRED is the drug I think I need to get off of before doing anything else!!!
Again sorry to have to be starting this way. But thank you in advance for any and all replies to do with your experiences and beliefs on this whole steroid issue and I hope that I will soon be able to be a conributing helpful member too!
Hi AdeleRenee!...welcome!
I'm with you..I'd be wanting get off of the prednisone first. I'm certainly not a doctor, but I'd be questioning a lot of what your doctor has suggested.
I'm going to stand back and let the veterans answer this. I just wanted to tell you there's no need to apologize for any way you choose to post for information, first time or any time. You need what you need and there's no rule saying you shouldn't post a certain way until you've been here awhile. Your questions are valid and your worries are something that need to be addressed. Your instincts are good and with the veterans here to help, you're going to get the information you need.
Oh, and WELCOME!
I agree. I would come off the pred first, slowly and see how you are feeling from there. If you are sill feeling alright maybe you are able to maybe go down on the other meds that you are on. But pred is definitly not something you would "want" to be on.
Also, welcome to the board. Feel free to ask any questions you may have.
pred first
but get another opinion before doing anything
Prednisone would be my guess to taper off. I have to stay on 5.5 mg. because my adrenals are sluggish and not producing.
I'm not sure I understand why he wants you off all meds at once, instead of systematically stopping meds.
Have you had xrays of the painful joints? If yes, what did they show?
Personally, I would be tempted to seek a second opinion or at least call and talk to your pcp or internist. Lindy
Your dr must have felt the RA was really aggressive to put you on Remicade, 25 MTX & Pred so quickly, your dx hasn't been a year yet. Did he say you could choose which one to quit first? If you are flaring every couple of weeks, why does he feel you're ready to quit your medication, or that the medication is at least giving you that much relief? Sure seems strange to me. I agree with the second opinion suggestion.I'm a newbie on this site and have listened to senior members who have helped me re group my own feelings with regard to my health. My Dr. retired in August this year. I was told to order my records, and did so immediately. Thankfully, I did. I was with him for almost 30 years. Through the 17 years of which I became sick, he took over my case more and more, removing me from my Rhumie, in fact all specialists, telling me he would treat me since all I was getting was drug therapy and blood work. I was part of an HMO [locally called HP]. When my records arrived I read them immediately and was astounded, no dumbfounded at what he had written about my condition. All of my complaints of pain was not listed; he belittled the fact that I was on pain medication saying I was just stressed in my life, and stated that he had warned me of its use. He wrote that he wanted to take me off all medication, but that I was uncomfortable doing so. Gone were any stats on my diagnosis from these other specialist physicians, Cutting to the chase, he made me feel like a fraud, like I was crazy! ...A month later, he died. His obituary was quite large, as you can imagine a Dr. that long in service would be. In the Obit. was a statement that he had been the head of HPR! This bit of info was very enlightening and completed the puzzle regarding my treatment. This was an hmo that went bankrupt in 2003. The Doctors were given bonus's for seeing patients LESS. I couldn't feel more betrayed. I can't tell you the years of suffering because he didn't believe in fibro, or because he never saw me throwing up during a 3 day migraine bender. No new drugs were ever offered as treatment. He would only say how expensive these drugs were and how we had to be careful of my kidneys. I now believe it was how he wanted to look to the insurance board that was more important,than me.
All I can offer you is my experience. Health care in America will get worse, not better. Where ever you go, get your records, x rays, right away. You know your body better than anyone else. Trust your gut and question the hell out of every move they make.
I was diagnosed 17 years ago with RA, Lupus, Fibro, cluster migraines and Nephritis of the Kidney. I don't know what your insurance is, but I have a sneaking suspicion that it may be a factor you have or have not considered. I am now with a new Rhumitologist who happened to know my old Rhumitologist. What a nightmare. It's very hard to fight for your life when you don't feel good, I wish you all the best.
Sorry for the long post, just a story I had to tell
Hello and welcome, Adele! Sorry you've got the cRAp, but glad you found us!
I'm not sure what your doctor is trying to do?? It sounds like you still need to be treated, especially since you're having flares. I'm so sorry that you're having to deal with that pain. I agree with you trying to get a second opinion. You really need someone who is going to listen and work with you to manage the disease. Your current doc sounds really flippant. We all understand your frustration with him.
I also agree with everyone else - prednisone should be the first to go. It needs to be tapered though. Personally, I hated prednisone with a bloody passion, but it does get the job done. You really need to be on something to help manage your symptoms!! And it sounds like the Remicade wasn't working all too well. Try to try something new, right? Enbrel, Humira... something! (Check out some of the threads about AP, too. There are quite a few people on this board who swear by it. Might be a good option for ya?)
I hope you've found some of the answers you were looking for and I also hope for you to find a compassionate RD. Welcome to our little support family! You don't ever need to apologize for venting; that's what we're here for!!
Hope you have a superfantastic and comfortable evening!
To elaborate a little more, my liver tests have always come back perfectly fine so I know it isn't about that. Also, I actually did get a 2nd opinion several months back, but stayed with first doc as his treatment approach seemed more modern - like being willing to start me on Remicade in the first year when my xrays and mri show no damage.
The timing of this doc's behavior is just so odd to me and his treatment decisons now so confusing. I am definitely in far better shape than I was before mtx and especially remicade (down from 3-5 hours morning stiffness to 1-2 and actually have good weeks now instead of just good evenings here and there).
After reading Judy's post, and with nothing else making sense, I am now wondering if this might be some sort of insurance type of pressure that is going on here???? It looks like I am going to have to find a third RD (and I'm in a small town so it won't be easy or quick).
Meanwhile, since I have the presriptions, I think I will just go "ama" and continue the mtx anyway and start tapering the pred instead by myself over this next month while I am figuring things out. Does anyone know of a reputable source that could help me safely taper the pred? I've been back on my maintenance dose of 7.5 for 5 days right now. I am probably going to flare as I haven't made it more than two/three weeks this whole year without doing so...
But just in case I get lucky somehow then I guess my next real concern is how to know if I start having any kind of adrenal insuffiency? That is, if I do manage to get the pred down to 5 and below or off of it altogether? Is that just something that you can "feel" yourself going into?
Again thanks so much all. I am really glad to be here!
Regards,
AdeleRenee
Hi Adele,
I am on 4mg of medrol now and my doctor told me to wean this way, take 4mg two days then skip a day, do this for one month, then take 4mg every other day for one month, then take 2mg two days skipping a day for one month then 2mg every other day for a month and then the next month if all is going well to stop taking the medrol.
Another way I have done this is to go down by 2mg every month judging how I am feeling and whether or not I am ready.
It is a slow maddening process but the way it must be done so your body does not go into a flare
I hope this helps!
Maria
WOW!
First...welcome to AI!
Ok, this almost sounds like a test for an RD intern! lol. I was only on pred on a daily basis for a very short span of time when I had switched docs but then went back to my initial RD. SO I Am no help there.
As far as the other meds....tough one. Not sure why he would want you to drop them, makes no sense like everyone has stated. I would think he would taper the more severe drug first, like the pred then the Ramicade and keep you on the MTX for a bit then adjust as per bloodwork.
Or...at the very least, taper the Remicade down first then the pred and work with the MTX.
Sorry I am not much help on this.
jode
AdeleRenee, I would try and find another RD that you can get another opinoin from. Besides putting you on Remicade what was the difference between the RD you are seeing now and the RD that you got a second opinoin from? Something does not seem right w/ what he is having you do. I dont why a dr would want you to be on Pred. Have the meds worked for you, besides the ocassional flare?