I saw the RD today and told him I want off of the MTX. The side effects are getting to be too much. I had been seriously considering AP but he really deflated that hope. He agreed to stop the MTX and put me on Imuran instead. From what I've read online it doesn't seem much different from MTX and has some of the same side effects. I'd really like to hear from those of you who are on Imuran and especially those who were on MTX at one time before the Imuran. You know, tell me the things I can't learn from reading online, the things only a person who has been on it can tell.
Oh and by the way, I'm no longer undifferentiated. Based on my results with the RA drugs he's narrowed down my problem to Sjrogen's and lupus, but isn't sure which is the more dominant one. He said it doesn't matter because both can cause the neurological problems I'm having and those neurological problems are the reason why it's dangerous (his word) to go off the RA drugs.
I'm really confused right now and very upset. Even though I was feeling better, it became apparent that the disease is still progessing, like the symptoms are just being covered up. This doesn't bode well for the future and I was really hoping that giving AP a shot might actually get me off these drugs eventually, or at least cut down my need for them. I don't know what to do now.
Hi Jesse....gosh, i wish I had some info for you. I hope the Imuran won't give you the same sort of problems that the mtx did. I guess it's good to know what you have instead of a blanket diagnosis. Maybe the Imuran will slow things down. what is the progression with Lupus?Joonie takes Immuran, I believe. Hopefully she'll see this and give some details of her experiences.
I don't know much about lupus yet except that it can be just a mild skin version but more often than not it's systemic and varies in it's progression and prognosis. It can affect any of the organs negatively I believe and is not to be messed with.
I was surprised about the Sjogren's part. I don't have dry eyes and rarely a dry mouth. He said it takes other forms and can affect the nerves as it does in my case. I think I was happier with the undifferentiated label.
Jesse, I have been on Imuran for over a year. I did take mtx early on but it raised my liver enzymes and my doc didn't want to wait for me to try supplements to bring it down. I briefly tried Arava after that but had massive side effects.
I have had no side effects from the Imuran. I do take a B-complex in addition to my regular multi, but I am no longer taking the Rx-strength folic acid I took on mtx. I think I had one mouth sore in the whole time I've been on the Imuran, and can't even be sure it was related. Also, I take SAM-e supplements daily which, among other things, are supposed to help with the liver...I had to reduce them when I was on mtx (because one study showed a possible interference) but am now on them full strength with the Imuran and have had no liver enzyme issues.
On the flip side, I can't say that the Imuran has done anything tremendous for me, but I am hoping it is working to make my biological (Orencia) more effective.
I hope it helps you...let us know how it goes.
I took imuran for 2 weeks. My BP skyrocketed to 180/120 and i had constant dibilitating headaches. along with all the MTX side effects such as upset stomach, chronic fatigue.
Interested in what you RH said about AP?
Thanks Innerglow, your (mostly) positive experience is encouraging. The RD did say to stop the luecovorin so I'm hoping that means Imuran is not as toxic as MTX and that's why I don't need folic acid anymore. I'm just worried that anything that suppresses my immune system enough to make me feel well will also suppress it enough to bring about the side effects the MTX did. Anyway, I promised myself I'd try this for now while I continue my research on AP.
Clufus, the RD said the data doesn't support AP and he even studied it with an AP doctor. He may have had a bad experience because he said that particular doctor was a flake, but believes that all AP doctors are operating on the fringe of medicine. I asked him how he can discount the thousands of people who have done well on AP and he said it's the nature of the disease to wax and wane and sometimes go into remission on its own and people assume that whatever they were doing at the time that's different is what helped them. My niece swears nonni juice cured her lupus but he thinks she's just in a spontaneous remission. I don't know. I still think there are too many people who have done well so that you can't chalk them all up to chance improvements. It just doesn't add up. As my husband reminded me, my RD and the others have invested many years of training, treating and beliving certain things about RA and to acknowledge that they may have been so dead wrong all these years is something they just can't do. All I can say is I'm really confused now. Since he came right out and said it would be dangerous for me to stop the RA drugs, even if I'm feeling better on AP, I have to tread very carefully. I've started doing lupus research and it's pretty scary. At this point I just don't know what to believe.
I'm so sorry you are going through all of this Jesse! My understanding was that AP can be good for mild cases, but not ones like yours, even if your doctor were supportive? I have thought about trying it but my disease is progressing so rapidly that I don't really have time to waste trying it. I'm not sure if you are in a similar situation or not. I hope Imuran works for you!Jesse, I know how you feel and I find myself paralyzed about making a decision because they are two totally opposite theories, each claiming the other is ineffective if not downright dangerous. Unfortunately we are seeing that medical research has been biased for a long time and we consumers are stuck with little to base our decisions on. And even if the research was all completely honest, it still doesn't always point in just one direction. I think there is so much they still don't know about these conditions and we are still walking around in the dark, bumping into things. I have considered whether to try AP, and like you have been just keeping with what my doc says for now until I have more/better information and make a decision. It confuses the issue more for me now that I've had a number of Orencia doses, my inflammation markers are dropping down considerably, but I am still not feeling a whole lot better (of course I have other conditions, so that may also be why I'm not feeling much better). Anyway, I don't have any additional advice, just wanted you to know that you are not alone.Sorry to hear about your DX, Jesse.
I am on Imuran. I am not sure if it is working or not, but I can tell when I miss a dose. I have a little added problems. I take 50mg 2 times a day. It seems to have no effect on my swelling. It is not like it keeps me from swelling or anything like that.
I have no side effects that I know of.
I do know that when I am on Remicade, I feel good and do really good, and I feel I can do without the prednisone. I guess that the Imuran might be helping the Remicade to work more efficiant... not like I know LOL!
I hope the Imuran works for you.
Much Hugs
Guys - there is a lot of info here on AP that is incorrect but I'm slammed on my end. Give me to the weekend and I'll come back and give you some different info.
Pip
Thanks everyone. Sorry for the delay in responding but my one-year-old grand-daughter was staying with us for four days and I was so busy, but loving it! With the little spare time I had I was doing lupus research and it appears it's less clear that AP works for it than for other AI diseases. Again, this could be bad information I'm getting, just to add to my confusion.
[QUOTE=InnerGlow]Jesse, I know how you feel and I find myself paralyzed about making a decision because they are two totally opposite theories, each claiming the other is ineffective if not downright dangerous. [/QUOTE]
Yes, InnerGlow, "paralyzed" is exactly the right word to describe how I feel about this. When I walked into the RD's office I was hell bent on starting AP. I'm going to see my PCP tomorrow anyway and discuss it with him and maybe get his help in seeing the AP doctor for a consultation.
Anyway, I'm really glad to hear of those of you with no side effect issues from Imuran. I can't help but think that if it's going to suppress my immune system enough to make me feel well, it will also suppress it enough to allow those awful blisters to reappear. Oh well, there's only one way to find out, right?
Thanks for being there for me, once again.
Jesse,
I took imuran for two years and had no side effects from it. I was on 150mg a day. I had bloodwork once a month and it was always normal. Imuran is commonly used for lupus and other autoimmune problems so it would seem a good place to start. It often takes 3 months for it to start working though, so hopefully your dr is going to do something to get you through that time. I did not see improvement for almost 6 months. It no longer seems to work for me so I switched to cellcept which has been amazingly effective. Don't be afraid to switch. I wish I had not waited so long to try another rx. There are some really good lupus sites out there that should have a lot of info and message boards. Let us know how you are doing.
Laker
Hi Laker. I'm glad you did well on Imuran. The RD said I'm going to get worse before I get better, I guess because he expects the MTX to wear off before the Imuran kicks in. Guess I better get ready for a bumpy ride.
BTW, I saw my PCP and he is more open minded about AP and is trying to get my insurance co. to put the AP doc in network so I can see him. I haven't completely ruled out AP yet. Still doing research and talking with the AP doc will be very interesting and informative, I'm sure.
I am just going to throw this out there for no particular reason...
I still have a bottle full of minocin in my meds box. I think I took maybe 14 pills out of it.
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