Am I the only Lupas patient on imuran, I was looking at a bunch of profiles and i didnt see anyone eles on an immunosurpressant, I dont want to be nosy or anything but how do yall controll your lupas without it, ive tryed to stop taking it and i Always have a bad flare up. Im just curious cause im scared of what imuran can cause. Please let me know if there are alternatives thank you.
Hello Christie,
It's just catching the right profile at the right time as there is member's on it and member's who have taken it also but you'll get replies in due course.
Christie i'm not on meds at the moment because my body as got to the state of rejecting medication.....the medication's we take suppress our immune system, in otherwords they help our own body's from being attacked with the Lupus and when your coming off it...your lupus will becomes active more.
I was going to recommend plaquenil to you but i see your already on it.
Love Terri xxx
Yeah and i just resently got off the prednisone, im feeling pretty good i havent had a bad flare in almost 2 weeks, but the imuran scares me, i guess i just have to weigh out the odds, but thank you for your responce.
Christie i was offered prednisone and refused it being a steriod and the plaquenil only lasted on me a year & half, then they took the last resort of Dapsone very strong drug concerning your organs...well they pulled me off it quickly because apparently my body is rejecting the meds from internally.
I was born with the disease and was just reading your profile...i won't say it's not easy to cope with because it's not but you just have to learn to except it and live you life the best you can and also get on drugs that you feel comfortable with and what you think is helping.
Besides saying you have Lupus do you have any skin problems besides or any autoimmune diseases besides connected with it, if you don't mind me asking.
Christie said:
Yeah and i just resently got off the prednisone, im feeling pretty good i havent had a bad flare in almost 2 weeks, but the imuran scares me, i guess i just have to weigh out the odds, but thank you for your responce.
Hi Christie! I’m a newbie, but I try to get involved as much as I can, so I can help and learn :)From what I’ve learned, steroids are what the doctors resort to when Plaquenil doesn’t help. They are supposed to protect and prevent organ damage, because they are anti-inflammatory. So if the doctors suspect you have any risk of organ involvement with Lupus, that’s usually what they will put you on. Some people don’t respond to Plaquenil or steroids well, so then they try immunosuppressives to keep our over active immune systems at bay.Some people take a combination of stuff. Immunosuppressives are supposed to aid steroids and help them work better so you don’t need so much.
The way that people are treated for Lupus depends on what that person is experiencing. I’m not on any steroids because so far, my major organs are not showing signs of damage. And because of the side effects, the docs will weigh the pros and cons before putting you on steroids. I try to manage the best I can on Plaquenil which is an anti malarial drug used in Lupus patients. It also has side effects. I still have flares, but I feel better on it than off it. Long story short, don’t try to ween yourself off of anything your doctor tells you to take. See how it works for you, and talk to your doctor if you feel it’s not working out, and see what alternatives you have.
Hi Christie,
I have every symptom for lupus except the rash and the negative brain MRI, not yet the diagnosis. I do have Psoriatic Arthritis, Raynaud's and Sjogrens as full diagnoses, and I am 10 shots into Enbrel, an immunosupressant. I felt it work the first shot I took, and still do. Of course it will not undo the damage to my body that the disease has already done, the most obvious it the joint cartilage, but it has made a great difference in my mobility and pain. These biologics are so impressive, they target the area where they need to go, right down to the very cell!!! They are considered the meds of the future! Sure beats the SX and MX I had to start with, nothing but SEs from those! I highly recommend the biologics!
Hope they are in your future!
SK
Yes acually my rhumatologist thinks i might have sjogrens syndrom as well, i have alot of problems with my salivary glands swelling up. I also have raynauds syndrom with the lupas, and i used to get skin leisions BAD when exposed to sunlight but since i wear sunscreen and stay out of the sun i dont get them at all, i still get the butterfly rash with flareups but thats about it. I just cant take prednisone the side effects are worse for me than the flareups.
Tez_20 said:
Christie i was offered prednisone and refused it being a steriod and the plaquenil only lasted on me a year & half, then they took the last resort of Dapsone very strong drug concerning your organs...well they pulled me off it quickly because apparently my body is rejecting the meds from internally.
I was born with the disease and was just reading your profile...i won't say it's not easy to cope with because it's not but you just have to learn to except it and live you life the best you can and also get on drugs that you feel comfortable with and what you think is helping.
Besides saying you have Lupus do you have any skin problems besides or any autoimmune diseases besides connected with it, if you don't mind me asking.
Christie said:Yeah and i just resently got off the prednisone, im feeling pretty good i havent had a bad flare in almost 2 weeks, but the imuran scares me, i guess i just have to weigh out the odds, but thank you for your responce.
thank you for your advice, my doctor hasnt said that my organs are being damaged so i take that as a good sighn....i hope.
RisaRae said:
Hi Christie! I'm a newbie, but I try to get involved as much as I can, so I can help and learn :)From what I've learned, steroids are what the doctors resort to when Plaquenil doesn't help. They are supposed to protect and prevent organ damage, because they are anti-inflammatory. So if the doctors suspect you have any risk of organ involvement with Lupus, that's usually what they will put you on. Some people don't respond to Plaquenil or steroids well, so then they try immunosuppressives to keep our over active immune systems at bay.Some people take a combination of stuff. Immunosuppressives are supposed to aid steroids and help them work better so you don't need so much.
The way that people are treated for Lupus depends on what that person is experiencing. I'm not on any steroids because so far, my major organs are not showing signs of damage. And because of the side effects, the docs will weigh the pros and cons before putting you on steroids. I try to manage the best I can on Plaquenil which is an anti malarial drug used in Lupus patients. It also has side effects. I still have flares, but I feel better on it than off it. Long story short, don't try to ween yourself off of anything your doctor tells you to take. See how it works for you, and talk to your doctor if you feel it's not working out, and see what alternatives you have.
I also have some trouble with Prednisone, I can only take it in very low doses for a short period of time, it is not nearly as helpful this way, but...
Hi Christie,
Alot of people can't take the affects of alot of medication and if you do have sjogrens which he thinks...you need to find out what degree you do have it at, wheather it is primary or secondary sjogrens, as secondary carries more affects to the system plus if you join the sjogrens group on the main page you'll find such alot out about it.
With the Lupus, Raynauds, and if you have sjogrens it sounds like you got A1 Diseases overlapping Autoimmune Diseases because Raynauds carries autoimmune Diseases with it also.
Love Terri xxx
Hey you, your not being nosy. Its a valid question just like any other question. Some Lupi's can go without any drugs at all some can with little meds orthers have to take it by the handful. I am currently on Imuran. I have been on it for about 9 month. I started at 50 mg because my doctor didnt believe me when I told her my Lupus was still very active. Then she did some lab work and called me and told me to take 200mg. So I have been on 200mg for a wile now. My Lupus remains very active. I take several other drugs as well. Imuran will take a wile to build up in your system! I have never had any side effects of it.
Hi Christie,
Hearing that your organs are ok is one good thing but if your ever on a med you don't feel right or comfortable with you see your specialist straight away or as soon as possible if you flare up quickly afterwards and see if you can be changed to something else.
Plus alot of meds have to be tried until your body finds one which it's suiteable with and i hope the member's advice as helped you a great deal.
Love Terri xxx
Thank you all for the advice i really appreciate it, it helped me alot thanks:)
Hello Christie,
I'm pleased our advice was able to help you and your welcome anytime.
Love Terri xxx
Christie said:
Thank you all for the advice i really appreciate it, it helped me alot thanks:)
Hello, I also take imuran but I just started 2 days ago...the plaquenil wasn't working well enough so now I take both. I know there are risks, but I am so anxious to feel better. My doctor said so long as I go to the lab as required it should be ok. Keep me posted on how it's going : )
Hello Hilda,
I had to stop the plaquenil as it stopped working after a year & half but i do wish the best with the combination of plaquenil and imuran....and like your doctor said going to the labs are very important.
Please keep we updated also.
Love Terri xxx
Hilda said:
Hello, I also take imuran but I just started 2 days ago...the plaquenil wasn't working well enough so now I take both. I know there are risks, but I am so anxious to feel better. My doctor said so long as I go to the lab as required it should be ok. Keep me posted on how it's going : )
My white cell count is at an all-time low of 1.2. I've been on Prednisone and Plaquenil through the years, but now I will be taking Imuran or generic apparently. I see RA doc tomorrow. She already discussed this before my labs came back critical the other day. She did say that it sounds counter-productive because it lowers your white count, but it supposedly helps in the long run. I guess I'll see. Hoping the best for all of us.
Hello xIntonetwo,
How did things go with your rheumo appointment...please let we know.
My youngest sister was diagnosed this year with lupus and her white cell count was to high and they've never bothered to adminster anything for it....mind you she's told me she's totally refuse any meds for lupus in general.
Here a link about white cell counts being low and i do hope your rheumo as been able to help you.
http://www.localhealth.com/article/low-white-blood-cell-count
Love Terri xxx
xlntonetwo said:
My white cell count is at an all-time low of 1.2. I've been on Prednisone and Plaquenil through the years, but now I will be taking Imuran or generic apparently. I see RA doc tomorrow. She already discussed this before my labs came back critical the other day. She did say that it sounds counter-productive because it lowers your white count, but it supposedly helps in the long run. I guess I'll see. Hoping the best for all of us.