View Full Version : Feeling scared about options (meds)
01-28-2009, 10:18 PM
My doc and I talked and she asked me to think about a few options. Brief history - I have positive ANA, puffy/swollen joints, joint pain, fatigue and some other stuff, so I'm being called Undiff. connective tissue and fibro but being treated as lupus. I was started on plaquenil and then about 4 months in I had severe hives, erythema multiforme, they thought it was plaq. related and I got off of it, was on prednisone for the hives (can't take it long term tho b/c it drives my diabetes crazy - I am a juveile diabetic). Then off pred. and plaq. and had another attack of erythema multiforme again.
So now I've been off pred for a week or so and so far so good. But she is hesitant to put me back on plaq. so she asked me to think about Imuran and Methotrexate.
I've done a minor amount of reading on them, what she gave me and some drug information from one of my reference sites. And I'm scared.
I'm only 32, I have a three year old son and I'd like to one day have another child possibly. I am a juvenille diabetic and having a rough time with that. I am a nurse and my job is long tiring and hard, my body is exhuasted every night after my 12+ hour shifts. How will these drugs effect me is what is scaring me. The side effects sound like doozies!
This pain is horrible. Vicodin makes the pain tolerable but I can't take it forever and can't take it while working. So that leaves me to find other options as she mentioned. But seriously, I can't afford to take a drug that might make me very sick, I have to work and my job is physically and emotionally demanding. I'd like to be able to be fun with my son and husband too and right now the way my joints hurt and how tired I am, that is a challenge too.
So how do you guys/gals feel about those two drugs?
Do you think there are other options out there I should discuss with my rheum? I love her and think she is awesome and on the ball with things. So I know she'd be willing to discuss things with me.
01-29-2009, 10:09 PM
Hello Cherokee993, :D
I wanted to share my experience with Imuran. I have not been on Methotrexate, so I can't help you there. I'm sure someone else will post soon about that medication, as there are many others with experience.
I've had Lupus for 27 years, diagnosed in my teens. I had a serious, life-threatening case for the first five years and had to go on Prednisone and Imuran to get things in control. I had no choice. They were the drugs of choice back then. I remember being so scared when the doctors talked to me about the possible side effects of both. (The key word here is possible.) I had many more side effects from the Prednisone, for sure. I honestly don't remember having any problems with Imuran. It was the combination of those two drugs that brought my Lupus into control and reduced the number and severity of flares immensely.
I learned how to live my life on these drugs, even conceived both of my children while on Imuran. Which according to my doctor was pretty rare. I was taken off of the Imuran during both pregnancies, and was able to remain off of it after my second child was born. I am currently only on Prednisone, and have slowly tapered down to 1 mg. per day. In the next 4 months, God willing, I will be off of it.
Every single person is affected differently by each drug, and one of the ones your doctor is suggesting may be just right for you. You will never know unless you try it. If you try it and experience side effects that you cannot live with, you can always stop it and try something else.
In my case, I had no choice. I wanted to live. And I believe that the medications gave me the best possible chance to fight this disease, avoid serious organ involvement, and also a chance to have children. Your chances of a successful pregnancy are much better when your Lupus is in control.
My children are my joy in life! I am blessed with a son, who is now 16, and a daughter, who is 12, and I cannot imagine my life without them.
I hope this will encourage you and be of some help in making your decision. You know yourself better than anyone, and you have to do what's right for you.
I am here, if you have any questions.
01-30-2009, 03:15 PM
Gentle hugs to ya cherokee993
It's not easy to make choices like that. I tortured myself over plaquenil.
The thing is...non of us ever thought we would have to choose a medication to be on. Most I ever took before this as maybe an asprin.
I don't have any advice for you. But I share your feelings. I worry about the day when I'm told I have to come off plaquenil and pick one of the uglies to replace it with.
Good luck with your fact finding, I hope you get the answers you need to make your choice.
01-30-2009, 04:12 PM
I take methotrexate, it takes some getting use to but everyone tolerates it differently, im now used to my new dose 10mg was increased 4 weeks ago im due to have it increased again to 20mg which is top dose, ermm i dont feel any benefits from it at the moment but dont be diheartened by that i am holding a very high pain threshold right now but for much longer im not sure how i can handle it, im not on pred but i take plaq and cant take any anti iflmmatories coz im also on warfarin, so thts prob why im not taking to the mtx atm, working with mtx is manageable just take it easy on the day you have to take it and you will be fine
hope this helps, im in flare mode right now so i am sorry if none of this makes much sence
ask me anything about it tho i will answer for you
peace and light
01-30-2009, 04:48 PM
I like SITC, never use to use any drugs...so I understand the choice you have to make, reluctant, unsure...the questions.
Hey have you been tested for an infection regarding your erythema multiforme skin issues? Maybe it is and not a drug reaction if it continues while off the drugs.
Also I have hive bouts, almost daily...have you tried Xyzal at night time and Clarinex (prescription) by day...It controls my hives. I just stopped Prednisone. The Xyzal is great at night...a deep sleep without the itch.
Is your pain joint pain, muscle pain or nerve pain....
If it is for inflammation, maybe you should try an anti-inflammatory like Mobic or even Aleve...coupled with a less potent opiate. Ultracet? A combo that you maybe able to work on. I find if the drug alters my thinking, or my ability to function then I am taking too much.
For muscle pain a common combo is Flexeril and Elavil for Fibromyalgia...relaxes the muscles, promotes sleep which leads to lessening of the pain. It works I have used the combo when my pain has been out of control...
Do you exercise a bit, some form..I know that helps with pain. Stretch built your core muscles. Yoga, light Pilates...balance, walking?
I know being a nurse you are overworked..I know a few nurses..hugs..but do find time to put yourself on the list to care for. Make it..sometimes we have to start there to break the vicious cycle of pain...
Everyone's pain is different for them, their reception to it. For me, I use the above things and have been able to avoid anything such as Imuran and MTX though I still have pain..it is pain I can tolerate.
People have been very successful on either drug and well, some have not and continue to suffer. Again it maybe their reception of the pain. Everyone's tolerance level is different. No one is more or less..if it hurts seek relief. We don't need to suffer needlessly, or be anyone's hero.
MTX is a good steroid sparing drug for Lupus arthritits, active joint inflammation..not for organ involvement treatment.
MTX, one should be on Folic Acid too...
While on these drugs, steroids too we should be monitor regularly through our lab work. Ensure it is being done...
They say Imuran has modest effects on serious Lupus but has the advantage of reducing steriods....usually used together with steroids...
If smoking, I would stop. No more smoke circles encompassing my head. I stopped 6 or is it 7 years ago...a toughy to win, but it can be done. I smoked for 20 plus years...
If overwight, try to lose 10 pounds if able. I know, so hard to do when on steroids. I have a bulge waiting to deflate. Just came off a round of steroids...
Hope this bit helps...
01-31-2009, 11:22 PM
I am also on Methotrexate and it is a tough drug to handle but it may help you. I think it is great after the yucks wear off. I take it on Monday night and normally I am down for Tuesday but by Wednesday I am seeing an increase in energy and less swelling in my joints and the pain is a bit easier to tolerate. Don't be afraid and just know that if you take somehting ad it doesn't agree with you, you can always stop and try something different :wink: Hang in there and let us know what you and doc decide :!: