Tired!!!

I just increased my Imuran up to 100mg and started to decrease the Pred but Im so tired I don't if this a side effect from the meds, Or a part of a flare from the decrease of the predisone. Im starting to have a really hard time with this I feel like Im in a losing battle. I just want to feel better..

JessieRose, I'm sorry you are so tired - I think the severe fatigue is one of the hardes things to deal with. I don't know much about Imuran so I'm not sure about the side effects. The decrease in prednisone could be a factor in your fatigue though. For me, when I'm at higher doses I have more energy, but if I go too low on my prednisone I get very fatigued again. I think it would probably be a good idea to call your rheumy since your fatigue is so bad. He/she can hopefully help you sort out what might be causing the fatigue and make any med adjustments. A lot of us need a very very slow and gradual taper from prednisone. Keep us posted and I hope you get some relief soon. Take care

Hey Jessie,

 

No, the increase of Imuran shouldn't be making you so fatigued.  I'm on 100mg of Imuran.  In fact you should start to feel a lot better, but it will take a couple of weeks for the new dose to kick in.

 

Sounds like you're in a bit of a flare up.  My guess is that it's the taper of prednisone that is causing you to feel like this.  You might want to run this past your rheumy, and see if you need to go back up on it, and stay there for a while. 

 

Hope you feel better soon,

Ginny

Well, I'm still on prednisone actually. I have been since day one of my diagnosis, back in 2000.  My highest dose was 40mg.  Most of these last 7 years I've been on a dose under 10mg.  Right now I'm on 8.5mg.

For many people, the combination of prednisone with either Imuran, or plaquenil, Cellcept, etc, is the best treatment.  Some bodies NEED prednisone as a long term, or life time treatment.  I seem to be one of those people.

Prednisone is a fantastic medication. It has many side effects that doctors don't like, which is why they try to keep us at as low a dose as possible.  But if you need to be on it, you need to be on it!  Part of having lupus or a disease where the adrenal glands don't work the way they should, means that prednisone use will save your life.

Don't be in a hurry to get off this medication.  If you feel much better being on a higher dose.  Stay on it.  You're doing more harm to your body by going up and down and up and down on the dose. Or even being off it entirely.  You will get to know your body very well and the signals it's telling you.  I find that even a small increase or decrease of 1.5mg will dramatically improve the way I feel.  It doesn't take much!

I have found that the combo of prednisone and Imuran has been incredible.  I have my life back. My lupus is very quiet, and it's because I have kept the prednisone in my system.

I hope you have a better day today Jessie.  Stay encouraged!  You're learning more and more about how to manage your lupus and your medications.  This is good!  Knowledge is power! 

Ginny

i am also one of those who has to be on prednisone for the long run, my lowest dose was 5mg every other day, but after i flared in '03 i couldnt go back to that now my lowest dose will be 5mg every day. but that's ok because my doc said that it has the same effects as 5mg every other day, when i have been on my maintance dose for a while i actually will lose all the side effects that i had when i was on higher doses. what dose of prednisone are you on right now? and how much are you tapering by? and i have been on prednisone since '95, and i have been on imuran, plaquenil, and now i am on cellcept, none at the same time though. i hope you can figure out whats going on and i hope that you feel better, make sure you talk to your doctor.

To answer your previous question Jessie, it took me about a year to really start feeling better.  To the point where I could start to taper down the prednisone.  I had a lot of inflammation going on, so it took quite a bit of time.  I did notice the drugs really kick in and start to work in about the 6 month time frame.  But to achieve a place where I felt I could work 15 hours a week part time, was a whole year.  It's different for everyone though.  Your situation might be quicker to recover, or take longer.  It all depends on the person, how aggressive the treatment is (yours sounds aggressive, which is good), and how well you look after yourself.  Diet, sleep, stress, etc.  It's really an entire lifestyle change we have to make in order to conquer this!

 

I'm just reading your last posting here....... read, read, read....Okay!  I think your rheumy has you tapering too quickly.  If you've been on 20mg for a month, that's a pretty long time.  The formula for a successful taper (hopefully), is 2.5mg every 2 weeks.  So right now, you're tapering at a rate of 10mg a week!  That's way too fast.  That's why you feel like crap!

 

I wouldn't wait to call her Jessie.  Get on the phone today if you can, before the weekend and let her know your concerns.  That taper is too quick.

 

Cellcept is a fairly new drug that is used for lupus.  It's an immune suppressant, similar to Imuran, but different too! Hehe... I know Lynnwood has a lot of experience with it and has had really good success on it.  I'd talk to her about it if you're curious.  I don't know very much about it.

 

I find living with this disease very frustrating too Jessie.  I was also very active before I started getting sick.  I feel like I've lost a major piece of myself.  Each day is a test of my patience and ability to cope with what is placed before me.  Having this forum has been so good for me. I've learned so much in the last few years being here.  The encouragement I get and the advice and prayers of these men and women are a blessing.  I hope you can find your strength with this too.

 

Ginny

Jessie...

It is nice to be able to come here and vent and nobody is shocked.  And, I think I'm on my second pity party this week.  Luckily, today's isn't as bad as the one earlier in the week.  Some weeks are just better than others.

I had to have an MRI for headaches too.  Turns out mine were rebound headaches caused by darvocet.

Hope you get a really restful night of sleep and you wake up refreshed.

~Kim

Jessie,

   I just wanted to wish you luck with your appt on tuesday and I hope you feel better soon. Keep us updated and take care. You will be in my thoughts and prayers.

                                                              Babs