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jessierose
Regular Member


Date Joined Jan 2008
Total Posts : 102
   Posted 1/24/2008 6:15 AM (GMT -7)   
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


Dakota0917
Regular Member


Date Joined Oct 2007
Total Posts : 100
   Posted 1/24/2008 7:08 AM (GMT -7)   

Jessie...sorry you are having such a hard time.  I've never taken Imuran, so I'm not a lot of help there.  I'm currently weaning of pred and I know that when I tried to drop too much, I got the really bad fatigue.

Hang in there...when you are tired everything seems like it is going to overtake you.  Try to get some rest. 

Hope you feel better soon.

~Kim


SLE: 07/07, Irritable Bowel Syndrome, migraines
400 mg. plaquenil, 25 mg. prednisone, 2400 mg. ibuprofin, 15 mg. methotrexate, folic acid, asacol, caltrate-D, wellbutrin, paxil


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 1/24/2008 8:16 AM (GMT -7)   
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
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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jessierose
Regular Member


Date Joined Jan 2008
Total Posts : 102
   Posted 1/24/2008 9:22 AM (GMT -7)   
I see her next week so I will def mention it to her, Im sorry to sound like such a wimp I just dont know how to deal anymore its really starting to wear on me.
JessieRose


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/24/2008 9:27 AM (GMT -7)   
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
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


jessierose
Regular Member


Date Joined Jan 2008
Total Posts : 102
   Posted 1/24/2008 9:32 AM (GMT -7)   
how long did you stay on the pred and how high was the dose?
JessieRose


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/24/2008 11:03 AM (GMT -7)   

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 can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


jessierose
Regular Member


Date Joined Jan 2008
Total Posts : 102
   Posted 1/24/2008 11:16 AM (GMT -7)   
Well thank you for the info I really appericate it. How long did it take for you to start to feel better in general. Im slowing learning to take it day by day. I find it hard because i was so active a year ago.

Jessie
JessieRose


applesk82
Regular Member


Date Joined Oct 2003
Total Posts : 262
   Posted 1/24/2008 11:24 AM (GMT -7)   
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.
Hugs and prayers,                      If it was easy being a lupie, 
   ~Suzanne~                                      the whole world would be one     
                                                             
diagnosed in May '95 with lupus nephritis, hypertension, hypothyroidism, avascular necrosis (knee) '98, kidney transplant April '06, pseudo-cerebral tumor '07, AVN ankles and hips '07
prednisone, cellcept, prograf, lopressor, allopurinol, synthroid, diamox, OsCal +D, lunesta, celexa, percocet for pain


jessierose
Regular Member


Date Joined Jan 2008
Total Posts : 102
   Posted 1/24/2008 11:40 AM (GMT -7)   
I was on 20mg for a month saw the doctor and she had me up the dose to 40mg for a week then 30 for a week and now back to 20mg. I also take plaqunil 400mg, Imuran 100mg,and all my other meds Zoloft, Asprin,Clartin, what is cellcept?
JessieRose


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/24/2008 2:35 PM (GMT -7)   
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
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


jessierose
Regular Member


Date Joined Jan 2008
Total Posts : 102
   Posted 1/24/2008 6:41 PM (GMT -7)   
Ya how do you do it everyday I do find this site a saving grace for me I can come,and ask questions with other people who are going through the same thing. thank you for listening. I think today is just a bad day, and I needed to have a pity party. I go see my doc on Tue and I have MRI to see about headaches. once again thank you.

Jessie
JessieRose


Dakota0917
Regular Member


Date Joined Oct 2007
Total Posts : 100
   Posted 1/24/2008 7:51 PM (GMT -7)   

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


SLE: 07/07, Irritable Bowel Syndrome, migraines
400 mg. plaquenil, 25 mg. prednisone, 2400 mg. ibuprofin, 15 mg. methotrexate, folic acid, asacol, caltrate-D, wellbutrin, paxil


jessierose
Regular Member


Date Joined Jan 2008
Total Posts : 102
   Posted 1/25/2008 1:49 PM (GMT -7)   
Thank you,
Today is a much better day, but Im also home today not working. Which makes a big diff
JessieRose


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 1/26/2008 8:26 PM (GMT -7)   

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


 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


jessierose
Regular Member


Date Joined Jan 2008
Total Posts : 102
   Posted 1/27/2008 11:23 AM (GMT -7)   
Thank you so much, for your thoughts it really means alot. I will let you know when I get home how it went..

Jessie
JessieRose

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