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Posted 9/25/2013 6:43 AM (GMT 0)
Hi,

Diagnosed with SLE about a month ago and been on prednisone since. It hasn't done a lot of good for me (in fact I'm worse off with it but can't stop taking it or taking less of it because pain will shoot through the roof). Rheumy didn't want to up my prednisone because I'm having an MRI soon and the worry about it worsening my insomnia. Was also not keen because I just caught a cold (just what I need.. :/).

Anyway, rheumy wants me on azathioprine and I picked it up from the pharmacy today. Because I've been quite sleep deprived, I've been highly emotional all day and couldn't think straight so didn't think to ask this today but this just occurred to me: if azathioprine is an immunosuppressant, is it wise to start it with a cold? If, God forbid, there are more problems with blood count etc, how am I meant to know if it's just the cold or something more serious? Or will it potentially make getting rid of this cold harder?

I'm so exhausted that I can't bear the thought of potentially more misery with side effect (I seem to be side effect prone and don't handle nausea very well) that I'm struggling to make myself take it/becoming more emotional/upset.

Should I just bite the bullet and suck it up, or hold off for a few days? I'm SO over feeling like crap. I know you guys aren't doctors but would welcome your thoughts. I'm a little too scared to ask my rheumy.

Cheers.
Posted 9/25/2013 8:01 AM (GMT 0)
Welcome to our forum loopie89! Yeah, it's tough for you and your docs to diagnose illnesses not related to autoimmune. I think that over the years I've become more aware of my body and it's reactions. Lots of Lupies have a low fever every day. I never have a fever unless I'm very ill and even then it can take a day or two to spike.

If I have a head cold along with coughing up a small amount crud from my lungs (sputum) I don't worry about it, but if I have a persistent cough I go to my internist. If I have a chest cold I become more concerned. If my chest starts to rattle when I breathe (I call it my death rattle) I go straight to the ER, even if I'm not running a fever.

I don't think there's any way of knowing if your immunosuppressive drugs will increase your risk of your cold becoming worse. I've been taking Cellcept (a strong immunosuppressant) for 3-4 years. Yes, I have excellent hand hygiene, generally stay away from crowds, wear face masks when appropriate, and certainly stay away from anyone sick, but I currently have a mild cold. I had two teeth pulled this month (thank you Sjogren's) which caused me to flare so along with the Cellcept I just started a prednisone dose pack which starts at 60 mg of prednisone.

You shouldn't be too scared to ask your docs questions. That's why you hired them.

Just a thought: you say the prednisone isn't helping much, but without your pain shoots through the roof so it might be helping more than you think it is. Keep us posted loopie89. Love, Butterflake

Posted 9/25/2013 9:17 AM (GMT 0)
I guess the reason I say prednisone wasn't doing much for me was because I'm don't feel markedly better but for some bizarre reason, feel more pain than I did before anyone intervened, so it's almost like I have to take drugs to sort of function to the level I was at before I started it. One could argue that I would have gotten worse and so the prednisone has prevented me from going that low. That said, I wasn't great, but I wasn't steadily declining and have never had the level of pain when I got to 5mg. The human body is a complex thing - hard to say what's what I guess.

As for the doc and questions, that's what I did today - I asked quite a few questions... Only she didn't seem too pleased that I had done some reading, which I view as patient education as opposed to hypochondriacism because I have already been told what I have, and what she was planning to give me (she even gave me an info sheet for azathioprine)! I guess I've had some pretty bad experiences with doctors and the "power play" that I don't want to put myself in the line of firing again. I don't know... I really hope I've read the situation wrong or that she was having a bad day - couldn't bear the thought of having to "fight" another one of them. Or maybe I just need some sleep to see/deal with things a little more rationally...

Thanks for you input though, Butterflake - much appreciated. Hope the prednisone tames the beast for you soon!
Posted 9/25/2013 2:41 PM (GMT 0)
Hi Loopie89. I've been with my current rheumatologist over six years. I had seen the rheumy before him for 1 year and working with him was a battle. As for the meds, I've tried lots. Some would work for a few months, some not at all, and some (plaquenil, prednisone, Cellcept) I've taken successfully for years. Like you said, it could be that your lupus has gotten worse and your prednisone dose is barely holding you. As a side note, most rheumys start you on plaquenil which takes months to be effective.

As for your reading, I think of it as empowerment. Yes, you must take everything you read lightly. Most of the things you read about lupus, you will never have. You will drive you and your doc crazy if you think you have the latest X you've read about and it will cause you way more stress than you need right now. Just squirrel away what you read for when you're more comfortable with your diagnosis.

Most Lupies go thru a grieving period when diagnosed, and I'm sure you know grieving is stressful. Stress causes flares. Take a deep breath, try to look at your situation objectively. You have a diagnosis and with that are receiving treatment. If you don't like your doc and you're ready to go into battle again, you go girl! Love, Butterflake

Posted 9/30/2013 3:09 AM (GMT 0)
Azathioprin (Imuran) is often prescribed as a prednisone sparing med but it can take 6 months to be fully effective. If you delay for a few days that should be fine since it is a long term med, not a short term one like prednisone. Get past your cold and then start but once you start do not stop without talking to your doctor first.

I was on it for 5 years and most tolerate it well. Some are allergic to it and if you are you will know it within a week or so. You need to have periodic blood tests to make sure it is not affecting your blood counts.....it can lower RBC, WBC, and platelets in some patients. I had to reduce dose after a couple of year but stayed on it for 3 more years at a lower dose.

Bill
Posted 9/30/2013 5:25 AM (GMT 0)
Hi Loopie89:

Welcome to the forum, sorry to hear that you've got lupus. You'll find a lot of knowledgeable people here. They are caring, supportive, willing to answer questions, and just listen. I hope that you'll come and get to know us better and let us get to know you better too.

I've had lupus for 26 years now and I've taken all the drugs out there except gold infusions. Most say that since I've not responded to any of the others the gold most likely won't do any good either. My very first medication other than plaquenil and prednisone was Azathioprin (Imuran).

I was one of the rare few who was allergic to it. I had one of the very RARE side effects I ended up with meningitis from it. Once the medication was stopped and I was treated for the meningitis I was fine. I believe the next medication was Methotrexate in pills form, and then on up the line from there.

I hope that the Azathioprin (Imuran) works for you. It helps a lot of patients and they are doing very well on it. Wishing you the best, please let us know how you do one it.

Hugs,
Barbara
Posted 10/3/2013 7:24 AM (GMT 0)
I'm new to all this I just resently found out I have lupus. Uupuntil a month ago I didn't even know what that was. I'm on prednisone 60mg a day. I am now getting the moon face but i don't let it get me down I get up every morning smile at myself and say todays going to be a new day. If all I had to worry about is what people think about how I look or think I'd
Posted 10/3/2013 7:28 AM (GMT 0)
Be stuck in the house all the time. It goes away once the prednisone doseage is lowered ENJOY LIFE and even thou people are crule keep smiling
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