View Full Version : Next step up from pred?
12-28-2012, 02:08 PM
Hi everyone, hope the festive season is proving to be more enjoyable than stressful for you all!
I'm just waiting for an appointment with my new Rheumy and I'm trying to be as prepared as possible so I don't sit there wide eyed and just say "yes doc, no doc, whatever you say doc" and leave feeling like I didn't get what I wanted from the appt.
I've been on prednisone for nearly a year. Started at 25mg for 3 weeks which made me feel horrendous, i bloated so much I could barely walk. I went down to 7.5 and stuck there for a while and in the last few months have been trying to get off the stuff but have only managed to get to 5 and I feel shocking. I've never felt a great benefit from it and I'm unhappy to be on steroids for so long as I dislike the side effects I'm experiencing. It's not worth the very little benefit I get. I still feel terrible. (Also taking 400mg plaquenil)
So what's my next step? I have no organ involvement that I'm aware of (possibly something going on in the lung area...not sure, getting that checked too.) All of the other meds I read about seem very serious...things my brother takes to stop him rejecting his transplanted kidney! Not something I feel I should be taking to stop joint pain and fatigue.
Basically...(sorry, I know I ramble)....I'm wondering if there is a baby step? What kind of meds are offered to people in my situation, getting no relief from pred but their lupus isn't *that* serious? I just want to be armed with some info about meds that may be suggested to me but feel completely swamped by anti-rejection drug and chemo drug info!
Thank you for reading, any help is much appreciated xx
12-28-2012, 04:22 PM
I can't take steroids, so I had to go directly to MTX. It wasn't too bad, as I'm sure you've read on threads here.
If that's what the doc says is your next step, come back to read the threads and ask questions.
There are other folks here who are taking other meds - I'm sure that they can tell you more.
Take care and good luck.
12-28-2012, 04:28 PM
Mtx helped me a lot, with very few side effects. I also had no serious organ involvement.
It sounds scary, but for many of us it really isn't bad. Just keep up with doing your blood work every few months to make sure your body is handling it okay. I also gave up all alcohol and drink a ton of water, just to be extra careful. Oh, and taking folic acid mitigates a lot of the side effects.
12-29-2012, 05:05 AM
yep, i will agree with the other 2 ladies....
mtx was the next step for me.
mtx and pred at first,
then weaning off of the pred.
i was up to 20mg of mtx,
but down to 10mg at the moment.
I take prednisone, Cellcept, and plaquenil. I only took mtx when I was in a really bad flare. Idk but too me mtx is a pretty serious drug so i'm wondering how everyone else is able to function on it because I hated the side affects that it did too me. Well so is cellcept but my doctor is a butt face and doesn't like to change anything even though something is not working.
12-29-2012, 10:13 AM
For me, like Plaquenil, I had more Mtx side effects in the first couple of months - now I don't have many - my body has adjusted. And it DOES make me feel much better. my Rheum started me on a very low dose and gradually worked me up to 25mg/week as I weaned off the Prednisone (I had been on 60mg/day of that) - doing things that way worked very well for me. the whole process took a couple of months. I am now down to 20mg/week of the Mtx. Also, we found that splitting the dose so I take 10mg on Monday night and 10mg Thursday night works best (always on a full stomach). It makes me very sleepy, so I usually sleep GREAT on those nights. Sometimes it's hard to wake up in the morning, but once I am up I feel fine.
I have lost some hair on the Mtx, which I don't love, but it's worth it. I also had some acne for a while due to the altered body chemistry, but I changed my skincare routine and it's gone now.
Everybody is different, but sometimes you also have to give yourself time to adjust to stuff - don't judge a drug based on a week or two, unless it makes you really sick or you are allergic to it.
This is going to be short because I am not in a good place for posting right now but it is really important to remember that just because you can SEE Lupus doing anything doesn't mean it isn't affecting things inside. I know the meds are scary but not near as scary as what the disease itself can do. I am living proof of that.
Always pay attention to the medicines but please never overlook what AI disease can be doing quietly to your insides
12-29-2012, 05:54 PM
I hope you're ok tgal, thank you for taking the time to respond.
I've been looking into mtx and its really good to get some "real person" feedback as well. It sounds good, but im not sure I will get the go ahead because of interactions with some of my other meds (mainly carbamazepine for bipolar disorder) and because I already have bad liver results...and then theres the lung issue...i've read its not great for people with lung problems and i'm not sure whats going on with mine yet.
Super stressful time at the minute too because my partners mum who is back in the UK has fallen and broken her hip, meaning my partner is taking an emergency trip home. I'm really not doing great at the moment and i'm emotionally at the end of my tether...not sure i can muster the strength to keep my head up for 3 or 4 weeks on my own here in NZ.
I just can't wait to see a rheumy and get some changes in motion...somethings got to change and i've got to start feeling better soon!
12-30-2012, 10:23 AM
It definitely is true that Mtx cross-reacts with LOTS of other medications, so it may not work for you - hopefully your Rheumy can come up with some more options. My doc did say that at the lower dosages of Mtx, the cross-reactions are not such a big deal - many of them that are listed in the literature are based on chemo-level (cancer treatment) dosages, which are WAY higher than what we take for lupus.
There is an excellent drug reaction checker at the website Drugs.com - you can create an anonymous profile and track all your medications there - I find it incredibly useful. You can even plug in supplements and OTC medications.
Best of luck to you in working things out...and remember to be kind to yourself in this time of stress!!!
12-30-2012, 03:53 PM
Yeah I was thinking the interactions may be more of an issue on higher doses. Well I know which Rheumy I'm going to see now, just need to wait til the office opens up again in the 7th and then I can book an appointment. One good thing about being forced to go private is that hopefully I won't have to wait too long. And i think the guy sounds good...a senior lecturer in medicine, president of the NZ rheumatology assoc. 2008-2010, medical advisor to arthritis New Zealand and clinical head of wellington regional rheumatology unit.
12-31-2012, 05:46 PM
Take good care of yourself.
I hope that this new rheumy is great for you. He sounds impressive.
Let us know what you learn from him.