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I feel like I'm dying!!

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Lupus
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Posted 4/9/2009 1:47 PM (GMT -7)
Help everyone,
I'm in week two of the methotraxate and plaquenil and nothing is working of course. To top it off, both my feet and hands are so swollen that they are going to start me on prednisone today. My Knuckles are turning black and blue!! My pharmacist told me that the prednisone may cause more swelling, which god forbid, will leave me crippled. I could barely get out of bed this morning and feel like my body is toxic. Drink 8-10 glasses of water a day to try and flush my system but I feel like crap. The only upside I see to this is that the steroid will give me energy to finally get out of bed where basically I've been living that last 2 weeks. I did get a shower in today, whoopee. Do any of you feel like you will never be well again? I'm feeling really depressed but don't want to go on one more med to counter that. Any suggestions to keep me going?

Suffering in the South
Lynnette

DX - lupus, carpal tunnel syndrome
meds - methotrexate, plaquenil, folic acid, relafan (which I stopped taking 2 days ago), darvocet, flexiril and now prednisone
Posted 4/9/2009 1:54 PM (GMT -7)
Hi Lynnette,

The good news (or bad news, depends on how you look at it) is that the methotrexate and plaquenil take a while to start working for you.  Since its only been two weeks, it makes sense that you are not feeling relief yet.  When they finally start working though, for most they really do work.  My doc put me on low dose prednisone before MTX until she finally decided better to do something so she put me on MTX and waited about 6 weeks before starting to get me off the pred (I'm down to 4mg today).  The MTX is really helping though and I'm feeling so much better despite the pred taper although that is going slow enough.

I hope you can get some relief.  Maybe your doc can rx a pred burst pac for you which may kick start you.

HUGS

Posted 4/9/2009 2:03 PM (GMT -7)
Well at least that is some comfort to know that I hopefully have some relief coming from the prednisone and eventually the other meds. I know they said it would take some time for the others, but it really stinks when you feel like you can't handle one more day of the pain. My brain is in a fog most days and just putting a meal together for my family (and I'm a huge cook) is like running a marathon. I'll keep you posted.

Lynnette
Posted 4/9/2009 3:11 PM (GMT -7)
When I started MTX it took over 2 months before I could tell a difference in my joint pain. However, I was already on an NSAIDS and plaq among other meds. Hopefully the pred will help you until the mtx kicks in. What dose of mtx did they start you on? And I have to ask why did you stop taking relafan? That is an anti-inflammatory and should help your joint pain. If you can't tolerate that particular one talk to your doctor, there are literally hundreds to choose from, hopefully you can find one that works. Hang in there, I pray the meds kick in quickly and you get some relief.
Posted 4/9/2009 3:54 PM (GMT -7)
Hey Lynnette...I hope the prednisone helps you! I know when I have had really bad joint/muscle pain and swelling,i have been put on a low dose of pred and it helped so much. I didnt have any swelling from it, it actually took the swelling down considerably. From what I have been told, the swelling generally happens when high doses are taken or given, not with low doses! so hopefully you are  on a low dose and hopefully it will bring your swelling down! Keep us updated!!!
Posted 4/9/2009 7:08 PM (GMT -7)
Hi Lynnette,

 

Yeah, that is a pretty common way to feel.  I feel like that too sometimes.  Prednisone made a huge improvement in how I felt.  It's so hard to be patient for those other meds to kick in.  This disease forces us to be patient - for everything.

 

Big gentle hugs,

Ginny

Posted 4/10/2009 7:07 AM (GMT -7)
Good Morning All!
And it is a good one. You were right, the prednisone helps. I'm just wondering why my rheumy didn't prescribe the day she prescribe the MTX and the plaquenil. She saw I was suffering and if the other meds take weeks to take effect why would she make me wait to get relief. I'm beginning to wonder if I should look for another rheumy but they say she is the best in my area so what else can I do. I finally got the best nights sleep I've had in weeks. I'm on 7.5 mg of methotraxate every week along with 400 mg of plaquenil a day. I stopped taking the relafan because I have had reactions to taking nsaids before and ended of in the emergency room with the exact same symptoms with elevated liver enzymes. I was afraid my liver was getting overdosed with meds so I thought I would cut it out. Didn't seem to be helping much anyways (or at least I thought so). Anyways, I'm hopeful I will be able to put on my usual Easter spread now for my family - just the 4 of us. I'm going to take it easy again today and hopefully with the second dose of the prednisone I can get to the grocery store tomorrow. God bless you all for being there!

Hugs and angels everyone,
Lynnette

DX -lupus and carpal tunnel syndrome
meds - methotrexate, plaquenil, prednisone, folic acid, darvocet, relafan
Posted 4/11/2009 5:58 AM (GMT -7)
Hi Lynnette. I'm so glad ur getting some relief from the pred. It's too bad that u can't take NSAIDS. I've taken Celebrex daily for years and it really helps the joint pain. Being bedridden really sucks, especially when u feel so sick u can't even read or watch TV. I know you want to care for ur family, but please don't do too much. Hugs and angels back at ya, Butterflake

Posted 4/13/2009 6:43 AM (GMT -7)
Hi Lynette! I'm glad that you have some relief also. As Butterflake says though, please don't overdo it. This is one piece of advice that I always wish I listen to myself. I know sometimes we want to take advantage of the times that we feel great but we are still fragile especially in the midst of a flare. I hope you had a wonderful Easter and so happy to hear that you were able to enjoy it with the family. HUGS
Posted 4/13/2009 9:45 AM (GMT -7)
Hey Lynette! How are you doing? Was thinking about you and hoping you are feeling much better! Hope you had an amazing easter!

Posted 4/15/2009 5:05 AM (GMT -7)
Dear Lynette, yes I do feel like I will never be well again and often times wonder how much more I can take, and then I pray really hard. Gosh I hope the drugs will help you soon. Plaqunil was a gift for me, when it kicked in. I hope you feel better soon. God bless, Tammy

Posted 4/15/2009 7:38 AM (GMT -7)
Hi Lynnette, You mentioned fog. Girlfriend I told a friend of my that my doctor said my short term memory loss ( fog) was probably caused by one of two things. She asked me what they were. guess what>>>>>>>>I couldn't remember! LOL.
But seriously he said xanax or not using my cpap could cause it. He isnt a rheumy he is the head of the pulmonary department. funny how dr. all think it has to be somthing they know about. Anyway I'm glad you are feeling better and I agree with the others take it slow and don't over do it even if you feel you can because it's close but not quiet a miracle drug. you will pay for it. I know it's hard because you just want to feel normal for a change. just make sure not to add insult to injury.
keep us imformed
hugs
Posted 4/16/2009 5:10 AM (GMT -7)
Hey everyone,
Thanks so much for the great advice! I'm happy to report that I am finally starting to feel like a human being once again. The prednisone is definitely helping. I've got most of my energy back and have started to do some light activity. Hoping to be able to start taking walks with the dog in another couple of days. I so miss getting out and getting some exercise. That was always the key to help my stress levels before which I also know is important to keeping the flares in check. My 16 year old is going to his first prom this weekend and I am thankful that I am at a point that I won't have to miss out on the excitement of all the activities for him. Thank you all again for such great support. This website has been some of the best medicine anyone can ask for in getting through each day of this horrible disease. I pray that all of you who are battling pain and discomfort right now get on the road to recovery real soon.

Hugs and Angels,
Lynnette
Posted 4/20/2009 9:50 PM (GMT -7)
I think that my rheumy is going to suggest putting me on a low dose of steroids daily. I've only been one spin down doses of 60 mg. and then decreasing slowly which make me mean as a snake, have terrible headaches and gain weight. I always feel like one of those puffer fish when I'm on that stuff. Will the small daily dose have the same side effects? I got up to 180 lbs. a few years ago when I was on high doses of steroids for my asthma and arthritis before I had both knees replaced. When I got off of them the weight eventially came off but it was a wild ride.
Nurse2
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