Complete Change of Meds and Breakdown Time

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Audrey Ann
Veteran Member


Date Joined Jul 2005
Total Posts : 815
   Posted 1/29/2008 9:34 PM (GMT -7)   
Hello Everyone.  I have been writing and commenting here for the past few years and I really appreciate everyone's advice and encouragement.  Yesterday I had a rheumy appt. and I think I really surprised her (and myself) with a bit of a breakdown in her office.  I just cannot seem to get much better and I am really having a hard time accepting this.  I seem to be doing well for a few days and then, bam, I fall right back.  The joint pain and inflammation, and even the kidney stone pain has just about worn me down for the last three and a half years.  I just can't seem to get better, even when I am on a break from school.  It just doesn't seem to matter.  I don't know how much longer the school really wants to accomodate a principal that is always sick.
 
Anyway, my rhuemy took me off methotrexate injections, folic acid, and, even, Relafen.  I am constantly nauseated from all of this anyway.  Instead she put me on Arava and upped my prednisone to 8-10 mg until the Arava kicks in.  Of course, I read that Arava causes nausea. so I don't know how that will help!  And, true to form for me because I seem to have most of the side effects of any meds, this morning I had to pull over to a gas station to throw up on my way to school.  Yuck.  I know everyone thinks I am a hypochondriac and even my Supt. is becoming a bit rude.  He is also really grumpy right now because he is retiring in June but I am starting to get paranoid.  My intuition is usually right about these things and I am seriously considering retiring very soon due to my continuing health problems. 
 
It is possible that my husband will be transferred to Tampa, Florida soon and I would be able to use that as an excuse to leave gracefully.  I could then possibly teach graduate courses part-time or something instead of trying to push myself.  It just is so hard to deal with this, however, because I know I have so much to offer.  In the last nine years my school has improved so much.  My teachers and I have worked so hard to make it possible for all kids to learn and we have the data to show for it.  I am sure this is why I have been treated so well but I know everyone thought I would be better by now.  Geez, I thought I would be better by now. 
 
Well, thanks for letting me vent a bit here tonight.  As for the Arava, has anyone had any success with this med?  I read conflicting reports on it but I haven't heard anyone here at HW say much about it.
Prayers,
Audrey Ann
 
Lupus and RA and LOTS of Medications!
 


 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/30/2008 9:57 AM (GMT -7)   
Hi Audrey,
 
I'm so sorry you're feeling so poorly.  You know that we all understand, right?  We all feel the same way.  "How am I going to be able to live like this the rest of my life?"  I say that all the time.....  It's exhausting.  Every part of this disease is exhausting. 
 
I have actually never heard of Arava.  I hope someone else here has some experience with it.  Maybe you'll actually not have any nausea with this one!  It might be the magic pill!
 
Dealing with people who just don't understand chronic illness is extremely patience testing..... I hope your situation corrects itself with ease and no issues!  The last thing you need is drama, right!
 
I hope you have a better day today,
 
((((hugs))))
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


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 1/30/2008 12:11 PM (GMT -7)   
Oh sweetie, I'm sorry you have to go thru this. So I am assuming that it was the arava was what made you puke this morning?
I know the whole thing stinks! You do everything your supposed to do. Life revolves arounds doctors , meds, lupus, tests. You try as hard as you can to be possitive and take the best care possible and what happens...........you get worse! Than you get these lousey people that should have enough smarts to understand what you are going thru they turn out to be total idiots!.
It sounds like if you are in a possition to retire it might be the best thing for your health because from what you are saying the stress alone is going to make things worse.
I don't mean to insult you or anything with your education but maybe you could do some tutoring so it could be on your terms. There are alot of us here that have had good jobs. in fact everyone here has had somthing in their life that was important to them that this disease has taken away. Even if it was being a janitor it was still a job and there was pride in a pay check and and making a living. Lupus and A/I just doesn't care who you are.
I have a real resentment to people who treat us poorly because they think we are "faking it" If it was cancer they would be right there for us doing what ever they could.
Your comment about an excuse to "leave gracefully" You don't need an excuse. Those people treating you wrong need to get a clue. I think they should have to do a term paper with all the graphs and everything done in crayon.
sorry I think I'm having a bad day. I just feel so bad for you I don't know what to say.
I hope the doctor can find somthing that will help that doesn't have such awful side effects.
love and prayers
carol
God Bless
Lupus like symptoms, with pbc symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax 1.0 x3,Singular,nitro spray, aciphex, percocet 10mg.x4. 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


tash32
Regular Member


Date Joined Aug 2004
Total Posts : 233
   Posted 1/30/2008 12:29 PM (GMT -7)   
Hi Audrey
Ive been on Arava for about 3 years now and it has improved my lupus when i first started taking it I also suffered from nausea but someone advised me to take it at night time and I found it so much better I didnt wake up feeling sick, my first year on it was really great I managed to cut down on my pred and just felt quite normal lol for a change.  There are a few others that are on it here and hopefully they can offer you some advice as well.  Please if you have any concerns feel free to ask.  But I definately recommend taking it at night time and see how that goes.  Good luck!
 
take care
tash32

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 1/30/2008 2:03 PM (GMT -7)   
Hi ((((Audrey))))),

I hope your new meds work well for you. That pred just might do it. I don't know anything about the Areva.

Important factoid: Thoughts are things. I am a big believer in intuition . . . it really helps guide us through so many issues . . . but I'm also aware that "thoughts are things". If you "feel" like someone has had it with your health issues, you will "put out that vibe". People . .. even children. . . are very receptive to what you are "putting out". I try to "pretend" that my health matters to others. I know this isn't necessarily true . . .but I need the internal confidence to move thru situations like you mentioned in your post (with your boss). It really does seem to make a difference. When I was working, I stopped giving reasons for an absence (Dr. appt.) or sick time. I simply told co-workers I would be "out" for those hours or days. Few people asked and I only cared about the boss. He even appreciated less information.

I hope you'll keep us posted about your progress with the new meds . . . sorry you got sick !! Ewww.

Hot tea for you Audrey!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 1/30/2008 3:11 PM (GMT -7)   
Ask for Zofran, it can help tramendously with nausea. I wish I could offer more than that, I spent so long so sick that I completely understand. My rheumy and I gave up on my ever getting a remission and then suddenly wham my lupus was in remission and we still aren't positive why. We have no idea how long it will last, but it is something. Unfortunately none of my other problems are in remission so it doesn't mean feeling 100% or even 50% like I did before I got sick, of course that is so long ago I am not sure if I daydreamed how I felt (I was still a kid).
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone, Imuran, Procardia


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 1/30/2008 9:23 PM (GMT -7)   
Hi Audrey,
   I'm on Arava as well. I have been taking it for a little over 2 years. I messed up and took myself off it a few months ago and started flaring bad. I'm back on it now and doing better. I do have some nausea but, not bad. Some days I have to take a phenegran of meclizine. Most days I do well. It will cause weight loss and some hair loss. I hope the side effects get better for you soon and you see some good improvements. Please keep us updated and take care. You are in my thoughts and prayers.
                                            ((Hugs)) 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.


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 1/31/2008 9:09 AM (GMT -7)   
(((((Audrey Ann))))) I'm so sorry you are going through all of this with your meds and your job and your health. I can completely relate to the rollercoaster of going back and forth between having a few good days and then getting really sick again and all the frustration that goes with it. I think you have a lot of people here who can relate to having a hard time accepting that this is how it's going to be for the rest of your life - living with a chronic illness just plain stinks!!!

I think you should trust your intuition about your job and what you need to do for yourself and your health. It sounds like you think that retiring early would help your health and would probably relieve some stress. I remember when I was working I spent way too long debating if I should keep working or if I should quit. Even after I cut my hours, I found that it got harder and harder to do my job the way I wanted to and I had no energy for my family. Now that I've quit, I still have lots of ups and downs with my health, but I am able to do so much more than when I was working. In hindsight, it was the best thing I did for myself and my family. This is a very personal choice though and it is different for everyone. I am a strong believer that somewhere inside us we have the answers for what is best for us, it just takes some time to strip all the outside stuff away to really be able to hear ourselves.

I feel so bad that you are going through this. I think med changes can be hard on our bodies too and it seems that a lot of us are very sensitive to meds anyway. I know that whenever I come off a med, I tend to crash and it takes a little while for he new med to kick in and help. I hope the prednisone gives you a boost while you are waiting for the Arava to kick in.

Hang in there Audrey and please keep us posted on what you decide. Know that we are always here for you.

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

 

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Audrey Ann
Veteran Member


Date Joined Jul 2005
Total Posts : 815
   Posted 1/31/2008 8:40 PM (GMT -7)   
Thank you so much, everyone, for your kind words and great advice! I am actually doing much better and, tash, I kind of "accidentally" found out that taking the Arava at night works much better for me and I do wake up without the nausea. And, hippi, you were right. The increase in prednisone has been fabulous. Of course, it always is! Too bad it is such a double-edged sword! I could probably function close to normal if I could take 10 mg of prednisone everyday! That is probably all I really need!

As usual, I am wary of my sudden improvement. This seems to happen at first and then I slip right back in to my usual problems. I am taking it very slow and I am trying to remain optimistically positive that this time I might be OK. Like you said, redrose, a remission could just occur without much notice.

I might have been way off the mark about my perception of my work situation, too. Let's just say I am really keeping my ears open. My boss is very difficult and always has been. I have dealt with his "chauvenism" (spelling?) for the last nine years. He frequently has me doing much of his work and he treats me really nice when he needs me to do something for him. I am getting really tired of this but, he is my boss. His behavior is very "alcoholic-like". I never know what to expect. My teachers have noticed this too (I did not know this until just recently when, on a few different occassions teachers, aides, or other administrators made off-handed comments about the work he piles on me.), and many of them have complained to the Board members about it. I wonder if this is why he "decided" to retire? Everything is so political and, ginny, you are right, I don't need or want the drama!

Again, thanks so much to everyone for your replies. Your kind words and concern have really been helpful and made me feel better. I am hoping the Arava works as well for me as it seems to be working for you tash and Babs. I wouldn't mind losing a little weight, either. Taking prednisone off and on over the last three years has caused me to gain about 30 extra pounds. It is really hard to get used to for me. I actually weigh more now than when I was nine months pregnant! However, losing weight because of "throwing up" a lot is not my idea of fun - ewww! Please tell me this not what causes the weight loss! Please, please!

I have you all in my thoughts and prayers!
Prayers,
Audrey Ann
 
Lupus and RA and LOTS of Medications!
 


 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/31/2008 9:09 PM (GMT -7)   
HI Audrey Ann,
 
You have a much more positive sound to your posting tonight!!  YAY!  I hope the Arava works really well for you.  Let us know how you do over the next few nights.
 
One thing that helps me tremendously is splitting my dose of prednisone.  So I take the majority during the day and then a smaller amount at night.  Made a world of difference when I was on a higher dose.  Helped me to sleep better.  I now take 5mg in the morning and 3.5mg at night.  When I was on 40mg a day in the beginning, my rheumy suggested splitting it 20 & 20.  I wasn't nearly as jittery or wacko!!!
 
I know your pain with the weight gain... I've gained 60 pounds over the last 8 years.  I have a very bad self image right now.  I never had a weight issue before lupus.  I was a slender woman of 110 pounds.  I'm creeping up on 170 now.  I feel like crap, and I think I look like crap.  So you're not alone in this. We have so much to get used to with this disease.  If the diagnosis, medication, pain, fatigue, complications aren't enough, we have to add the change in how we look to the mix.  It's really hard isn't it.  I am having a little cry right now.  It affects me a lot.  I'm sure it does you and everyone else too.... You're in my prayers also Audrey Ann.  If you come across the cure for our weight problems, please let us all know in bright neon colors!!!
 
love
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


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 1/31/2008 10:05 PM (GMT -7)   
Audrey,
   My wt loss wasn't caused from throwing up with the Arava. It cuts the appetite a bit and something in it just pulls some wt off. I don't mind the shedding of pounds either. I have to force myself to eat somedays but not from nausea.
   I really hope this works well for you and you will start to see some improvement very soon. Keep us updated and take care.
                                                           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.


Audrey Ann
Veteran Member


Date Joined Jul 2005
Total Posts : 815
   Posted 2/1/2008 11:20 AM (GMT -7)   
I know what you mean about a reduction in appetite. I can go and go without eating now. I will be careful about scheduling meals! I am happy to hear that the weight loss isn't caused by you-know-what!

Have a nice day!

Audrey
Prayers,
Audrey Ann
 
Lupus and RA and LOTS of Medications!
 


 

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