Update from Rheumy Appt

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Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 1/19/2009 9:58 PM (GMT -7)   

Well, I went to see my rheumy today, as I expected the news wasn't too good cry ! I had done my lab work last week and had it faxed to my doc, the day I went to have it drawn I felt absolutely horrible, I got to the lab and thought I was going to pass out. I started sweating profusely, shaking and had a horrible pain in my upper abdomen just as I went to check in. Of course the receptionist wanted to verify all my information and what not, I just looked at her like “lady, this is not the time.” I guess she noticed something was wrong and just told me never mind and to have a seat. It took a good 10 to 15 minutes for this to pass. about that time they called me back to have my blood drawn, I still didn’t feel too great, but at least I wasn’t shaking and sweating and what not. So, my doctor walks in, looks at me and says "I'm worried about you, your labs are not good at all!" Really, I wanted to say, "that's probably way I feel like CRAP!"

 

Anyway, I really like my doctor, he really is very caring and I know right off the bat how our visit is headed because he usually says something like that or "your looking great." So, needless to say, my counts are all over the place, my liver counts are off the chart, my platelets are off the chart, my WBC and RBC are low. So, at this point we re-did the liver profile in hopes that it comes back down, if it does we'll up the Imuran, if it doesn't he's referring me to a liver specialist, last thing I need! And he wants to switch me to Cellcept. I am to the point were I just don't know anymore, this is the 3rd immunospressant in less than a year. Is it worth it anymore? I really thought I was seeing improvements with the Imuran, but now it seems to be affecting the liver, so much for that.

 

Have any of you heard of or tried antibotic treatment for lupus? A friend of mine is about to try this, I just now learned about it and have no input what so ever about it, she just shared this with me today. I am going to start researching it and see what it is all about then depending on what I think talk to my rheumy about it. At this point I figure if it sounds half way decent I might give it a try if my rheumy is willing, I am so feed up with the normal medicines. The website she sent me is  http://www.roadback.org/index.cfm/fuseaction/home.main.html 

If any of you are interested.

 

He said there is no way I am ready to return to work, which is what I have been thinking, there is no way I can work 8 hrs a day at this point. My doc keeps telling me things will get better. He tries really hard to keep things positive for me, but I just don't know, it's been over a year now of this flare and I just don't see it getting any better. Is it just the nature of the beast? Or is it the medicines? I really do try to maintain a positive attitude because I know that helps quite a bit, but I am really bumbed about my appointment.

 

Melissa


Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis


SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 1/20/2009 7:42 AM (GMT -7)   
Hon did all that start before or after you took the imuran? Reason why I'm asking, you could be having side effects. This group happened to catch a severe reaction I had with my imuran, and listening to advice of calling my oncologist, I was sent to er. I'm now off the imuran, and deciding next steps. Prednisone can cause hot flashes too. I'm still on prednisone. I get hot flashes (and heck I am only 28) from prednisone (due to long term use), I also get muscle cramps and spasms due to the prednisone. The imuran gave me vomiting and loose stools. When I had my bad reaction, I did blood with the vomiting and loose stools. Way too much blood. LoL, I remember when I asked my doctor about the the hot flashes, he said to me "The hot flashes are from the prednisone. Dont worry they will go away when you stop taking it. Consider this a preview of whats to come." Felt like smackin him! Leave it to men (no offense men)
Smurfy Shadow
 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Asthma, Asperger's Syndroe, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 1/20/2009 8:23 AM (GMT -7)   
Melissa, I hate to hear that you're doing so poorly. CellCept is a great drug that has helped many of us. When do you expect to get the results of the liver profile? I pray that everything will be ok. Let us know.

Pat
SLE, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis, gluten intolerance.

prednisone, plaquenil, arava, neurontin, synthroid, triamterene, actonel, tri-est, imitrex (for rare migraines), cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 1/21/2009 10:44 AM (GMT -7)   
Hi Ladies,

Actually, I thought the Imuran was doing quite well for me for awhile anyway. Then things started going down hill again. My liver profiles were up with the Methotrexate as well, not this high, but never normal none the less. I saw no results with the mtx. I just emailed my doc to see what the recent lab work looks like. I'm sure it is not good, as I woke up this morning and my entire body is swollen. My husband took one look at me when he got home at lunch and said "you're not having a good day are you?" He said my face is flushed and swollen. I told him I could tell my body was swollen, when I got dressed.

So, it will most likely be onto Cellcept for me. It's not that I am opposed to switching, it's that I am worried because what happens if this med does not work? Where do we go from here? I've already tried the other immunosuppressants.

Also in looking at my labwork, I noticed the counts on kidneys didn't look too hot either. I asked the doctor in my email to him if this could be a result of the liver issues or is it the kidneys. Lord, I hope it's the issues I'm having with the liver, I don't need yet another organ involvement. These counts have never been up, so I have no clue. He was so concerned about the liver, I guess he forgot to cover them with me.

Anyway. Doc said there is no way possible I can even think about returning to work, he said he doesn't know when or if I will be able too. He said I don't even need to think about that right now, so I guess I did the right thing by going ahead and filing for SSD. I'll let you all know where we go from here when I hear from him. Thanks for the support.

Melissa
Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 1/21/2009 11:28 AM (GMT -7)   
Hi Mel, I'm sorry you probably hate that I call your that. I always called my best friend that since high school. Her name is Melody. I am sorry you feel so lousey. I hope you and dr. find something that works soon. I know it's a hassle. but if it works than it will be worth it.
I am taking antibiotics every mon. wen and fri. I have been for several months. If I start getting really sick anyway my dr. gives me a different antbiotic that is much stronger.
250mg azithromysin 3 times weekly and when I need a boost I take 750mg of levaquin. in a leva-pak. of 5 pills. It's kept me out of the hospital which is the first time in years I can say that. It isn't technically for lupus but it seems to be helping with a lot of things.
I hope you are resting and get to feeling better
hugs
 CAROL
Possible scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, provigil 200mg spirivia,aciphex,lasix ,pot.chlor.,B12 ,iNDEROL
 
Bear ye one another's burdens
Galatians 6:2 KJV

 
 


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 1/21/2009 2:02 PM (GMT -7)   
We have had several people that frequent the Crohn's forum develop liver toxicity whie using Imuran (Azathioprine). Azathioprine is quite commonly prescribed for Crohn's trreatment. While Imuran worked at keeping the Crohn's under control, the liver problems meant they had to come off of it. I hope the Cellcept works for you.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 1/21/2009 3:23 PM (GMT -7)   
Well, my doc just emailed me and said the liver enzymes came down somewhat (didn't give me the actual number) and he wants to try to go up on the Imuran to 125mg and we'll redo the lab in 2 weeks. So, I'll start that tonight.

Pat, I don't mind being called Mel at all, actually I have several close friends that call me that. I think it's kind of cute actually.

Ides, thanks for the input, I too believe the Imuran has a lot to do with it. I think I'll jump over the the Crohns site and check out some of the posts. My Dad has Crohns, they thought for a long time I did as well, actually the GI doc told me a couple of months ago it was still a possiblity, but I was on all the meds they use to treat it so he wasn't going to pursue it any further unless I had more issues.

Wish me luck.
Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 1/21/2009 3:47 PM (GMT -7)   
Hi Melissa,

I really hope the Imuran works well for you, it was a godsend for me as lupus attacks my GI tract. Please keep us updated, you are in my thoughts and prayers.
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)

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