Where do I go from here?

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hdgott
Regular Member


Date Joined Jun 2007
Total Posts : 28
   Posted 7/19/2007 1:51 PM (GMT -7)   

So.... about 2 weeks ago I went to Enid to have labwork done. My potassium was low, as always. They upped me to 5 pills a day. Wonderful - they're horse pills and grainy and extremely hard to swallow. This put me up to taking 20 different pills a day. They wanted to check my lab work again in a week. So... I go back a week later. Potassium is lower than before. They up me to 6 pills a day. My white blood cell count was also low. This isn't good. Dr. Dexeus' office calls and tells me to stop taking the Imuran and they wanted me to come back in 3 days for more labwork.

I went back 3 days later. My potassium was right at the bottom number for normal range. My white blood cell count was normal. This might sound like a good thing, but it's not. My body is rejecting the Imuran and I can't take it anymore. While I would love to be off of that stupid medicine, it's not time yet. I haven't been on it long enough to help anything. So, basically, I feel like the last 10 months of taking this horrible pill has done no good. And now I can't even take it anymore. My potassium also went up when I wasn't on it, so maybe it's affecting that too. I go back on Wednesday to have more labwork done.

I guess I just don't know where I go from here. I'm no longer taking the medicine that's supposed to make me better. I can't get into my new rheumatologist until August 13, so until then I'm not on anything to control my lupus. I can already tell a difference. I didn't work this morning because I was sick. The medicine I have to combat my nauseaness wipes me out. Like literally, I can't do anything for the rest of the day. When you work in the mornings and take 9 hours of class in the summer.... this isn't an option. My joints are stiff and sore again and I hope it doesn't get as bad as it was last summer. I thought after nearly a year I would be making some progress. Right now, I guess we're back at square one.

I guess I just needed to vent to people who understand. My friends understand, but they don't have any idea what I'm going through. This question is completely unrelated, but... I have been in 3 different car accidents, but I've never been driving. Now whenever I am in a big city and I'm a passenger, I am terrified that we're going to have a wreck. It gets so bad that I start panicking and gasping when we're going by another car and sometimes it gets to the point that my chest feels so heavy. I know this isn't normal, but is it anxiety? Is there anything I can do to talk myself down? Thanks so much to everyone here... you're always so nice and willing to help!

Heather


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 7/19/2007 6:59 PM (GMT -7)   
Hi Heather, Enid oklahoma? You must not be that far from me. I go to the base shopping there sometimes. I'm sorry that for the meds were not working for you. But I'm really glad they got to the bottom of it with what it was doing to the rest of your body. There must be something else that will work for you. It's always a matter of hit and miss. I'm sorry you are feeling bad after working so hard at trying to get well. That has to be so depressing.
As far as the car thing goes. I think it is pretty normal. My son as in about the same amount of accidents when he was with somone else drviing. He hates being a passenger now. I was a passenger in a car when I was 13. the door flew open I fell out an got ran over. It took me several years to be a passenger and if they whipped around the corner I grabbed the dash board! There was no way I was gonna lean into the door. You may be suffering from the trauma of it it might help to talk to someone. You diffnently don't need the added stress in your life.
I hope your doctor can get you on the right meds that will actually help you!
Huge hugs
carol
God Bless
Carol
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax.5mg
 
When things are really dark look up. You can see the stars.
 
 
 


hdgott
Regular Member


Date Joined Jun 2007
Total Posts : 28
   Posted 7/19/2007 9:41 PM (GMT -7)   
Thanks Carol... I'm in Alva. I'm not sure if you know where that is? All of my family lives in Medford. Thanks for your input... I'll see if I can't try to get the car thing under control!

curlyhair
Veteran Member


Date Joined Jan 2005
Total Posts : 659
   Posted 7/20/2007 12:17 AM (GMT -7)   

Hi Heather,

I am sorry you had to go off the imuran but it seems it was really harming you. Low potassium especially can be very dangerous! I have been hospitalized 3 times for it, one of those times in the coronary care ICU unit, and I still take 12 potassium pills a day. (You are right, they are disgusting, but you will die without the proper amount of potassium.) My EKG was very abnormal each time I was hospitalized and I wasn't aware of it at all. It is good that you are seeing a new rheumatologist and as someone else said it is a matter of hit and miss. There has to be something else that will work for you and not be so harmful at the same time. I know it is hard but try to be patient, and keep up that potassium.

Sandy


DX: Kidney Disease, questionable Lupus Nephritis 2002
DX: Raynaud's Phenomenon and Lupus 2005
DX: Anorexia and Hypokalemia 2006
 
meds: plaquenil, lasix, klor-con


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 7/20/2007 12:31 PM (GMT -7)   
Heather,
I'm sorry things are so rough for you now. I hope if you start feeling really bad you get to the ER however you need to. It doesn't seem right that they gave you nothing to replace what you are on and that they are just stopping you like that bam. But you seem strong, going to school and working, that's a lot.

As for the anxiety, I understand completely. I was a victim of home invasion, not once, but twice. The first time the counsellor said, the good thing about it was that it would never happen again, really low odds, and then a few years later, it happened again. I had trouble sleeping (I was attacked in my sleep both times) for so long and still get afraid sometimes to be home alone, though I feel very safe were I live now. The people here are nice and there is always someone to talk to, and maybe, since you are off your imuran, they could give you something for anxiety in hopes you don't stress out too much and have a flare. It seems the least your doc could do. I don't know what you already take, but maybe calling and speaking to the nurse might get you at least something. My doc did that for me when I had to go off my thyroid hormone and I'm still waiting to see another endo. The rest of my family was very grateful!LOL. I hope you feel better soon and that maybe you can get on a waiting list for a cancellation with the new rheumie and come in sooner. Best wishes for feeling better and getting into the new doc soon.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 7/21/2007 9:02 AM (GMT -7)   
Heather,

Does the imuran cause your body to be low on potassium? I had no idea it was so dangerous. I'm worried that you aren't taking anything to help with your lupus and am sorry you're feeling so bad. I hope your rheumy will have some options for you.

I also live in Oklahoma.

Take care
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 3 mg, actonel, tri-est (compounded estrogen) 7.5 mg, cymbalta 30mg, multivitamin, calcium w vit D, fish oil, aspirin


hdgott
Regular Member


Date Joined Jun 2007
Total Posts : 28
   Posted 7/21/2007 11:58 AM (GMT -7)   
Thanks everyone... I'm not sure if the Imuran is the cause of the low potassium or not. It finally went up after I went off the imuran though. I'm only taking 3 potassiums a day now. I definitely know the dangers of it, so I NEVER skip one. Pat - I THINK you said you see Dr. Albert? That's who my appointment is with in August. Hopefully she'll be better than my current one. She has to be, it can't get much worse, in my opinion!

Juliaa
Regular Member


Date Joined Feb 2006
Total Posts : 131
   Posted 7/21/2007 5:47 PM (GMT -7)   
Hi Heather,
I just wanted to say I'm glad your feeling better and hang in there till August. New doctor New hope! Feel better and God Bless.

Julia
DX:  Migraine; SLE; Diverticulitis;HB;neuropathy seizures; Sjogrens
 
Micardis, plaquenil,Prednisone, anti seziure drug, & Nsaids


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 7/21/2007 9:07 PM (GMT -7)   
Heather,

I'm so glad you got in to see Dr. Albert. Her office has been closed at times so you were fortunate to get an appointment. I hope you like her. She's quiet so I always go armed with questions. I do know that she has a great reputation among other doctors in town. Let me know how it goes. You really have quite a drive to get down to see her and I hope it's not too much for you.

Hang in there till the 13th.

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 3 mg, actonel, tri-est (compounded estrogen) 7.5 mg, cymbalta 30mg, multivitamin, calcium w vit D, fish oil, aspirin

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