Frusterated/overwhelmed!!! Advice PLEASE...

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aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 1/31/2009 8:56 AM (GMT -7)   

Well in Nov 2007 I was diagnosed with SLE. I was doing ok...all I had was joint/muscle pain. Well 3 weeks ago I went for a check up with my rhuemy and we discoverd that I was having kidney problems. So my rhuemy sent me to a renal doctor. He had blood drown and did a P test and said that I needed to have a kidney biopsy. So 2 weeks ago thursday I was in the hospital getting the biopsy and then he had me on 3000 MG of Solu-Medrol. I got to leave the next afternoon. I do want to take the time and say that I think i have one of the best Rhuemy's out there. She came and visited me 3 times while I was in the hospital. She could have just brushed me off onto the Renal doctor but she didnt and for that i am very thankful :)! But back to the kidneys...The biopsy came back and they told me that out of 5 stages of Lupus nephritis I am at stage 3. They put me on 1000 mg of Cell-Cept, 80 mg of prednisone, iron pills, and still taking all the other pills I had been taking. The Renal doctor said he was trying this route over the Cytoxan because I am only 21. He said that it would probably make me sterile, wipe out my white blood count, and cause a lot more problems. He said if I did the cytoxan that I would be looking at weekly IV's, daily antibiotics, hormone pills, and much more. So I am hoping to everything that the cell cept works. about a week ago, my ankles,feet, and legs have started retaining water. I called and told the dr and they put me on water pills. Well as of now I am takin 80-100 mg of lasiks and from my knees and below are about 3 times the normal size and they feel like a giant stess ball. I have only P'd 4 times all day and have drank 3- 32 oz size bottles of water plus other liquids. Anyone have any suggestions about this? Since they have upped my prednisone I have gained 40 pds....and this was only 3 weeks ago. In the last 6 months I have gained 80 pds. I don't know what to do. Since I have taken the cell cept I cant stop shaking. My writing looks like I am a 90 year olds writing...all shaky and hard to read. On top of everything else I have decided to get a sinus infection and can't seem to get over it. Anyone have any suggestions about the retaining water, the weight gain, and the shakiness? I am starting to get depressed about everything and i am trying my hardest to keep my chin up but It is getting harder and harder!

 

thanks for letting me vent!!!

 


Aimsgirl16
Systemic Lupus,lupus nephritis, Raynaud's Phenomenon, Carpal Tunnel
Voltaren, Ultram, Prednisone, Imuran, Ambien,Furosemide, Flexeril, Darvocet
 
"He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away." (Revelations 21:4)
 
I Can do all things through Christ who gives me strenth! (Philippians 4:13) 
 
 

Post Edited (aimsgirl16) : 1/31/2009 9:01:29 AM (GMT-7)


suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 1/31/2009 10:37 AM (GMT -7)   
hi! aimsgirl,
Phil 4:13, remember that an angel is very near you right now. Prayers your way, God knows. I hope you feel better, very soon. And sometimes it takes awhile for your body to tolerate the potent meds you are on. Hang in there,
sue
God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 1/31/2009 1:29 PM (GMT -7)   
Hi Aimsgirl, ((((hugs)))) you vent all you want, you have every right to. Bless your heart you've sure been through a lot lately. It sounds like you are in very good hands. I am sorry I have no advice I just wanted to drop in and give you some *hugs*! Take care and please keep us updated on your progress. God Bless you, you will be 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)


FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 1/31/2009 5:54 PM (GMT -7)   
(((HUGS)))

You are unbelievable strong. 21 years old! I cannot even imagine trying to deal with all that you are coping with at that age. I think I would check in with my rheumy if I were you. I am not sure about all the meds you are on, everything you are describing could be expected at this point, but if it were me, I would feel better hearing that from my doctor. And since your doc sounds like one of the good ones, she would probably prefer that you check in with her rather than stress too much. Good Luck and I hope you feel better, soon.
Take care,
Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR.
Daily Supplements: Calcium, B-100 Complex.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 2/1/2009 7:36 AM (GMT -7)   
(((((((aims)))))) I am so very sorry you are going through this, especially at such a young age. Please know that we are all here for you - this has to be scary and frustrating and overwhelming. Please call your doc (either the rheumy or renal doc) about not peeing much and about all the weight you have gained and also about the shaking with your cellcept. I'm worried that the weight gain is related to your kidney problems.

Hang in there and please keep us updated. You are in my thoughts and prayers.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; 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

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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Co-Moderator: Lupus and CFS Forums



redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 2/1/2009 8:19 AM (GMT -7)   
Have they ordered compression stockings for you yet? That will help with the fluid in the legs believe me. I would call about the peeing and shaking. Your weight gain is likely fluid retention- yes you can retain upwards of 100lbs of fluid I know from experience. I hope the shaking goes away soon. You need a good antibiotic for the sinus infection.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1548
   Posted 2/1/2009 9:45 AM (GMT -7)   
((Oh Aimsgirl)) You have so much to handle at such a young age. I agree with the others on the forum that you need to let your rheumy and/or nephrologist know about the terrible fluid retention you're having. As for the shaking, I'm not surprised with the high doses of prednisone you're taking, but my tremmors are also neurological. As for the Cellcept, I started with 2000 mg last January and a few months ago my rheumy had me taper up to 4000 mg daily which is what I'm taking now. The increased Cellcept has enabled me to decrease my prednisone and it has improved my lupus symptoms. Please make sure you get antibiotics for your sinus infection. If you don't the infection can spread. Lastly, since someone mentioned "crossing the bridge" I'll say it again and hope it helps. Here's advice that our member Babs gave me a few years ago: Look at this time as if you're crossing a bridge. Some bridges will be longer than others. Sometimes it seems the bridge will never end. You can't even see the end of the bridge, but it is there. Eventually you will cross the bridge and get relief for a while. I've crossed many bridges the past 5 years. You will find strength you never knew you had and you will cross them too. I'm sending both of you lots of positive energy to help you during your crossing. Lots of Love, Butterflake

Systemic Lupus ('05), depression, diabetes, fibro, gerd, hypertension, IBS, sleep apnea  Rx: Cellcept, plaquenil, prednisone, celebrex, lisinopril, actos, lipitor, nexeum, prozac, seroquel, wellbutrin, actonel, tylenol arthritis, neurontin, phenegren, flexeril, vit C, multi vit, flaxseed oil.  Acupuncture  "Welcome to lupus, where the strange is ordinary and nothing is normal." Donna 
 

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