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conorsmom
Regular Member


Date Joined Feb 2009
Total Posts : 20
   Posted 2/26/2009 6:40 PM (GMT -7)   
Hi! I'm 49 years old and live in NJ. I've had lupus for 15 years. I was diagnosed when I lived in Florida, and it really got bad after I had my son in 1998. Now I'm on SSD after being an RN for 17 years. I also have fibromyalgia and Sjorgrens Syndrome, as well as lupus pneumonitis and peripheral neuropathy.
The September before last, I took NyQuil, forgetting it has alcohol in it and I was on 80mg of Oxycontin 3 times a day. My son tried to wake me up the next morning and couldn't so he got my husband and he thought I had a stroke. I spent 8 days in ICU, unconscious and intubated and also had aspiration pneumonia. Then, because I laid in the same place for about 11 hours, I had rhabdomylysis, my muscles broke down and went into acute renal failure. Thankfully, I came out of it, but I suffered from cerebral anoxia, which means my stellar IQ dropped a lot of points! LOL!!
This September, the same thing happened and I was intubated and unconscious for 5 days with bilateral pneumonia. And just this February, I was admitted to PCU for 5 days for pneumonia as well.
I'm prednisone dependent for 14 years, but I just had my first appt. with a new rheumatologist at Thomas Jefferson University Hospital in Phila., which apparently is one of the best lupus departments in the country. I have a nephrologist appt tomorrow because I now have protein, ketones and bilirubin in my urine. And.......I had osteopenia when I lived in Fla and started on Fosamax, then Boniva. My next Dexascan showed totally normal bone density. I had one in November and I guess my PCP didn't look at it but it says I have osteoporosis in my lumbar spine and am high risk for spinal fractures! I just hope my rheumy does Reclast, that once a year IV infusion. I had such bad GERD when I was on Fosamax and Boniva, I aspirated on a regular basis.
My question for y'all is: does anyone get acupuncture? I had my 1st session yesterday and felt great for about 6 hours afterwards,then my lower back started hurting again. I woke up this morning and my muscles feel like I've run a triathalon. I could barely walk to the bathroom. My best friend knows someone who gets acupuncture and she said the same thing happen the next day.
Is this a common thing?
And anyone with lupus nephritis, what meds do you take?  I so want to get off of Prednisone and I know its commonly used for lupus nephritis, but are there other meds to take?
Sorry this is so long. I'm a little complicated! Thanks for having me!

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 2/26/2009 7:14 PM (GMT -7)   
Hello Conorsmom!
 
Welcome to the forum. I tried acupuncture last year and HOLY CRAP, I turned into a purple spotted dalmation from all the needle pokes.  I"m on blood thinners so that caused a lot of "under the skin" bleeding.  I also felt like I had been through a triathlon and my muscles burned bad.  That is from our Fibromyalgia unfortunately.  I'll never do it again.
 
I don't have kidney involvement, but there are a lot of members who do, so they'll be along to help you with the medication question.  I've been on prednisone since my diagnosis in 2000.  I'd love to be off it too, but it works beautifully for me.  I'm not going to start experimenting.  My lupus is very quiet!
 
Glad to have you here!
 
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

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 2/26/2009 7:40 PM (GMT -7)   
Hi Conorsmom, welcome!! Wow you have sure been through a lot. I have had some scares with my kidney's over the last couple of years but thankfully nothing has come of it. I am scheduled to see a nephrologist soon just to check things out since it's been 2 years. I hope your appt goes well, please update us when you can. Take care
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)


nestle
New Member


Date Joined Feb 2009
Total Posts : 8
   Posted 2/26/2009 8:32 PM (GMT -7)   

Hi,

Welcome to the forum and to my neck of the woods. I visited your rheumatolgoist for a second opinion once if it is Dr. DeH. My sister in law used to work for him.  I am 47 years old, have had lupus since I was 15years old and kidney disease since I was 28.

I do have kidney disease and I have been off of prednisone for 10 years.  I too never thought that it would happen.  I've done prednisone, prednisone with cytoxan, tried imuran, and I am now on Cell Cept.

My lupus was in remission for the past 10 years after undergoing a treatment in Germany known as the Kiel Synchronization protocol, which is how I got off of the prednisone.  My kdineys have flared again recently, although not as bad as before. I am currnetly on Cell Cept only 2000mg per day...trying to avoid the prednisone.  I'm hoping the Cell cept alone will do the trick.  I do not know if there is anyone else that is on Cell Cept without prednisone as most rheumatologist in the United States keep lupus patients with organ involvement on some type of immunosuppression.  My clearnance is normal, my creatinine at 1.03, but protien at 1400mg.  Following my treatment in Germany my protein was 150 mg.  My rheumatologist had wanted to start prednisone again, but I asked if we could just wait and see the the Cell Cept alone could do the trick.  He's allowing us to wait, at least for now.

I did fosamax for a short period in the past however was taken off of it because they do not know what the half life of the drug is.  My gynocologist said that he would never take a drug that he did not know  the half life of.  My dexa scan has not shown any osteoporosis at this point for me.  I would  think that if your kidneys may be flaring you may have to be careful with such medications for the treatment of osteoporosis.  They are hard on the kidneys.  I have been taking vitamin D, 1000mcg daily along with my Calcium.

I did do acupuncture when my kidneys flared years ago.  I was amazed at how within a few hours, my leg swelling was gone. I had no muscle problems following it.  My acupuncturist was not sure he could help me because he said he could only feel one of my pulses and if he did not see me sitting in front of him he would not have believed I was alive.  So I did not feel he was the best person to help me, thought initially that maybe that meant I was going to die...but here I am still here 12 + years later.  I've not been back to an acupuncturist since.   I went for some Auyvedic treatment and was told the same thing about the pulses. The Auyvedic doctor had me do a metabolic cleanse which I did.   I believe that cleanse is what put my kidneys into the flare I had 10 years ago.  I decided that alternative shopping was not for me...that I needed to stick with the specialists that know lupus.

I had tried to get into some research trials at the NIH 10 years ago but was not a candidate. Johns' Hopkins high dose cytoxan was fairly new with not many people treated yet, stem cell transplant I was not a candidate for either, so the treatment in Germany was my best shot for treatment free remission so I did it.  I had already done the NIH protocol and did not want to do that again.  I thank God that for 10 years I've been in excellent health. 

Today , though on Cell Cept, I feel very blessed because I do not feel sick at all.  I continue to work full time, have no joint pain which many lupus patients suffer from, no fatigue either. 

So, hang in there.  You are in good hands at Jefferson.  He is an excellent doctor.  It is possible to get off of prednisone when you have organ involvement...I'm proof of that.  I do hope it continues that way for me.  I may be an experiment in the making, being on Cell Cept with no prednisone.  Have not found anyone who was not on any at all with the start of their treatments for organ involvement.

Keep us posted on how things go for you.  I wish you the best of luck.  You certainly have been through alot.


conorsmom
Regular Member


Date Joined Feb 2009
Total Posts : 20
   Posted 2/26/2009 9:57 PM (GMT -7)   

Thank you all for your welcome and sharing experiences with me. I was on the computer to get directions to my nephrologist and noticed I had some email from the forum.  After I posted, I talked to my best friend, who is also a critical care RN(we met when we were both working in an inner city, Level 1 Trauma Center, so we've been through a lot!)  I'm going to go 2 more times to the acupunturist and if I feel like I did today, that will be it for the porcupine! My PCP wrote for water therapy which worked wonders for both my lupus and fibro in Florida and the hospital where my husband starts his new job in 2 weeks just opened a medi-center/gym which has a therapy pool. So insurance will pay for x number of sessions, then I'll join the gym at a very discounted price and continue my therapy. We wanted to put in a pool this summer but the way the economy is, we're putting it off til next year. It will be heated too.

I think that chloesmom will be staying here for a while! tongue


Diagnosed with SLE 1994,Fibromyalgia 1994,Interstitial Cystitis 2000,lupus pneumonitis 2002,peripheral neuropathy 2002,cerebral anoxia 2007,
 
Go Gators!


chirstain009
New Member


Date Joined Feb 2009
Total Posts : 7
   Posted 2/27/2009 2:24 AM (GMT -7)   
Hi conorsmom!

You sound like such a trooper :) I have CNS Lupus as well as lupus pneumonitis and nephritis since I was 18 (I'm 23 now). Acupuncture has been wonderful for me. I too initially experienced extreme muscle soreness and fatigue the day after treatments, but the severity of such has greatly decreased, and it has significantly decreased my muscle and joint paint. I've also found yoga to be incredibly helpful, particularly in reducing pleuritic pain in my chest. I swim as often as I can, and find it to be great no impact exercise, and its so relaxing.

I HATE prednisone, and have been fully dependent on it for the last 5 years. I don't know of anyone who has managed to get off of it completely, but if you do, let me know how!

Good luck with everything, hang in there!

Love,
Chirstain
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