Sorry I disappeared and an update

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redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 1/21/2009 10:51 AM (GMT -7)   
I was doing a prednisone taper and feeling very fatigued as a result so I haven't been online much. Yesterday my rheumy and I agreed to d/c cellcept but I had to go back up to 20mg prednisone and 200mg Imuran. I am beginning to feel better already. I figure another day or two and I will feel fabulous. I was down to 5mg prednisone though and was quite pleased with myself. Thing is at 12.5 mg of prednsione and above I have no pain in my right hip/leg from the nerve damage below that I have horrible pain. She said I will likely be on prednisone long term and we discussed trying the IV meds for bone density since I did not tolerate bonevia or fosomax. We have to do something for the protection of my bones. It just isn't fair to hav to be on this dose of prednisone when I am supposed to be losing weight.
 
Alexander is doing great, getting bigger every day. He finally called me mama last night. He has been saying mama to other people when he wants me but last night was the first time he said it to me. He also says Da ee for daddy but hasn't said it to daddy yet. So I don't feel so bad it took so darned long for him to say mama to me. He is so far ahead fo where they claim he is supposed to be it is scary.
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, Sjögren'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, now cellcept


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 1/21/2009 11:01 AM (GMT -7)   
Hi redrose, I havn't been around much myself. I'm so sorry you had to go back up on your steroids. After getting down to 5mg. You're right trying to lose weight is rough when you have to take steroids. I'm so glad to hear the baby is doing so well. Sounds like you have your hands full. What kind of IV would they give you for your bones?
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

 
 


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1548
   Posted 1/21/2009 12:19 PM (GMT -7)   
Hi Redrose. I'm sorry you've been so sick. I'm lucky 'cause Cellcept is working really well for me except for chronic diarrhea, which I can handle. It's good to hear Alexander is ahead of the curve. That's always fun. 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 
 


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 1/21/2009 3:53 PM (GMT -7)   
(((( Red )))) I hope the increase in the meds helps you quickly! Those babies sure grow up fast, cherish each moment! Take care of yourself
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)


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 1/22/2009 5:00 PM (GMT -7)   
I have no idea the name of the iv medicine but it is the same class as boneva just a once yearly IV I can't have the injections because of my compression fractures. I seem to be improving quickly on the increased prednisone. Alexander is definately growing quickly.
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, Sjögren'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, now cellcept


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 1/25/2009 10:17 PM (GMT -7)   
Hi redrose, been sick nd not on computer, but doing better. Glad Alexander s doing so so well. He is so smart like his mama. I had a problem going off pred last time and hadto go back on right away, got like a horrible backlash effect, feeling worse than before, really frightening. I may have had a ministroke. Hard to say, felt so bad didn't go to the hospital. You might bug the docs to do some blood work to check your vitamins with regard to your bones so you can increase those vitamins as well as taking medicine. Hopefully they will find something for you to take. They might check yuor estrogen levels too and whatever else. Maybe there are some other ways you can supplement to help protect your bones. I hope your flare ends and you can get off the pred and build up your bones andhave relief.

Hope all is well with you and family. As always, I keep you in my thoughts and prayers. Alexander sounds like a real sweetie.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 1/25/2009 10:58 PM (GMT -7)   
I just finished a round of prescription strength vitamin d. I will have to have blood work before the IV can be okayed to check those levels and my calcium levels. I was suffering massive fatigue from tapering but no worsening beyond that and the return of the pain in my leg. My hormones have been checked several times and were in normal range. I already take 1500mg calcium daily to try and help.

Alexander is such a sweety, he is so good. He rarely cries and is always happy. Even when he is upset he tries to be happy. I have never encountered such a good baby, actually no one who has experienced him has ever seen another baby as good as he is. He seems to know when I don't feel well instinctively and is even better on those days. It is so odd, I don't want him to be a difficult baby but I wish sometimes he were a little less willing to accept everything as it is.


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, Sjögren'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, now cellcept

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