rheumy visit today

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jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 2/9/2009 4:39 PM (GMT -7)   
I am so emotional right now, I want to feel better and feel normal whatever that is.

I am in a huge flare right now, inflammation is wrecking havoc all over my body, doc put me on pred for 10 days and I am to report to her if it helps my headaches and lower back pain, under my ribs, etc. She also wants me to see a neurologist for the headaches. I had her refer me, my appt is the end of the month.

Had my bone density test and my hips are one step away from osteoporosis, I am only 37!!!!!!! She put me on Boniva once a month and a calcium supplement of 1200 - 1500 mg a day in addition to 50,000 IU of Vit D weekly and eating yogurt, etc daily. The good news is my spine looks good! Also supposed to walk on the treadmill at least 3 days a week.

I am to start taking a multivitamin with iron and a low dose aspirin every day.

She does want me to go ahead with the holter monitor testing this Friday for the tachycardia.

She wanted to know if I could take some time off, I really can't right now. She wants me to at least stay out of work tomorrow.

I talked to her about the way my PCP treated me on my last visit and she gave me a referral to a PCP problem is she is 45 min away and I can't find her on my provider list with my health insurance company.

Thanks for listening
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)


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 2/9/2009 5:24 PM (GMT -7)   
Hi Stacie,
 
I'm sorry you're suffering so much right now. I understand the emotional side of things too.  I want to be normal also....Sending you empathetic hugs (((((Stacie)))))).
 
I hope the increase in prednisone does the trick. It usually does. I have osteopenia, and I'm turning 35 in 10 days. It is shocking to learn you have an "old woman's" issue isn't it. I take Didrocal and lots of Calcium and vit D too.
 
Love ya Stacie, and I'm praying for you,
 
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

34 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. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Moderator for the Lupus and Fibromyalgia forums


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 2/9/2009 6:54 PM (GMT -7)   
((((((((( Stacie )))))))))))

Thinking about you sis . . .

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


firebabe
Regular Member


Date Joined Aug 2007
Total Posts : 206
   Posted 2/9/2009 6:59 PM (GMT -7)   
Ha, what is normal anymore!?  Aches and pains and headaches all the time-constantly thinking about sleeping, and people I deal with on a day to day basis having absolutely no understanding as to what its really like.  So frustrating.  Makes me want to cry most days.  At least your doctor sounds pretty good and helpful.  I like mine, but I think he is a very busy man and sometimes I think he forgets about me.  Last year he wanted to do a bone density scan on me and that kind of got forgotten.  I will mention it again at my next appt., but it seems he's always in a hurry.  I've had more joint pain in the last few months than I have had in 6 months-I've been on Methotrexate for almost a year and a half-and this darn cold weather is so horrible to me.  ARRRGHH!  Anyways, I feel for you and hope things are better soon.
~Tammy~
 "Challenges make you discover things about yourself you never really knew."
 SLE and Class II Lupus Nephritis


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 2/9/2009 7:08 PM (GMT -7)   
Thank you Ginny and Rosie,

I always put on a strong front or try to anyway, I almost broke down in the doctor's office because of the way my feet and legs look compared to before I got sick. I guess that was the start of it all..... then I had a meltdown while talking to my friend at work, then cried alone for a bit and then broke down on my hubby. Tomorrow will be a better day yeah

Osteopenia, yes that's it. Is yours in your hips too? Do you suffer with a lot of hip pain? Boy I do, the MTX helped a lot until this flare but doc doesn't want to increase MTX as my WBC just came up to 3.7 from 2.8.

Pred is not one of my normal meds but I really hope it helps get this flare under control.

Thank you for listening to me whine.
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)


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 2/9/2009 7:14 PM (GMT -7)   
Thank you Tammy, you are right, this disease is very frustrating! I have a great doctor but she's not my first rheumy, I had to go through 2 others before I found her. You should definitely get a bone scan, it didn't take long and my doctor has the equipment in her office. Just be sure to wear pants that doesn't have a zipper, like sweat pants, etc.

I hope you feel better too!!!
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)


Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 2/9/2009 7:51 PM (GMT -7)   
Hi Stacie,

I too am sorry to hear you are suffering so much! I know what it's like to feel like you can't take time off of work, trust me I've been right were you are at. Thing is I put my work first and thought they couldn't do with out me, my rheumy kept telling me " you have got to take some time off and de-stress" I told him there was no way I could do it, my employer was laying people off left and right, I just couldn't risk it. Well, I just worked myself literally almost to death, 10 - 12 hour days, sometimes seven days a week, then when I wasn't physically at work I was on call, 24 hrs a day, I'm not joking. What ended up happening is I ended up in the hospital, my body went into a major flare and I haven't been able to work since the end of September 08! I would have been better off if I had listened to him upfront and taken time off.

I know our lives are different, each of us has different economic situations and what not, but seriously, the one thing I have found out is no matter how much money I have I can't buy my health and by trying so hard to keep my job and stressing so hard over it I have done a lot more damage to my body. I just don't want to see that happen to you if at all possible.

Please, take care of yourself and do what you can to take it easy!

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


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 2/9/2009 8:06 PM (GMT -7)   
Hey Stacie,
 
Yep, my osteo is in the hips too. My last bone density came back normal. That was a year ago.  I had another density test last week and I get the results tomorrow.  I think the Didrocal, all the calcium and vit D have helped it to reverse.  I do have a lot of hip pain, but it's from my Fibro.
 
It's okay to just break down and cry. We need to do that.  Release the valve. God gave us emotions and the ability to cry for a reason. It's healthy.  I know you know that already :)
 
You're right. Tomorrow will be a better day.  A new day.  A chance to start fresh.
 
Good night!
 
 
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

34 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. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Moderator for the Lupus and Fibromyalgia forums


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 2/9/2009 10:26 PM (GMT -7)   
Stacie, I too have osteopena. My rheumy and pcp are having a fight because I can't tolerate boneva or fosomax so I need to do the IV meds and they can't decide who should do it. I am going to ask my rheumy just to handle it cause I am sick of being told it's not my job. My rheumy knows a doctor who can do it for me but wanted to give my pcp a chance. My pcp wants me to see this other doctor first who I saw once a few years ago who claims since my kidneys are okay I don't have lupus and my other health issues- he informed me my whole problem is I am fat and lazy. I say keep on top of the problem because osteoporosis is horrible- my great grandma had it as well as lupus.
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, cozar


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 2/10/2009 9:11 AM (GMT -7)   
Thank you Melissa, Ginny and Redrose -

I work for and with great people and hardly ever out sick and never from lupus so they are very understanding. We are going through a huge conversion next week at work and my co-worker is going to be on vacation! Yeah fun for me!!! Everyone at work has told me to take as much time this week as I need because I must be there next week. If I end up with another headache like yesterday I won't be going anywhere until I see this Pred helping. I took an Excedrin migraine last night and it did nothing! They have always helped!

Thank you for everything!
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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