Welcome Carol (Wattsnex) !!!

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AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 7/6/2008 5:48 PM (GMT -7)   
I copied this post from Wattnsnex (Carol) from another string so everyone can say hello!!

Carol . . . I hope you'll tell us more about yourself!! Welcome to the forum!

Wattsnex said...
My hands, fingers and wrists joint hurt and are stiff to open and close almost constantly, it happens bilaterally ie both sides at the same time. I find it hard to hold a pen, toothbrush, type etc. There is no strength in the muscles when picking up items either, I drop things alot. I use otc anti inflamatory, Advil....sometimes it works good and sometimes I get little or no relief. Then there are days when the pain is almost completely gone and that I can't believe they throb and ache so bad at other times. I attribute it to inflammation. I am on Plaquenil and Cellcept as well. I cannot tolerate prednisone .

Carol /quote]

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


Wattsnex
Regular Member


Date Joined Nov 2006
Total Posts : 27
   Posted 7/6/2008 6:36 PM (GMT -7)   
Always Rosie and Members of this Group,
Thanks for welcoming me to the Group, I have been a member for several years but have not posted.
I live in NJ USA, married 2 children and 2 grandchildren. Only the past 7 years have I been dx with Lupus and Sjogrens. This past year has been a nightmare. I have had clots, pulmonary embolism, pleurisy and vascular problems (2 operations...Drs caught the last one just in the nick of time)
I am so thankful that a Lupies Forum website such as this exists. It is a frightened disease that with me came on suddenly and it is good to read the messages posted and offer support to others as well.

Take Care

Carol
Wattsnex

joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 7/6/2008 9:16 PM (GMT -7)   
Welcome to the forum Wattsnex. My husband from N.J, Hamilton township, we live in P.A now. I'm sorry you went through all that I hope they can get you on the right track with your meds.I know what those clots feel like I had it on my lungs that was very painfull, I'm just glad I was in the hospital when it happen. If you have qustion or even want to talk this is the place to be. Wish you well. Debbie
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Reglan,Protonix,Synthroid,Plaquenil,Quinacrine,Flexeril,Zetia,Zoloft,Xnanx,Celebrex,Abuterol,  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     
 
 
 
 


smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 7/7/2008 3:39 AM (GMT -7)   
HI Carol and welcome. I think you will enjoy this forum, there are a great bunch of ladies here who are more then willing to be friendly and make your day a little brighter.

Connie
 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.Thyroid Disease ,RA
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 7/7/2008 7:30 AM (GMT -7)   
Wattsnex said...
MJLD,
Sorry to hear you are having so much pain, I think I know what you are going through. I too have high anticoagulant antibodies and am on Coumadin for the rest of my life. It is scary the first time (and hopefully the last) you go through the pulmonary embolism. I had one, it will be 2 years this August. Thought I was having a heart attack. I smoked most of my adult life but quit 7 years ago, thank goodness, so I could only think the worst when all this pain and shortness of breath presented itself rather suddenly. The embolism developed into pleurisy, I had an amniocentesis. Then a few months afterwards I had a TIA and that is when I took the Coumadin Therapy very seriously. I have a very good vascular surgeon who pulled me out 2 x's in the last year. I had a stent put in the subclavian artery and had a bypass to the arterial blood supply to the intestine which the time before the surgery I had lost 52#'s and had constant diarhea for 5 months straight, I came close to losing the intestines. Went to 4 Gastro. Drs and not one diagnosed the problem, but the v. surgeon did a doppler and knew right away what was happening. He is doing a Renal Doppler on me at the end of the month. Please keep us informed of your progress. I also have Diabetes which further more adds to the complications.
My best wishes for the success of your new book "The Beauty of Pain"; I am looking forward to reading it.
God Bless
Carol (from NJ)
Wattsnex


Carol . . . I copied this from the other topic . . . WOW you've had a rough time. As I was telling Judy, you might want to check out Ginny's new topic on Post Traumatic Stress. Some of our members have been through so much.

So. . . . your another late blooming Lupan !! Ha haaaaa . . . I don't have clear-cut Lupus . . . (UCTD and possible Chron's), but just started getting treatment in my late 40's. I'm 55 now.

I hope you receive a lot of support on this forum. Its been a God-send for me.

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


mawmaw66
Regular Member


Date Joined Feb 2007
Total Posts : 102
   Posted 7/7/2008 7:32 AM (GMT -7)   

 

Hi Carol,

     Welcome, you will find a lot of good friends here that are always willing to help when you ask a question because someone usually has been there or had that or the other.

                                                   Linda


Lupus, RA, OA, Raynard diseases, Hypothyroidism and a Breast cancer survior.
 Linda


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 7/7/2008 8:04 AM (GMT -7)   
Hi Carol,
 
Another welcome coming your way!  I think that because your disease process came on so suddenly it would be so understandable that you're very scared and completely shocked.  We can all understand and relate to those feelings you're having.  This is a terrible disease to have and the added support network is definitely needed.  We're always here for you if you need to vent, cry, ask questions, etc.  I hope your day is a good one today.
 
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),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Wattsnex
Regular Member


Date Joined Nov 2006
Total Posts : 27
   Posted 7/7/2008 8:36 AM (GMT -7)   
Members, Thank you all for your warm "Welcomes" to the Group. I feel very fortunate to have the opportunity to correspond with people such as yourselves that are going through this too. It is like a language all of its own. I find that it is still a "mysterious disease" to try to convey to others.
My Rheumy has just put me on a rather high dose of CellCept, even though I have no kidney involvement. I am also on Plaquenil but haven't seen any improvements yet. It has just been one month. I also take rx Vitamin D. Do any of you take CellCept and have you found improvement with pain, I would like to hear from you. Prednisone and I just don't mix...it is what put me on insulin too among other things. I am grateful for all the support I am receiving. Thanx All.

Carol

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 7/7/2008 8:49 AM (GMT -7)   
Hey Carol,

Are you off of prednisone? How long? Did that help you wean from the insulin? or are you still on the same amount? I ask because of a s-i-l who has brittle diabetes from liver disease and the steroids needed to maintain her liver. Just wondering if this improves when you go off the pred.

The plaquenil takes about 6 months to fully build in your system. Because it is such a gradual improvement, some don't notice the benefit until it is stopped for some reason. There are previous messages from members who stopped it and found out it really had been helping. I hope you get some relief soon.

I don't know much about Cellcept . . . but I hope it really helps. You might start a new topic using a title that would attract those who use Cellcept. Like . . . "Cellcept Questions"

Glad you found us!

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


Wattsnex
Regular Member


Date Joined Nov 2006
Total Posts : 27
   Posted 7/7/2008 9:31 AM (GMT -7)   
Always Rosie,

I was put on the Prednisone in an attempt to reduce pleuritic pain, which it did but then stopped and tapered off after 3 months. Prior I was taking oral meds for the Diab II control and had my numbers in control but the pred. elevated my glucose readings to where I needed insulin. I also gained considerable weight. I understand the Prednisone affects everyone differently. I had figured the Plaquenil would take awhile to give results. That is good idea to start a new topic for CellCept here.

Thanxs

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 7/7/2008 12:33 PM (GMT -7)   
Carol . . . your welcome!!

SO sorry the pred affected you so adversely. It is such a good weapon when we need instant results. I hope the CellCept will do well for you!

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


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7023
   Posted 7/7/2008 5:41 PM (GMT -7)   
Cellcept really, really helped with the cognitive issues I developed from lupus. I was ramped up over about 8 weeks, then on it about a year, then ramped down over about 15 weeks.

I never experienced any side effects at all... For me, it's been a miracle drug!

I hope it helps you out as well,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


Wattsnex
Regular Member


Date Joined Nov 2006
Total Posts : 27
   Posted 7/7/2008 5:57 PM (GMT -7)   
Lynnwood,

Thank you for the reply. I had no idea that CellCept was used for cognitive issues. I believe the purpose I was Rx'd Cellcept was for an immunosuppresant. My dosage was first 1000 then 2000 now. If you don't mind my asking how long did you take it for and why did you go off the CellCept? Did it help for joint/muscle pains?


Carol

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7023
   Posted 7/8/2008 6:13 AM (GMT -7)   
Cellcept isn't directly used for cognitive issues -- it was a wild idea my Dr wanted to try & fortunately it was a good idea!

I was ramped up over about 8 weeks, then on it about a year, then ramped down over about 15 weeks.

I went off it because 1) my cognitive issues had improved greatly. 2) if you aren't on it for transplant reasons, it's recommended time of use is < 2 years.

I didn't notice if it helped joint/muscle pains -- I didn't have significant pain to start with and I was much more concerned with getting my brain back!

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


Wattsnex
Regular Member


Date Joined Nov 2006
Total Posts : 27
   Posted 7/8/2008 1:36 PM (GMT -7)   
Thank you Lynnwood for sharing that information with me.

Carol
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