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puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 6/30/2008 11:50 AM (GMT -7)   
Hello everyone, I'm a newbie.  I'm still in diagnosis limbo here.  I started having severe hives about 4 years ago, shortly thereafter I developed some joint pain and swelling in my hands.  I had a "significantly positive" ANA and RF, but lupus tests have been negative so far.  I've been seeing a Rheumatologist since November 07.  I had a baby in July of 2007 and my symptoms progressively got worse during the pregnancy and even worse with every menstral cycle since.  I now have pain in my hands, fet and right hip, severe dry eyes in the morning, hives, rash on my scalp, extreme fatigue, headaches weekly and weird tingling and bug bite sensations.  My Rheumy is very difficult to get info out of.  I have to really push to get him to tell what direction he thinks this is going.  He tells me he thinks it's lupus and Fibro but now he wants to reasess.  I am currently taking 400mg plaquenil, 100mg Imuran, 2100 mg neurontin and Darvocet.  I felt a little better when I first started neurontin, but all of a sudden 3 weeks ago it stopped working.  I'm frustrated and scared.  I have two young children (5 and 1 year old boys) and I just don't know what kind of mom I'm going to be able to be.  It hurts to walk and my hands are turning red and hot as I type.  I have no insurance and applied for SS disability in January.  Any tips, support and prayers are greatly appreciated.  Right now I just want to explode.  I better stop here, too much typing.  Thanks.

jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 6/30/2008 2:41 PM (GMT -7)   
Hi and welcome. I am sorry you are in dx limbo and not feeling well. You are on some good meds for lupus but it doesn't sound like it's getting things under control for you. Sometimes it can take a while for the doctors to get the right combo (cocktail) of meds. I have a lot of joint pain too and my rheumy recently added Methotrexate, it took a while to kick in but it's finally working on my hips and lower back pain but I do still have pain in my hands and feet.

I pray your doctor listens to you more and you find some relief soon! Take care and feel free to ask more questions.
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed) and magic mouthwash (for mouth sores)


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 6/30/2008 4:31 PM (GMT -7)   
Welcome to the forum Puccini,

I'm sorry you are having such a hard time.

The neurontin is usually for nerve pain. Is your hip pain caused by a trapped nerve in your back?? Mine is and that can be significant pain and interferes with my sleep. I work hard on sleep hygiene because that is key to healing. Our body repairs itself in our deep sleep and if you aren't getting good long blocks of sleep, its hard to recover.

Plaquenil takes several months to fully build in your system . . . not sure how long you've been taking it. I'm wondering if your doctor has talked about adding anti-inflammatory meds to your mix. Sometimes that is very helpful.

Getting the right combination of meds really does take some trial and error. Don't give up!! You'll get it. Most of us do not press for a definitive diagnosis. . . .we care more about treating the symptoms. Lots of docs are very hesitant to label the disease if they aren't absolutely positive and they are doing you a HUGE favor by NOT getting the L word into your medical records.

There are some helpful links at the end of my signature.

I hope you make some good friends here . . . its a great place to ask questions . . . lots of informative members too!!

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


puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 6/30/2008 4:44 PM (GMT -7)   

Thanks so much for the quick reply, it helps so much to know there are people who actually understand.  I think I push for the diagnosis because until then I can maintain an unhealthy state of denial.  I've been on plaquenil for 9 months and 3 months on Imuran.  I know my sleep is not restful because my little one still wakes up through out the night.  He's a year old and sleeps with me because that's the only way I'll get any rest at all.  Unfortunately, Ibuprofen, Naproxen sodum and Ultram all make my hive incredibly worse.  So. I'm kinda stuck with tylenol mixed with something else.  Thanks again for the suport.

 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 6/30/2008 5:43 PM (GMT -7)   
Hi puccini and welcome. I'm sorry you have been through so much and that you aren't getting much relief. Your story is sadly very familiar to a lot of us. A of us, including myself were (or are) in diagnosis limbo. I also had a rheumy who wouldn't commit to a diagnosis and I went to her for almost 3 years. At first she seemed pretty good, but over time she seemed to lose interest in my case and didn't seem to do anything as I got sicker and sicker. With the encouragment from people at this forum I went to see another rheumy who diagnosed me right away and started me on meds that began to help give me some sort of life back. Sometimes it is worth it to get a second or even third opinion. IF there is a lupus support group in your area you might be able to go and ask members if they can recommend a good rheumy. Also know that there are no specific tests for lupus - it's a combination of positive labs and symptoms.

I really understand where you are coming from as a mom. My son was 6 and my daughter was 2 when I first got sick and I had a lot of fears and a lot of guilt about wondering how good of a mom I was going to be able to be when I felt so sick and tired all the time. I hated hearing myself tell my kids I was too tired to do things with them. I do want to give you hope though. I am finally doing pretty well and am able to do a lot more with my kids. I have a great rheumy and a great pcp who have both figured out a good combo of meds for me. I still have bad days and flares but they are a lot less frequent.

I'm glad you joined us. This is a great place to come for support and for information. It's nice to have a place to come where others truly understand what it is like to live with a chronic illness. Hang in there and don't give up looking for treatment that will help you feel better. Your experience with neurontin was similar to mine. Initially when I took it, I felt really good and got excited, then it gradually quit giving me that boost. It still helps with my nerve pain, so I continue to take it.

Take care and let us know if you have any questions and also know we are here for you whenever you are going through a rough time.
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.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 6/30/2008 8:13 PM (GMT -7)   
Welcome to the forum puccini... Hopefully the rheumy can give you some idea soon. It's rough in the begining but I see that the doc. put you on the right meds. when the meds. start kicking in you will start a feeling a little better. The people here are very good on anything you may have to ask. Hope you get the ssd.. good luck. I'll be praying for you!! 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.     
 
 
 
 


puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 7/9/2008 6:28 PM (GMT -7)   
Well, folks, saw the Rheumy today and I really don't know if he's the one for me. Today, I don't have swelling in my joints, but my hand and feet are red and hot to the touch, so he says that he doesn't see signs of an inflammatory condition. He's taking me off plaquenil and Imuran and honestly I'm scared to death. If I feel this bad on them, what's in store for me if he's wrong. He said he's leaning toward a Dx of Fibro, but that doesn't explain the swelling I've had in the past, or the severe hives or the high ANA and RA factors. I'm starting Cymbalta and flexeril tonite. Wish me luck. Blessing to you all.

Jennifer

Diagnostic Limbo: Seeing Rheumy since November 07, Taking plaquenil, Imuran, Neurontin, Claritin, Zantac, vitamin D, Darvocet.

 

 


Audrey Ann
Veteran Member


Date Joined Jul 2005
Total Posts : 815
   Posted 7/9/2008 6:42 PM (GMT -7)   
Greetings, Jennifer, and welcome. Is it possible to find another rheumy? Yours sounds a bit wacko (if you don't mind me saying so). Had he ever prescribed prednisone or an anti-inflammatory to see if it was fibro? Also, there is not a specific lupus test. A good rheumy must look at all indicators and become familiar with your history in order to make a diagnosis. Also, had the rheumy considered that the meds so far might be masking your inflammation?

Anyway, I am trying not to be mad at your rheumy - I don't even know him! However, I would try to find a more reputable rheumy and start over again. If possible, try to get copies of all your records from this current rheumy. Any history you can bring to the new rheumy will speed up the process.

Good luck! My prayers are with you!
Prayers,
Audrey Ann
 
Lupus and RA and LOTS of Medications!
 


 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 7/9/2008 6:46 PM (GMT -7)   
confused Hmmmmmm WHY would he have started you on the plaquenil and imuran if he didn't think you had autoimmune issues ??? What was the plaquenil for?? I'm not saying that I think you have Lupus . . . but I am wondering if he thought your swelling was less now than last visit? or if it was never there? *sigh* You really could have Fibro and something else. If your RA factor is positive and your ANA is positive and you have pain?????

Sorry . . . I'm just really feeling bad for you sis. I hope you will taper from the meds and not just abruptly stop. No sense shocking your body that way.

I hope you will keep us posted. And don't forget to keep a symptom journal . . . day to day. It will be helpful later. I would also consider a second opinion.

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


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 7/9/2008 7:04 PM (GMT -7)   
Welcome! I'm so sorry about everything you are facing. It is so overwhelming! I will keep you in my thoughts and prayers. Judy

puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 7/9/2008 7:47 PM (GMT -7)   
Well, to answer a few questions. I have been on pred but only felt better when taking 20-30mg. On those days I felt so much better that I went ou t did shopping, cleaned the house etc so by nightime I was in so much pain that I'd call him and say it wasn't working. It wasn't until the last time I was on it that my husband realized what I was doing. I told the Rheumy, but he didn't really respond. Everytime the dose would taper down below 10mg, I'd feel crappy again. Of course the major bad days have never happened on appt days. So I don't know if he's seen the worst of it or not. I had swelling at one appointment and he x-rayed with no significant findings. I'm thinking it's time to start shopping for a new rheumy. Seeing PCP tomorrow and I will ask, the only problem is that I don't have insurance so the amount of shopping I can do will be limited. Thanks to all of you for your thoughts and kind words.

Jennifer

Diagnostic Limbo: Seeing Rheumy since November 07, Taking plaquenil, Imuran, Neurontin, Claritin, Zantac, vitamin D, Darvocet.

 

 


puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 7/16/2008 11:33 AM (GMT -7)   
Well, I thought Rheumy was okay, but I've been off plaquenil and Imuran for a week and I feel horrible.  I've got huge hives all around my neck, my hands and feet are killing me and I have absolutely no energy.  I called Rheumy and he said it doesn't have anything to do with the meds becuase there are still in my system.  I think that's *****.  I'm going to start looking for a new doctor today.

Jennifer

Diagnostic Limbo: Seeing Rheumy since November 07, Taking plaquenil, Imuran, Neurontin, Claritin, Zantac, vitamin D, Darvocet.

 

 

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