Author Topic: Update  (Read 9065 times)

Sha

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Update
« on: January 18, 2011, 10:07:34 PM »
Got my labs back today 3 pages of mumbo jumbo...sjogren's was positive, Vit D is super low, iron low, positive ANA....those ones are easy, but the rest.....well forget it! Had my GP look at em and she said they didn't show much that she could see other than the above listed. I definetely have a sjogren's dx, which I already knew!

I have to call them tomorrow cuz his letter said to call or make a followup appointment. I already have a call into him asking the nurse to ask him about all the other AI diseases he was talking about (spondyloarthritis, Lupus, firbro, antiphospholipid acids  and some other hearing sensory one ...so I wonder why he hasn't called back yet (I called on thursday or friday of last week). I figured he would call today, but no message on the answering machiine on either phone....I don't worry that he will be thorough when I do get a hold of him, though ;)

My GP said she couldn't do anything more for the pain other than allow me to take 3 tordal a day instead of 2 (along with the 4 hydrochodone) I take until she hears from my rheumy as to what dx's he has confirmed since he believed sjogren's was secondary to something....Until then  :o Pain! So...guess it is try like heck to get a hold of him tomorrow cuz my back is KILLING me! 

My GP said just cuz my labs were neg for Lupus (got results today) doesn't mean I can't be seronegative (she was the one that brought the seronegative part up). I guess you can be seronegative for just about anything that you have symptoms for, but test neg...If it walks like a duck, quacks like a duck, I guess it is a duck!!

I do love all my docs so i guess that I should at least be greatful for that!!

Does anyone have primary sjogren's that their doc said sjogren's was the cause for their back pain??

My joints are getting much worse in a VERY short amount of time ::)
Thanks for listening and caring!!

Sha

Meld256

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Re: Update
« Reply #1 on: January 18, 2011, 10:17:27 PM »
Hi Sha,
Isn't it interesting that so many of us have very low Vit D? I hope you are able to find out more with the followup appt.

I'm somewhat in the same situation with joint and back pain. My knees have become much more painful (they hurt all day, everyday and burn) and my lower back is killing me, too. It has gotten worse in the last month or so; I can understand some of what you are going through.  Also joints in feet, ankles and sometimes wrists.
My former PCP told me the back pain was from fibromyalgia, but I didn't think it caused a great deal of joint pain like I have now.

I'd also like to know if anyone has been told their primary sjogren's has caused back pain, too.

I hope you hear from the doc soon and they can find you some relief!
Take care,
Melinda

dbab

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Re: Update
« Reply #2 on: January 18, 2011, 10:22:30 PM »
Hi Sha,

Did your doc mention the posibility of Fibro causing your back problems?   I know that it is a VERY common complain for Fibro.  Did the doc do the Fibro pressure tests on you at all? 

Lupus is a tough one.  I received a Sjogren's diagnosis, then a UCTD, then a Lupus w/ Sjogren's overlap.  My Rheumy would not acknowledge I had Lupus until my dermapathologist confirmed my rashes were caused by SLE and that was even after I had a few anti-dsDNA antibody tests come back positive which are pretty specific for Lupus.  See my presenting antibodies were ANA and SSA first as well so that's where I started.  It's a tough journey.  That unfortunately never ends (don't know if you caught my liver antibody story *sigh*)

Good luck and I hope your consult with your rheumy goes well.

Take Care

cremer

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Re: Update
« Reply #3 on: January 19, 2011, 01:13:28 AM »
I have asked my rheumy on many occasions if my lower back pain is Sjogrens related and he keeps saying NO. His quite happy to say Sjogren's is causing my knee pain but not back.

Linda196

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Re: Update
« Reply #4 on: January 19, 2011, 03:09:46 AM »
Sha, I'm curious as to whether labs were run to check for Calcium levels in light of the extremely low Vitamin D. In addition to the blood work, have you had a bone density (DEXA) scan?

Low VitD, low Calcium and decreased bone density can all cause back pain, and you've demonstrated at least one of those.
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Joe S.

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Re: Update
« Reply #5 on: January 19, 2011, 03:56:44 AM »
It would be interesting if flutterfly had the same or similar blood work results.
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mink

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Re: Update
« Reply #6 on: January 19, 2011, 06:08:25 AM »
Sha !! By blood work... your officially a Sjroggy ;) Just like you said... You knew it all along...and am happy you are happy with your Docs :)

I have Fibro and my back kills me at times (like now) lol...but I haven't asked my rheumy. I have an appt this Friday and boy do I have questions! will let ya know what she says about back pain
Hope you feel better and get some pain free days ;D.

Sooki

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Re: Update
« Reply #7 on: January 19, 2011, 07:34:16 AM »
I'm guessing he probably is not planning to call to talk about the big picture; he's probably waiting to talk big picture and strategy in an appointment.  So grab the first appointment you can get to and ask the desk to find out from him if he'll order more tests that they could schedule on the same day.  It's worth it to talk face to face at this point - he'll outline diagnosis and possibilities for treatment etc.  It's a good chance to get all the info he has and tell him what approach you're most comfortable with and figure out how to get some relief.  Good luck.
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flutterfly

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Re: Update
« Reply #8 on: January 19, 2011, 10:33:05 AM »
AHHH SWEET SHA BEBE!!!

i already knew this but just wanted ya ta know i feel awful 4 ya!!! it's such a double edged sword!

ya want no scary sh#t ta cum back positive but when it cums back neg u are still @ a loss of what ta do or where ta go!!!

JOEY~ ummm...i gotta take care of the other stuff b4 i go up ta rhemy so i might get the 42 vials a blood takin'
UMMM...probably by our happy u were born day! (april 9th) but 4 right now i have ta get nerve doc & colon cancer ruled out!!!
(cea came back high 4.9) but i'm a smoker so...hopin' 4 that ta be reason 4 elevation!

(sorry sha 4 the hi^jack!)

luva u extreme uber gooobers!!!

~*flutterfly...yellin' @ pixies...she STILL don't feel good!!!
PLAY NICE OR I WILL BE OVER THERE IN A MINUTE!!!*~   :P

CAT1962

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Re: Update
« Reply #9 on: January 19, 2011, 06:06:06 PM »
Flutterfly: I TOTALLY hijack threads! I'm SO naughty! I apologize, everyone!

SHA: I, too, have the low VIT D. My low cortisol levels lately may explain a lot, too! Let us know what else comes up!

CAT

irish

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Re: Update
« Reply #10 on: January 19, 2011, 06:22:44 PM »
The other thing I was thinking was that kidney issues can cause back pain. I would think that they have checked you for the kidney issues before this. Also, sjogrens and other autoimmune disease can cause tendonitis and this can occur in the spine and into the pelvic region. I suffered from tendonitis in my lower back and pelvic region when I was pregnant. It was just terrible. Hope you can get relief. Irish ;D

BonusMom

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Re: Update
« Reply #11 on: January 19, 2011, 09:27:28 PM »
Sha-

I'm glad that you got some lab results today.

I have secondary SjS and SLE. When I was diagnosed in 12/08, I had a positive ANA 1:160 (homogenous and speckled), positive SS-B, positive histone Ab, elevated ESR and PTT.

Since dx, I have had periodic low WBCs, but never a low vitamin D.

I have had low back pain for the past three months or so and posted here a month or so ago about it.  I'm going to see my rheumy next month and will be asking her about it.  My joint pain has increased also.

It may be a coincidence, but I decreased the Plaquenil from 600mg to 400 mg when I began taking Imuran on September 9th.

The rheumy added the Imuran because of cog fog.  She was hoping the Imuran would alleviate some of those cog fog issues.  I didn't think the joint issues would rear their ugly heads like they did since I was still taking 400mg daily.  Anyway, I digress.

It sounds like you've got Primary SjS and perhaps Fibro overlap, but I'm certainly no expert.  I know Primary SjS can give you a wallop of sxs that those of us with secondary SjS don't experience at all or in the same intensity (sorry, I'm having a hard time finding the words to say exactly what I'm trying to say, but I think you catch my drift).

Stick with that rheumy of yours because I think he's interested in treated you based on your sxs, not just your labs.

Take care.

Sha

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Re: Update
« Reply #12 on: January 19, 2011, 09:55:55 PM »
Melinda~you sound so much like my joints....sorry to hear that! It is interesting that a lot of us are low on vit D...I'm gonna look into that! ;) Take care sweetheart! ;D

dbab~I had all the pressure points but 2. He gave me a pamphlet on fibro, but that is all I know...his internist jumped on that right away, but he really didn't talk about it that much other than hurt me with the pressure points!! I didn't catch your liver one, so I will have to check it out....doesn't sound good :( Lupus sounds so much like my symptoms...but neg on markers....I have all the rashes and it gets worse in the sun!! Thanks sweetheart!! ;D

cremer~so what causes the back pain...huh..huh...huh???

Linda~ My calcium was normal at 9.3 and my vit D was 28. I have not had a DEXA scan...should I ask him if I should have one? I am going to ask about an MRI also, which would show more?

Joe~Hi sweetheart!  ;D It would be interesting, but would also be full of questions cuz mine didn't say much more than I already knew...if ya know what I mean! ::)

Mink~I guess there's no kicking me outta the treehouse now...I got my badge (dx)LOL :D Sorry you have to join the back pain club too ;) Good luck on your appointment Friday....Thanks and please let me know what they say!!

Sooki~Thanks sweetheart....How did ya know that's what he wanted?!LOL Yeppers, ya were right...still asked what ya had said though...Jeff said he would give him the message. So, I guess I wait to see what he says ::) I hate waiting!!

Flutterfly~ Love you!! Yeh, all the unanswered questions SUCK!! ::) I hope you get some answers too! Send the minions! ;D btw, You can hijack my thread ANYTIME ;)

Cat~I wonder why a lot of us have low vit d?? Sounds like I gotta do some research on that...I will get back to ya :o

Irish~I have had a kidney infection in november and a kidney stone at that time. When I still had paiin after passing the kidney stone, my GP thought it was lingering pain from kidney stone....it continued for a couple of weeks and then she said it was sacroilliac joint dysfunctiion ::) Dr. Peng is going to talk to me about spondyloarthritis, but I was neg for arthritis as far as I could tell. It still feels like it is in my kidneys sometimes and lower into my pelvis :o It is like a cramping ache and sometimes sharp pain...always a constant ache I'm starting to get more used to which to me is SAD! :'( Thanks for the input, though!! Any other suggestions?

Bonusmom~Yeppers, I get your drift....I think I knowi have fibro...the docs know I have sjogren's so at least we have a starting point to talk aboutt. Sorry you're having issues with your meds!! Did ya have a lot of side effects when starting plaquinel? Thanks sweetheart!

UPDATE ON UPDATE: I did call my rheumy today and talked to someonoe (think he's the receptionist) and he told me that in my notes it says he wants to make me a followup appointment to go over treatment options for sjogren's. I told him I wanted to at least talk to him first cuz I live 4 hours away and want to make sure he doesn't want to run any more tests or mri that could be done first....if ya know what i mean!

He said he would have dr. peng call me, but set me up for feb 11th, cuz my 10 yo is having a tonsillectomy/adenoidectomy on Feb 3rd and I wouldn't be able to go until at least a week after she had surgery (told him sorry...it's a mom thing)  ;)

Asked if he mentioned anything in my file about the other AI diseases....he said that he has noted that he wants to discuss spondyloarthritis, sjogrens, and lupus....uh, labs came back negative for everything but sjogren's so wonder if I read em wrong or he also believes in symptoms bearing more weight than markers???

I just hope someone can tell me what the joint pain is and the back pain cuz that is what is killing me!!

Thanks all for listening!!

Sha

Diane54

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Re: Update
« Reply #13 on: January 20, 2011, 08:01:33 AM »
I am currently on 50,000 IU of Vitamin D right now too! My Rhuemmy wants me on it for 3 months! :'(
Sjogren's diagnosed Dec 20, 2010, Hypothyroid, Diabetes 2, Autoimmune Hepatitis, Mitral Valve  Prolapse, Gerds, Antiphospholipid Syndrome,  Synthroid, Paxil, Prilosec, Evoxac, Plaquenil, Tramadol, Simvistatin, Restasis, Baby Asprin, vitamin D, Januvia, Amlodipine, Gabapentine

genko_b

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Re: Update
« Reply #14 on: January 20, 2011, 09:11:58 AM »
It's great you got your lab results and have some answers. I presume the doctor will put you on a vit D supplement. I feel much more energy since I've been on one.

The back pain can be so many different things. Did you have any scans that showed changes in the bones back there? Sometimes it can be a combination of things as well, not one single cause.

Early on the docs considered ankylosing spondylitis for me because of so much lower back pain, but as my condition progressed they settled on RA because of the other joint involvement and the lack of progression of back changes. So the underlying back pain was chalked up to injuries from a horseback riding accident in high school. I've also had a couple of kidney infections which can cause terrible pain back there.

Take care,

Genko