Blue toes?

[Pinkfish]

I had my first rheumy appointment this past Friday after testing positive for ANA and SSB. I was surprised that he didn't want to run any lip biopsy or any of the other tests for SS that I've read about. Is this normal? He said I clearly had Sjogren's.

He also asked me if I experienced blue toes, which I said I did not. But after stripping down for my exam he looked at my feet and said my toes were very blue. What does this mean? I feel like I have more questions than answers after my doctor's appointment. He gave me a prescription for eye drops (which were $160 with insurance!) and pain killer patch for my back, along with a blood work note to test for some things since I'm planning on starting a family this year. I had a miscarriage two years ago which he said could very well be because of the SS.  And he said the excruciating back pain, that made me go to the doctor in the first place, is most likely not related to SS? So I'm supposed to be having an X-ray of my SI joint for the pain as well.

Anyone else have experience with blue and cold limbs, and know what that means in all of this?

[Ripvanann]

Hi Pinkfish with blue toes. =)

Yes, everything sounds very normal,  just sounds as if your rheumy isn't explaining things for you. Actually,  you're one of the "lucky" ones who tested positive for SjS from the get go. Lots of us are seronegative, which means that our blood work is all normal,  but we still have it. This is when they send for lip biopsies and such. You have been confirmed through blood work and symptoms.

The blue toes is Raynaud's Phenomenon.  This often walks hand in hand with SjS and is also AI (Autoimmune). As I always say, AI's don't like to come to the party stag. So basically it's very poor circulation.  Since it is not giving you any trouble, your rheumy doesn't need to Rx anything.  However, should you begin to experience pain amd numbness,  he may want to give you some meds for blood flow and or creams to stimulate circulation.

The miscarriages are also common in SjS (I had 3 consecutive).  Often times you can have what I have, which is basically tiny blood clots that will do nothing to you, but will do all the things to a baby that big clots would do to us. They gave me a baby aspirin a day and I went on to carry and deliver two huge healthy twins. The acronym (no joke) is MTHFR.

The back pain is most likely stiffness and joint pain caused by lack of moisture to your muscles and bones. You could also have small grains of "sand" in your kidneys which are essentially,  tiny stones. Both of these things are common with SjS as well.

Did your doc give you anything beside the pain patch as far as meds. Plaquenil? I a, very glad to know that you have someone taking you seriously and that you have a Dx this early on. Always trie and remember that treating the AI is what is important. Treating the symptoms helps relieve them, but doesn't get to the root. Treating the AI for one with Plaquenil,  may help the other. We are here for you and any questions you have.

Peace and blessings,

~Andrea

[Pinkfish]

Thank you so much for your reply, Andrea. You explained it perfectly. And I'm glad you had two healthy twins!

He didn't prescribe any other meds for SS. The SS really doesn't bother me much. Some times I wake up with my eye lids stuck to my eyeballs and it's really hard (and painful) to get them to separate, but since it only happens about once a month I just find it annoying.

I guess I should do some research on Raynaud's Phenomenon then!

[Carolina]

Yes, pinkish,

I also have blue toes, and my feet are usually icy cold.

I don't test positive for anything except Immune Deficiency.  My Immune Deficiency trumps everything.

I have the version of Immune Deficiency that goes with Autoimmune conditions, but I don't test positive for them.

You can see a vascular specialist about your Raynaud's and you can also read up about it.

Here is the Mayo Clinic on Raynaud's:

http://www.mayoclinic.org/diseases-conditions/raynauds-disease/basics/treatment/con-20022916

There are some medications and treatments for Raynaud's. 

Since I have severe coronary artery disease I do take a beta blocker, which probably aggravates my Raynaud's.

So when I see my cardiologist in June, I'll ask her if I should/could try a different medication for my blood pressure.

It's always something it seems!

Hugs,  Elaine

[quietdynamics]

Purple to blueish.. and shades in between.
Summer is coming hard to find a shade of nail polish for those tootsies that doesn't clash.

I usually get up and walk around around when I see it.

One Dr. while during an exam when I specifically pointed it out (in the summer) said "Oh your feet are cold"  Never bothered to go back to him again.
Now I also have very cold hands.. last night I considered putting gloves on in bed.
Maybe two pairs...

I have had miscarriages also,, way before I knew about any of this or anything else.
Aunt had a large number of miscarriages.. sometimes I wonder. 

If this had all happened before having children ( one an emergency C-section, 2nd 'termed' a crisis pregnancy), I would have talked to a Dr., gotten a full family history, including aunts, uncles and cousins.. both sides. And perhaps consult with a geneticist.  Forewarned is forearmed.

Daughter is now 21 and we talk about her concerns... she was born healthy.
In adolescence she was hospitalized for a thyroid storm. Later learned thyroid issues are rampant in family. ( 5 out of 8 female maternal/ cousins..geesh, 2 males have other AI)

Rheum suggested I have daughters' ANA checked. We did.

[machenza]

Yep, the blue cold feet. All my life I had those and no one ever said it could be anything. Now that I got furnished with a SICCA as well, it is clear where those came from. I am glad you were diagnosed relatively fast, so the doctors can proceed to helping you. As for the biopsy, I guess it is kind of nice that you do not have to undergo that pain...

Nelli