Author Topic: Sicca syndrome  (Read 1231 times)

Maria3667

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Sicca syndrome
« on: October 20, 2021, 03:58:23 PM »
Hi everyone,

As some of you may know, I'm a long standing member of this forum. I'm eternally grateful for all the support and things I've learned from all of you :)

When the EULAR-criteria came into effect, my rheumatologist classified me as 'Sicca non-Sjogren's'.

Little is known about Sjogren's, but general 'sicca syndrome' is shrouded in even more mystery. That's why I want to gather more experiences and information so we can educate and support each other.

You're more than welcome to join my FB-page about 'sicca syndrome': www.facebook.com/groups/948508912415448/?ref=share

As we're all linked by symptoms, I will remain a faithful member of this forum too!

Wishing all of you the best of health and relief from your pain  :)
« Last Edit: November 08, 2021, 09:05:50 AM by Maria3667 »
53. DES-daughter ('67), Lyme's ('98), GAD ('98), Sjogren's ('02), hypothyroid ('04), endometriosis ('14), osteoarthritis ('16), blepharitis & MGD ('18). Pilocarpine, thyroid meds, 12.5mg quetiapine, 5% testosterone. Allergies: sodium hydroxide, nickle, methylisothiazolinone, latex

Maria3667

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Re: Sicca syndrome
« Reply #1 on: November 07, 2021, 03:12:07 PM »
    Just to be clear, 'Sicca non-Sjogren's' may mean you have all the hallmark symptoms such as dry mouth & eyes, but no positive SSA/SSB or biopsy (classification criteria for Sjogren's). So I'm sero-negative for Sjogren's.

    For me it means everything is DRY ! My mouth, eyes, ears, nose, esophagus, bowels, skin, cuticles, bottom of my feet, etc.

    My blood work is all in order but I do have:
    • positive ANA
    • low C4
    • lowish C3
    • low vitamin D (which I can't correct because supplements aggravate dry eyes and I burn in direct sunlight)
    • low magnesium (corrected by supplementation)
    • low FT4 (thyroid) - (corrected by supplementation)
    • low CRP
    • low blood pressure
    • low heart rate (when resting)

    Are these typical 'sicca' signs? As so little is known about sicca, nobody knows for sure.
« Last Edit: November 08, 2021, 09:38:52 AM by Maria3667 »
53. DES-daughter ('67), Lyme's ('98), GAD ('98), Sjogren's ('02), hypothyroid ('04), endometriosis ('14), osteoarthritis ('16), blepharitis & MGD ('18). Pilocarpine, thyroid meds, 12.5mg quetiapine, 5% testosterone. Allergies: sodium hydroxide, nickle, methylisothiazolinone, latex

meirish

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Re: Sicca syndrome
« Reply #2 on: November 07, 2021, 08:54:35 PM »
I am wondering if you do have Sjogrens. People that have a lot of these symptoms are quite frequently diagnosed with sero negative Sjogrens. This is more common than one would think. The hypothyroid is very common in people with autoimmune diseases and one should make sure to have a blood test called TPO which is a thyroperoxidase blood level. This level is elevated in people who have antibodies against the thyroid. This condition is called Hashimotos and is an autoimmune disease.

I had most of the symptoms that you have for many years but always had negative sed rate, ANA and CRP. It was many years later that I had a lip biopsy that was positive. My doctors were all amazed as they never thought I had Sjogrens. Soon after I had the positive SSA-SSB blood work also. The problem with blood work is that it is fickle.

Blood work for autoimmune diseases can run negative for years but we still have the symptoms and then our blood will convert to positive. After time goes by it can convert back to negative but we are still having the symptoms are are still suffering from the same autoimmune disease. In other words we are not cured if we are still having the symptoms. My immunologist explained this to me several years ago. He also said that there are people who can run positive blood work but not have any symptoms. It is a thin line that the doctors have to diagnose these diseases.

The problem that can arise is when doctors refuse to give Plaquenil or steroids when needed because we don't have positive blood work. We need to have our misery treated so we don't suffer. This is what I have learned on my 50 year path with Sjogrens and 4 other autoimmune diseases.

I also wanted to mention that the first symptom I had with the Sjogrens was the bad irritable colon that lasted 4 months and then balance problems. The very last symptom I had years later was the dry eyes. But my mouth was so dry that I ended up with so many cavities and dental work and ended up losing all my teeth long before the dry eyes. Good luck to you. meirish
« Last Edit: November 07, 2021, 09:03:10 PM by meirish »

Confused

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Re: Sicca syndrome
« Reply #3 on: November 08, 2021, 03:39:50 AM »
was high ssa 2008

2 tests about a month and 1/2 apart.

then turned sero.

Question   Had to have thyroid removed after hysterectomy in 2007  up until this year all fine.  Now told am hyper not hypo.  Related to sjogren's or whatever they are trying to say I have?

Maria3667

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Re: Sicca syndrome
« Reply #4 on: November 08, 2021, 09:14:51 AM »
Hi Meirish,

Thanks for your comments. You worded it very well!

Quote
Blood work for autoimmune diseases can run negative for years but we still have the symptoms and then our blood will convert to positive. After time goes by it can convert back to negative but we are still having the symptoms ...

As the blood work is so fickle, it basically means the EULAR-criteria are UNRELIABLE and doctors shouldn't use it as diagnosis.

Quote
The problem that can arise is when doctors refuse to give Plaquenil or steroids when needed because we don't have positive blood work.

That's exactly why I'm a little worried. My rheumatologist even said: "Officially now I'm prescribing pilocarpine off-label to you." For now it doesn't have implications for the insurance reimbursement, but what if the line is stretched even further?

I know about the TPO - been tested negative so often that I've given up on that one.

53. DES-daughter ('67), Lyme's ('98), GAD ('98), Sjogren's ('02), hypothyroid ('04), endometriosis ('14), osteoarthritis ('16), blepharitis & MGD ('18). Pilocarpine, thyroid meds, 12.5mg quetiapine, 5% testosterone. Allergies: sodium hydroxide, nickle, methylisothiazolinone, latex

Maria3667

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Re: Sicca syndrome
« Reply #5 on: November 08, 2021, 09:21:26 AM »
was high ssa 2008

2 tests about a month and 1/2 apart.

then turned sero.

That really is strange! Makes me wonder, can blood values change that quickly? Or are the machines unreliable?

Quote
Question   Had to have thyroid removed after hysterectomy in 2007  up until this year all fine.  Now told am hyper not hypo.  Related to sjogren's or whatever they are trying to say I have?

Possibly. My FT4 was within range for approx 20 years whilst I had all hypothyroid symptoms. Then suddenly - when I didn't expect it any longer - it turned positive just when I hit menopause. Sometimes I feel our blood work is playing hide & seek with us...
53. DES-daughter ('67), Lyme's ('98), GAD ('98), Sjogren's ('02), hypothyroid ('04), endometriosis ('14), osteoarthritis ('16), blepharitis & MGD ('18). Pilocarpine, thyroid meds, 12.5mg quetiapine, 5% testosterone. Allergies: sodium hydroxide, nickle, methylisothiazolinone, latex

Confused

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Re: Sicca syndrome
« Reply #6 on: November 08, 2021, 03:52:32 PM »
I know menopause is suppose to trigger Sjogren's but I had no thyroid problems until around the time I was getting ready for a hysterectomy in April 2007.  Around December of 2006, my GP discovered a 2cm nodule on my thyroid.  Tests were set up, including a fine needle aspiration.  Since the hysterectomy was already scheduled for April 2007, the ENT surgeon I was referred to by my GP originally talked about removing my thyroid in the fall of 2007.  In May of 2007, the surgeon changed the surgery date to that June.  Fortunately, no cancer was discovered in the thyroid gland.  That procedure and surgeon were the best of the three surgeries I had between April 2007 and May 2008.  It was a good thing to have the surgery because the right half of the thyroid gland was pressing against my windpipe and would only get worse. 

My husband doesn't know what FT4, C3 and C4 are.  If you have time, could you please tell me so I can pass it to him.

Thanks for writing.  I have been taking vitamin D supplements (up to 2,000 IU) occasionally.  I had been told by a rheumy to take 50,000 IU's for three weeks several years ago.

This is getting weirder all the time.

Confused

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Re: Sicca syndrome
« Reply #7 on: November 09, 2021, 01:59:39 PM »
Sorry made today  to explain the C4 etc.


Maria3667

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Re: Sicca syndrome
« Reply #8 on: November 09, 2021, 02:28:43 PM »
Thank goodness you had the bad part of your thyroid removed. So do you supplement with thyroid meds?

I'm also told to supplement with vitamin D but can't as it increases my eye dryness.


The blood work is pretty complex material I have a hard time understanding myself. Hope he can make sense of it??

C4 = also called CD4 is a glycoprotein and functions as a co-receptor for the T-cell receptor. Involved in immune function.
C3 = also called CD3 is a protein complex involved in T-cell activation. Also involved in immune function.

FT4 = Free Thyroxine. T4 is one of two major hormones produced by the thyroid gland.

Hope this helps?
« Last Edit: November 09, 2021, 02:32:49 PM by Maria3667 »
53. DES-daughter ('67), Lyme's ('98), GAD ('98), Sjogren's ('02), hypothyroid ('04), endometriosis ('14), osteoarthritis ('16), blepharitis & MGD ('18). Pilocarpine, thyroid meds, 12.5mg quetiapine, 5% testosterone. Allergies: sodium hydroxide, nickle, methylisothiazolinone, latex

meirish

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Re: Sicca syndrome
« Reply #9 on: November 09, 2021, 05:11:32 PM »
confused, I have had low vitamin D for many years. First time tested I think it was 6 which is very low. I was put on the 50,000 units for a couple of weeks. That is to raise your blood level of vitamin D to help get you in a number. Then I was put on the 2000 units a day and have been taking it for about 15 years or so and I am still not up in normal range. The Vitamin D level is very hard to increase but at the same time, we should not take it without having a test done every so often. I think mine is tested every 2-3 years or so.

It seems that researchers have discovered that this is a very necessary vitamin and helps protect again cancer and many other problems. I think it has been said to be low in autoimmune patients and that we need to take it on a regular basis. I have now heard that there are certain types of vitamin D that don't get absorbed as well as others but I haven't taken the time to research this yet. It is so hard to keep track of all the things we should. good luck. meirish

Maria3667

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Re: Sicca syndrome
« Reply #10 on: November 16, 2021, 08:09:58 AM »
Hi Meirish,

I agree with your stance about this essential vitamin D. But how can I increase it when it aggravates my eye dryness? I've tried several forms, but the end result is always the same. For some reason or other it makes my eyes drier, especially the left (!) eye (which only has TBUT of 2).
53. DES-daughter ('67), Lyme's ('98), GAD ('98), Sjogren's ('02), hypothyroid ('04), endometriosis ('14), osteoarthritis ('16), blepharitis & MGD ('18). Pilocarpine, thyroid meds, 12.5mg quetiapine, 5% testosterone. Allergies: sodium hydroxide, nickle, methylisothiazolinone, latex

meirish

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Re: Sicca syndrome
« Reply #11 on: November 16, 2021, 05:23:40 PM »
I have no idea about the relationship of Vit D and your dry eyes. I know there is a
vit. D that is considered to be better quality than others but I don't know what it is called. It requires a script I do believe.

The doctors that order Plaguenil for their patients who have symptoms that are like that of Sjogrens seem to feel strongly about seeing that their patients are comfortable. I have no clue why some doctors have been afraid to order this drug. It has been given for years for parasitic infections, mostly malaria and was noticed that the people taking the drug who had rheumatoid arthritis or lupus would begin to have decrease in symptoms and pain. They were not cured, but it improved their daily living considerably. The drug has been given for autoimmune disease symptoms for years and is the drug of choice for Sjogrens first time around.

Maybe your doctor has not been to any recent classes ono autoimmune disease treatment with Plaquenil and has not learned enough about seronegative sjogrens. You would not be the first one to have a doctor like that. It is very common. That is why most of us have had to fight our way to either treatment, diagnosis or both. Good luck. meirish

Maria3667

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Re: Sicca syndrome
« Reply #12 on: November 17, 2021, 04:38:24 AM »
Hi Meirish,

Thanks for your reply.

The knowledge of the doctors is up to par, but my body is acting weird!

I was treated with both Plaquenil & Nivaquine in 2007 & 2008. They were great in the saliva department  :)! However, both caused weird side effects like extreme hypothermia & constipation. Cutting the dose was to no avail.

I can't make heads or tails of this!
« Last Edit: November 17, 2021, 04:40:19 AM by Maria3667 »
53. DES-daughter ('67), Lyme's ('98), GAD ('98), Sjogren's ('02), hypothyroid ('04), endometriosis ('14), osteoarthritis ('16), blepharitis & MGD ('18). Pilocarpine, thyroid meds, 12.5mg quetiapine, 5% testosterone. Allergies: sodium hydroxide, nickle, methylisothiazolinone, latex