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Trying to understand...

Posted , 10 users are following.

shira75032
shira75032

Hi, I'm trying to understand this, hope someone out there can help me:

I understand that the the primary objective in treating Sjogren's is "managing the symptoms". However, if the disease is actually attacking our moisture glands shouldn't we target our efforts on stopping the attack?

If we only treat the appearing symptoms won't the disease just continue to wreak havoc on out system damaging our cells beyond repair?

2 likes, 92 replies

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  • pam_87693
    pam_87693 shira75032

    Posted

    You need to do this even though I couldn't cope with pilocarpine and refused it over and over again my rheumy came up with a novel idea (off label) try pilocarpine eye drops starting on one or two drops a day. Obviously if you have a reaction then stop, but it's really just a very low dose  1.0%w/v Its just an idea, I don't seep to be reacting unless that's causing my dry cough to get worse! I don't think so I had a bacterial type chest infection last year and I hadn't taken Pilocarpine for over 15 years then! 
    • shira75032
      shira75032 pam_87693

      Posted

      Thanks an excellent idea Pam! I didn't know there were Pilocarpine eye drops as well. I don't understand why my doctors aren't suggesting this.Wish I could take the pill though since I have severe dry mouth as well.
    • pam_87693
      pam_87693 shira75032

      Posted

      Well that is what my Consultant who is the President of the BSSA the UK Sjögren's group suggested. She is very interested in seronegative Sjögren's as I am totally negative other than a positive ANA! 
    • shira75032
      shira75032 pam_87693

      Posted

      Interesting Pam, I am negative on specific Sjogren's sero but positive on ANA and RNP.
    • pam_87693
      pam_87693 shira75032

      Posted

      I suspect that will be my eventual diagnosis! As Dr Price never does bloods an I am on MTX and Sulfasazin. When a local rheumy too me off MTX I had almost total Dysautomnia, went up to St Thomas where with a 0 mm Shirmer he said get back on the MTX! I then decided to see Dr Price who said oh yes your ANA is knocked out by your MTX! I have been carving off thick skin on my fingers for years and have 'Lupus nails' horizontal lines I suspect this will be the ultimate diagnosis! 
    • jean34329
      jean34329 pam_87693

      Posted

      Pam

      What is sero negative Sjogrens . What did you mean by 'totally negative 'other than a positive ANA?

      Is the ANA a test for Sjogrens?

      Thank you

      Jean

    • pam_87693
      pam_87693 jean34329

      Posted

      Hi Jean yes it is THE test for autoimmunity. Each cell has a nucleus Think of a fried egg the yolk it the nucleus.when your body turns against you the cells that are supposed to protect you turn against you and eat you up! So think of pacman in my kids day it was a computer game. The little yellow pacman gobbled up stars. In the same way due to either an infection, operation or some trauma your body for reasons not yet fathomed in SS your body turns. The titre is the dilution looking for bits of yolk. Starting at 20/ 40/ 80/ 160/ 320. Now a low titre can happen in pregnancy or due to other reasons but once it reaches I believe 320 it IS the test. I hope I have got the numbers correct! 
  • Sunsetstuff
    Sunsetstuff shira75032

    Posted

    I think because it is such a small percentage of people that have Sjogrens, there aren't a lot of research funds. There are however, many auto-immune diseases much more 'popular' where there is much more research being done due to more funding. The basics are our own defense system is attacking our own healthy systems...... And the 'why' discovery is yet to be reached. Once the 'why' is reached, a how to stop it will be next. It sounds like you are an intelligent person. See if you can find the older movie called Lorenzo's Oil with Susan Sarandon and watch it. Start researching the research on auto-immune diseases. See what you can do to raise funds and awareness for research. Someday........
    • pam_87693
      pam_87693 Sunsetstuff

      Posted

      I have watched Lorenzo's oil brilliant movie. Yes I understand perfectly it's the 'what' I can't find? 
    • shira75032
      shira75032 Sunsetstuff

      Posted

      Thanks Sunsetstuff, from what I've heard and read so far you are correct about the fund issue. I did see that movie long ago, very inspitational.
  • pam_87693
    pam_87693 shira75032

    Posted

    This primary objective is just that to treat the symptoms nothing more. 

    1) dry eyes eye drops 

    2) mouth very strict oral hygiene and regular dental visits

    3) vagina lubrication and treatments for thrush

    4) IBS try conservative measures first my looking at possible causes often food Allergies. Tests for Coeliac if negative have you had mouth ulcers if so how long? If a very long time test for Chrohn's 

    5) bloods you need a positive ANA with a reasonably high titre

    5) bloods positive OK bloods negative lip biopsy. 

    6) if you have no ANA but the Sicca symptoms that is most inportant. 

    7)Food try to eat a healthy balanced diet low in sugars, don't smoke try to limit alcohol. A Mediterranean diet is best. Fresh produce plenty of nuts seeds vegetables and fruit. Chicken or fish. 

    8) avoid Internet drugs 

     

    • shira75032
      shira75032 pam_87693

      Posted

      Pam what I don't understand is that if we only treat the symptoms don't we end up with accumulating damage from the ongoing inflammation and attack on moisture glands?
    • jean34329
      jean34329 pam_87693

      Posted

      How do you cope with the joint pains, assuming that you have them  in the first place.

      You are lucky because unlike me youhave a dr looking  after you who understands ss

    • pam_87693
      pam_87693 jean34329

      Posted

      No he doesn't Jean my GP doesn't understand! My Consultant does, I have suggested her on numerous occasions assuming that you live in the UK! I won't mention an off label product as it has NO use in Sjögren's syndrome in the UK! She is the President of the BSSA the charity for Sjögren's Syndrome  I have a positive ANA but nothing else. This morning I'm off to UCHL to prove she is correct. The Hospital car will be here soon. 
    • jean34329
      jean34329 pam_87693

      Posted

      Hi Pam

      I was referring to the consultant actually!

      I was being genuine in saying that you are very lucky.

      Forgive me for asing but is she in the London area?

    • jean34329
      jean34329 pam_87693

      Posted

      hI pAM

      When you say you are off to UCHL to prove she is correct are you saying that drs there are saying that you do not have Sjogrens syndrome? If so which dept are you under?

      Are you under the endocrine dept or respiratory or generalmedicine?

      Can you please PM me. It is urgent.

      Kind regards

      Jean

       

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