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Drugs for siogren. Please help

Posted , 10 users are following.

lia23756
lia23756

Hi. Is there anything that can stop the progress of the disease? I tried plequenil but I stopped taking it because of the side effects..

Thank you

1 like, 13 replies

13 Replies

  • brenda25965
    brenda25965 lia23756

    Posted

    Hi,

    Ive also had huge problems with plaquenil and as I could take no other drugs due to previous skin cancer I turned to vitamin and mineral options. I've been taking  Magnizium, Biotin, Ginseng, Cod liver oil,and a multivitamin with a good quality probiotic and for me it really has worked, I feel very well with no pain and though I still suffer with muscle fatigue and tiredness it's nothing compared to what it was. I use hylo forte eye drops and Biotene toothpaste and mouth wash which I find excellent and I use a good body moisturiser for dry skin. As I said it seems to work for me but everyone reacts differently to this curse of an illness and it's just a matter of trying to find what's good for you? Hope this helps, best of luck.

     

  • kristyk
    kristyk lia23756

    Posted

    Hi lia23756, At this time there are no medications for Sjogrens but studies and clinical testing is happening as we speak. Omega 111 and fish oil helps with dryness we experience and moisture we need. Not a cure but definitely helps.

    God bless you

    Kristyk

  • lia23756
    lia23756

    Posted

    Thank you. I hope that soon will be a cure for this disease. And yes, I use omega-3 and other vitamins, but it does not help me.

    I just wonder if medicine can help us after the glands were attacked...

    Sorry for my English..

  • christine_73623
    christine_73623 lia23756

    Posted

    i have have been diagnoised with SS for 22 years now and if there was something that can stop the progress of this disease i would have tried it or found it, slowly i am getting worse I am 53 and was diagnoised at 31 but believe i have had the illness since i was 18, the only thing that helps me is diet like a paleo diet, i excercise by walking, i also use vitamins, and baby oil in my bath, and i do not take medication, as i know speaking with other people it has made SS worse, for them in the long run . but that is only my opinon here. Although i cannot work now, due to fatique One day there will be a cure for SS but it may not be in my life time, but i never give up hope i am always searching the internet, and reading articles that will help or improve my SS,

    chrissy  

    • katalin59838
      katalin59838 christine_73623

      Posted

      Can you please tell me the steps to get disability? I have Sjorgens also and fatigue badly. Thanks
    • christine_73623
      christine_73623 katalin59838

      Posted

      Hi i am not on disability in any way, as i worked in mental health for about 15 years, and left about 4 years ago, i am married and have been with my husband since i was 16 and he was 17, he takes care of me , he has an extremley well paying job, so fiancially i do not have to struggle thank goodness as that would just be one more worry,, but my advice would be go to your Doctor and ask him about the steps you need to take.
  • kristyk
    kristyk lia23756

    Posted

    Hi, You can get alot of information from the Sjogrens Foundation. Try their site. I know I suffer alot from this disease also. The fatigue and pain are what I am dealing with now. I often stay in my pjs all day I'm so tired. I know the Sjogrens Foundation has so much information. Things are happening very quickly in the treatment of Sjogrens.

    This information is very helpful.

    God bless you and hope you feel better.

    kristyk

  • dee53012
    dee53012 lia23756

    Posted

    I have read studies that people with Sjogren's do very well on the palio gluten free diet. I eat this way and feel much better most of the time.  Staying away from all processed food is optimal(not easy but doable).  The more you restict unheatlhy foods, the better you will feel in general. 

    Hope you feel better soon!

  • tracy79802
    tracy79802 lia23756

    Posted

    Hi Lia - I tried plaquenil too but stopped taking it because it didn't do anything for me and the side effects were too risky.

    Like some of the other folks mentioned eating a paleo diet (there's one for autoimmune diseases) helps.

    I know it's frustrating and scary to have this disease. My symptoms ebb and fow. Some days / weeks are better than others and I never know why. 

    Hang in there. 

    Tracy.

  • carol58098
    carol58098 lia23756

    Posted

    I saw my rheumatologist 2 months ago for the first time, and he prescribed Plaquenil but I do not want to take it due to side effects. I go back to see him in February and I wonder how he will respond to my not taking the drug. I know it is my choice ultimately on what to do for myself. Has anyone been in this situation and how did the doctor respond?
    • kristyk
      kristyk carol58098

      Posted

      Hi carol58098. I was given a prescription for Placquenil. I decided that I wasn't going to try it because of the side effects. When I went back to the doctors next visit I told her that my sister had stopped taking Placquenil because she experienced bad headaches. Before I left the doctors office the doctor was still trying to get me to try the Placquenil. I don't know if she truly believed it would benefit me or maybe she got a kick back. Who knows. See her in December, I will be curious if the doctor will suggest it again or not.

      God bless you

      kristyk

    • carol58098
      carol58098 kristyk

      Posted

      Hi kristyk, Thank you for the reply. If you remember let me know what happens when you see her in December. 

      God bless you too.

      Carol

       

    • kristyk
      kristyk carol58098

      Posted

      Hi Carol, I wont forget because I wrote myself a note on my calendar. I will let you know.

      Kristy

  • beverly39559
    beverly39559 lia23756

    Posted

    I've been on Azathioprine 100 mg for almost 5 years. It's an immunosuppressant that once was used for kidney transplant recipients so they wouldn't reject their new kidney. My neurologist uses it on other patients he treats for autoimmune diseases. I have my blood checked every month so he can monitor side effects. I also take Amiytriptylin 50 mg for nerve pain and sleep. It works great for me. 

    I would be much happier if I didn't have to take anything but I feel like I'm not any worse in fact I did much better this year when we took a trip to Europe than I was on a previous trip 4 years. I'm now trying to approach this disease with diet changes. Read The Autoimmune Fix, a great book for anyone with an autoimmune problem. 

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