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Paleo/Darwin/Monkey Diet, Plaquenil and Restasis

Posted , 6 users are following.

jordan58854
jordan58854

Hello all. 

There are four things I wish to discuss because I think they are very important. I know a thing or two because my father, his sister, my cousin and I have ss. 

First, I think that many people on this forum make good suggestions, but nothing is written in stone. Too many people are reacting to posts and debating issues instead of giving their opinions, which are welcome, and moving on. This is not a forum to judge others. Just make your opinion clear and move on. No one needs tension when they have ss. 

Second, the Paleo diet, Darwin diet and Monkey diet are all pretty much the same thing. Eating naturally--not packaged foods with additives--organic--gluten free, etc. All organic off the vine and tree is good for you because it is what the human body was meant to eat--the natural things that grow and live around us. Things that will not challenge the body to process or reject but instead build healthy cells. Meat, like in the Atkins diet, can be harmful if more than a small portion. That is a fact that has been proven by many medical associations. Fish is best. Only small portions of protein from meat. 

Third, in regard to Plaquenil, it is a drug that was produced in the 1950's for malaria. The drug accidently gave some relief to patient with ra. That is the only reason drs prescribe the drug for ss patients. If you get relief from pain that is great, but a Hopkins dr told me the drug can be very toxic and he would not prescribe it. My father's dr gave it to him and it made my father feel sick. He no longer wants to take it. It is important to get liver enzyme tests if you take the drug to make sure it is not having a toxic effect on your system, including your retinas. 

Fourth, I do not know what to think of Restasis. A  Hopkins dr told me the original Restasis eye drops were just plainly good eyedrops with no Cyclosporin. Later Cyclosporin was added. Cyclosporin of course affects your immune system by stopping the effect of your immune reaction and the added inflammation on your eyes. My concern about Cyclosporin is that it can enter your tear ducts and run down you throat so you are digesting Cyclosporin. What that means, I do not know so it concerns me so I do not use Restasis any longer. My eyes are dry. They do not tear when I cut onions like they did ten years ago. What changed I do not know other than inflammation. I do everything in my power to reduce the inflammation in my system so my eyes are not so dry. My eyes tear when I cry and I make tears when I yawn but that is not the same as a tear reaction to onions which may be another system. I am doing research on this fact. I wish drs were more interested in the subject but then there is golf to keep them busy. 

Try to eat right, don't drink alcohol at all, don't smoke at all, no drugs at all, exercise, sleep deeply and long, drink lots of plain water, take a vitamin and no stress and get awayfrom mean people if you can help it, and find ways to meditate and live your life's passions. I find that when I am not stressed I feel very healthy. I think ss relies on stress to do its damage. In the past I had a very stressful life and still do in regard to work. 

I hope this post helps someone in need. 

2 likes, 10 replies

10 Replies

  • christine_73623
    christine_73623 jordan58854

    Posted

    Hi

    For me diedt is very very important, eating healthy and no processed food has been really good for me, as i have had ss now for 22 years and have had it since i was 31, diet may not be as important to others but once you go along on your journey with SS it will become more important, as i have come to know , We heard on the news that Atkins diet they  are saying now is as bad as what smoking is on the body.  I do not smoke have not also for 22 years, i too drink lots of water,, I take a vitamin for my hair skin and nails, i am not stressed at all either,  I do not work now but did right up until 2 years ago and worked since i was 16, but took time of to have my 3 children, I do not take any medication for SS, for i believe in the long run it will make your symptoms worse due to side effects, I have a lot of inflamation in my body especially my chest, I do take medication for sleeping and take one pill for this as sleep is so good for a person mentally you need to sleep well with SS.

    thankyou for your post, positivity for me is the best way to combat SS stay postive no matter what, someone else is always worse off than me.But i will still have a glass of alcohol once per week,, I was in intensive care nearly two years ago in June i had complications of phumonia and SS and was on life support for 11 days that has made me so much stronger mentally, i do not sweat the small things in life and every day look for postive people and postive things to fill my life up with 

    • shaq26875
      shaq26875 christine_73623

      Posted

      Well said Christine. Positivity in dealing with life is half the battle. (for mental and physical health)

      ​

  • lily65668
    lily65668 jordan58854

    Posted

    Hi Jordan,

    Yes - I go along with most of what you (and Christine and Shaq) have said. I firmly believe that taking charge of our own health is the best way forward when dealing with a chronic auto-immune disease like SS.

    I don't entirely agree with the details of your views on diet, but I'm certainly on-side when it comes to only eating "real" food that you've prepared yourself, rather than junk food stuffed with salt, trans fats, sugar and goodness knows what additives. After a bad start in life I've eaten that way for more than 40 years now. Although I developed RA 35 years ago followed by SS 20 years ago, I'm convinced that a healthy life-style has contributed to the long remissions I've enjoyed, as well as the relatively little permanent damage wreaked by the disease. That, and avoiding prescription meds altogether! The only exception to this is thyroxine, which I've been taking for the last six years, after SS started attacking my thyroid gland. But I don't count this as a medication as it's simply a synthetic version of a hormone my body no longer makes enough of.

  • jefferson89822
    jefferson89822 jordan58854

    Posted

    ...Hi there, I actually find it quite insulting that you make the statement (2nd para); "...just make your opinion clear and move on"  jordan58854=Who the hell do you think you are! You don't own this site. There are are people out there who probably could leave you standing. I suffer real bad with chroinic fatigue. I aqm a dancer, and i know whatt a decent way of being is. HOW DARE YOU be so 'know all' and the patronising way you express yourself.
  • jordan58854
    jordan58854

    Posted

    I only said that we should not judge others' posts because someone replied negatively to my post that read it is not good to eat too much meat. I made a very polite post and someone judged my post. You took my post the wrong way and have been very inappropriate toward me. 

     

  • jordan58854
    jordan58854

    Posted

    Jefferson 89822, I just read my post that you say bothered you and think you read it in a negative light. I try to share the things that work for me and my family in regard to ss. I hope that all will share what helps them. I have read a lot of information on the problems with a high protein diet, like Atkins. Someone responded negatively to my original post so I wrote a post about not judging others' post. That is it. Wish you did not take the post so negatively. 
  • frustrated61
    frustrated61 jordan58854

    Posted

    Hi Jordan ~

    First, well said, I'm sure people will get the message.  I know you haven't or may have seen my name before, but, I've been on this site for a long time.  I believe it's 2 1/2 yrs.  I had to stop because my eyes were getting so bad and extra dry  from SS.  I still am suffering the dryness.  

    Since my tearducts were cauterized, the doctors (3) at the U of M Kellogg Eye Care Center located in the States.(U or M= University or Michigan)  They told me to absolutely not to use the Restasis eye drops.  Rather, I was fitted with lenses called PROSE.  It took a month twice a week to learn how to put them in.  They are much larger than regular contacts, covering almost all the white part of the eye as well.  The purpose of the lenses is to make sure the eyes are lubricated,  thus, PROSE lenses has lubrication put in b4 being put in the eyes; it lasts approx. 8-10 hours.  And, the most remarkable part and a bonus, my eyesight is 20/20 with the lenses in!  YAY!!  I have to be excited about that.

    I do want to express that though I'm wearing a special lens, my  eyes still have problems.  I use ointment at night bc my eyes get so terribly dry that the lid sticks to the eyeball.  I've had many corneal abrasions which is painful in it's own rights.  I have to go in and have a bandaide patch put on my eye...it sets on top of the cornea.  It doesn't really  hurt bc they put something on the eye to numb it.  I did almost go blind in my  left eye.  One time my cornea got an infection...I literally  could not see the largest letter on the eye exam...I did cry at that point...it was really humbling.  

    I've had SS since 2013 (that's when they dx'd it but I did suffer for almost a year before so, I say 2012 cheesygrin) I also suffer from sarcoidosis since 2005.  I think meditation is one way for sure to keep yourself in check.  I was in an auto accident which broke my back and fractured my neck which led to 5 surgeries...3 very intense.  The reason I mentioned that is bc I am not able to do exercising.  The SS has added to the pain and it's stressing me out.  So yes, meditation is in my line.  I've done it prior bc someone on here suggested it and it really does work. But, they key  is to do it in a room or outside where no one is around...you need silence to concentrate.

    Anyway, I sure did ramble on.  I do appreciate reading your  post, Jordan, adding to your comment about ppl getting confrontational about someones suggestion, that has and always will happen.  You were very diplomatic in stating the problem and putting out the fire.  smile  I am feeling a bit stronger now so my intention is to start with a few days  a week bc believe it or not, this little post is making my fingers feel like they are spasming and my eyes are sore.

    Thank you, again, Jordon.  I do have one more question, is anyone experiencing hair loss?

    Regards,

    Frustrated61

    • lily65668
      lily65668 frustrated61

      Posted

      Yes, I experienced a lot of hair loss about 10 years ago (10 years after my first SS symptoms). This was eventually found to be due to an under-active thyroid, which is not uncommon in SS. Have you had your thyroid levels checked? The problem is that some doctors will only prescribe L-thyroxine if T4 (main thyroid hormone) levels are low, regardless of TSH levels.

      I'm sure you know this, but I'll explain just in case someone else who is reading this doesn't. TSH (thyroid stimulating hormone) is secreted by the pituitary gland to keep the thyroid working. If thyroid activity starts falling off, the pituitary produces increasingly high levels of TSH to try and keep it going.

      In my case, my T4 levels were barely above the minimum level for several years, while my TSH was way over the top and going higher every time. Throughout this time I was losing more and more hair, getting constipated and generally feeling I was running out of steam. I eventually took a stand with my doctor, who referred me to an endocrinologist. She ordered a specialised urine test which identified covert hypothyroidism, following which I was put on L-thyroxine. Since then I've stopped losing hair, though the hair already lost has never regrown.

  • jordan58854
    jordan58854

    Posted

    Hello frustrated61. I thank you for your detailed post. My dr suggested PROSE, and with your information on PROSE, I think I will try the lenses at my next exam. Anything that would improve my eyesight would be a plus. My eyes get very blurred after a day at work and on the computer at night. Also, thank you for your kind words. 
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