Author Topic: Does anyone handle sjs naturally?  (Read 8217 times)

slccom

  • Guest
Re: Does anyone handle sjs naturally?
« Reply #15 on: April 19, 2013, 09:54:29 PM »
Ooo, Sleepy, how can you eat fresh pineapple? It turns my whole mouth into one big ache! I can have a little bit, but it feels like it dissolves my mouth tissues! I can eat all the canned pineapple I want, though.

Sharon

gurs

  • Hero Member
  • *****
  • Posts: 2709
Re: Does anyone handle sjs naturally?
« Reply #16 on: April 20, 2013, 04:44:02 AM »
I agree with sleepy 100%...If you have Sjogrens, in my opinion, you will find the older you get, the worse your symptoms will become.
I understand we all have different levels of progression, but to keep them from getting worse, would recommend the plaquenil etc.
I also would love to take everything natural, and do take alot of reasearched supplements, but they are not a cure, they only manage some
of my issues, like digestive enzymes, hydroeye (dry eye supplement) and some others. But, ive also learned that some supplements will make you feel drier and you could possibly be doing more harm then good. Especially be cautious of any herbs..as they seem to be the most dangerous. I always take very small amounts of anything new to see how I react as well. Research all you can before taking anything new as well, many do interact with medications.

Gursie
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

cargillwitch

  • Sr. Member
  • ****
  • Posts: 349
Re: Does anyone handle sjs naturally?
« Reply #17 on: April 20, 2013, 06:11:47 AM »
I think we also need for the benefit of the newer members to  remind everyone there are currently no PRESCRIPTION medications that have been clinically proven to slow progression of sjogrens syndrome or cure it.

Like herbs, dietary interventions, massage,exercise , tones, Ayurvedic medicine, acupuncture etc. etc,  all we currently have available to us through medical avenues is some relief from symptoms.

Which ones we choose to utilize is a personal decision based on our own values,experiences and comfort level with side effects.
47 female, Sjogrens ,Raynauds,degenerative disc disease.Rheumatoid Arthritis, gastroparesis.

Sleepy In Seattle

  • Hero Member
  • *****
  • Posts: 1286
Re: Does anyone handle sjs naturally?
« Reply #18 on: April 20, 2013, 07:53:03 AM »
Ooo, Sleepy, how can you eat fresh pineapple? It turns my whole mouth into one big ache! I can have a little bit, but it feels like it dissolves my mouth tissues! I can eat all the canned pineapple I want, though.

Sharon

Yeah - I know some people are REEEEEALLY sensitive to pineapple - almost an allergy, but they say it's actually some other process, I dunno. Whatever it is, fortunately, I don't have it! KETCHUP irritates me more than pineapple, for whatever reason! I also have gotten good at picking them out, and tend to get really mild, sweet ones. I think it's just the luck of the draw, whether you have that sensitivity or not. Obviously, if you have it, eating lots of pineapple is not an option  :(

Unfortunately, the pasteurization/canning process destroys the bromelain, so you're not going to get the anti-inflammatory benefit from canned or bottled juice. But it still tastes good!  ;D
Sjogren's, Lupus, Raynaud's, APS
Fatigue, Brain Fog, Autoimmune Hearing Loss, joint/muscle pain, dry mouth, clots in retina, etc
GF, "semi-Paleo" diet, Supplements, Plaquenil 400mg/day, Aspirin 325mg/day (for APS), Methotrexate 7mg/2x per week, Prednisone 3.5mg/day

jazzlover

  • Hero Member
  • *****
  • Posts: 3035
Re: Does anyone handle sjs naturally?
« Reply #19 on: April 20, 2013, 10:31:23 AM »
Healthy eating will never harm anyone, by the way!!
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

Tivia

  • Guest
Re: Does anyone handle sjs naturally?
« Reply #20 on: April 20, 2013, 03:13:24 PM »
Healthy eating will never harm anyone, by the way!!

This is true, now if I can pull myself away from the nightshades lol...and the chocolate

jazzlover

  • Hero Member
  • *****
  • Posts: 3035
Re: Does anyone handle sjs naturally?
« Reply #21 on: April 20, 2013, 04:04:24 PM »
:D .. The only nightshade I miss (some) is the potato. But it causes me so much body pain, all I have to do is remind myself so that I stay away from them.

Chocolate... is OK as long as it's dark and has very little sugar. (like 85% choc)  I cannot handle any sugar right now. One day I will be able to have some!!
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

smcmanus24

  • Guest
Re: Does anyone handle sjs naturally?
« Reply #22 on: April 20, 2013, 08:47:20 PM »
I'm newly diagnosed and I go back and forth on what to do. I eat pretty healthy but some weeks are good and others its an effort just to get out of bed. Does anyone have any research on cutting out dairy, meat, nightshades, etc and a "anti-inflammatory" diet. I just am at a loss and my GI system hates me at least once a week, I'm exhausted and the dryness is starting. I don't want to do to much at once and if I have a bad reaction to something I'd prefer to know what it is. I'm just confused and at a loss. Some days I think I'm good and can handle it and others it seems like mt Everest. I have a rheumy appt in may so I'm going to chat with her about this as well but I figured I'd ask.

Myshkin

  • Full Member
  • ***
  • Posts: 170
Re: Does anyone handle sjs naturally?
« Reply #23 on: April 21, 2013, 05:47:00 AM »
I guess I do a little bit of both? I do take plaquenil even though I had the worst side effects at first. But they're gone now, and I can feel it helping.

I do take supplements but nothing that my rheumy or neuro hasn't approved off (too many bad experiences there)

And I did quit wheat also

I take fish oil (GLA and evening primrose oil makes my epilepsy far worse) and then I take a vitamin/herb pill called LongoVital, which is very popular her in Denmark and actually has a study behind it documenting its effect in relieving symptoms on Sjogren's. I can definitely feel a difference with that - but not like plaquenil.

You say you take "the bare minimum of drugs to get by". That doesn't sound like the best strategy to me.
« Last Edit: April 21, 2013, 05:48:32 AM by Myshkin »
Newly diagnosed i 2012 with Sjogren's and feeling like crap. Just started Plaquenil and try to learn to live with the new me. Also joined by temporal lope epilepsy, auramigraines and PCO.

gold55

  • Hero Member
  • *****
  • Posts: 862
    • GoldenLoves
Re: Does anyone handle sjs naturally?
« Reply #24 on: April 21, 2013, 09:51:06 AM »
I think half and half is good.  I have a DO Rheumy and she almost took an attack when she found out I bought that Zyflamend and was starting to take it!!  It came to me upon good recommendation from all lay people but no physicians.   She allows me to take biotears gelcaps only because they've gone through extensive studies. 

Lately I switched from Joint Juice Sure Shots to 1st step chondroitin/glucosomine and MSM.  She's going to have a fit about this because she didn't recommend it and she probably has problems with taking MSM.  It's only 250mg of MSM but I do find it really helps with the inflammation in my feet and hands.  I've been taking NSAIDS but I believe they've been causing me a slight rash on the insides of both my legs.  By taking the C/G with MSM I don't need the NSAIDS near as much and I'm still not as stiff and in pain in the morning and nighttime. 

I know Plaquenil is in my near future however, with this new test for diagnosis I've read that the reason for it is to get people on treatment earlier to preserve the glands.  I think there must be some controversy regarding preservation of the glands because some say Plaquenil helps and others not!  If I were to be diagnosed years ago when I got this disease I don't think my Rheumy would have put me on Plaquenil because I wasn't experiencing extreme dryness and had minimal joint/muscle pain.  To tell you the truth, I really don't think any of these docs know the exact stage we are in or what the disease is doing to us until it happens and we have dire symptoms.
Dx#1:  dx changed to Sicca Syndrome + UCTD (how wonderful)
Dx#2:  Osteoarthritis and high cholesterol
Meds:  my golden retrievers, my doodle, otc tylenol, ibuprofen, mobic, vitamins, omegas, oral pilocarpine, liguid chondroiten/glucosamine with

star723

  • Guest
Re: Does anyone handle sjs naturally?
« Reply #25 on: April 21, 2013, 10:38:05 AM »
I'm newly diagnosed and I go back and forth on what to do. I eat pretty healthy but some weeks are good and others its an effort just to get out of bed. Does anyone have any research on cutting out dairy, meat, nightshades, etc and a "anti-inflammatory" diet. I just am at a loss and my GI system hates me at least once a week, I'm exhausted and the dryness is starting. I don't want to do to much at once and if I have a bad reaction to something I'd prefer to know what it is. I'm just confused and at a loss. Some days I think I'm good and can handle it and others it seems like mt Everest. I have a rheumy appt in may so I'm going to chat with her about this as well but I figured I'd ask.


Until 2011 I was trying to copy with this, then I tried a new doctor, she put me on an elimination diet for 3 months.  It takes that long for your body to heal.  I was simply amazed!! it was the dairy all along that was causing so much trouble.  I have a little bit of problem with Wheat.  I would go on-line to find the elimination diet.  There were many to choose from.  After the 3 month I was almost pain free. I do have a flair up ever now and again. As they have said it is not a cure.  My rheumy explained that when your body is out of sort because of what you are eating then the joints or muscles etc will get inflamed.  I so agreed with what is being said on here. I don't do well with meds so I was a happy camper when the inflamion went away with the changes in the diet....and that was all the research I needed.

jazzlover

  • Hero Member
  • *****
  • Posts: 3035
Re: Does anyone handle sjs naturally?
« Reply #26 on: April 21, 2013, 11:34:42 AM »
DEFINITELY try going dairy and gluten free. Well worth it for me!

I've been taking glucosamine, chondroitin and MSM for about 10 yrs. I can't do without it. (I've tried) I also can't do without curcumin. My PCP is all for it.
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

gold55

  • Hero Member
  • *****
  • Posts: 862
    • GoldenLoves
Re: Does anyone handle sjs naturally?
« Reply #27 on: April 21, 2013, 12:54:38 PM »
Oh that's good to know Jazz....thank you!
Dx#1:  dx changed to Sicca Syndrome + UCTD (how wonderful)
Dx#2:  Osteoarthritis and high cholesterol
Meds:  my golden retrievers, my doodle, otc tylenol, ibuprofen, mobic, vitamins, omegas, oral pilocarpine, liguid chondroiten/glucosamine with

SjoGirl

  • Hero Member
  • *****
  • Posts: 2120
Re: Does anyone handle sjs naturally?
« Reply #28 on: April 21, 2013, 02:33:54 PM »
Does anyone have any research on cutting out dairy, meat, nightshades, etc and a "anti-inflammatory" diet. I just am at a loss and my GI system hates me at least once a week, I'm exhausted and the dryness is starting.
See Dr. Andrew Weil's anti-inflammatory diet on the Web. He is a Harvard trained physician who has also studied Eastern medicine. The diet he recommends is simila to those I have read in other books about auto immune diseases.

Elimination diet may or may not work, it depends whether food or something else is a trigger. For some it is foods, for others allergies to items in the air such as mold, for others it might be stress, for others something else and can be a combination of things as well.

My inflammation is better since I started the anti-inflammatory diet, but I had H Pylori and gastritis last year and have not been able to get my stomach straight since then. Hydroxychloroqiune has been a big help with both inflammation and fatigue.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

jazzlover

  • Hero Member
  • *****
  • Posts: 3035
Re: Does anyone handle sjs naturally?
« Reply #29 on: April 21, 2013, 03:01:28 PM »
His site may indeed have some research. (Weil)

But for the most part, there is no money in doing research of that type... so it's unlikely to happen. YOUR BODY knows what is good and what isn't. Best research there is.
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease