We had a wake and funeral (my uncle) yesterday and today. A very sad event in my family because we're all very close so all of my 35 cousins were there and these funerals are getting to be like family reunions!
I have a cousin who was dx'd with RA a few years ago, and another with RA last year. The first one is treating it completely with diet, the second one is taking plaquenil. Anyway, I told them about having PsA and finally going on Enbrel, and the one on the diet exclaimed, oh my, you HAVE to get off that stuff--it's sooooooo bad for you! She said I should get the book by Amy Meyer about diet pertaining to disease like ours. She swears by it. Well, all she had was a swollen finger. Maybe it was a very mild start of RA, or the diet probably works because she doesn't even have RA to begin with, and now she's torturing herself with eating very limited food choices! I told her I like junk food and sweets too much--I couldn't handle being on such a strict diet! I mean, geez--that's too drastic! I didn't even bother to try and explain how biologics work. My cousin on plaquenil and I just sort of looked at each other and used our non-verbals, haha!
Grandma J, I'm sorry to hear about your uncle. My thoughts are with you and all your familiy.
Funnily enough I had a similar 'opinion' from one of my sisters-in-law yesterday. I see her very infrequently so she really doesn't know what's been going on for me these past few PsA years but anyway she'd asked and so I'd been explaining the treatments and how from the basics of anti-inflammatories you're escalated through the DMARDS to biologics, and what they are. She asked relevant and thoughtful questions ..... then finishes with "have you tried homeopathy?"
Well, actually, the answer to that question was "yes, I have" alongside my scientific evidence based treatments. Did it make any difference? Not that I noticed. Would I give up my biologic in favour of exclusive homeopathy, restrictive diet, painting myself purple and dancing underneath a full moon? In a shot if there was one shred of scientific evidence it would make a difference! Until then I will continue to take the best treatments that evidence based medicine has to offer and approach complementary therapies as just that 'complementary'.
So dear sister in law, have you tried homeopathy to replace the steroid inhalers that keep your asthma under control?
When you’re diagnosed with PsA, diet is a good idea. If you’re young it can be treated with success. When you’re older quality of life is the most important. If that means going off your diet for something delicious, so be it!
Thanks Jules and Tired OP, it is so annoying! I did try everything imaginable before giving up and going on Enbrel. But I'm sure if I had told her that, she would have asked, did I try this, or that, or.... eating cow placenta??????
I would like to get the book she suggested just to see what it says.
And, I should have told her, if biologics are just a bandaid, how did my psoriasis go away? That's such an obvious sign of disease that NOTHING else--no lotion, prescription--nothing could do anything for my P except stop the itch temporarily!
Some people don't understand--if only it was so easy to fix autoimmune disease. I wonder if she had lupus or sclerderma--would she try to fix THAT with diet?
Oh, and I do agree a healthy diet is important, and sugar, gluten, etc., aren't good for us--but this is our way of life! Maybe if people had never started using these things in food, none of us would have autoimmune disease or some other diseases, but there would probably be something else!
Yitsa, I think that you are right about mild disease. I know that I feel just a bit better when I take my Omega3 capsules and my VitD regularly, as well as limiting carbohydrates and sugar. If I had mild disease, that might be enough to keep me comfortable. And like you, I’d gladly trade! I’d be $6K a year better off, for one.
Yep, you’re right–I wish I would have thought to tell her that–except anything I would have said would have started a big disagreement-not appropriate at a wake haha!
Yitsa said:
There’s nothing unnatural about biologics. They are made with DNA. You know, kind of like all life on earth.
Anyway, it must be nice to be such a mild case that natural methods can give you all you need. I’d gladly switch for such a mild disease.
Definitely–I always take 2,000 omega 3, 100 coq10 and recently added calcium/D. These things are great and good for us, but they don’t stop disease. Same with not eating nightshade vegetables, or eating certain spices or using essential oils–they’re not harmful and may have some benefits, but mostly a cover-up. Just that they’re healthier and less harmful than pain pills (which I do call band aids) but they are not the big guns against diseases!
Seenie said:
Yitsa, I think that you are right about mild disease. I know that I feel just a bit better when I take my Omega3 capsules and my VitD regularly, as well as limiting carbohydrates and sugar. If I had mild disease, that might be enough to keep me comfortable. And like you, I’d gladly trade! I’d be $6K a year better off, for one.
Oh, I’m with you guys, if only a healthy diet would make a big difference… Problem is, mine has been good for 15 years (and I only got PsA 4 years ago). And I have the joy of bowel involvement too - there are some foods that make me flare - I only ever eat them if on a short steroid burst. I find the same thing as Seenie and Yitsa - my humira gives me an 80% improvement ( yep I’m lucky) - the vitamins and food choices give me another 10%. 10% over and above 80%, which means a full time, interesting job, good mum to my daughter, and some energy left over to go to the gym and go camping with the family is great. 10% without the humira didn’t change the outcome - I still was destined not to be able to hold a job, end up in a wheelchair, and not be the mum and wife I want to be.
For me, the blindingly obvious thing is to throw everything at it - good diet, regular appropriate exercise, mindfulness, vitamins and supplements (under medical supervision!), heat and cold, but at its core, disease modifying medication (whether it’s biologics or other dmards that work for you, or both). I’m pretty sure that without all of these things, I really wouldn’t get to do nearly as much, or have so many good days and weeks, but I guessit is different for everyone, so I do believe theremaybesomelucky ones in terms of symptom control.
I get the same nonsense from my soon to be daughter-in-law's mother. She has desided she understands my entire medical history in 5 minutes. There;s also the little fact that they have no money issues and we live paycheck to paycheck. Yay for her that she can afford all the new age treatments for the all the latest fad illnesses that amazingly go away with the fad treatments.
I am new to the diagnosis, but a 14 year veteran to the disease. I think (in all of my naivety) that one of the problems with this terrible disease is the name arthritis in its description. When most people hear that word they sigh and say a bunch of inconsiderate things which all allude to the fact that its only arthritis, they have no idea how serious and debilitating it is. After an explanation they always say "oh, I had no idea it could be that bad". . . . . . .
I get the same nonsense from my soon to be daughter-in-law’s mother. She has desided she understands my entire medical history in 5 minutes. There;s also the little fact that they have no money issues and we live paycheck to paycheck. Yay for her that she can afford all the new age treatments for the all the latest fad illnesses that amazingly go away with the fad treatments.
Ain't it the truth!!!! And thank you, hope! hope4444 said:
My sympathies to your family Grandma J,
I am new to the diagnosis, but a 14 year veteran to the disease. I think (in all of my naivety) that one of the problems with this terrible disease is the name arthritis in its description. When most people hear that word they sigh and say a bunch of inconsiderate things which all allude to the fact that its only arthritis, they have no idea how serious and debilitating it is. After an explanation they always say "oh, I had no idea it could be that bad". . . . . . .
Amen! Arthritis does not even tip the top of the iceberg! When I had to stop Enbrel for a week and granted I am in the “gap” still the look in my mother’s face that I might be back relying on pain pills made me feel so subhuman I can’t explain it! I am almost ready to explode with the expectations everyone has for me because I feel very incapable of fulfilling everyone’s needs but hey it’s just “arthritis” right! Yes, Easter dinner will be at my house just like Xmas, new years, fourth of July and every other holiday! Sorry today is my breaking down day hopefully that’s OK! Next time I promise to erase such a negative post, I usually do, but today I will let this one out.
I am sorry that you had to feel that way at such an inappropriate time GrandmaJ but it seems to be a going trend that others advice comes when we never ask for it and with so much ignorance. I hope you were still able to pay your respects with respect from everyone else that was not involved in that “helpful” conversation! Wishing you the best and love tour ability to find humor in it all! Sorry for my negativity but I truly am human.
What’s so horrible is that I used to be one of “those” people. I’m So ashamed, really, my arrogance! My rheumy said that if a certain food or diet was the cure that he would own a fruitstand instead of a medical practice. LOL. Some people just can’t comprehend and never will because they are blessed with good health even to spite bad choices. My husband kept worrying that I would be like a coworker’s wife who declined very quickly. Turns out she quit all of her Meds for diet and botanicals because they made her feel better. I guess that lasted until the disease had enough time to do real damage.
Hope4444… I Agree “arthritis” is grossly missused and misunderstood! The RA sufferers are trying to get “disease” added to their description, as in Rheumatoid Arthritis Disease. I Understand it, but I don’t think that will help them much with the average person???
Lyndsey, most of the time I just tell people I have an autoimmune disease. Even my Rheumy thinks the arthritis part is the least of my worries. Of course, if I was disclosing it in a job application and they asked about it, it would be “just arthritis” LOL