Same here, along with every DMARD, both alone and in combinations. Nothing helped until I met the biologic. Like you, my diet is well-balanced and “careful”. I do notice that a sugar binge cranks up the pain level a bit. And then it’s back on the wagon.
The only thing I’ve seen make a jot of difference to me is sugar. The sort you get in kid’s sweets/candy and in desserts, especially USA ones. If I avoid both I do so much better than if I don’t. If I succumb to either I certainly pay for it. Without thinking at a function recently, I ate a dessert of merangue, cream and fruit and spent the next day, in far too much pain. Interestingly I do like wine too with its sugars all nicely alcholised (much harder in my case to resist) and also do so much better if I don’t overindulge.
The only time I’ve been asked to get my blood tests redone is now for B12 and folate. Odd really as I do take a B12 vitamin supplement (have done for years, long before PsA) and am not taking mxt.
So I think a decent properly mixed ordinary good diet is something to aim for, exercise as much as is possible doesn’t just make your body feel better but certainly helps emotional balance and actually being kind to yourself also is frankly just necessary. Denying myself decent food, a glass of wine and not pushing myself to exercise just makes me so miserable on every level. So for me keeping all that in the right proportion is simply a no brainer.
I love that this thread has been picked up again - like seven months later! I look back at how I was in March, and am very, very thankful for Embrel! It has made a world of difference - not 100% but close enough! But I still cant get past the dietary stuff and the difference it might make. A few people have said that sugar, mainly the white stuff, has been detrimental - but why? I sometimes think my PsA is just my body yelling at me that something deeper is wrong. I am so thankful for the meds, but I am just not content with the idea of spending the next 20 years injecting myself (it took me 8 injections to pluck up the courage to do it myself!!). Anyone else feel this way?
Hi there, I think the simple answer to your question about sugar is that it promotes inflammation in the body. Additionally it’s basically a useless foodstuff as we get enough natural sugars in fruit and veg I think. I assume … or may have heard this somewhere reliably or not … that it takes a lot of energy to process and all for little or nothing in terms of nutrition. The way I see it our bodies have enough to cope with without having to deal with sugar. There again, just try keeping me away from a really good slab of chocolate cake! The ‘little of what you fancy’ idea works for me. Yeah, my body creaks at the seams if I eat sugary treats occasionally, but if something good happens in my brain’s pleasure centres I see it as a trade off.
I think having PsA is most definitely a sign that something fairly deep-seated is wrong with the immune system. That’s why I take the drugs, I don’t believe dietary changes alone will cut it. Food is fundamental to health for sure but I truly think there are very definite limits to what food alone can do once the immune system is well out of whack. I am pretty sure however that a good diet and a lot of exercise contribute greatly to making me feel really quite well a lot of the time.
I understand what you’re saying
…but I’ve come to grips with the fact that since Enbrel works so well for me I don’t mind injecting it once a week. Sure, it was never something I thought I’d do in a million years, but I agree with Sybil that diet and exercise alone just can’t “fix” our immune system or even do enough good to be able to stop injecting. What I wish is that research would come up with the answer as to WHY the autoimmune disease? If they only knew what caused it in the first place–it’s probably so preventable! I’ve heard that it’s in our DNA, but WHY is it in our DNA???
My doctor took me off a statin I was taking for high cholesterol because I had so many SEs. Boom, my LDL went up 100 points in 2 weeks! So, now I’m pretty much forced to try to lower my cholesterol through diet…I’ve nearly completely cut out sweets, lowered my intake of carbs (white bread, pasta, etc.) and I’m using Benecol spread (in place of butter) and Minute Maid Heartwise OJ – these two items have added plant sterols, which supposedly help lower cholesterol – plus eating more fruits and veggies and THINKING ABOUT (haven’t gotten as far as doing this) exercising.
It would be so much easier to not have to worry about any of the above, but it’s worth it to be healthy…just like the Enbrel injection is worth it to be healthy.
Trust me, nadia, over time and feeling 75 - 80% better than you had felt before Enbrel, you’ll hopefully be more accepting of it. And, who knows, maybe there will come a day when easier remedies are available–I don’t think they’ll come in the form of eating a lot of or eliminating a certain food, but I do think (hope) there will be more knowledge about why there are autoimmune diseases and how to stop them.
Yes I felt that way as well once. I explained how I was feeling to my dr. That on some level it was “my fault” or I was doing something to my body that I shouldn’t have to cause this to happen. He put it this way, with someone who is diabetic their pancreas is broken, we can’t fix that, so we use meds to combat it. With psa your immune system is broken, we are using meds to fix it. I know it’s not that simple but it made me feel better. Lol
Agreed. Absolutely. Well said.