New here and wondering about nutritional changes vs. meds

Symptoms & Treatments Complementary Therapies
1

Hi everyone,

I'm so glad to have found this forum. I've been living with what I've generically referred to as "inflammatory arthritis" for years now, diagnosed in 2007, but likely present for a couple of years prior to actually getting a diagnosis.

The first rheumatologist I went to referred to it as an "undifferentiated serum negative spondyloarhtropathy"....huh?? I felt like I didn't fit into any category and therefore couldn't find any support. I was found to have severe disease based on x-ray of my left wrist which showed significant erosions. I was started on Sulfasalazine, which I was taken off of after a couple of months due to side effects. Then came the methotrexate, started on pills and then switched to one shot per week. This worked beautifully, coupled with a drug called Salsalate which I never see anyone mentioning. My symptoms went away and I lived well for a while, until I started with feeling like I lost a day of my life every week after my MTX shot. I felt nauseated and exhausted and useless. So after a while I went off the MTX and then when the Salsalate prescription ran out, I went off that too. I remained symptom free for several years on no meds.

I then decided I needed to switch Rheumatologists as I was driving an hour to see the one I was seeing and wanted a fresh set of eyes on my situation. I went ot the new guy, he diagnosed me with PsA despite having no psoriasis (my mother has severe psoriasis) my inflammatory markers were all elevated and he said I needed meds to prevent further damage. New x-ray of wrist showed severe osteoporosis, worsened since the prior x-ray. SO, back on a lower dose of oral MTX due to being asymptomatic. Well...then I had an allergic reaction to MTX! After being on it for years, apparently going off it and back on caused my body to reject it.

Then I tried Arava. Bad reaction to that, became short of breath. Off Arava. Then I tried Humira. I was on Humira for several months miraculously with no side effects...however, I started to have symptoms of severe pain traveling from joint to joint after years of feeling like I was fine. New labs showed inflammatory markers through the roof. Bye bye to Humira...useless drug for me.

SO, now the next course of action is we're waiting to get approval for Remicade. I feel like I'm jumping from one poison to another and keep running up against people saying I should try to make nutritional changes. So I'm curious how other people eat.

I could stand to make nutritional changes anyway, I have weight to lose and have also had Type I diabetes for over 34 years so my blood sugars could benefit. I'm just wondering if nutritional changes can be enough and if I should ask my Rheumatologist to give me some time to see if some sort of anti-inlammatory diet can work before starting the Remicade??

Okay, wow, that turned out to be really, really long. To anyone who has read this...thank you! I'd love to hear from others about what works for them.

Be well...

~jackie

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Welcome! It sounds like nutritional changes are a good idea, and will help to support your overall goals of better health and weight loss. But it won't be enough to slow down damage. You were lucky that you had a remission, but it sounds like it wasn't a perfect one. . . You had few symptoms, but still had damage?

With the biologics, don't be surprised if they try out a DMARD again with this, even if it's just a low dose. It seems to lengthen their useful life.

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It seems like the what the basic thoughts are to eat whole foods...things that are basically from nature? Does this sound like the best approach re: inflammation? I've read mixed reviews on dairy. I don't eat meat, so I guess nuts and beans and fish are the way to go?

I hate the idea of needing a DMARD AND a biologic. I had my shoulder injected on Thursday and I'm back to feeling functional. I also started on a new NSAID, but I'm hoping to cut that out too as soon as the shoulder feels totally back to normal. I really hate taking all these meds!

I'm taking 9 pills a day plus my insulin at this point. I work with the elderly and sometimes I feel older than them even though I'm only 44!

Can I count on Remicade to provide any help with fatigue? I am out of energy by the time I get home and I have a 6 1/2 year old at home that needs me to be a little more energetic!!

Thanks!
~jackie

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Hi Jackie, I've had Psa for 18 years or so. Never been on meds. Well, I lost a ton of weight and now at an excellent weight for my height. Last January, went not only gluten-free but all grains free. And believe it or not, I'm now training (hiking and biking) every other day to get in shape for a 200 km hike over in Spain in September. I eat all whole foods, etc. Sounds good, doesn't it? Unfortunately both the joint pain and psoriasis haven't eased up despite all this. I'm having a flare-up I guess. I mean, it's not that bad but I'm in pain most days. Both my hips, a joint in my foot (above the toe), my right elbow and 1 finger are giving me lots of trouble and have since before Christmas. Just got home from a hike and had to take some Advil, which sometimes works. But generally speaking, I feel great. The wheat-free diet has certainly helped or rather eliminated other issues so I won't ever go back to eating that. I have cheated, eating a piece of bread, and suffer for days. I have a lot more energy and generally feel great, if it wasn't for the joint pain.

I don't want to discourage you at all. Make all those health changes: it will be worth it in the long run. And you don't need other health issues when dealing with PsA. Fix what you can. As I said, other the joint pain, I have never felt or even looked better. Exercise is essential I believe, no matter how bad you feel...if you can't do much, gentle stretching will help.

Good luck,

Lynn

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I feel that diet and medication go hand in hand. The diet will help most of it, but to protect further damage the medication is needed. I keep a very clean diet all meat in our diet is family raised. When shopping I stick to the outside wall with only a few packaged items. I eat breads but the sprouted grain variety.
I feel the best when I keep up my workouts, it keeps the fatigue and tight tendons at bay which cuts out most of my pain. I still have flares but they are so much better.

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Shutterbug nailed it. Healthy people have PsA and unhealthy people have PsA. Its better to be healthy. The thing I constantly try to get across is people can have mild disease and have very severe symptoms. People can also have very severe disease and very mild symptoms. You can get lulled into a false sense of security because of symptoms. I want to pull my hair out when I hear exercise mdae no difference for me. They fail to remember this is a PROGRESSIVE disease. what you lose you don't get back. Keeping what you have got is a victory. I hear the same thing about meds. XXXX isn't working. If you spend some time aroind here, you will find more often than you think another statement. XXXX wasn't working until I quit tsking it, I can't believe the difference it was making.

Sorry you have to be on this journey JDT. just remeber no matter HOW you feel the disesse is still there. Never stopp fighting it.

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Hi
I have inflammatory owed disease which causes a type of arthritis & psoratsis which also causes arthritis since age of 14 yrs

I live in Uk & we can only try drugs if our consultant agrees we need them
I was on steroids for yrs which kept bowels plus arthritis at bay sort of
Had surgery for bowels came of steroids & was crippled with arthritis couldn’t move without assistance
I started Methro side affects were terrible but it did help
I too have tried loads of drugs over the yrs changed consultant and had several ops
My feet are terrible but the best thing I did was too have special boots mad as ankles both worn out the difference is amazing I still walk slowing with 2 sticks but my shoes no longer rub they support my feet & prevent people stepping on them they have a long lasting sole with a soft top leather surrounds & special support for my ankles
I can now walk again still in pain but on my own two feet
I would recommend this boot to anyon with painful feet or ankles my consultant organised this for me it wasn’t free but the ordotics department were great I have insoles as well
Think about good foot ware as it helps other joints
Have to go asits late in UK

Will chat again soon x

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Hi,Stick to a fat free diet including lots of cherries and green vegetables(look into anti inflammatory diets which all say the same thing pretty much)The diet alone will greatly reduce the inflammatory response but you really have do some research and get into healing with earthing(grounding products).Buy a grounding bed sheet and heal your inflammation while you sleep with NO DRUGS.I have healed my condition to the point where I REALLY notice my condition worsens when I slip and eat too much of the things that really trigger my inflammation(like junk food,beer) so I do it as a treat but not very often.I am in pain still but it is bearable and dwelling on it only makes it worse,befriend your illness which will lead to less stress. Extra stress can REALLY bring on an increase in my symptoms so when I am feeling at my best so is my buddy,PSA..Everything in life happens for a reason just like my response to you,(I don't respond to many of these blogs).The grounding sheet has been a miracle for me but I went one step further and sleep with a grounding pad around my head along with the bed sheet.I have NEVER slept so good and deeply and wake up in the morning felling like I have had regenerative sleep.Sleep is the problem with most with psa,toss and turn all night in pain waking up exhausted,those days are long gone for me,I wake up groggy(like Im in a deep fog sleeping so deeply that I cant remember any dreams) and within 10 to 15 minutes of wake time I am RARING to go for the rest of the day.I feel like I am a different person a lot more grounded,things dont bug me like i use to let them. Sure Im still stiff and sore most times but I am working as a mechanic in a mill doing a very tough job and managing very well.Good luck with your condition in the end it could be a blessing with your life,change your approach and you will be on the right track.MB

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I was watching a Science show on TV which had a segment on research being undertaken at the Uni of Adelaide, here in Australia, on bacterial changes in humans since we were hunter gatherers. We harbour a huge amount of bacteria that strongly affect how our bodies function.The researchers have extracted bacteria dna from the tartar on teeth taken from the remains of humans from periods since then.

Our bacteria make up has changed dramatically and the time of the move to farming from hunting gathering shows a huge change. The health of our teeth alone showed a marked deterioration at this time.

I know that not eating processed food and particularly sugar does make a difference to my PsA.

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I removed glutton from my diet, but I love bread. My hands hurt so much the next day after I eat bread. Changing your diet will not hurt, read about foods that help fight inflammation . Welcome and good luck.

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HI JDT:

I am new to this discussion group (I"ll post my story soon) but what you've written resonated with me. I have PSA (diagnosed 4 months ago). It has taken away my ability to walk farther than 100 m - largely due to the inflammation in my legs; along with other parts of my body. I have been taking sulphasalazine and getting some mild relief. I have MMX in my purse -- I got the prescription a few days ago -- but I've been reluctant to open it - I've heard too many stories and know about too many side effects. Other than PSA I am healthy and have been for 52 years. I am tempted to go on MMX and think it's just a matter of time -- currently I'm doing a fast. I am thinking of going off gluten. I've also heard that the paleo diet has worked for some PSA "victims" Given that it's summer - I live in the north - and that fresh fruit and vegetables as well as good meat are available, this might be worth a try. I also noticed someone mentioned cherries - my mother, who also has PSA greatly reduced inflammation by eating cherries. If others have feedback on this post, I'd appreciate it.

1 Like
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I make a smoothie with flax seed, spinach, protein powder , frozen cherries , and another fruit. Today I walked 8 miles and my fatigue is gone. Cutting out bread was hard but I feel so much better.

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Hi all,

Some very interesting reading. I have had psoriasis since 1959 and ten years ago my body began aching. I have seen many specialists who tell me that I have polyneuropathy and fibromyalgia or so they think..I did mention my psoriasis but none have linked me up with psoriasis and arthritis or anything else. I have three bulging discs lower back and now have pain constantly from my lower back to hips, legs, thighs, knees, calves and feet. It is never in one place and roams ..polyneuropathy. That is about it...I am on many meds but never out of pain...I cannot walk very far, less than 100 yards and if I over do it with walking or any kind of excitement, the next day my pain is worse. I would like to confirm that I either have psa but how do I do it. Is it possible to have three things, polyneuropathy, fibromyalgia and psa. My doctors have given up on me and now it is just meds that do little but help some. Any help would be appreciated.

Butter

14

Hi Jackie

Humira etc are not going to work. Only Methotrexate and Aciclofenac gives some relief from pain and swelling. My CRP remains between 35 to 40 and I have learned to live with this disorder that has affected my knees, fingers and ofcourse pain in all my bones.

I keep myself away from Alcohol, Red meat and keep myself wrapped with blanket while AC is on in y bedroom during nights.

We all have to learn to brave this disease that does not have any treatment as on date.

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Thanks, Lynn! It's so interesting to me that you feel so well despite still having pain. I'm sure a healthier way of eating would boost my energy level, for sure. I'm just so tired all the time, even when I'm not in pain. Thanks for sharing your experience and good luck with your hike!

~jackie

maplegirl said:

Hi Jackie, I've had Psa for 18 years or so. Never been on meds. Well, I lost a ton of weight and now at an excellent weight for my height. Last January, went not only gluten-free but all grains free. And believe it or not, I'm now training (hiking and biking) every other day to get in shape for a 200 km hike over in Spain in September. I eat all whole foods, etc. Sounds good, doesn't it? Unfortunately both the joint pain and psoriasis haven't eased up despite all this. I'm having a flare-up I guess. I mean, it's not that bad but I'm in pain most days. Both my hips, a joint in my foot (above the toe), my right elbow and 1 finger are giving me lots of trouble and have since before Christmas. Just got home from a hike and had to take some Advil, which sometimes works. But generally speaking, I feel great. The wheat-free diet has certainly helped or rather eliminated other issues so I won't ever go back to eating that. I have cheated, eating a piece of bread, and suffer for days. I have a lot more energy and generally feel great, if it wasn't for the joint pain.

I don't want to discourage you at all. Make all those health changes: it will be worth it in the long run. And you don't need other health issues when dealing with PsA. Fix what you can. As I said, other the joint pain, I have never felt or even looked better. Exercise is essential I believe, no matter how bad you feel...if you can't do much, gentle stretching will help.

Good luck,

Lynn

16

Thanks Shutterbug...I haven't been able to incorporate exercise, but am going to move in that direction. I know that I'll feel better in terms of energy, but live in fear of what my joints will feel like! The Ezekial bread is okay? I have a hard time fathoming giving up all grains. What about quinoa? How do you feel about dairy? I've read mixed reviews. Thanks!!

Shutterbug said:

I feel that diet and medication go hand in hand. The diet will help most of it, but to protect further damage the medication is needed. I keep a very clean diet all meat in our diet is family raised. When shopping I stick to the outside wall with only a few packaged items. I eat breads but the sprouted grain variety.
I feel the best when I keep up my workouts, it keeps the fatigue and tight tendons at bay which cuts out most of my pain. I still have flares but they are so much better.
17

Hi Jackie,

All of the studies I’ve seen, and my experience would suggest you need to strongly consider both - meds and diet - at the same time, particularly if your disease is severe.

Certainly I wasn’t able to get my severe symptoms (hopefully not severe disease) under control without biologics (I’m not clear what pinki is referring to as there are many studies that show them to be effective for many people - though not all).

I’ve always had a pretty good diet, but since PsA find myself craving “good” foods, such as blueberries, strawberries and cherries. There is plenty of information out there - even some they’ve done preliminary trials with - such as turmeric.

The simplest advice I ever got was that if it has more than 4 ingredients on the label, or anything you can’t pronounce, don’t eat it. That certainly leads to a raw food lifestyle which improves lots of facets of your health.

It’s interesting to see recent research that certain types of fat cells actually generate extra TNF, one of the substances that seems to run around causing bone erosions and joint deterioration - so losing weight if you are carrying extra would likely be a major improvement.

Good luck, blueberry cravings are much nicer than deep-fried cravings!

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Hi J. I have had PsA for for around 30 years (I am 47 now but keep that under your hat ) my heart felt advice to you is listen to your body. What works for one person may not for another, and that includes meds, diet and exercise. I live in Scotland which has a damp climate most of the time (I think) so this seems to have a bearing on my pain. I eat well, and have a good diet but I still eat cakes. I do yoga and I horse ride but if I cannot do any of these due to pain then I just think 'oh well, not today'. A good mental attitude is a bonus too so I wish you luck on your journey and many pain free days my friend

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The bad thing about remicade is it tends to make people sick. For me I was sick three weeks out of the four, I only had one week where I was not sick. Just a heads up that one of the side effects for remicade is nausea and vomiting.

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I have found that eating healthier does help. I can definitely feel a difference in the way I feel on the days I don't eat well. You should also try to add some exercise. I'm like you, I have PSA, but I have very minimal psoriasis patches, so my doctor recommended swimming. I try and go at least a few times a week, even if it's only for a half hour, I feel a lot better. I have also started stretching out before bed based on an article I read online. I figured it couldn't hurt to try it, and I actually wake up less at night now. Good luck to you.