New here and wondering about nutritional changes vs. meds

Symptoms & Treatments Complementary Therapies
41

Hi Jackie, Welcome.

I don't think you can put meds vs nutrition changes. The idea is to make sure you're getting the nutrients necessary to help with your tendons. For me, it's my tendons that contribute most of the pain. I didn't have a sore joint until recently. I've done some reading on this and found that for example Vitamin C is necessary for the body to make collagen which is apparently necessary to have healthy tendons. It's not going to make the pain go away but it can help. I realized when I was having a lot of pain that I used to drink 3 glasses of orange juice every day but had stopped drinking so much. The pain had increased. So I've started again drinking a few glasses a day and I've had some improvement. There are a few others, Vit D is another but can't remember the details.

You'll still need meds, we all will... but some things may help a little. The way I see it, it's worth a try. I hope you find meds that work, I really know what you mean, I have felt the same at times.

42

Before PsA I was diagnosed with Tendinitis several times since 2006. I would love to know more information if you could?

Dini said:

Hi Jackie, Welcome.

I don't think you can put meds vs nutrition changes. The idea is to make sure you're getting the nutrients necessary to help with your tendons. For me, it's my tendons that contribute most of the pain. I didn't have a sore joint until recently. I've done some reading on this and found that for example Vitamin C is necessary for the body to make collagen which is apparently necessary to have healthy tendons. It's not going to make the pain go away but it can help. I realized when I was having a lot of pain that I used to drink 3 glasses of orange juice every day but had stopped drinking so much. The pain had increased. So I've started again drinking a few glasses a day and I've had some improvement. There are a few others, Vit D is another but can't remember the details.

You'll still need meds, we all will... but some things may help a little. The way I see it, it's worth a try. I hope you find meds that work, I really know what you mean, I have felt the same at times.

43

What a great conversation!

I'm a huge believer that eating well (whole foods, organic when possible, minimal consumption of processed foods) can be incredibly beneficial for ANYONE and can do only good things for those of us living with psoriatic arthritis. I also believe that movement / exercise, taking care of mental health (depression/anxiety), and drug therapies have their places in treatment of the disease as well.

I'm on Remicade and my experience is this: it changed my life. I do have 1-4 days post-infusion when I feel like I have a hangover, but after that, my energy levels improve, inflammation goes down dramatically, and I am physically much better. I'm now hiking, something I LOVE, but haven't done in YEARS. I've put my canes, crutches and wheelchair away and haven't used them in months. It's been amazing. We're still tweaking timing and dosage (I now go every 6 weeks instead of 8 weeks and have recently increased my dose), and I'm hopeful that I can have more good weeks than bad.

Some things that can help with energy levels: balancing movement and rest; making sure you aren't deficient in B and D vitamins, and if you are, supplementing; getting outside at least once a day and taking in the sunshine; treating depression; clean eating (avoiding chemicals, artificial ingredients, food dyes, processed foods, pesticides, etc and eating foods as close to their natural state as possible); and doing something that feeds your spirit every day. :)

44

Let me suggest this site:

http://umm.edu/health/medical/altmed

its current, real research and legitimate IF you are interested in something real and evidence based.

There are actually some rules about alternative discussion here. We have been ignoring them a bit too much. I understand that will be changing.

People are welcome to say, "I had ___ and I tried ____," or "Ask your doctor about ___," but you can not to say in response to a question or post "Try ____."

You do not have the medical records of the people you may be advising, and it is irresponsible to ask people to try remedies (alternative or real) when you don't know or understand their full health history.

Alternative medicine really is like a religion to some, and there is often defensiveness. (lots of defensiveness) There is a point where discussion is no longer a discussion. That will be taken care of.

I am an academic. I can footnote every comment I make. The mistake I have made is I have treated every alternative as worthy of discussion and have presented the "real science" I realize some folks don't like how I do that or feel that it is condescending. It may be brusque, but I believe we are all adult enough that if we present something its likely someone may disagree and say say why. If you take that personally you will miss a lot of opportunities to learn. Understand I teach primarily teach post graduate students (including aspiring physicians) It had been thirty years since I have thought any debate/discussion was personal (except politics which i have no time for) If anyone takes anything I say personally, they are in error.

Please don't confuse discussions of diet, healthy eating etc as alternative medicine UNLESS you suggest them as such. That is on very shaky ground.

There are two new moderators coming here. Expect some changes. These are experienced folk who have been around to long, both who feel I have let to much go thinking debate is healthy and people will respond to "real" EVIDENCE BASED science.

This has been a great thread, I hope it stays active. A couple of others not so much

45

It's so interesting to read about your tendon problems. I, too, find that I often have issues related to tendons. I've had several trigger finger releases. I often feel pain along my legs and arms that never seemed to be in the joint. My husband is great at trying to rub away my pain and most often it's a tendon he says he's feeling at the spot where my pain is. I'll have to do some reading on this!

I guess I was hoping that if I could find an "anti-inflammatory diet" that I could avoid going on Remicade. When people hear you are starting infusion therapy, they have all kinds of suggestions about what you should be doing. But truth be told, healthy dietary changes will just benefit my overall well-being, even if it's not just about my arthritis.

Thanks!


Dini said:

Hi Jackie, Welcome.

I don't think you can put meds vs nutrition changes. The idea is to make sure you're getting the nutrients necessary to help with your tendons. For me, it's my tendons that contribute most of the pain. I didn't have a sore joint until recently. I've done some reading on this and found that for example Vitamin C is necessary for the body to make collagen which is apparently necessary to have healthy tendons. It's not going to make the pain go away but it can help. I realized when I was having a lot of pain that I used to drink 3 glasses of orange juice every day but had stopped drinking so much. The pain had increased. So I've started again drinking a few glasses a day and I've had some improvement. There are a few others, Vit D is another but can't remember the details.

You'll still need meds, we all will... but some things may help a little. The way I see it, it's worth a try. I hope you find meds that work, I really know what you mean, I have felt the same at times.

46

Nym,

So well put! It seems like a combination of many factors goes into living well with the disease. It's so interesting, but it really is just doing things that are good for everyone...with the exception of the Remicade, of course! Thanks for sharing your Remicade experience. I'm pretty terrified of it, to be honest. I am very med sensitive, can't tolerate much (not a single pain med that I can take). I used to feel miserable the day after my MTX injection and that's a big reason I went off it. Not psyched to read that some people have N/V with it and your 4 day hangover...ugh. There's so many times when I feel fine (well, except the fatigue). I don't always have pain. Often I have none. But then I have periods where it just travels from place to place in my body. Those times are miserable. But they are the exception, not the norm. Yet my inflammatory markers continue to climb. It's all so confusing!

In any case, it's such a relief to have a place to come and write where people speak the same language I do...you know? The language of inflammation and meds and what it feels like to live with this disease. However, I feel fortunate when I read how badly some others suffer.

I like your holistic approach. Mind, body, and soul. Yep...we all need that. I feel my soul with African drumming classes. This is also good for my mind. As is coming here now. And I'm working on the body.

Thank you! Must log off...storm's a coming!



nym said:

What a great conversation!

I'm a huge believer that eating well (whole foods, organic when possible, minimal consumption of processed foods) can be incredibly beneficial for ANYONE and can do only good things for those of us living with psoriatic arthritis. I also believe that movement / exercise, taking care of mental health (depression/anxiety), and drug therapies have their places in treatment of the disease as well.

I'm on Remicade and my experience is this: it changed my life. I do have 1-4 days post-infusion when I feel like I have a hangover, but after that, my energy levels improve, inflammation goes down dramatically, and I am physically much better. I'm now hiking, something I LOVE, but haven't done in YEARS. I've put my canes, crutches and wheelchair away and haven't used them in months. It's been amazing. We're still tweaking timing and dosage (I now go every 6 weeks instead of 8 weeks and have recently increased my dose), and I'm hopeful that I can have more good weeks than bad.

Some things that can help with energy levels: balancing movement and rest; making sure you aren't deficient in B and D vitamins, and if you are, supplementing; getting outside at least once a day and taking in the sunshine; treating depression; clean eating (avoiding chemicals, artificial ingredients, food dyes, processed foods, pesticides, etc and eating foods as close to their natural state as possible); and doing something that feeds your spirit every day. :)

47

Did I cross a line here? I'm confused! I'm not asking really about alternative therapies, I'm asking about nutritional support. I guess my original question did try to differentiate between using conventional medicine vs. nutritional healing. I guess I'm grasping and if I crossed a line I shouldn't have, being new here, I'll plead ignorance.

Thanks for the link, I'll have to check it out. I'm all for science backing up claims!

~jackie


tntlamb said:

Let me suggest this site:

http://umm.edu/health/medical/altmed

its current, real research and legitimate IF you are interested in something real and evidence based.

There are actually some rules about alternative discussion here. We have been ignoring them a bit too much. I understand that will be changing.

People are welcome to say, "I had ___ and I tried ____," or "Ask your doctor about ___," but you can not to say in response to a question or post "Try ____."

You do not have the medical records of the people you may be advising, and it is irresponsible to ask people to try remedies (alternative or real) when you don't know or understand their full health history.

Alternative medicine really is like a religion to some, and there is often defensiveness. (lots of defensiveness) There is a point where discussion is no longer a discussion. That will be taken care of.

I am an academic. I can footnote every comment I make. The mistake I have made is I have treated every alternative as worthy of discussion and have presented the "real science" I realize some folks don't like how I do that or feel that it is condescending. It may be brusque, but I believe we are all adult enough that if we present something its likely someone may disagree and say say why. If you take that personally you will miss a lot of opportunities to learn. Understand I teach primarily teach post graduate students (including aspiring physicians) It had been thirty years since I have thought any debate/discussion was personal (except politics which i have no time for) If anyone takes anything I say personally, they are in error.

Please don't confuse discussions of diet, healthy eating etc as alternative medicine UNLESS you suggest them as such. That is on very shaky ground.

There are two new moderators coming here. Expect some changes. These are experienced folk who have been around to long, both who feel I have let to much go thinking debate is healthy and people will respond to "real" EVIDENCE BASED science.

This has been a great thread, I hope it stays active. A couple of others not so much

48

Not at all. Its a very valuable discussion. It would be unusual not to hear several times a week"well meaning" soul suggest a simple easy cure for a disease for disesse is really you fault and everbody has ( hope you noticed the drippig sarcasm) If all someone had to do to get red of PsA was have a better attitude because everbody has grandmas fheumatism, and go gluten free and quit eating tomatoes, would anybody have PsA?

49

So are we allowed to continue this conversation about nutritional options? I can't take NSAIDS due to getting grastritis in the past from them. I work in direct care in group homes and I don't want to take anything that would suppress my immune system. I was trying to ask questions here because it felt like a good thread where I could get some ideas...

tntlamb said:

Not at all. Its a very valuable discussion. It would be unusual not to hear several times a week"well meaning" soul suggest a simple easy cure for a disease for disesse is really you fault and everbody has ( hope you noticed the drippig sarcasm) If all someone had to do to get red of PsA was have a better attitude because everbody has grandmas fheumatism, and go gluten free and quit eating tomatoes, would anybody have PsA?

50

I work with the elderly and have a small child and also worry about being immuno-compromised. I hear what you are saying. NSAIDs, not so great on those either. It's a rough road, so I'm going to throw in a whole bunch of healthy nutrients and see what that does! I was talking to a PT today who said it's amazing how many food allergies cause inflammation. Anyone have any thoughts on that?? She suggested getting tested for gluten intolerance, but been there, done that and was negative.

51

yes and I take Prilosec daily and Zantac before every meal and still get stomach pain from GERD. I have done a lot of PT. I have been back and forth with so many doctors. For the first time ever I am finally getting referred to a Rheumatologist and I have waited YEARS for this. At the same time I am worried he is just going to want to give me biological or systemic or dmard drugs. I have already been sick several times in the past year just from the first exposure to working in this field and my body is still getting used to all the different germs here. There are many things that cause inflammation and food is one them. I know when I drink beer the next day I feel the difference. Alcohol is a natural inflammatory. :)

JDT said:

I work with the elderly and have a small child and also worry about being immuno-compromised. I hear what you are saying. NSAIDs, not so great on those either. It's a rough road, so I'm going to throw in a whole bunch of healthy nutrients and see what that does! I was talking to a PT today who said it's amazing how many food allergies cause inflammation. Anyone have any thoughts on that?? She suggested getting tested for gluten intolerance, but been there, done that and was negative.

52

I worry a lot about becoming immuno compromised from the meds too. Although I think I am going to have to move on to MTX. The sulfasalazine has pretty much stopped working for me and my pain and inflammation markers are pretty high. I think good nutrition is one of the best ways to help boost immunity and to help keep from getting sick.

53

Please do not let fear of being immunocompromised stop you from taking biologic drugs or DMARDS if that is what your doctor has recommended for you. This is the only proven way to stop the inevitable damage caused by PsA. Choosing diet over medication will cause serious, long term and permanent effects from PsA, and it sounds like some contributors to this thread are doing just that. (I think that this is where the moderator is having an issue).

A little about me, I have had PsA diagnosed since June of 2011, but have had symptoms for much longer than that. I was diagnosed with psoriasis when I was 15, and I have had pain since I was in grade school (I am now 35). I am on my second biologic and I take MTX by injection weekly. I have irreparable damage to several joints in my hands, my right knee and hip due to years of no treatment (I was always treated like I was making up "stories" when I was a kid). I have been on an anti-inflammatory diet for years due to IBS. No gluten, no dairy, no red meat, certain veggies and fruits are also out, along with grown up drinks. This diet is wonderful for my IBS symptoms. I have never felt so "normal" in my life as I do when I am good and eat what I should. However, I was diagnosed with PsA even though I am on my special diet, and I have joint damage as well.

I will not deny that there is anecdotal evidence that people have relief of symptoms when they are on anti inflammatory diets. But there is no hard data to back this up. Whether these people were going into remission anyway or their meds started working, or it was the diet change; at this point its anyone's guess.

Those of us who are using medication to get well are doing so because it is the only method that is actually, "evidence based practice". As in, the medical community has actual documented and verified evidence that it works.

We all understand that there is a period of denial that everyone goes through when they are diagnosed with and then learn the treatments for this disease. I'm fairly certain that a great many of us have hit the health food store and picked up every supplement that was listed as having anti inflammatory or anti arthritic properties (I know I did). I wish I had someone to talk to me straight and tell me the realities of PsA. I already knew them, but I needed someone to snap me out of my own denial. It certainly would have saved me money, time and hope.

I want to sum up by reiterating; Biologic drugs and DMARDS are the only proven treatments for PsA. Of course, any medical plan works best when the patient is otherwise healthy and a balanced diet is a great way to maintain overall health. Diet may help with symptoms of PsA, but it will not prevent joint damage.

I hope I was gentle; goodness knows I tried.

54

This is often a very touchy subject for people with differing points of view on the subject. Please take from each response what works for you and leave the rest. We all have different experiences with our disease, different information from which we're working, and different points of view as to what we do and do not want to put into our bodies.

I, personally, have gone through dietary changes (going gluten-free, not eating processed foods, food dyes, etc. etc. etc, eating organic/humane food), homeopathic treatments, massage, acupuncture, and other therapies to try to manage my psoriatic arthritis. While I did see improvements in my health, my disease continued to progress and do irreversible damage. The only medication I'd taken for years was thyroid medication, and I was hoping to avoid taking meds if I could.

I am now on Remicade. The decision to go on a biologic came with reading a lot of (evidence-based) research, discussion with my rheumatologist, and realizing the severity of my disease in my body at the time. Had I gone into remission simply from dietary changes, I would most likely not have opted to take biologics. We know that I've had PsA for many years, and went into remission with each pregnancy (I have five kids), so I am familiar with what remission feels like, and I know that I'm so far from that place that meds are necessary.

In my opinion, if people want to explore dietary changes and/or alternative therapies before going on medication, then they should. All dietary changes associated with reducing inflammation are healthy ones, so no harm is done there. At the very least, the person will learn whether or not these changes are effective in managing their disease. I'd think if the person experienced an increase in symptoms or saw active damage, they would reconsider and discuss drug therapies with their doctor.

As with any diagnosis, there is a learning process that follows. That people are asking questions here about their overall health and nutrition's role in living with psoriatic arthritis is wonderful. I think we all need to keep in mind that how we each treat our disease is a choice, and this is a place for us to share information and experiences and our own choices, not a place to insist that our choice is the right choice for everyone or that everyone should follow the same path toward wellness.

55

I want to make it clear that I am not insisting that everyone follow my choice. I find it frightening that a lot of this talk is occurring, and I have feeling that much of it is based on misinformation. If anyone is able to find even some help with symptoms due to dietary changes; that's great. If it works and does no harm; keep on doing what works as long as it is in conjunction with a plan that you have discussed with your physician. My very sincere concern is that folks who are new to PsA may choose diet as a completely alternative and independent treatment with no MD involved. I don't want anyone to suffer needlesly due to incorrect or incomplete information. I would not have made a comment had I not seen more of this in recent posts.

As long as there are good comments like yours to provide good information, I'm a happy camper, indeed. I haven't seen a lot of that, and so far no one has recommended asking a doctor about any of it yet. I am concerned with the safety of others.

nym said:

This is often a very touchy subject for people with differing points of view on the subject. Please take from each response what works for you and leave the rest. We all have different experiences with our disease, different information from which we're working, and different points of view as to what we do and do not want to put into our bodies.

I, personally, have gone through dietary changes (going gluten-free, not eating processed foods, food dyes, etc. etc. etc, eating organic/humane food), homeopathic treatments, massage, acupuncture, and other therapies to try to manage my psoriatic arthritis. While I did see improvements in my health, my disease continued to progress and do irreversible damage. The only medication I'd taken for years was thyroid medication, and I was hoping to avoid taking meds if I could.

I am now on Remicade. The decision to go on a biologic came with reading a lot of (evidence-based) research, discussion with my rheumatologist, and realizing the severity of my disease in my body at the time. Had I gone into remission simply from dietary changes, I would most likely not have opted to take biologics. We know that I've had PsA for many years, and went into remission with each pregnancy (I have five kids), so I am familiar with what remission feels like, and I know that I'm so far from that place that meds are necessary.

In my opinion, if people want to explore dietary changes and/or alternative therapies before going on medication, then they should. All dietary changes associated with reducing inflammation are healthy ones, so no harm is done there. At the very least, the person will learn whether or not these changes are effective in managing their disease. I'd think if the person experienced an increase in symptoms or saw active damage, they would reconsider and discuss drug therapies with their doctor.

As with any diagnosis, there is a learning process that follows. That people are asking questions here about their overall health and nutrition's role in living with psoriatic arthritis is wonderful. I think we all need to keep in mind that how we each treat our disease is a choice, and this is a place for us to share information and experiences and our own choices, not a place to insist that our choice is the right choice for everyone or that everyone should follow the same path toward wellness.

56

For those who are concerned about being immunocompromised with the biologics and DMARDS, there are really simple things that you can do to help protect yourself from infection.

  • Hand Hygiene. I know that everyone already knows this, but good hand hygiene is the best method for preventing the spread of infection. Make sure that you are washing your hands correctly. Use a soap that forms a nice lather, make sure to wash under your fingernails and around jewelry. Rub your hands together under running water for 20 seconds, and then rinse. Grab a towel and use it to dry your hands, then use it to turn off the faucet and open the bathroom door.
  • Get your flu vaccine(Every year) and pneumonia vaccine (Every 5 years). Make sure your latest tetanus booster is current.
  • Wear a mask. During cold and flu season, wear a mask when visiting your doctor's office. Anytime you are in an environment where you are uncomfortable about germs, stick a mask on. I have worn mine at home when my boys got the flu last year.
  • Teach others hand hygiene and cough hygiene. Are you a teacher, do you work with people of any age, are you a parent, do you have family and friends? Teach others how to properly wash their hands. Tell them to sing the birthday song or "Mary had a Little Lamb" 2 times to make sure its been a 20 second hand washing. Teach them to cough into the fold of their elbow and turn away from others. Have tissues ready at your workspace in case visitors have an uncontrollable sneeze.Teach people when it is necessary to wash their hands.
  • Keep any open wounds washed with soap and water (or as directed by your doc). Keep them covered and use an antibiotic spray or cream.
  • Minimize your personal stress.
  • Always remember to feed yourself with a good variety of healthy foods and get plenty of rest so that your body has plenty of energy to fight infections.
  • You can always wipe down surfaces with disinfectant wipes before using public objects or use a barrier such as a tissue to touch these surfaces.

You might find that you do A LOT of these when initially starting biologics or DMARDS. If you find that you don't get sick very often, you might stop doing some of these things altogether. This was my plan when I started these meds, and I haven't even had a cold in the last 3-4 years. (Knocking on wood!)

57

Hi, Butter,

Welcome to our site! I hope you get some good information here. For your question, I am replying with a question. Do you have pain that is focused in the joints? Do you ever have any issues with your hands or feet or any of the joints in them? If you describe some of these symptoms, I would be happy to help you the best that I can.

PINKI said:



butter said:

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

58

And there you have it. The overbearing overlyfrank paternalistic lamb approach. "hit this disease with everything you can as hard as you can as early as you can or you will have permanent irreversable damage and pain. You have the Grumpy approach Well reasoned medical information with a logical twist but the same conclusion. Use the meds or you will have permanent damage. Then you have Nyms new age approach everything is cool explore your options. It isn't until the next morning you realize why she is such a great mom and her community looks to her for mom advice. In all of that warmness it isn't until later you get what she is saying. "do all the other stuff if you want, but while you are doing it the damage is occuring."

In one thread you have a dad with woodshed open for business, the kind but firm high school counselor and the warm cuddly mom. (PRETTY MUCH the three personalities in this forum) But there is only one inescapable conclusion and you will hear it over and over and it came from departed friend. (this is an ugly disease) Fear the disease not the meds.

Do what you are comfortable doing just take your meds before you do it.

59

Most excellent reply Lamb, and EXACTLY what I need to hear. Iā€™ve seen what naively going off meds for a year has done to my wrist. When my doctor said I have ā€œmoderate to severe diseaseā€ I was shocked and confused. A lot of time I have no pain, Iā€™m funtional, sometimes I even forget I have this disease. He said we donā€™t want to wait until my function is impaired because then itā€™s too late. That made a lot of sense to me. Being asymptomatic for so long after living in miserable pain for so long helped perpetuate my denial. I guess a wrist of erosions cannot be denied. I guess a climbing SED rate even on Humira cannot be denied, I guess I live in fear of not tolerating Remicade because Iā€™ve failed on so many meds and can tolerate so little.



I started this thread seeking answers about meds vs. nutrition and I have definitely gotten my answers! Iā€™m going to do both. And feed my spirit/soul as well as try to find ways to add in some exercise. Iā€™m aiming for the holistic approach here, Iā€™m done being passive!



Soā€¦now to figure out where my personality fits in around here! :slight_smile:

60

Jackie

I am new here and just read your post, here is the way I look at it, there is some inflammation that is caused by the disease and other inflammation that is caused by other factors such as bad diet, over weight, lack of exercise. Now you'll never know how much of the symptoms and the pain is due to the disease until you eliminate the other causes. Then you can determine which methods work best for you to treat the disease. \

hope this helps

nick