Hi Lamb....I see where you are coming from, however I can't completely agree with you. Meds are absolutely important in helping keep the inflammation down, if the meds work. According to the facts the only meds that can possible stop the damage are Bio's and there is no cure so...really is there anything that stops this disease? Dmards can help keep inflammation down, but so far for me there has been no luck. The side effects sometimes out weigh the benefits of a med's if that's the case then move on to another.
I believe diet also contributes to maintaining a healthy body and can actually help! I'm not sure anyone is looking at becoming bulimic or anorexic and I can tell you that I have never had any big issues with nutrition prior to taking meds. Eating a healthy diet certainly helps! Just like maintaining your weight and exercise( keep moving) helps!
tntlamb said:
Lets bring some reality okay. There is absoluley no question that extreme diets will make you feel better - for while. When essential nutrients are removed (juiced veggies have less nutrition than whole or cooked veggies) you body goes into a different state which provides natural pain control. There is a reason why hospice providers don't force food or drink on the dying. A quick study of either bulimia or anorexia will teach you that these folk don't get that way because they like losing weight but because either condition cause a natural high that falls short of a drug high.
Back in the late sixties I jumped out of an airplane with sole purpose of killing some folks living in a jungle. Needless to say they hsd a different idea. So with a bit of difficulty and a big hurt, I made it to our extraction point. I made it beacuse evertime the pain became extreme, I forced my self to vomit, as I was trained to do. It was as effective as the morphine I didn't have enough of. Starvation hss the same effect.
There are a ton of things that can make you feel better. For awhile. Every bulimic anorexic, and addict I have ever known die from it. There is not one damn thing the wholistic approach can do to stop the disease. Sooner or latter when the diets, mumbo jumbo, and other assorted crap people grab onto instead of dealing with you diseas runs out and your only option becomes pain management. Pain management of course being medicall managed addiction. No matter how well managed your tolerence increases and it quits working and you either live in total pain or you surrender your entire life to the narcos and die.
The choice is really pretty clear you learn to understand you have a disease that you can have a measure of control over taking you meds, keeping moving, and eating and living healthy OR you can lookk for a quick fix, live in denial of, and slowly give the disease control of everything in your life.
You are not the first person who has thrown up fro MTX nor will you be the last. You can continue to sit on the pity pot and give up more and more of your life OR you can say oh sh**, that didn't work whats next doc? >
I said extreme diet......... Sadly we have an entirely new group of quacks out there calling themselves "nutritionists" No raianing, no licensing, etc etc pushing some type of agenda. We see these folks hanging out their shingles in all types of places from weight loss centers to chiropractors. Theses diets lack essential nutrition ( which can not be replaced by "supplements") We see people often surviving on 900 calories a day and still so fat they stand in line at walmart for the electric carts.. Their natural metabolisms have been so screwed up because the body is convinced its starving, they may never be normal again. Short term the natural endorphin production which is preparing them for death makes them feel good.
Inflammation is but one part of this disease. Not even the biggest part. It can be totally controlled and severe damage will continue to occur. The classic Pencil in a cup joints we see in x-rays are caused by erosion not inflammation. Yet the pain is excruciating and permanant. DMARDS are effective. Incidentally PsA is marked by LACK of inflammatory markers. There is no inflammation according to all blood work. Anti inflammatory diets are but wishful thinking and great marketing. The Paleo is the worst of all. It eliminates whole food groups that do have a positive effect. http://www.huffingtonpost.com/2012/09/20/paleo-diet-healthy_n_18985... There isn't a shred of evidrnce or support from dieticians.
ELiminating foods that one has demonstrated sensitivities to is one thing. Substituting hype for real science is another. Really Tara the is little diference in eliminating necessary nutrients an Bulimea/anorexia. The largest challenge for any vegan diet is adequete protein sources. Its a bit simpler with vegetsrian diets. Anthing extreme is amost always harmful.
DMARDS and BIOs accomplish the same thing with different mechanisms..
I was BTW referring to the EXTREME diets and this latest juicing fad.The first one I recall was back in the 80's. You think we would all be cured by now.
Nym, Your reaction concerns me. Next time you infuse make sure you insist that they use the manufacturer rate starting at 10ml x 10 min then 20 then 40 then 80 then 150 for 30 minutes then 250 until completed. There is a tendency in many infusion centers to just set it at 250 or try to get it as close to 2 hours as possible without the steps. They are under the assumption that the step rate is to monitor for more severe reactions. Its not (entirely) it is to avoid the "morning sickness" and somehow prime the body to make more immediate use of the medication. Even the best infusion nurses want to "get 'er done"
I just wanted to chime in that I am not on a juice fast ( I weigh 150lbs and was a long distance runner before getting PsA so weight is not an issue).
I juice everyday to add micronutrients to my diet which are really helpful in keeping colds at bay and getting extra vitamins over the winter months. I also stay away as much as possible from dairy, gluten and alcohol, all which are proven to cause inflammation in the body. Basically staying clear of MSGs and processed food can really help. I'm not saying by any stretch that ditching meds is the way forward, in fact far from it. In my case, diet is helping - I imagine I will be on some kind of meds for the long term but wanted to give the natural approach a chance at the very least.
In my case, while on MTX my inflammatory markers nearly doubled after 10 weeks, so while it works for some, it didn't work for me unfortunately. It seems that the docs are eager to put everyone on MTX first and then try other dmards - for ref see
Lamb.. this makes sense. First, PSA tends to cause less pain then RA, yet there still may be inflammation we are not aware of. The tests come back as normal, however I can actually feel inflammation in the areas in which my body has any increase. I understand this and from what they know thus far the damage is caused by persistent untreated inflammation. I agree Extreme diets don't work, life style changes do. Any dietary changes that are too restrictive are setting one up for failure, however being aware of eating healthy good nutritious foods can make a world of difference, both in energy and for any digestive issues.
As far as our vegan diet (I agree vegetarian is easier) we are aware of the possibilities of lacking nutrients so consciously add additions that have B12 (nutritional yeast and almond milk fortified) along with a balanced diet of veggies and fruit that contain iron and all the other vitamins needed. Our grains are all gluten free and most are made at home. We already ate limited meat, so this was not a drastic change for us. The biggest change was dropping coffee and switching to green tea :-) My husband will continue to eat meat down the road, however it will only be grain fed local meat.
Now...back to meds. I agree they are an important part of keeping this disease in check. I know the journey of finding the right med can be a long one, along with understanding this disease. For me and probably most, quality of life is a huge part of why we start the meds. If a med is not providing that quality of life then it's time to move on. First thing is....in order to really know if a med is going to work we need to give it a fair trail of at least 3 months(unless there are complications). During this trial time, it's important to work with your doctor and/or rheumy to adjust and deal with any issues that may arise. I made it 7 months on the MTX, I figure that was a fair trial period.
tntlamb said:
I said extreme diet......... Sadly we have an entirely new group of quacks out there calling themselves "nutritionists" No raianing, no licensing, etc etc pushing some type of agenda. We see these folks hanging out their shingles in all types of places from weight loss centers to chiropractors. Theses diets lack essential nutrition ( which can not be replaced by "supplements") We see people often surviving on 900 calories a day and still so fat they stand in line at walmart for the electric carts.. Their natural metabolisms have been so screwed up because the body is convinced its starving, they may never be normal again. Short term the natural endorphin production which is preparing them for death makes them feel good.
Inflammation is but one part of this disease. Not even the biggest part. It can be totally controlled and severe damage will continue to occur. The classic Pencil in a cup joints we see in x-rays are caused by erosion not inflammation. Yet the pain is excruciating and permanant. DMARDS are effective. Incidentally PsA is marked by LACK of inflammatory markers. There is no inflammation according to all blood work. Anti inflammatory diets are but wishful thinking and great marketing. The Paleo is the worst of all. It eliminates whole food groups that do have a positive effect. http://www.huffingtonpost.com/2012/09/20/paleo-diet-healthy_n_18985... There isn't a shred of evidrnce or support from dieticians.
ELiminating foods that one has demonstrated sensitivities to is one thing. Substituting hype for real science is another. Really Tara the is little diference in eliminating necessary nutrients an Bulimea/anorexia. The largest challenge for any vegan diet is adequete protein sources. Its a bit simpler with vegetsrian diets. Anthing extreme is amost always harmful.
DMARDS and BIOs accomplish the same thing with different mechanisms..
Synovitis is not a common effect of PsA. It is with RA. The researchers claiming the MTX did not have a Disease modifying effect because of the lack of effect on Synovitis not to mention their very poorly constructed study makes their study mean little. They in fact really look quite foolish to anyone who knows how PsA and RA differ.Extra-articular features such as synovitis are occasionally observed but have no part of the CASPAR criteria. In fact the lack of of synovitis was what made PsA a seperate DX back in 1968.
Its really quite simple. The DMARDs work for millions of people. Thats why they are used. If they don't work, we try something else. We don't abandon treatment.
Even the authors of this "study" didn't draw any conclusions, but the wackadoos have been all over it anyway. I'm all for self study and knowledge about the disease. That knowledge however really should serve for no more than a basis of discussion with someone (a doctor) who has spent 12 years learning to apply it and to self advocate for ones self. Its too easy for someone to quote something to support a wackadoo position make it sound like they know what they are talking about and be completly wrong.
The next thing to remember is very few of us pay for all of our medical treatment. The costs are either born by the government (supported by tax payers) or spread across a body of insured most of who pay far more in premiums than they ever collect but pay out for some far more than they ever pay in) There is a responsibility to those paying to be efficient in the use of their money. If a $500.00/year DMARD will do the job then there is no reason to supply a $40,000/year biologic. Of course if you are writing the checks, you can use what ever you want to.
Ali Surrey said:
Wow good discussion in here guys...
I just wanted to chime in that I am not on a juice fast ( I weigh 150lbs and was a long distance runner before getting PsA so weight is not an issue).
I juice everyday to add micronutrients to my diet which are really helpful in keeping colds at bay and getting extra vitamins over the winter months. I also stay away as much as possible from dairy, gluten and alcohol, all which are proven to cause inflammation in the body. Basically staying clear of MSGs and processed food can really help. I'm not saying by any stretch that ditching meds is the way forward, in fact far from it. In my case, diet is helping - I imagine I will be on some kind of meds for the long term but wanted to give the natural approach a chance at the very least.
In my case, while on MTX my inflammatory markers nearly doubled after 10 weeks, so while it works for some, it didn't work for me unfortunately. It seems that the docs are eager to put everyone on MTX first and then try other dmards - for ref see
Thanks, Lamb! My infusions take 3 hours because they're aware and careful. I get sick from just about any medication - abx can have me sick for days after one pill. I was scared to death when I got my first enbrel injection because I was sure I was going to get ill. My Remi didn't have this bad of a reaction until I reached my current dosage/schedule, which seems to have finally gotten me to a place where I'm stable. My rheumy would much rather I take mtx with my Remi, as he's sure that would do the trick, but I can't so we do what we can. We've discussed backing off, and I've decided I'd rather deal with nausea than further damage.
I also want to add something about diet and PsA treatment - eating a healthy diet is something we can do to complement our medical treatment. The only thing that can stop damage (treat, not cure the disease) is medication. I come from a VERY holistic/crunchy background, having co-founded a non-profit based on mindful/conscious/natural living, yet looking at evidence-based research (as I did with all my mindful/natural life decisions), it was clear after I got diagnosed that I would go on meds ASAP to halt the terrible damage this disease was doing to my body. It took months to get on meds, and in that time I went from walking on my own two feet to needing canes, then crutches, then a wheelchair, even with all the dietary changes I made for the better in that time. PsA can progress that quickly.
tntlamb said:
Nym, Your reaction concerns me. Next time you infuse make sure you insist that they use the manufacturer rate starting at 10ml x 10 min then 20 then 40 then 80 then 150 for 30 minutes then 250 until completed. There is a tendency in many infusion centers to just set it at 250 or try to get it as close to 2 hours as possible without the steps. They are under the assumption that the step rate is to monitor for more severe reactions. Its not (entirely) it is to avoid the "morning sickness" and somehow prime the body to make more immediate use of the medication. Even the best infusion nurses want to "get 'er done"
TaraLynn...It sounds like you're balancing your diet well. I commend you! I don't have the brain power at this point to combine proteins properly and confidently enough to go vegan again!
Ali Surrey ... Using juicing to compliment everything else you're doing to keep yourself healthy and treat your disease is wonderful!
All this talk about juicing has me craving mango juice with chia... I think that may be what's for lunch for me!
My diet isn't much different than yours Tara. Gluten free and pretty low Carbs. Neither is a "natural food" and both grains and dairy products are altered to ("enriched") to be more nutritious...... I have no problem with healthy natural eating. I managed to loose over 100# doing so.
HOWEVER lets think about this for just a second. You embark on a healthy whole food nutritious diet. You spend 3X for your groceries at whole foods (or similar) but as you leave the store you have buy yeast n vitamin supplements, new blades for your juicer, almond milk (which is a processed product) We slice, dice, sprinkle flax seed on our cereal We juice our vegetables to get our micro-nutrients (weren't they there before?) We buy psyllium husks to help us go to the bathroom. And on it goes.
How in the hell is all that Natural and healthy? We should be able to get what we need from what we eat - all the nutrients fiber etc should be in our diet or simply we aren't eating right. The instant we have to supplement our diet to get whats lacking we need to change our diet.
I'm not saying some things can't be broken and we need folic acid or vitamin D or B vitamins. But if what we are eating requires us to add that stuff, buy nutritonal yeast, self process our foods etc etc. WE ARE NOT eating healthy we are simply supporting a wackadoo industry.
I'm not on methotrexate yet but I remember feeling nautious when I started on sulfazine. Someone on here mentioned ginger tea. I drank lemon ginger tea and it helped. There is a problem with my liver which is probably why I'm not on MTX yet. I'm doing very well on my meds now. My weight has climbed but that is my fault. I've got to start being more active and quit drinking sodas. I never had psoriasis but it is in one of my toenails. Did not realize it until the rheumy found it. I too wondered if I should quit my meds but I read TNTlamb's post on what happens if you don't treat this. I want to preserve my joints and get the nail psoriasis under control. It is depressing sometimes thinking that I have to be on treatment the rest of my life. We think mine was triggered by cdiff, an intestinal infection. I had a gene for PsA and was not aware of it. The people on here helped me a great deal. I was scared when I was first diagnosed. Had no idea it would be PsA since I never had psoriasis. One good thing is that I think mine was caught early. My joints are not swollen like some of the pictures on here. Please hang in there and like others mentioned there are other treatments. just a matter of finding the right one.
You've gotten some terrific advice here. I hope you can get in to see your doctor very soon and find a way to feel less nausea. I took MTX for several months. I switched quickly to injections as they made me much less nauseated. My difficulty with MTX was that it just sapped my strength. I took it on a Saturday night and was pretty much stuck in bed all day Sunday feeling sickly and lacking sufficient energy to get out of bed--so very unlike me. My partner came with me to the rheumatologist and she told him that SHE couldn't stand my being on the medicine any longer as I had no quality of life and no weekends and it was ruining her enjoyment, too. He was very quick to change medications and switched me to a biologic (Enbrel).
Good luck, Hope. Do NOT give up and DO NOT QUIT seeking the right medication for your illness.
Good luck, Hope. Hopefully your rheumatologist will switch your medication or go to injections. If I end up going on MTX I will probably choose the injections after reading all the posts. I just know how much pain I was in prior to treatment. It was terrible. Life was hell for me. After going on treatment, my pain is so much better. I'm not stiff anymore. There are days that I have a great deal of pain and stiffness but usually it is related to stress or the weather. It is not continuous pain like I had before. I had begged every doctor I had to help me. I told them all I knew something was terribly wrong with me. I even told them I thought I had some sort of reactive arthritis. no one would help. Finally referred myself to a rheumatologist. It was the best thing I have done since these symptoms started. Hang in there. The group will help you like they did me.
Thank you, your story sounds a lot like mine. I wish I had TNTlamb’s brain.
mom5 said:
I’m not on methotrexate yet but I remember feeling nautious when I started on sulfazine. Someone on here mentioned ginger tea. I drank lemon ginger tea and it helped. There is a problem with my liver which is probably why I’m not on MTX yet. I’m doing very well on my meds now. My weight has climbed but that is my fault. I’ve got to start being more active and quit drinking sodas. I never had psoriasis but it is in one of my toenails. Did not realize it until the rheumy found it. I too wondered if I should quit my meds but I read TNTlamb’s post on what happens if you don’t treat this. I want to preserve my joints and get the nail psoriasis under control. It is depressing sometimes thinking that I have to be on treatment the rest of my life. We think mine was triggered by cdiff, an intestinal infection. I had a gene for PsA and was not aware of it. The people on here helped me a great deal. I was scared when I was first diagnosed. Had no idea it would be PsA since I never had psoriasis. One good thing is that I think mine was caught early. My joints are not swollen like some of the pictures on here. Please hang in there and like others mentioned there are other treatments. just a matter of finding the right one.
Amen Seenie. I read and look up words and read some more. Then I pick Lamb's brain. And that is after 40 years in nursing! We are lucky to have our Lamb<3
We actually really like nutritional yeast, it's basically replaced cheese (also processed) in our home. Although we do buy almond milk, we also can make it, we never drink regular milk, no one likes it. My point is we are eating a well balanced diet and are completely fine eating a vegan based diet. I'm not missing or wanting anything more. Tonight for instance we made sushi (vegan of course) and a huge pot of miso soup loaded with veggies.
Lamb...it's ok if our diets vary and I understand the need for treatment on top of diet. I must say I'm discouraged with the results I've had with both the MTX and Sulfa...hopefully the next med will give me some real relief.
Thanks for your comments and your as per usual great enlightenment....even though I may not agree on the supporting a wackadoo industry by buying my nutritional yeast! LOL....thanks :-)
tntlamb said:
My diet isn't much different than yours Tara. Gluten free and pretty low Carbs. Neither is a "natural food" and both grains and dairy products are altered to ("enriched") to be more nutritious...... I have no problem with healthy natural eating. I managed to loose over 100# doing so.
HOWEVER lets think about this for just a second. You embark on a healthy whole food nutritious diet. You spend 3X for your groceries at whole foods (or similar) but as you leave the store you have buy yeast n vitamin supplements, new blades for your juicer, almond milk (which is a processed product) We slice, dice, sprinkle flax seed on our cereal We juice our vegetables to get our micro-nutrients (weren't they there before?) We buy psyllium husks to help us go to the bathroom. And on it goes.
How in the hell is all that Natural and healthy? We should be able to get what we need from what we eat - all the nutrients fiber etc should be in our diet or simply we aren't eating right. The instant we have to supplement our diet to get whats lacking we need to change our diet.
I'm not saying some things can't be broken and we need folic acid or vitamin D or B vitamins. But if what we are eating requires us to add that stuff, buy nutritonal yeast, self process our foods etc etc. WE ARE NOT eating healthy we are simply supporting a wackadoo industry.
Sybil,
It is so hard to be a patient with this disease. Each of us has to learn a whole lot about our bodies, and quickly. We each go through our mini-medical training to learn anatomy, physiology, medical terminology, pharmacology, and rheumatology. The only one who really suffers if we don’t do our due diligence is us! So it’s really freaking important, and places a lot of pressure on us to be"ON" all the time. What I wouldn’t give to be able to fall apart in the doctor’s office and have them give me an answer for once. It makes You wonder if this is the case for most chronic illness or just the more rare? Anyway, those that don’t have a background in research or medical fields have my empathy. It’s taken me a long time to learn what I have, even with my educational background and being lucky that my mind works a certain way.
Patient education is really lacking for PsA. We get very little from our docs, even the good ones. There is information online, but it comes in 2 forms: really easy, generic snippets or research articles that one needs a degree to comprehend. Beyond that, we have ONE book. It’s an excellent book, but it IS above what some lay readers can understand and it requires the reader to do some research to look up unfamiliar terms and ideas. There is no “How To” manual, but we need one. Something that covers everything from psychosocial aspects of chronic illness to the intricacies of treatment; One that honestly states the most common side effects of meds and how to deal with them, what the next steps are; one that acts as a step by step guide and is easy for just about everyone to use. Imagine how much more empowered people would be?
Anyway, I’m sorry to have gotten off on a tangent! It’s your fault, Sybil! Your comment just got me thinking, and that is always dangerous. The advocate in me came out, and she is passionate! We really do need better education and understanding from more resources.
You need to remember this is an auto immune disease withe virtually no way to test for it. There are as many version of PsA as there are people with it.
Treatment is a lot more complicated than most think. If you take just the 5 most common Bios 6 most common NSAIDs and 5 most common DMARDs Thats 286 possibilities not to mention that could increase many many more times if you consider dosages. Add in the predi's, pain pills, supplements (folic acid type and acid pills) and it rapidly hits the thousands. Figure a couple months for each and suddenly you realize unless one lived to 312, there would never be an end to the options not even considering the new meds coming on board. Yet OUR expectation is that our doc simply doesn't know what he is doing because he doesn't get it right the first time (or even first few) Let alone know for sure that we really have what he thinks we have.
So now he is working through his treatment matrix and we get impatient and show up in the ER or our PCP or whoever and get shot up, a run of predi etc etc. His matrix is worthless. he either starts over hopes whats been done doesn't effects much or he fires the patient. (Expect a lot more of the latter there are more patients than docs) In any event he is going to be frustrated and mad. No one has to have a Doc they don't want or believe that he doesn't make mistakes or can't be wrong (pure numbers tell you he will be wrong MOST of the time.) But I gotta tell you be very careful AFTER you vent of believing your rant, It can hurt your treatment long term.
I have no guidance as to when to seek a different path Certainly not as long as Seenie and not as quick as many of you. Your Doc isn't keeping a secret, and there isn't a secret that he doesn't know about. There is one other thing. Those of us doing "well" may not be doing QUITE as well as you think. We nay well have adapated better
Lamb, where I can I get the bobble-head doll of you? The one that has a few of these essays recorded and ready to go at the touch of a button? I need the food one for when the well-meaning but desperately uninformed tell me how my diet is causing my disease. Others for other times. I have my check all made out to Ronco; I just don't know what their address is.
Your comment just got me thinking, and that is always dangerous. The advocate in me came out, and she is passionate! We really do need better education and understanding from more resources.