So here I am…7 years after my first feeling of exhaustion and fatigue. 4 years after diagnosis. Had a horrible year on Meloxicam and methotrexate…doc rx’d Humara, bu t I trying now to beat it on my own instead. I swim daily, slowed down to 3/4 time, take the meloxicam and mtx, and eat Paleo only. I nap almost daily and get a min of 8 hrs per night. Is there any chance at all of beating this? Do I have a chance of even reducing pain from a 10 to a 3 or 4?
I am not a doctor, but I'm gonna say no....because if it were that easy, we would all be better and wouldn't have to have this site. Sorry, I don't mean to sound condescending or make light of what you are doing, which are all really good things, but this is a serious auto-immune disease (I am assuming that you have PsA although that wasn't metioned?) If it were me, I would be all over that Humira....as a matter of fact, I am waiting (not so patiently I might add) for my doctor to get me on a biologic.
Best of luck to you though.
Wow, so you're willing to take the more dangerous stuff doesn't work as well but forgo the good stuff, the Humira?
Humira can work the best of all of them and it's side effects are less than those of MTX.
Exercise will not beat PsA. It certainly didn't beat mine. It probably helps the fatigue though.
Take the Humira and get better. The shots don't really hurt. It's a bit pricey, that's all.
I'm on Enbrel and I love it. I'm symptom free and I pay $10 a month.
Unfortunately there is no cure. I had to tell my 10 year old this tonight when she insist there is a cure. Hardest thing to do!
I started enbrel and am hoping it brings back a quality of life for me and my family. The so desperately want me back.
yes x but the exercise must be gentle. Your body has a hell of a struggle to get back to homeostasis.I have got gradually better and better over he past 6 months doing the diet. The inflammation has subsided and if it flares if I eat some WHEAT accidentally- I had a half a beer - I use no starch, cocnut oil and beef broth to give my system recovery time. Absolutely no painkillers or Cox2 blockers as they prevent Omega 3 from doing its job xx Read my links on my blog - I have been on every drug over the past 20 years - and after 6/7 years on Humira, a biologic, it was stopping working so I had to try a new approach - Low carb, high fat, balanced Omega 3:6 , gluten free anti inflammatory diet, using Dr Jack Kruse blog, Cooling Inflammation by Prof Art Ayers and a whole lot more xxxx
Oh and can I say its all very well just saying , you can have Humira - but what is the pro - drug approach, when if it stops working after 7 years ? I say , symptoms are the evidence of your body's unease with your lifestyle and treatment of itand if you pay attention, as I have done to some very good information , not mainstream, but from the top biochemist and medic researchers who are seeing results like mine every day you can definitely reduce inflammation massively. Period - I have cured serious psoriasis plaques, I mean big ones, gum disease, fatigue, folliculitis, bloating, abdominal discomfort, dry yes, permanent feeling of a high temperatue, and on going exhausting Psa joint symptoms , including reducing osteoarthritis symptoms in my right knee. The diet is in my blog in an article i cut and pasted fron a runner called Prof Tim NOakes. Not as I copied it from there - I used a variety of sources as Ive mentioned, but he explains it clearly . If you have had the biologic and it no longer works, like me , try the diet and get your life back. I sure as hell I wish I done it 20 years ago.
I disagree with you, and that makes me very happy as it means there is hope for you, even if if you get a few bad days,you can reduce inflammation without drugs x
Rebel mom said:
Unfortunately there is no cure. I had to tell my 10 year old this tonight when she insist there is a cure. Hardest thing to do!
I started enbrel and am hoping it brings back a quality of life for me and my family. The so desperately want me back.
I do believe there is a way to bring back a positive quality of life but a "cure" by definition I am skeptical. I am meeting with a holitic doctor here in town to help me with the diet and I do believe in food being a true source of help. I have to be realistic to my daughter but also on the other hand I have to show her you always educated yourself about a disease and find out ways to make you feel better. One way or me is by showing her healthy choices so she too will mimic . I am always on the internet looking atarticals, going to the med school library looking at journals and talking about options with whomever will listen. I will not accept no. A fighter I am, which one thing I can instill in my children.
I am looking closely at your blogs and I am learning so much. Keep them coming for one day I would like to be off of these pills and live again drug free.
Hi Amy, it would be good to hear your reflection on all this advice?
The average person who lived on Paleo (cavemen), the latest in food fads lived less than 25 years and had severe nutritional issues. If you have a food sensitivity of course avoiding it will help. If you are putting "artificial ingredients" through your liver, helping you liver out will help, avoiding sesame seeds will help diverticulitis. Having an immune system that produces anti tumor necrosing factor will react better if it produces less. If its produces to much because of diet fix the diet, if produces to much because of cancer, remove the cancer, if it produces too much because of your DNA, all you can do is fool it.
tntlamb said:
The average person who lived on Paleo (cavemen), the latest in food fads lived less than 25 years and had severe nutritional issues. If you have a food sensitivity of course avoiding it will help. If you are putting "artificial ingredients" through your liver, helping you liver out will help, avoiding sesame seeds will help diverticulitis. Having an immune system that produces anti tumor necrosing factor will react better if it produces less. If its produces to much because of diet fix the diet, if produces to much because of cancer, remove the cancer, if it produces too much because of your DNA, all you can do is fool it.
Don't all bodies produce TNF though Lamb ? There are many convincing arguments that cancer is also related to a higher intake of sugars than our bodies are designed to cope with, as is diabetes and much contemporary research into heart disease. I say , inflammation is the process that we should be concerned with, and that if we can minimise it , then so much the better for our health. I have had biologic medication and it worked well for a while. What next - diet or biologics- if diet is working- and Im better than ever during 20 years on meds- then surely this means something. I don't know if it will last - but I know no self respecting rheumatologist could even consider putting me on a biologic now as my CRP is too low! I am more active than I have been for years as I have no inflammation - and I too have a family history of this disease- it is genetic, but I believe modern diet has exacerbated it massively. My task is to identify in what ways.
What a great discussion; I am so relieved that I found all of you. As you probably have experienced, this can be a very lonely disease. Most people just don't "get" it.
I read each response carefully. I DO believe medicines can improve the quality of life, but on the flip side, medicines can create problems of their own.
After reading each response, I have decided to leave the Humera in the fridge for a couple months.
I believe it is easier to give yourself a shot and feel better than it is to change your entire lifestyle... easier is not always best. I believe after reading your posts and a couple books on the topic, that changing my lifestyle should be the first attempt, leaving medication for the final attempt if all else fails.
For doubters try this much only: NO sugar in any form. I felt better the very next day. Feeling better is the goal.
I have had this disease for years. This summer I had a hysterectomy and went off the PsA medicines for it. I felt great for a month or so and then... WHAM! For 6 weeks straight I lived at a take-your-breath-away level 10 pain, swelling, fatigue, and misery.
I got the Humera, but could not take it due to a sinus infection. It is sitting in my fridge. I take time every day to just look at it. I can not decide it if is my salvation or my death.
While waiting for the anti-biotics to work, I have been swimming daily and eating Paleo. I am at a 3 today. My energy is up.
According to the literature, for this to truly heal Leaky Gut, I need to get off of the Methotrexate and Meloxacam...I am going to do that very very slowly. Also, the literature says I should go off coffee....hey now...really?
My Rheumy supports my decision as long as my blood work is good and swelling down. I go for blood work on the 10th. He believes we can affect this disease with lifestyle and attitude and stress reduction. He has even seen regular fasting help! BUT - he stands firm that it isn't a cure, it is a LIFESTYLE.
Sounds similar to my experience Amy- i had total hysterectomy 7 years ago. Humira stopped being effective this year and i started playing seriously with diet. It has been amazing. If drugs are not an option, its worth giving it your best shot. Paleo- or LCHF with careful attention to omega 3;6 balance has helped massively. I don't know if it will last forever, but it is atm Oh and i still have coffee- but with cream , yummy xxand I know others have had success with other more vegan/raw food diets - which i think works due to other factors - but its paleo for me x
While I agree that diet has a huge impact on health, I hesitate to suggest it can cure for PsA. You can go into remission from PsA for very long periods, and that is one of the hopes of the different anti-inflammatory / arthritis diets, if I understand correctly. Dietary changes are not a cure-all, but can make a huge difference in quality of life for some people. Certain diets can reduce TNF in some people, but diets are not one-size-fits-all. I know many people who have spent 6 months on the anti-inflammatory diet with no change whatsoever in symptoms. I know people on the anti-inflam diet that were in remission for years, then got hit hard with PsA (or other autoimmune illness) symptoms. It was emotionally difficult for one particular friend who believed she was cured. A healthy diet is certainly beneficial to everyone!
Im sure that is absolutely correct Nym. If you have another illness, take antibiotics or whatever, then whatever your diet, it is likely Psa will flare again. The difference is that if you have some strategies to contain inflammation again, through a careful choice of food which avoids your main triggers, then you may be able to contain again without resorting to the drug therapies. I have to say this as Ive been through them, and would prefer, if I can, to manage without another biologic. There are other factors, age and hormone profiles will also affect this disease, as well as the stressors of life that are unavoidable. For me, post total hysterectomy (caused in part by long periods on prednisolone in my thirties) my 47 year old body is completely stable in its hormone profile and this probably helps
.I don't believe that cure is the correct language either, in the same way a type 2 diabetic can control their symptoms through diet, they are not cured or a celiac . They can not go back to a lifestyle which they may have managed previously. But we can talk about suppression of symptoms and an awareness of new and better ways to manage them based on a more comprehensive understanding of how the disease works through inflammatory responses. There are many different ways to achieve it- diet is not a one size fits all, but nonetheless, it is significant .As are other lifestyle changes, sleep , exercise, sunlight etc and if we can explore those it can empower people who reach crossroads 'when the drugs don't work' .
Wow! You give me hope!!!
Of course, your sceptism is , and everyone else's a wise and to my mind sound response .I am not writing this because I think it is so easy to get well in a society with a rigid belief in what is normal and safe to eat and do to your body.. There seem to be many, many people in western societies trying to deal with bodies under strain from diseases which have an inflammatory component .I have been reading the biochemists and biologists who look at this in a broad context rather than getting too worried about individual disease pathways ( although they explore these in more detail than my gp or rheumatologists) as they are asking slightly different questions. More exploratory if you will, not how can I suppress this inflammation for this ill person, but questions like what purpose does this inflammation serve the body in an evolutionary context. Its so easy to get brainwashed into thinking your life is the destiny of your genes predisposition to attack your joint tissue and collagen and muddle up your proteins- if that is your genetic inheritance, or genome, maybe that tells us something like, this body has evolved to live with a seasonal diet, high in fats at some times of the year, fallow at others, with exceptionally high omega three from fish so it can withstand the extreme cold and periods without fruit.If evolution is slow, and we have radically altered how we expect our bodies to perform on food they were not designed to eat in such quantities in a few generations, without the exercise and extreme temperature and quiet periods even fasting , then it is not surprising if they start to get a bit muddled in the wiring.
For me the question isn't - how can I suppress these symptoms as safely and economically as possible for the patient, given my resources as a rheumatologist and their resources as a patient in the NHS in the UK, or perhaps on a limited healthcare insurance policy as in the US. That is their job, and I am not dismissing it as a failure . It is a question of where , for me, to put my faith, as have said, if perhaps, the biologic stops working as it has for me.I do not say don't try Humira, or Enbrel if that is a simple next step, but it has to be said that these immune blockers, even with added methotrexate, don't work for everyone and they may not work for ever. I won't harp on about potential side effects, because , when they work, the effects of biologics are amazing, if likely to gradually fade in their effectiveness.
However,when we sign disclaimers we to take them we do that with the adult knowledge that the long term side effects are as yet unknown, they have been used since 1998. They could well be the new aspirin - relatively harmless and I am definitely not intending to do any scaremongering about them. They have brought hope and quality of life to a lot of rheumatologists !! as well as patients with this family of disease. But where do you go when they stop working- and if like me , again with a strong history of moderate to severe arthtritis ?
My answer has been to start with understanding inflammation - not just the very specific pathways of Psa, which I believe has a broader set of issues with it than my rheumatologist will take a medical resposibilty for -as it is - it is just not his/her job to manage the gut issues, the depression, the gum disease , they belong on another specialists desk. And I question this pattern , which is so much part of the way the management of disease is organised.
So no one cures inflammation - that is a biological imperative for life - a major part of how animals function- but we can explore chronic states and look for things in common with unhealthy organisms . I know that as I am well atm, I am more objective about this than I was before, equally I know how much we become identified with our diagnosis as though this somehow helps. I know it did for me anyway at the beginning of my journey 21 years ago- it was like, so this isnt to do with anything Im doing wrong - its a terrible affliction, and it is a huge relief to know you have something in common with others who have experienced such pain, that it isn't you are lazy, lack willpower are going crazy and so on.
the questions I am interested in , which are proving fruitful to me now, post the best part of my life, late twenties, thirties, significant part of my forties dealing with constant inflammation, drug therapies etc, is why did this start , why hasnt my cousin had it so bad - he has managed his on occasional NSAIDS, although he stopped his sport in his twenties, my 71 year old aunt has it too- but she wasn't in such a rush to get running to the rheumatologist as me - , and yes she has very knarled old hands, swollen knees, a wheat belly, but generally is active and just takes the occasional NSAID. Mmmm food for thought for me.
So back to chronic inflammation - and my questions. So I am more looking at how the health of the gut is a vital factor in reducing inflammation and wellbeing and the strategies to manage that. The issue of gut flora and their role is huge, and some ideas of the complexity of looking after the ecosystem in your gut I have gleaned from the site Cooling Inflammation, which is academic and I have found most interesting.
The next thing has been to try and understand the role of different types of food and how it is actually digested - and how it interferes with inflammatory pathways - so all the stuff about how undigested carbohydrate in the gut irritates certain bacteria and this leads to inflammatory responses which can be chronic especially with milk proteins and grain proteins and other tricky plant lectins. as we are advised to eat a high carb low fat diet as a general rule , I have spent considerable time and energy looking at the scientific evidence and the crux points which much of the conventional wisdom is based on. If it aint broke dont fix it of course - but what if it is broke
Many people are experimenting with their diet - looking to feel well and reduce inflammation - and I think there is a lot we dont know about the inflammatory effects of insulin which occurs when you eat any type of starch. There is also the problem of too much fructose - from fruit - again which ties in with the seasonality thing- the idea our bodies may be better when things like plenty of sugary fruit are short lived.
The detail of how different foods are digested as well as how food gives your body hormonal information which affects it is interesting too. I dont think can fasting can be a bad idea- it has been practised for thousands of years for cultural reasons, and maybe millenia when food supplies havent been plentiful and may well have a huge impact on the specific gut bacteria which irritate the gut. Starve a fever and feed a cold. If inflammatory illness - surely a kind of fever - can be helped by starving certain gut flora, then my approach seems to be helping. I wont say cure- you cant cure the body of its dislike of too much of certain things, but it seems happier. And so do I.
Rebel mom said:
I do believe there is a way to bring back a positive quality of life but a "cure" by definition I am skeptical. I am meeting with a holitic doctor here in town to help me with the diet and I do believe in food being a true source of help. I have to be realistic to my daughter but also on the other hand I have to show her you always educated yourself about a disease and find out ways to make you feel better. One way or me is by showing her healthy choices so she too will mimic . I am always on the internet looking atarticals, going to the med school library looking at journals and talking about options with whomever will listen. I will not accept no. A fighter I am, which one thing I can instill in my children.
I am looking closely at your blogs and I am learning so much. Keep them coming for one day I would like to be off of these pills and live again drug free.
I don’t know about the benefits of low carb diets and haven’t looked into the science of any of it but… When I eat crap, I feel crap! I’ve know this about my diet for years. If I pig out on processed food, eat chocolate and crisps I pay for it, by feeling down, bloated, sluggish, grumpy, fatigue gets worse, and a general feeling of grossness. The more crap I eat the more I want. I always feel better after a few days of fresh wholesome food, I feel better generally and add exercise (whatever I can manage) and I improve further. I have to watch the fat in my diet as I also have hyperlipidemea so don’t have fatty food or much red meat.
I can’t say I notice my joints are better but my mood and energy are definately better
Since we are talking about food, what about raw or unraw honey for a natural sweetener in oatmeal. Ive read that honey is anti-inflammatory?
Educate oneself! Definitely a part of the answer. Thank you for the informative response Melaniej…We need to stay in touch. For now, I chose to heal my gut! To read, learn, exercise, eat “right” meditate and heal myself. I understand I have a disease I can not “cure” , but I intend to make each decision through out my day with the intent of “managing” it. No meds for me just yet. We’ll see what the doc says on Monday! Thanks again for sharing.
Rebel mom - although I Am not eating grains right now, when I did I flavored my oatmeal with lots of cinnamon and some dehydrated cherries! Amazing!