Since doctors can't seem to heal me, I'm back asking for advice here in the forum. I'm basically trying to figure out what's next for me. It's now been 9 months on MTX and 5 months on Enbrel. I feel worse than ever. Extreme all-over pain, upset stomach, depression, anxiety, etc.
A brief history of my situation: The pain started 15 years ago with gnawing chronic stomach pain, followed by lower back and neck pain, followed by all over pain. Was diagnosed with seropositive RA nearly 2 years ago, with very high anti-ccp levels of around 2,400.
I've tried the following drugs/remedies with absolutely no relief: LDN, prednizone, methotrexate, enbrel, lyrica, cymbalta, medical marijuana, restrictive diets, chiropractic, accupuncture, etc. Nothing helps.
Being told by doctors to be patient is getting very old. I've heard this for 15 years, as pain has only increased, I've watched the prime of my life slip away, friendships disappear, finances dwindle. If you're reading this, you've probably experienced similar frustrations with your own situation.
My question to you all... what next? The drugs should be working by now (according to the drug maker's own documentation). I'm able to work less and less and am now using credit cards to pay my bills. How can I afford my meds, doctor visits, food and rent if I can barely get out of bed? The measly $1,000 or so that disability would pay isn't enough.
The only other thing I can think of is getting a root canalled tooth pulled. I've read a couple of cases where folks in similar situations experienced relief after removing root canals. I experienced some pain and gum swelling with the tooth years ago, but nothing recently. I have a lot of jaw pain and overall sensitivity, but nothing specifically with this tooth. It's also very close to my sinus cavity, so pulling it could cause issues in itself.
I have a 10 day supply of Pennicillin I could try in hopes that it may offer some temporary relief in the off chance I do have an infection that is causing my pain. My RA doctor says it can't hurt to take the antibiotics, yet WebMD claims doing so can cause kidney damage when taken in combination with MTX. I'm also on pain meds. With my already sensitive stomach, I'm not sure I want to damage my stomach bacteria even more, and/or damage my kidneys.
This is all so confusing. With the contradictory advice from various doctors, I have no idea what to do anymore. Just keep waiting? Any feedback from folks with RA would be appreciated. Thank you.
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There is mixed info on this. I saw my RA doctor last week. She wants me to continue on the MTX and Enbrel and we are trying to get infusions accepted through the insurance.
I told my RA doctor that I had a prescription for penicillin that my dentist prescribed a few months ago for tooth pain. I told her I wanted to try antibiotic therapy since the current drugs aren't working. She said to go ahead and try the antibiotics without stopping the MTX. Yet I read on WebMD that this is very dangerous on the kidneys. It's this contradictory info that drives me crazy.
I'm hesitant wanting to stop the MTX because it will delay an possible progress. I may stop it next week and try the antibiotics. Thanks for the reply.
Oh my goodness. Your post really breaks my heart. I'm recently diagnosed and can barely handle it all. My heart goes out to you.
Just because MTX or enbrel didn't work for you doesn't mean the other DMARDS can't help. Have you tried the others: Sulfasalazine, Plaqeunil, Leflunomide? Sometimes all 3 are used together, or this one and that one with MTX, etc. It's called triple therapy.
There is also something called the antibiotic protocol. Basically the use of an antibiotic to treat RA. It's called minocycline. There is a measure of individuals who have had success with this one even though most docs consider it to be antiquated.
There are also other biologics out there, as I am sure you know. Maybe a different one will have a better effect on you.
The quickest thing I've learned is that everyone's successes are random. And so you just have to keep trying! What may end up working for you may be horrible for me, etc.
I noticed you tried cymbalta, was this for depression? Or do you also have fibromyalgia?
And from my understanding, Lyrica is for nerve pain... So just wondering if you're dealing with these other issues as well, or did your docs just experiment with these drugs?
My naturopath doc suggested I take a probiotic 2x/day to help keep the good bacteria in my gut. Maybe that's something you can look into as well.
I would be completely frustrated as well. "Be patient" is not acceptable after 15 years.
I hope I haven't further frustrated you. Maybe the list you posted wasn't complete and you have tried everything out there and my post was useless.
Hey there. Thank you for your input. I appreciate it. I am familiar with triple therapy and minocycline therapy. My doctor wants to continue with the MTX and Enbrel, even though I've surpassed the timeframes the drugs should be working.
I told my RA doctor I wanted to try antibiotic therapy but she refuses, claiming it's only used for early onset, and has too many side effects and takes too long. Which is stupid because the drugs I'm on are toxic, take forever to work, and studies show minocyclin to be just as effective in many cases. As far as I can see, the only reason MTX is more popular is because the drug companies convince the doctors to go this route because there is more money to be made.
I've also asked about triple therapy but my RA doctor wants to continue with the current therapy longer. I just can't understand why I shouldn't feel slightly better rather than worse than ever, even after being on the drugs so long. She also wants to try infusions, so we're waiting on the insurance to approve or decline this option.
The fact LDN, Prednisone, MTX and Enbrel haven't worked makes me very skeptical anything will help at this point. I've often wondered if a tooth infection or something is poisoning my body and is the reason none of the drugs help. I do have bone damage and am seropositive, so it's hard to think I don't have RA, though I wonder if an ongoing infection could be preventing the drugs from working.
To answer your question about the cymbalta and lyrica... the doctors were just experimenting... thinking maybe I had fybromaliga as well, or anxiety contributing to the pain.
Anyway... thanks again. I just read through some of your posts. Have you found any relief since your last post 2 months ago? I see you experienced hair loss and tingling and no real relief from the drugs. That's horrible. Luckily you're beautiful so even a little hair loss won't change that. But I can't imagine the hit to self confidence hair loss would inflict on any woman.
My poor Needforname... Just a thought: as you don't seem to have the comfort of trust in your present specialists & it's costing you so very much, have you considered asking for a second opinion/researching & trying another?
Hey there. Thanks for the reply. Yes, I'm seeing a new RA doctor soon. I'm sure the protocol is the same however. More drugs that don't work. I'm convinced I have something other than RA but the doctors aren't thinking outside the box. More years of waiting in patience while these foolish doctors fill me with more toxins. Sorry for my pessimism. It's all I know anymore.
Sorry for the late response...been a crazy week. Trying to move so we just listed our home, etc.
To answer your question about the tingling/numbness, I think time may have helped it to subside. But most importantly, I stopped all DMARDS and went through a 28 day detox that my naturopath doc recommended.
DISCLAIMER: I am not here advising anything or that anyone should do what I did, but I am just letting you know what I decided....phew! now that I got that out of the way...
Yeah, I was sick of all the crazy side effects.
-I was on MTX for 2 months, and the hair loss was INTENSE, so one of my rheumy's told me if I hate it, I can try the others. Plus, ever since I started MTX I've had this weird pain with my urinary tract (went through hell with this one, every doc prescribing me antibiotics, even though it was NOT a UTI). So I got to a point where I was like, how far am I gonna let my baldness go before I decide this is enough. So, 2 months was the mark for me.
-Then I tried leflunomide for 8 days. Immediately upon taking it, the tingling began ( and it is supposed to be one of the super rare side effects!!!), by day 8, it was driving me mad, and so I stopped. And the damage can be irreversible if you dont stop asap!
-Next stop: Plaquenil. Seemed harmless. Was on that 2.5 weeks, and the tingling began again. Although, also in retrospect it totally made me look fat, I don't know if it was water retention or what, but I went on a 5 day trip to Hawaii and I was on it during that time and in the pics, my face looks huge. Like, unnaturally huge. So I stopped plaquenil. Emailed my rheumy about it and she wanted to put me on biologics. Whoa, hold your horses, what happened to the 4th DMARD. So I had her write me up a prescription for sulfasalazine. It is still sitting in my drawer.
The timing of the detox coincided with me stopping Plaquenil so I wanted to see what would happen if I didn't do DMARDS. I had come to the conclusion that Prednisone (although not helping to slow the progression, was what made ME feel better and I'd rather be on that that anything else. Stupid? Maybe. But that's how I feel AS OF NOW and I'd rather feel good on this drug rather than suffer through the permanent damage from the other toxic drugs that MAY or MAY NOT help with progression and remission). Yes, I know Prednisone has its bad side effects as well. But I've been on it for the last 5 months and everything seems to be OK thus far. Plus, I failed to mention, I've been tapering it the whole time. Currently, I am down to 7.5 mg.
While doing the detox, I also went to the sauna to sweat out the toxins (I did a blood test that showed a lot of heavy metals in my blood). And was getting IV vitamin therapy (meyers cocktail bag with a glutathione 1-3K mg push) every week. By the way, the detox i did was specifically for heavy metals. If you are interested, it's called Metagenics 28 day heavy metals detox. Can be obtained only through a physician.
What can I say, I had my ups and downs. But overall, I feel better and I've been able to continue to taper my pred!
Lastly, I came across a Chinese doctor who claimed to help himself and others with RA and AS specifically. I went and saw him because at this point, I have nothing to lose. I have to cook this tea every 4 days, tastes insanely bad, and takes 4 hours to cook. But what the hell, at this point, I'd give it a try. All the herbs, roots, flowers, are disclosed and so I felt comfortable beginning this regimen. I had my liver panel and other blood work prior to starting, so I can see if it is doing anything harmful in a month, when I check my blood work again. I am about 2 weeks into it and I actually feel a little better. Coincidence? maybe. But I need to give it more time.
I am hoping I have found my answer. That's my story for now. Sulfa is still waiting for me in the drawer in case.
But I must say I am still shedding hair at an alarming rate! That MTX did a number on me!
I hope you have been feeling a little better these past few days! Sorry for the long post...maybe you have fallen asleep by now!
I read through your post twice. Partly because I'm intrigued with your story, but also because I'm a tad stoned (medical marijuana) lol.
I like that you're trying more holistic approaches and thinking outside the box. Can also understand your reasoning with the Prednisone. It would be difficult walking away from something that works.
I tried prednisone twice. Each time it gave me tremendous heartburn and worsened anxiety while not helping with the pain. It seems to be the exact opposite with you. Funny how everyone is different.
May I ask... was there a reason you didn't want to take the biologics? Also, since you're looking for safer options, have you considered LDN, or medical marijuana with cbd? These haven't helped me (other than MJ helping with sleep), but they seem to help some folks.
The biggest question I have with RA is regarding what the doctors say about how the disease will kill us or cause permanent damage if we don't take the recommended treatments. Yet the treatments don't work much of the time (none of the time for me) and some people seem to do better on strict diet and holistic approaches than the meds route.
I suppose we just need to keep trying things until something sticks eh?I'm off to sleep. Have a good one
It isn't helping me with the pain unfortunately, but I think it helps with keeping my mind off of the pain sometimes. It also helps with sleep and sometimes appetite. Some folks say it does help with pain. Also some promising research showing the neuroprotectant and cancer fighting capabilities of medical marijuana. It's a much safer option to try in comparison to the meds doctors prescribe for pain and sleep. Maybe worth a try if you can.
Have you heard about the Paddison Program, a way to reverse your RA symptoms . I've had RA for 40 years and recently found this program through FB. Food contributes to flare ups.
I am so sorry for your problems , why not take a look at the Paddison Program which concentrates on gut health and healing it. I have RA for ten years but am fairly under control with diet and medication.
I tried restrictive diets but found them to be ineffective. I felt no better. I would like to try the Paddison Program, but I just don't have the money, time or energy to follow anything right now. I can barely stand for 10 minutes, let alone spend the time preparing these time consuming dishes and spending hours in the super market each week.
I eat oatmeal in the morning, I juice for lunch and eat whatever my wife makes for dinner.
I've gone gluten free for 3 months...didn't feel any better. I tried fasting (water only) for 3 days...didn't feel any better. I tried tumeric paste for a month... didn't feel any better. I'm pretty convinced food is not the answer for me, or I would have experienced some relief with my experimentation.
Thanks for the suggestion. How long did it take you to experience relief when you tried the restrictive diets?
So sorry , Clint Paddison puts a lot of information on YouTube. I am still on medication, Humira and mtx, but was able to stop prednisolone after 4 months. I don’t think I would take antibiotics but try to eat well , exercise even just walking helped me. Hopefully the rheumatologist will find the right medication soon. There is a lot of talk of healthy gut these days.
I may try the Paddison Program, even though diet changes haven't helped one bit for me. Can't hurt I guess. Glad it helps you. Thanks for the input. I appreciate it.
I've found that giving up sugar has helped. I eat fresh fruit but avoid all other forms of glucose/sucrose - no biscuits, cakes, sweets (candy), honey, syrup, juice, etc. It was hard for 3-4 weeks, now it's easy. I have a small bit of 80% dark chocolate when I feel like it, and if I want a real sugar rush I eat raisins or dates! It seems to me it has reduced my general inflammation.
Thanks for the mention. I've thought about giving up sugar. I've tried drastically reducing it with no luck. It's very difficult giving up all sugars for me. I did find it got easier to go without as I consumed less and less. The biggest difficulty for me is that oatmeal is about all I can eat in the morning (horrible appetite). It will be tough to eat without honey. I'l try reducing it. Thanks.
Oatmeal was my standard breakfast when I gave up sugar, too. It took less than a week to get used to it without sugar - I just add a bit of fresh fruit before I cook it now.
There are a few things I've noticed seem to cause direct inflammatory reactions for me if I eat them - i.e. stomach problems and my hands swelling up, and sometimes other bits too. Sugar is definitely one (the reaction is visible and painful within hours, now that I don't eat it so my system has 'detoxed') and oatmeal is another possible suspect (it seems to make my knuckles swell, but it's not so dramatic, and some sorts of oats seem better than others, and other things can make that happen too, so I'm not sure)...
If your appetite and digestion are poor, my hunch is food plays more of a role than you've been able to identify yet. It took about 3 weeks for me to 'detox' from sugar so that I noticed its effects, rather than having constant low-grade swelling and stomach problems.
Flow4, although there's no gluten in oats there is another protein that is similar to gluten that can cause problems. I've been on a gluten-free, corn-free diet for years and was able to give up anti-inflammatories only after going corn-free. I didn't eat oats, playing safe, but recently felt tempted after seeing packets of 'gluten-free' oats in the shops. Well, of course, they are gluten-free, but they have this other problematic protein. Anyway, I did't want to know, I was enjoying my oats so much! But after a couple of months of oats for breakfast I had a massive flare.
I'm sure the oats were responsible. Goodbye, dear oats!
That's interesting, Jo. Funnily enough, I've also stopped being able to tolerate popcorn, rice cakes and some other grain-derived proteins like quinoa and quorn, and I'm ok with pastry, so I already know it's not gluten. But it's hard to spot a definite pattern to what it IS!
The only way to really know if/which foods are RA triggers is to do a proper elimination diet. The first one I did was the British 'pears and lamb' elimination diet for arthritis (can't remember the name of the author/doctor). It can be scary because at first you get detox symptoms that make you feel worse. When you're stabilised you re-introduce foods one by one (otherwise you'll never know) to see if they increase your aches and pains, swelling, stiffness etc (not headaches, that's a detox symptom). But one can get over-sensitive. At one point, I couldn't eat broccoli! Now I can, but who knows, maybe I would be better without it. There's always room for improvement, on the diet, but you have to get your nutrients too - and people with RA are probably malnourished. It's not easy - I'm still a learner after years of gluten-free.
Or you can do a blood test that figures out what foods/grains you are sensitive to. My naturapathic doc had me do a general food and chemical one (array 10 &11) and I couldn't believe the things I was sensitive to: asparagus, blueberries, vanilla, cherries and I cannot even look at a pineapple!
There are very specific ones that can test for barley, rye, amaranth, buckwheat, all kinds of stuff. If you go the the bottom link, check our array 4 and all the things they can test for.
Thank you for sharing. They are some strange things to be allergic to. I had a skin prick allergy test a couple years ago and they said I was possibly sensitive to cantaloupe, peanut, soy, corn, and peanut butter. The tests aren't all that accurate so I always took it with a grain of salt. Though I did attempt avoiding these foods for a few weeks, though didn't notice any improvement in pain levels or sensations. Maybe I just need to try again for longer this time, or begin with an even more basic diet.
The allergy tests aren't all that accurate, but they show us where to start I guess. I'm going to try the diet thing again this new year. Thanks and best of luck with your health in 2018.
Hey! Just wrote you a novel in another part of this post! Yeah, allergy tests are not that accurate, but I guess they are a start. I think a blood one would be a few steps up. At least they can give you a range...like in the normal, or kinda high, or stay away range.
Thanks for the sentiments! I REALLY hope you get some kind of relief! I agree that you need to find another rheumy. It not about what he/she wants, it's about you. Be pushy if necessary. Just say what next drug you want and that it isnt right that they hold all the control. That has been my technique as of late. I think my rheumy hates me, oh well!
Lol... I think my rheumy hates me too. I'm the "questions guy" haha. Usually am only able to get through 1/2 my questions. I have no problem voicing my opinion, but it's usually the insurance company who chooses the next drug. For example, I just got denied a more pricey infusion option and waiting on insurance to accept cheaper one. It is what it is I suppose.
Regarding the allergy test... Sorry, I'm just now seeing now that the link is for a blood test, not skin prick. That's cool. Thank you. I've considered one of these tests but wasn't sure what one to go with. I'm bookmarking it now.
Thanks. I don't believe I react to food other than too much sugar. I tried a 3 1/2 day fast (water only) and didn't feel one bit better. Also tried going gluten free for a couple months, soy free, corn free, peanut free. Had a food allergy test a year or so ago and found out I had possible sensitivities to a few things, but when I avoided those things I didn't feel any better.
Apparently those tests aren't very conclusive or accurate anyway. I plan on trying a super strict diet like the Paddison Program soon. My appetite is so weak though I end up just not eating because I gag on the stuff he recommends. Worth a shot I guess, but again, diet has never noticeably correlated with pain for me.
Also those diets require many hours spent preparing meals, searching for unfamiliar overpriced foods in the grocery store, and are not cheap. Not easy with no money, inability to stand for long or go shopping.
I'm currently transitioning my diet. Will see how it goes. It always comes down to energy, money and time. When they don't exist, simple and easy to prepare meals end up winning. Anyway... thank you. I just figured I'd share my thoughts.
Interesting. I'm going to slowly reduce my sugar intake and see if it helps. I've tried in the past with no success, but maybe things have changed. I'll try apple chunks instead of honey. Good to hear you experienced some relief reducing sugar. I appreciate your input.
I don't know if you have ever smoked, Needfor, but I found giving up sugar just like quitting smoking: mood swings, irritability, cravings... It was *tough*. I don't know whether I could have gradually reduced it, because it's very addictive; I did 'cold turkey'.
If I'm right, and sugar is essentially an allergen for me (and others) that triggers an immune response, then people who are sensitive to it need to cut it out not down. Like you couldn't eat just a little bit of shellfish if you were allergic to that...
Interesting. Yeah, sugar is in everything, so it will require more than just eliminating sugar for me, but an overhaul of my entire diet. For example, sugar is in sauces, pastas, no more honey, etc.
While I never noticed diet changes helping with pain reduction, I'm going to give it another go. I started yesterday reducing my sugar intake. Since oatmeal seems to be the only thing I can eat in the first few hours of the day, I'm going to try apple instead of honey. Thanks for your input.
Having eliminated sugars almost completely at first, I now seem to be able to tolerate small amounts. Pasta is ok, bread isn't. Fresh fruit is ok, but I have to be careful with dried fruit. I can eat a tiny bit of 80% dark chocolate, but nothing sweeter. I can't drink alcohol or juice at all. And so on...
I cook most food from scratch anyway, so it wasn't such a major change for me as it would be for many. It was difficult at first, but now after 2 years it's fine
Hey flow4. Just one quick question... how do you know what foods you're good with and which are causing issues? Do you notice increased pain within 12 hours, 24 hours, a couple hours? I never seem to notice any changes in my pain, even when I fasted for 3 1/2 days on water only. I guess starting with very limited basic diet and adding new foods in slowly is the key. But this only works if you can feel the difference a food makes. Anyway... was just curious how long it took you to feel worse after eating a bad food. Thanks.
I discovered the sugar reaction by accident, but in such a clear-cut way that there's no mistaking it... In November 2015, I gave up all added/refined/processed sugars as a sponsored thing, to raise money for Save the Children. During the same month I was also diagnosed with inflammatory arthritis...
The month 'detoxing' from sugar was quite difficult, as I said. I had all sorts of withdrawal symptoms, including headaches and mood swings. But by the time the month was up, I had kicked the habit, and I didn't immediately rush to start eating sugary things again. About a week into December, I had a glass of fresh orange juice when I was out for the evening with friends. The following morning, I woke up feeling like I had a hangover - I had a terrible migraine, I ached all over, and my hands and knees were swollen. About a week later, I ate a mince pie - and my hands swelled up dramatically within an hour or two and again I developed a nasty headache. I took the hint, and decided to stay off the sugar!
Meanwhile, I had done some research and discovered that sugar is known to cause inflammatory reactions. I also found that there is a known genetic link between type one diabetes (which my brother has) and inflammatory arthritis (me and my dad), with glucose intolerance thought to be the common factor.
Now, two years on, I notice increased pain and swelling (especially in my hands and knees) if I eat refined sugars, including bread and of course alcohol. The more sugar I have the worse it is, so I have stayed off it.
Sugar is in so many different foods, that I don't think I would ever have discovered my sensitivity to it, if I hadn't done the detox. I am pretty certain that a few days without sugar would not have been enough; it takes weeks to get your system clear of it. And it is only when it is out of your system that you start to notice its effects and be sure that they are not due to something else.
I know that other people say they have problems with other foods, like tomatoes and peppers, but I have never noticed a problem with these. All fresh fruit and veg seem okay with me. But some other grains, including oats, couscous and quinoa, seem to cause a bit of a reaction.
Wow... incredibly insightful! I'm going to try your challenge. I don't eat a lot of sugar, but eliminating it for longer than the couple weeks I've tried in the past may be worth the effort. Thanks for sharing your experience. I appreciate it. Glad to hear you found some relief.
Hey there flow4. My dentist wants me to suck on sugar free candies throughout the day because the drying of my mouth (caused from pain meds and RA meds) is causing dental issues. Since I've began reducing (and ultimately ending) my sugar intake hopefully, I'm thinking about substituting my sugar with xyletol.
Xyletol is considered to be the best sugar alternative, from what I've read at least. It actually is beneficial with bacteria and is very low on the glycemic index. Folks with candida use xyletol. I was wondering if you've tried it. If so, did you experience any pain or adverse reactions? I'm thinking about ordering some xyletol candies from Amazon. Would love to hear your thoughts.
p.s. I can't stand stevia (tastes like the horrible aspertane to me).
I don't use sugar-free sweeteners and sugar substitutes, and here's why...
When I was a week or two in to my 'sugar free November', I was climbing the walls, craving sweet things soooo badly. I allowed myself unlimited fresh fruit, so I'd bought some extra grapes and pineapple for all those moments I 'fancied something sweet'. Then a friend suggested that, instead of snacking on grapes etc when I craved sweetness, I should instead eat something Definitely NOT Sweet, like olives or cheese. So I did, and it worked: the cravings subsided.
I think that because sugar is, literally, an addictive substance, giving up sugar is at least as much about re-training your brain as your body. So that if you continue to give yourself sweet things, your mind and body continue to crave them. You need to break the habit and reset all those neural pathways laid down over decades that lead us to depend so much on sugar, for comfort, reward, energy boost, relaxation... When I craved sugar and gave myself fruit, the cravings continued because I was still 'rewarding' the craving; when I craved sugar and gave myself olives/cheese, the cravings went.
Sorry, I'm repeating myself. But you get the point!
Quite soon after 'breaking the habit of sugar', artificially sweetened things started tasting a bit disgusting. That's the best thing about giving up sugar, really: sweetness generally no longer appeals.
So it might make it harder for you to give up sugar if you suck xylotol sweets/candies. No reason not to try, but be aware of that risk. I think personally, I'd try tea tree oil instead first...
Intersting. That makes sense. I'll hold off on the xyletol and try something else to moisten the mouth. Thanks for sharing your insight. I really appreciate it
Try a two day fast on celery and cucumber, if these significantly take away pain and swelling this is the first step on the Paddison Program. You can also watch lots of testimonies on YouTube
Yeah. I tried a 3 1/2 day water only fast and didn't feel any relief whatsoever. Not sure how celery and cucumber would make it any different but I could try I suppose. I've tried numerous diet restrictions and never felt any bit of relief. I don't the diet thing works for only some people. When I can afford to do so (requires energy to prepare meals and more money) I will try the Paddison Program. Thanks.
Have you had any counselling for the depression & anxiety? If you are permanently worried & tense it doesn't give the meds a chance to work.If you can get your mindset into a better place you will be in a better place to cope with this horrid disease.
It can take a fair while for any of the Dmards to be effective, so don't give up........most on here have had a long journey to get any relief....but most of us get there in the end.
Thanks for the suggestion. I am definitely stressed.. mostly because of the pain of course. I'm also constantly worried about money since I had to change careers. I now work from home and only make $25k a year. It's not enough to survive on, so I'm slowly falling into debt.
As I feel worse every week, my ability to work becomes less and less. It's a scary thing knowing that I may be homeless soon and will probably have to discontinue all of my meds because I simply can't afford them because I'm unable to work. I'm a very hard worker, but this disease is making me helpless.
I try yoga, meditation, etc. though unfortunately none of it helps much and isn't going to stop the financial worry or get my mind off of the constant pain. I wish it did, but it doesn't. I've also tried numerous drugs (Effexor, Lyrica, Cymbalta, Trazadone, etc). I appreciate your suggestion though. You're definitely right that stress doesn't help. I just can't seem to minimize it.
There are new biologics that have come on the market. My doc says to try and give the drug at least 6 months if not 9. But if it's really doing nothing at all maybe time to try the next one. There will be mire over the next few years as well so don't give up hope. Feel your pain. Good luck and all the best
Yeah, my doctor is saying to give the MTX and Enbrel longer. I'm confused though because the drug maker's own websites say they should be working by now if they are going to work. I can't imagine why the drug makers wouldn't want people to stay on the drugs long as possible (more money for them). I'm going to give the MTX and Enbrel a bit longer I suppose. It's hard to believe I wouldn't be feeling any better from them, rather than worse. Did it take you awhile to feel some relief? Thanks for your input. I appreciate it.
I am so sorry Needforname that nothing seems to be working, you said you've tried everything. Does this mean eliminating dairy and gluten too? Have you also checked your thyroid function? ( compleate thyroid panel not just TSH) Estrogen-progesterone balance. Supplementing natural progesterone often has a good effect.
Like you I feel I didn't get help from LDN. Used it for nearly two years. I have experimented with many nontoxic alternatives. Niacinamide (B3) is a vitamine that has many beneficial effects when taken in larger doses. For me it had a calming effect, sleep deep, brain very clear unfortunately the clinical dose for RA was too much for me. Made me nauseous. Am still taking 500mg daily because of all good benefits. I am also on a diet that supports the production of cellular energy and on certain supplements. Now I have added infra red light therapy as a new experiment and I must say that this is really making a difference! After only one weeks therapy I feel a decrease of pain and stiffness and an increase of energy. I will send you the article on treating RA with infra red.
Hey Simba. I have tried going gluten free and eliminating dairy. I didn't even feel better from a 3 day fast (water only) which is suppose to offer some pain relief if food is the culprit.
I did purchase some b3 a couple weeks ago after reading about your experience with it. Because of the many meds I'm on and because I also have an upset stomach, I don't dare take a high dose yet though, so I just started taking 1 pill a day and will increase as I can.
Regarding thyroid function... I remember asking my doctor about this and she said the blood work we had done didn't show any abnormalities. Maybe I can convince her to try a full thyroid panel if we haven't yet.
I've thought about the red light therapy too, but doesn't it take a long time on each body part? I can't see spending hours a day holding a light on every body part that hurts (which is pretty much everywhere). I also don't have the funds to buy stuff like that right now. When/if I do, I'll certainly consider it though. Thanks! Glad you found some relief.
Good luck with the B3. I think it is a good idea to increase real slow. Did you have a look at the red light link? Actually the treatment time is quite short 30s-1min per hand feet 1,5m 4m per knee and shoulder. 30s for face and neck. This is with the stronger device. The funny thing is that in the evening you feel like you've spent a day in the sun. I do the treatment in the morning. Do have another look at the link, my hands already show a difference and am slowly decreasing my aspirin dose. Feels like I have found something that really works!
I'm reading it now. Interesting. I'll have to buy one when I get the funds. It won't be any time soon though with my medical bills. My aunt bought one and told me a month or so ago that she had to use it for 20 minutes on each body part. The 30 seconds to 1 minute is much more doable. That's great that you are having to take less aspirin. I have a lot of jaw and teeth pain and take ibuprofen for that. Would you recommend aspirin instead? The ibuprofen, tylenol and advil all tear up my gut pretty good. Especially on top of the oxicontin and oxicodone I'm on.
I had jaw pain that went away just with one red light session! I don't know if you read my link on the benefits of aspirin (?) I used to be quite hooked on ibuprofen. After learning of all its ill effects and reading about aspirin I no longer use ibuprofen. I would certainly try aspirin. Best to buy the powder, disolve in water and 1/4 bicarbonat ( soda) this way easier on stomach. There is actually also new research that the erosive effect of aspirin in gut is in fact much less than believed. Good luck with everything, hope santa thinks of the infrared light😊xx Simba
Thanks Simba. The reason I use Ibuprofen is because it seems to work better for my jaw/teeth pain, but after experiencing worsening stomach issues lately I may give the powdered aspirin a try.
The tylenol in the oxicodones I'm taking definitely doesn't help the gut either. At least aspirin has benefits (like helping fight cancer apparently). I have some white willow bark. Have you tried that instead of aspirin. I've researched "white willow bark vs aspirin" but couldn't find much conclusive evidence that one is better than the other.
The wwb is in fact milder on the stomach. Did try it. Bought the bark and cooked the tea. It's a bit of a job. Don't know if pills or caps have the same effect. Do know that sports people do use it a lot, so it's just not a fad. I take alkaselzer 3-4x day. It has 350mg aspirin in one dose with the alkalizing effect included. Works quite well.
Something that may also help your poor stomach could be Colostrum powder. I have posted about it before, you can google. It really has a calming effect and all natural. You take a scoop in the morning on empty stomach. I sometimes take it last thing before going to bed. Really worth a try. The other thing for calming gut is definitely bone broth. I get the bones from the butcher and then cook them for 48 hr. Put in one cup containers in freezer and drink one cup a day. When you make a big batch it will last a long time and this is really worth doing. The bone broth gives you really so much good stuff and does wonders with your gut.
One more miracle thing for gut health for me has been my daily carrot sallad. Just grate a carrot mix with abit of vinegar or lemon juice, salt and olive oil. Eat it every day and you will really be surprised over the positive effects. xxSimba
Hello, Being diagnosed with sero-negative RA a year and a half ago, means your only a year and half into your RA treatment. I know it may seem a long time, especially if you are suffering, most people have literally years of what I call the 'medication-merry-go-round' and if you get lucky, then you will finally find a drug that actually gives relief and better yet, can put you into remission.
It took me years after diagnosis to find a drug that worked, I went from crawling on my hands and knee's to remission. I have been through all the DMARDS and several Biologics before trying Enbrel. Enbrel wasn't a fast magic bullet, but I did notice 'some' relief within the first few months. I was on Enbrel for about a year before I went into remission.
Have you tried steroids? I personally see these as a very last resort, but they can help you to get through the toughest times when you are running out of options. I took steroids after an bad allergic reaction to Humira and was waiting for my insurance to approve Enbrel.
I noticed you use or have used Cymbalta and Lyrica so my thought is you have more going on than RA alone. You mention that you have had pain for 15 years. Its not uncommon to have more than one autoimmune disease, this can sometimes confuse doctors because your symptoms will resemble many different possible diseases. RA can sometimes be difficult to diagnose, and once diagnosed, sometimes later on, doctors will tell you that it is not RA but some other form of arthritis or autoimmune condition.
Many of us have been at the point of desperation, the breaking point where we cant take any more of this, we get mad and frustrated, we feel sad and defeated, we have been to the end of the rope. You are not alone. Your doctors are the ones that should be telling you what is next, if they are not, I would ask them so that you have some direction of where your care is going, so you can have some peace of mind.
Thanks for the input and sharing your experience. I appreciate it. When I said I was diagnosed almost 2 years ago, that doesn't count the more than a dozen years of chronic pain before diagnosed. So my patience has definitely been tested more than just a year.
Sorry to hear about your experience with this horrible disease. May I ask... how do you pay your bills while waiting years for proper treatment? I currently can barely leave the bed. Luckily I work from my laptop now, but I don't make enough money. My wife is left handling many tasks. We are now in debt and in fear of not being able to pay our bills because I can't work as much and can't make enough to share the financial burdens.
Regarding what's next... my doctor just tells me to give the drugs longer. We are waiting for insurance to approve infusion of Enbrel.
Regarding the possibility of having other auto-immune issues, I'm aware. I've been tested for lupus. Not sure what else I can do other than follow the doctors wishes. They won't let me do antibiotics. I've been tested for lyme. My anti-ccp levels remain extremely high (2,400). It just seems that the MTX and Enbrel should be making me feel slightly better rather than worse. How long did it take you before you actually noticed slight improvement?
You mentioned steroids. I tried Prednisone 2x. Each time they made me so sick feeling (upset stomach, acid reflux, extreme anxiety, anger, overall crappy feeling), so I quit them after a week each time. The doctors claimed that the steroids would "definitely help" with the pain. They seemed very suprised that they didn't. They said the same about the Enbrel and MTX and Lyrica and Cymbalta. They apparently have a lot of faith in these drugs. The fact not a single one has helped is odd to me and makes me wonder if I don't have something else going on.
I often wonder if I possibly have a dental infection, which could maybe cause infection that triggers the auto-immune response. If the infection continues, it could explain why the drugs never work. I just can't go start pulling teeth though. It's a never ending experience of not having any answers, but only questions.
I completely understand that my situation is not unique as you say. I just don't know how people can survive if they can't pay their bills. I certainly can't afford rent, food and medical expenses on disability.
My heart really goes out to you, not knowing what exactly is wrong, not knowing why drugs are not working, not knowing if you can pay the bills and doctors giving you a ‘non answer’ that really doesn’t answer the question. A life of uncertainty just adds to the stress your mind and body are already dealing with.
I got very, very lucky. When ever I was not at work I was in bed in serious pain. I had to literally save up every ounce of energy to get through a work day. I was permanent part time and had days where I didn’t have to go into work. I covered it all up because I was afraid of loosing my job. I thought I managed to fool everyone and I did fool most people. My supervisor was the only one who noticed anything was wrong.
My supervisor happened to come by my work on her day off. She was in a vehicle with a family member. I was unaware I was being observed as I walked from out group home to another building. The family member said “hey look, there’s one if your clients” ( I work with disabled adults) my Supervisor told her ‘that’s not a client, that’s my staff”
Not knowing I was being observed, I let my guard down, I was limping and walking very slowly. The same supervisor is also the only one who commented when I lost more than half of my long hair that fell out in chunks. I never disclosed anything and it was only years later after I found Enbrel and went into remission did the Supervisor tell me about the day she saw me limping and her sister thought I was a disabled client.
I eventually got full time and only because of Enbrel can I work. So I got lucky in finding a drug that works after two years of many, many drugs. All my drugs are covered by private insurance plan I have through my work
I noticed some improvement with Enbrel after a few months but not until I was on it more than a year did I go into remission. The biologics are funny in certain ones work for some people but not others. If Enbrel isn’t the one for you, you have lots of options.
I’m now in s new chapter. I was diagnosed with Crohns last March and basically forced off Enbrel and just had my first Remicade Infusion yesterday. Enbrel works for RA but not Crohns. Remicade is designated for both RA and Crohns - Remicade to treat Crohns is given at almost double the dose to treat Crohns and must be prescribed by a Gasterontologist as my Rheumatologist can not prescribe the strength to treat Crohns. I’m terrified this disruption could cause my RA to come back, as there is no guarantee it will even work for either disease. My Rheumatologist said “it’s worth the risk” and my Gasterontologist says “I have to take it, otherwise Im going to loose my bowels and have a bag” even then my Crohns will still need to be treated with Remicade, as it’s a chronic lifetime disease.
We are all at the mercy of doctors hoping they know their stuff and are giving us their best care.
I can only say, please don’t give up. There are lots of different things to try if Enbrel isn’t your drug.
dunno if useful or not but optibac 4gut health was recommended 4 son [ibs] and daughter [hyperthyroid] and seems 2have helped both; will be trying 2 improve my own microbiome now xx
fair point, tho' only optibac was recommended [at academic diet / autoimmune disease conference, after which i changed many thinks]. good luck n good health 2u
Interesting. I can't seem to find that particular product here in the United States. Any idea where to buy? They don't appear to be on Amazon. I checked the manufacturer website and am not seeing that particular product there either.
Thank you. It's very pricy but maybe there's a reason for that. I currently take NOW probiotics but don't notice any benefits. I've tried many brands with no relief really, other than acid reflux relief. I'll give the OptiBac brand a try when I can afford it. I see they don't have the "4gut health" here in the United States, but they do have different probiotic options under that manufacturer. Thanks for your suggestion and the links. I appreciate it.
yes it is pricey but the medic leading the conference was v specific [and not connected to big pharma - m.d and ayurvedic medic. btw i only use drink etc from glass bottles [no more plastic] too. brekkie here 2day is 1/2 avocado, lettuce, grated carrot, onion bhaji, apple olive oil n egg. i avoid grain yeast legumes dairy, eat veg, fish rarely lamb or chicken and smaller amounts 4x a dsy to avoid acid relux. banana a no-no -sinus maker
Just a thought - many probiotic products are very high in sugar. If my hunch is right and sugar is the worst inflammatory agent, then whatever good probiotics might be doing could be 'undone', so to speak, by the sugar... I eat live, plain yoghurt as my 'probiotic'.
I'll have to check. Thanks. That's what's so confusing about taking mediation or supplements. Many of them don't say. When I went soy, corn, gluten free, I found it difficult to find probiotics and vitamins that didn't have any of these things. The ones without are usually 2x the price. I'll check. Thank you.
p.s. I never realized sugar was like gluten, where even a tiny amount can cause issues. I always assumed that as long as sugar was reduced dramatically, it would be ok.
It may not be like this for everyone, or even many people. But I am now absolutely convinced that some of us are 'allergic' to sugar, or 'sugar intolerant', just like people are allergicor intolerant to dairy, gluten, shellfish, etc. It's funny we don't think of sugar this way, and even people whose bodies *definitely* can't handlesugar - who used to be told to avoid it completely - are no longer encouraged to give it up. Even thoughit's bad for them. It's quite odd, when you think about it... Anyway, it's worth a try...
P.S. I had a dried fruit binge 2 days ago (Christmas temptations) and again, my hands and knees are sore
I agree... it is odd that sugar is not on the list with dairy, gluten, etc. My wife brought a bunch of various Christmas cookies home from work. Talk about temptation. Chocolate chip, no bakes, rice krispee treats. Cravings are intense. I'm sure it gets easier. I remember going sugar free years ago and did find it got easier. Have a good holiday weekend
Hey Hobbits. It's strangely comforting hearing a story like yours, where you too had to wait awhile for relief. The reason I'm at the end of my rope is because it's been 15 years, and I have tried more than just Enbrel. The fact that Enbrel, MTX, multiple ssri's, LDN, and Prednisone, diet changes, accupuncture, and dozens of other holistic approaches haven't helped one iota is what is mind boggling to me. I guess I just have to try some new drugs and wait another 6 months. Just not sure if I can make it that long. I'm losing my ability to work. The drugs make it tough for me to even communicate with clients. I sound like a fool because I can't think and am very irritable. Not to mention the 3 hours it takes me to even get out of bed in the morning.
Anyway... enough of my whining. I just wanted to emphasize that I've tried many things already. The fact it took you months to feel the Enbrel working is interesting. It seems for most people it works in 3 months or doesn't. So do you think I should keep with the MTX and Enbrell even though it's been 9 months for the MTX and 5 months for the Enbrell? Even though I feel worse than when starting them? Thanks.
It sounds like Enbrel isn’t working for you as I would think there would be at least some change by now.
If your feeling worse, Then this combination isn’t working for you.
I would talk with your Rheumy and ask if you can try a different biologic. Tell them what you read about Enbrel and what is written by them about the timeline of it working. Hope your Rheumy will listen to you and agree as what you say makes perfect sense. Wishing you good luck and prayers that you can get the right meds that you need.
Thanks. Yeah, I already have told her that the drug manufacturer documentation says 12 weeks. I told her my thoughts but she wants to try infusions. Been waiting 2 weeks to hear back about the infusions. Apparently it can take some time waiting for insurance to yes or no the move.
Hi, I was unable to take mtx it made me very sick Enbrel was great no side effects but stopped working after I had to stop taking due to taking antibiotics. When I went back to taking enbrel again I didn't get the same results and my rhumey stopped the med to see if another med would work better. Good luck with your meds.
Interesting. I was thinking about stopping the RA drugs so that I can try antibiotics, but after reading your comment I may hold off. Best of luck with you as well.
Sorry to hear the meds you are on have not worked for you. There are the biological infusions to consider as Enbrel, Humira and oral DMARDs before then lost their efficacy for me although Sulpasalazine and Mtx alone worked well for many years. I thought I was not going to find something that worked to hold back the inflammation and pain of the RA but Rituximab has done this very well for me. Hope you can talk with your rheumatologist soon about what to do next. Good luck.
Glad you found something that works for you. It's crazy to think that once a drug is found to work, it can then stop working. What happens when you've exhausted all of the drugs (when they stop working or never worked to begin with)?
I have talked to my RA doctor. She's useless. I see her every 3 months and she just tells me to stay on the drugs that aren't working, even though they should be working by now (according to the drug maker's own websites). Regarding the infusions.. we are still waiting for the insurance company to approve I guess. It's been 2 weeks and I still haven't heard anything from the doctor.
I'm seeing a new RA doctor in a couple of weeks. I don't know how much longer I can hold out. I can't work as much and can't afford my bills. This isn't life.
I'm glad you are seeing a new RA doctor consultant as this isn't right for the other to tell you to stay on the current medication that isn't doing very much if anything. Surely the current RA doc shoulld see your blood results aren't as they should be as RA isn't being controlled? You asked about what's left to try? Quite a bit I should think! New medications are coming and more planned .. We have biologic infusions which are very successful if anti TNFs have failed and I don't think you've exhausted those yet, but if you could be eligible on your health scheme to be given something such as Rituximab then it's worth a try. It's got me moving again. There are JAK inhibitors which are now in use (oral biologics) and no doubt more new drugs on the horizon. Don't give up hope but don't stay long on what isn't working and fifteen years to be waiting for something to work is not acceptable. I hope the new RA doctor says to you .. Let's try get approval for something new. As others have said above .. You are usually told to not take MTX when on antibiotics. Good luck for your meeting.
Awesome advice. Thank you. I agree that it's probably best not to try the antibiotics while on the MTX. I guess the infusions are next on the list for me. Just tired of waiting. Knowing i have to wait 3-6 months for each drug change is tiring, especially when it's tough to work with the mind and body not working properly. Anyway... thanks for the feedback. It's good to know there are a few more options for me. I just assumed that since the prednisone, ldn, mtx, enbrel, and numerous other drugs haven't worked, nothing will, or maybe I have something other than RA. Especially since the prednisone didn't even help. It seems it helps everyone for pain, at least temporarily.
Just wanted to add that I'm really sad that Prednisone hasn't worked for you as it is most people's saviour when they are changing meds and inbetween in no man's (or woman's land!) or awaiting starting at the beginning after diagnosis. It was friend and foe for me in 2015. Got me moving like magic within a day but I gained a lot of weight over ten months I wax on them and some I haven't been able to shift easily. A trade off between the benefits and the spare tyre! That's so not me but I was in such a state I'd have taken anything. Dint hesitate to ask if the new rheumaolotogy doc will recommend an infusion. You deserve to have a try. It could be the one that works so never give up. Say how this is impacting your life so badly re work and bills. Your mental health too (even if you are quite composed and sound of mind which I can tell you absolutely are, you can still feel down and despondent and it knocks your confidence.) I'm a very patient person but I would have rioted by now had I been told to be patient after 15 years. The way it usually works in the UK is if we've tried two DMARDs (and they failed/we had a bad reaction/side effects or they just lost efficacy over time/years but still served most of us well!) and one of them has been MTX, then we are eligible for anti TNFs, dependent also on the DAS score (measuring our inflammation.) Then if two of those fail us we can go for an infusion. It may be different for some here in the UK dependent on their individual health issues, but that's generally the norm. As you're already at anti TNF I would hope your rheumy doc will say ... let's go for an infusion. I cross my fingers for you (and I can do that these days since having Rituximab!)
Thank you. Yeah, it's very odd the steroid didn't help. Makes me wonder if I have something else on top of the RA. I'll push for the infusion. Best of luck to you.
There are always other options, Needforname. Just no quick fix. So patience & stoicism are necessary. Especially difficult if you have the dynamic, driving, ?choleric temperament of many businessmen. Consider having a dental check-up to clarify the picture, also the possibility that you are depressed & may need medication for that.
Thanks for the feedback. I have been patient. I'd say 15 years in chronic pain with no answers is the definition of patience. Not sure how much I have left in me to be completely honest. I've also taken numerous drugs, do yoga, etc for anxiety. That stuff doesn't stop anxiety when there is chronic pain.
So sorry you have been strangely suffering for 15yrs. but not investigated earlier, only addressed, diagnosed & commenced medication 2yrs ago. Sincere good wishes for the future. I trust a dental exam. + new rheumatology team will get you off on a better track.
You do need a plan B when the drugs stop working or never really start working. Why no one talks about this plan B and what in fact it could be, is strange.
so sorry 4u - wish i cd help but don't know what 2say. MTX gave me probs, now on sulfasalazine but side effects , pred helped but they insist i shd not take it now [tho 15 yrs didn't lead to osteoporosis as they predicted]. diet seems 2help 4me - no grains, no alcohol, no dairyno legumes tho'. wish u hope n improvement xx
I had no luck with methotrexate, all it did was damage my lungs causing extreme breathing problems. I went on to rituximab infusions every 6 months and, up to now, they've been very successful with my RA at the last consultant visit being declared in remission. I can't say the same for my lung problems. I hope you find something that works soon.
Dang... lung damage is scary. Hope the damage is reversible for you. I'll have to look into rituximab. I think the next thing for me is infusions. Thank you.
I know drugs don't work same with everyone.I have tried 3 biologics without any effect.my best combination is sulfasalazine, steroids,hydroxychlorine and Pregabalin but still in loads pain everyday.was told best could get for me.life sucks at times.have other health problems too which don't help thou.
Sounds like you are not in UK if you are waiting for insurance help. We take free health for granted and don't know how lucky we are really
Thanks for the reply. I often wonder if I have something else going on besides RA. It makes no sense that dozens of drugs have't helped me. Well, 3 RA drugs, prednizone, and a bunch of SSRI's, etc. Nothing helps. 15 years of no answers is killing me and killing my soul. Sorry to hear you've experienced a lot of pain as well. Regarding insurance... I actually have great insurance. The doctors around where I live just suck and only know one thing... how to prescribe drugs that don't work for me. Anyway... thanks for your time.
Hi Needforname. I haven't read all the posts so I'm sorry if I repeat what someone else has said. Two things:
I think maybe you weren't on the gluten-free diet for long enough. I have sero-positive RA (positive rheumatoid factor, high ccp values etc) and the onset was so painful I thought my life was over. However, I have been managing mainly without meds for years now. At first I was on Naproxen 750 (really screwed my stomach up but got rid of the pain) and a low-dose steroid (for mobility). I was more than a year on the diet before I felt any real change, and it was very restricted. No gluten, no dairy, no oats, restricted sugar, no packaged foods. Giving up corn made a big difference, too. My staples were fruits, rice, buckwheat, quinoa, veg, oily fish (for the omega 3s), a bit of meat and poultry, eggs, lentils etc. I have a bit of goat or sheep cheese now and then when I feel the need, 85% black chocolate now and then. After giving up corn, I was able to stop taking any medication (though I carried around anti-inflammatories for emergencies). This diet seems to keep me ticking over without much pain or stiffness, unless I go to a very humid place or get very stressed, when I can get a flare.
During a recent flare I had to see a rheumatologist because I could hardly walk, and she talked me into trying Methotrexate. (It's true that, with the diet, although I'm virtually pain-free most of the time, there is some visible damage). I mention this as being possibly of interest to you because one of the immediate side effects was terrible DEPRESSION. I only took it twice because, although the pill was only once a week, the depression lasted nearly all week. Yes, I know we all have reasons to be depressed with this terrible illness. But I'm just wondering if the depression you talk of as being something separate from your meds, might not be a side-effect, or at least worsened by the Methotrexate? It's worth considering the possibility...
Good for you You had a plan B that in fact worked better than the meds. You are not alone in succeeding with dietary modifications after meds have failed.Not having pain and not being forced to take toxic meds is really something that is seldom achieved with meds. You still have progression, you say, but so do many on meds. If I was to chose between your plan B and meds I would chose plan B any day.
Yes, Simba, the fact that, as you say, some have progression of the disease despite years of meds is one of the things that makes me hesitate to start them. But I do hate having visible signs.
I think perhaps instead of thinking meds or no meds it's more important to pick meds that make a diffrence and combine with dietary measures that support your metabolism. Getting inflammation level down any way possible is the key. It is also a bit aggravating that there are no real statistics published on how often mtx alone or together with other Dmards infact decrease progression 60% benefit is a number that often is stated, but how much is stll a question mark.
Very few studies comparing Dmards. Here one at least. Think it would be a good thing to discuss with your doc. Comparing effects of different treatment strategies and the reasons why the doc think this suits YOU best.
Yeah, I'm going to have to discuss my options further. The 10 minutes I have to discuss everything during the appointments doesn't allow for a lot of questions unfortunately. I usually go in with a long list and only get to ask a couple of them.
Got a call today from my RA doctor's assistant. She said the insurance denied the intended infusion therapy we were going for. The insurance company said I first need to try a newer and less expensive infusion drug. Have to wait again for approval though. I'm going to have to do some research on infusions now. It seems I don't really have a choice with what drug I want to take, since it's dependent on the insurance decision making.
I'm curious if you've ever tried an infusion biologic? Thanks.
So sorry that patients are so often treated like cattle. Ten minutes is no time at all! This is one reason why I'm keeping away from meds. I do not ever want to be in a situation where different meds are tried on me without any real support from doctors, meds perhaps causing new problems and taking the risk that I will year after year go on trying to find a med that works and eventually fail. There are ofcourse those who find nearly symptom free periods with meds and can manage their lives fairly well. These are usually young people. Their bodies are stronger and can much better cope with the stress of meds. Starting this almost, it seems, never ending experimentation with meds with all their adverse effects, is someting I am too old to cope with. I have never taken any RA meds so far and am coping quite well. Perhaps if one day I find a rheumy that would offer me Embrel to try without dmards I might take the risk just to see if it really gives my old life back like so many have said. We all have our journeys and our diseases and our individual choices should never be compared or evaluated against each other. I hope you will soon find what feels best for you.xxSimba
Love hearing stories like yours. Any way to get off the meds or reduce them is a good thing. I too think the drugs contribute to the depression. The pain is the main culprit, but I'm also convinced the meds are to blame. I will be trying a restricted diet again soon. With my extremely weak appetite, I find it very difficult to eat as healthy as I should. I barely have the energy to stand let alone make meals. Because of this I get lazy and prepare quick meals. I've also never noticed any correlation between diet and pain. Maybe like you said though, I just need to stick with it longer. Thank you.
Like I said, we have reasons to be depressed! And yet the MTX depression was like nothing I've never known. I hope your new rheumatologist will give you his/her blessing to lose that particular drug, and maybe some of the others as well!
If you have the courage, try and stick with the diet longer, but also maybe be more restrictive (I don't know if you eat dairy, corn, oats and other possibly inflammatory foods - it's all about inflammation. Also some people go wheat-free and don't realise there's gluten in rye, barley, spelt etc) and bring foods back in one by one to see if there is a reaction. I live in France and followed a protocol set out in a book by a Dr Seignalet (I don't think it's translated - maybe it needs to be?), backed up by a free forum, where people posted recipes, rants and advice. It's difficult to do these elimination diets if you don't have any support - I don't just mean family and friends, though their support is certainly necessary, but support from someone who has experience of elimination diets. That is really vital.
There is a lot of info out there for free in English. I think the 'Paddison program' is probably good, and you can get a lot of free info from his site. But: some say to eat lots of fat and meat (Mercola, for example) alongside the gluten-free diet; some swear by paleo-veganism (the famous Swedish study, done in scientific, double-bind conditions, proved a large percentage of compliant RA patients responded to a gluten-free, meat-free diet); some say no carbs. It is confusing!
If you are motivated to persevere with a dietary approach, it would be so good if you could find a naturopath who really knows his/her stuff, particularly in regard to auto-immune diseases. Sometimes you need to be encouraged to go on, talked through de-tox (Herxheimer) reactions, asked if you've checked the label on something you habitually eat that you think is 'innocent' etc etc.
Good luck, whatever you choose to do, and I wish you better luck with your next rheumatologist.
Thank you. I may try the Paddison Program if I can get the energy to prepare the meals, etc. That's the tough part. It's so time consuming and requires hours of preparation each week. The extreme pain, nausea, lethargy, inability to stand for long, and lack of time and funds to eat healthy makes it very difficult.
It is very confusing because some say eliminate all oils, some say just eliminate dairy and gluten. I have a book by Dan O'brien called "The autoimmune fix" and he has a different stance.
I suppose the best bet is to start with a very basic diet (Paddison Program) and slowly introduce foods back. The strange thing is that most of these diet proponents (including Clint Paddison) claim that a 3-4 day fast should result in reduction of pain. I tried a 3 1/2 day fast last year (water only) and I didn't feel any better at all. Other restrictive diet efforts didn't help either.
I'll give it another try though and try to give it more time. Thanks for your input. I appreciate it.
Needforname, I found this discussion discussing the antibiotic protocol (or Brown's protocol) which might interest you. (You have to scroll down a way).
Interesting. Thanks. My doctors won't try the antibiotic therapy. They claim that it's an "older method" and not as effective as current drug options and that it takes too long and that it's only for early onset therapy. Which is all contradictory to certain publications I've read which show about equal effectiveness and higher safety than drugs like MTX. I will certainly read this though. Thank you.
It seems like fasting is the most effective dietary approach, but it's not really do-able all the time, is it? (Well, I know I couldn't do it). But food for thought...
Bonjour, JoParis. 👋 Much appreciated information you’ve kindly shared. 🙏 If I may ask, could you note the web link to the free forum you’ve referred to? Thank you kindly, JoParis. 😌 🙏 🍀 🌺 🌞
You can google Clint Paddison - he has tons of stuff on the internet, and though he is selling something (his program, books and consultations), you can glean a lot of information for free.
But as for a forum discussing dietary approaches to RA in English, I don't have any particular one to recommend, but i'm sure there are some out there!
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It seems to me it has reduced my general inflammation.
MTX not working
Time to give up on Enbrel?
Anyone on Enbrel and have also stopped MTX?
MTX back on
Do you have Rheumatoid Arthritis AND root canal treated teeth??
