Hello. I'm a 36 year old male. I have recently been diagnosed with rheumatoid arthritis after years of chronic pain and health issues. My RA doctor came to this conclusion after I tested positive to the "anti-ccp" blood test. Normal levels should be under 20... my levels were 1,600. Though my inflammation marker blood tests (ESR and CRP) were normal.
With that said, I have questions. I would ask my doctors, but unfortunately they both told me that they can no longer help me since I refused their recommendation of going on methotrexate. I tried finding answers online, but have been unsuccessful. Anyway... here are my questions:
1) I've been on LDN 1.5 mg for 2 weeks now, with no noticeable relief. If anything, I maybe have a slight more energy. I tried upping the dosage to 3 mg, though I began feeling a tightness in my chest, and a feeling of adrenaline rush. Has anyone else experienced this when upping dosage? I've since gone back down to 1.5 mg. Also, how long did it take you for LDN to work?
2) If my inflammation marker blood tests (ESR and CRP) show negative, and if a positive "anti-ccp" result can remain even after RA has been treated, how am I suppose to know if my body is being damaged further or not?
3) Can anyone recommend any pain medication that actually works? Since hydrocodone style drugs can not be used alongside RA drugs like LDN or Methotrexate, what options are there? Over the counter pain meds are completely worthless. Kratom no longer helps. Massage, acupuncture and tens units only offer temporary relief.
I've lost my will to live. It has now been 14 years of chronic pain, yet I never find relief. I continue to experience stomach issues despite intestinal and stomach surgery. I have lichen planus and adult acne, erectile dysfunction for years now, all over body pain especially in my lower back, dry skin, brain fog, anxiety, etc. I've lost jobs, friends, and enjoyment because of my becoming reclusive due to this constant agony.
Anyway... any help would be greatly appreciated. Doctors have not been very helpful. Thank you kindly.
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Why have you refused MTX? I know of people who have been taking this for years with very few side effects. I have PsA and my inflammatory markers are rarely raised, however I have swelling and pain. I don't take LDN but have been taking biologics for a couple of years now. Clemmie
Thanks for the reply. I'm glad the biologics are working for you. Too much money for me.
To answer your question... the reason I refused Methotrexate is because I don't want to experience even more stomach pain, more hair loss, or more brain fog... all symptoms that the drug is known to exasperate. Not to mention the increased chance of getting gasto-intestinal / brain / heart disease.
Also, I've witnessed the mouth and stomach sores that Methotrexate caused with my 6 year old nephew who's been on the drug for a year or so now.
It's not that I am totally ruling out Methotrexate, it's just that I figured I'd try LDN first, considering it seems to be just as effective for many folks, but with limited side effects. It only makes sense to try it first. And unlike Methotrexate which diminishes the immune system, LDN enhances the immune system.
Also, I am very skeptical of most drugs (especially those with many side effects). I took Accutane when I was younger, and it completely destroyed my body (as well as many others). Doctors also told me for years that Prilosec was "very safe". Now they're finding that's not really true. They put me on the drug for my stomach pain, even though I told them I never had heart burn. When I tried coming off of the drug, my body became conditioned and I was unable to for many years.
In other words... I have very little faith in the medical or pharmaceutical industry. They have let me down for half of my short life. I plan on giving the LDN about 2 months. If that doesn't work... I'll have to resort to Methotrexate.
I've read where certain folks have experienced relief via diet changes. I've tried this in the past with no success, though it does make sense to try to target the cause rather than mask the problem.
I understand your reasons for not wanting to take MTX but not everyone gets side effects, you won't know unless you try it.. Also, the reason why you have pain is that your immune system is already working overtime, that's why we have the pain, inflammation, destruction of joints, etc. We need it to be damped down not to be increased/enhanced. Of course, we all know that drugs have some side effects and aren't always the answer to our prayers. But I have suffered pain for more than half my life and have only been treated for the last 3 years. I just think of all those wasted years when I couldn't move because of the pain so I'm extremely grateful for the treatment now. You obviously have suffered too, so in your shoes, even though it's scary, ( it took me days to pluck up the courage to try MTX lol, but when I did, it really wasn't bad.) I would at least try the medication, and then if it doesn't work for you, you can cross it off and try something else. Clemmie
Hey Clemmie. I used the wrong word with "enhanced". LDN apparently allows the immune system to regulate itself. So rather than suppressing it, it allows it to even out. It is a very effective and very safe option for immune issues. But like methotrexate, for some folks it takes a couple months to work. The reason I chose to go the LDN route before Methotrexate, is because of the very low side effects. If it doesn't work, I'll go the route of Methotrexate. Thanks for the reassurance. I appreciate it.
Some of symptoms seem to relate to a thyroid condition, have you been tested for this or even if you have, perhaps a look on Thyroid UK may help. We are all so different and have many complex conditions, we all react differently to drugs. Hopefully someone on here can advise you as you take LDN. Best wishes to you.
Just to add I was changed to Methotrexate 10 weeks ago from Azathioprine, only on 10mg as on Humira for 8 years. Humira controls my RA, together with low dose steroids. Did get an upset stomach at first for a few days this has got better over the weeks and ok now. Also find taking methotrexate at night is best for me, so I sleep it off. I am also on lansoprazol a PPI for a hiatus hernia so think this may help with this drug as well. I do hope you find a solution for you, all trial an error. Good luck, all these drugs take time to work.
I can't answer two of your questions as I'm still puzzling over them for myself. But with regard to LDN, I found if I increased above 3.5mg that I experienced inflammation in my hands and adrenaline rushes. In the end I accepted that I don't need 4.5mg, so most days take 3mg or less. For some people, results are noticed very quickly, but for others the effect is more subtle and they say the only way to notice the difference is to stop taking it and see how much worse you feel!
Can't the consultant offer you anything else? My consultant recommended adding Methotrexate to the Hydroxychloroquine I was taking, but knowing I was very fearful of MTX, he also offered me Sulfasalazine at the same time. He left me to think about it. At the next appointment, I asked why he recommended MTX and he said that it was the "gold standard" and better tolerated by more people. He didn't say it was more effective, or had a lower death rate, just was better tolerated. So I declined it in favour of SSZ.
I can see you are knowledgeable about supplements. What about diet? For LDN to be most effective, a gluten-free diet is recommended.
Have you looked into Minocycline? You mention acne, so you may be able to get a prescription for it, even if your consultant won't prescribe it for RA.
I tried CBD oil for relief from my aches, but didn't find it very helpful. Shame cannabis itself isn't legal! You are too young to give up on life.
Yeah, I miswrote in my initial post. Yes, it appears to regulate rather than enhance like I mentioned. Unfortunately after 2 weeks it hasn't changed anything. I do feel a bit more energy though.
Thank you very much for the reply. I appreciate it. I wasn't aware of Sylfasalazine, but I'm researching it now as another option to Methotrexate. Yes, I have tried a gluten free diet. I may try the Patterson Program or a Paleo diet soon. I do eat relatively healthy, though there could be a food tolerance there. I had an allergy test done where they prick your skin with various foods), and it revealed a possible allergy to peanut, green beans, soy, corn, barley. Though eliminating these from my diet and re-introducing them seems to effect nothing.
In regards to the antibiotic for the acne, I went that route when I was younger and it was effective, though I often wonder if it contributed to my 14 years of stomach problems. Maybe a candida / yeast overgrowth or it wreaked havoc on my gut bacteria.
As for CBD oil, I wish it was legal in NY or I'd try it. Smoking weed doesn't really help. I do take hemp oil in my smoothie. I've also tried various supplements like MSM, boron, black seed oil, magnesium, zinc, pain creams, etc. Anyway, thanks again for your feedback. Very helpful.
You come across as someone who likes to be in charge of things - that may be a totally false impression, but that how it seemed! Perhaps if you did more research on the types of DMARDs there are and what effects they have, then you would feel more able to have a discussion of the type of treatment that you think might help you.
If LDN does boost your immunity then it is not something that is indicated for an auto-immune condition. So perhaps not the best choice?
Unfortunately, at this stage of the game, it isn't possible to tailor the treatment to the type of auto-immune arthritis that someone has, so ti has to be trial and error. But there are other DMARDs apart from Methotrexate. Have a look on both the NRAS site and the Arthritis Research sites and decide for yourself what you could try.
Hi OldTimer. Thanks for the feedback. I appreciate it. Yes, you are correct that I like to be in control of my health. The reason is a sever distrust in the medical field. This strong skepticism comes from 14 years of un-diagnosis and prescribing me toxic drugs that have caused permanent damage and wreaked havoc on my system.
In regards to the LDN, I mis-wrote about it "enhancing" the immune system, rather than "regulating" the immune system. It's a very effective approach for many people, and it's much safer than commonly prescribed meds. The reason doctors don't consider it, is because it's not pushed by the drug companies because it's an older drug that is very inexpensive, and because it's not FDA approved for RA. The reason it's not FDA approved for RA is because it costs millions for FDA approval. The drug companies won't spend that kind of money on an inexpensive drug. So it has nothing to do with effectiveness, but rather profits. What bothers me is that my RA doctor was completely unaware of LDN despite it proving just as effective but far less toxic. It should at least be considered as an initial option. I had to find an online doctor to prescribe it to me.
Anyway... I'm rambling here. Thanks a bunch for the website recommendations. I'll check them out.
I wish I could send you over a care package that would wrap you up in cotton wool and look after you for a bit. At 36 you should be enjoying everything life has to offer, not worrying about a range of health issues.
Anyway, I don't know much about LDN so can offer any experience with that. But it does seem like a sensible thing to try. As does adopting a healthier lifestyle. I'm not a fan of the ultra-diets or programmes as the only time i tried one it just made me so miserable that it defeated the purpose. The mantra I follow is "eat, not too much, and mainly plants" and try to steer clear of all processed food. But if I want an ice cream I eat one, and it seems to make absolutely no difference apart from mild pleasure.
I take loads of toxic drugs, and the benefit of my extremely healthy life style has been that I have virtually no side effects from them. We are each different, and I respect people's personal decisions about what they are prepared to take. And I guess you don't have classic RA symptoms so it does raise further questions about what's right for you. But the drugs have been so magical for me that I would urge you to look again at the options if LDN doesn't work. I could hardly get out of bed before I went on them. Hydroxychloroquine, Sulphasalazine, Minocycline and things like that. And remember you can stop drugs just as easily as you can start them. So it's not a permanent decision. But this is a scary disease that can damage you without you knowing if uncontrolled.
For pain, have you tried the other non-chemical approaches? Exercise, heat, cold, compression, mindfulness and so on? Exercise has really been my saviour.
Hi HelixHelix. I appreciate your concern and advice. I agree with you that it seems these ultra strict diets seem kind of silly, especially since it doesn't really seem to matter if I eat extremely healthy or not. I still feel crappy. I have read where certain folks have healed themselves strictly through diet (ex: Clint Paddison Program).
Yes, I have tried cold packs, massage, chiropractic, exercise and so on. I've tried going gluten free for 2 months, I've tried numerous herbs and heal-all supplements like msm, black seed oil, passion flower tea, hemp oil, boron, aloe juice, magnesium, zinc, and everything else under the sun. None of it makes a noticeable difference which is odd considering the rave reviews for certain products.
I'm considering purchasing a Quell device, though I'm not getting my hopes up. Kratom was a miracle herb that worked pretty well for pain, though since I take it every day, it no longer works because my tolerance is so high apparently.
It's amazing to me how people are even able to make it to work with this disease. Luckily I work from home. Even then, I find it very difficult to get much done because of the extreme chronic pain. It's unbearable. With the RA medications, I can no longer even take pain meds, which makes it that much harder.
Is there any pain medication that you have taken that works? I see that you mention exercise helping you a lot. It doesn't seem to do anything for me, other than drain my energy. Stretching and light movement helps a tiny bit, but barely.
Anyway... thank you. Glad to hear you found relief with medications. If the LDN doesn't work, I'll go the route of Methotrexate. Thanks for the reassurance.
I am so sorry you had to go through the same experience as I had when diagnosed. I know exactly how it feels.
As AI sufferers we make our decisions concerning our line of treatment, hopefully with the help of doctors. The toxic meds offered to us do not cure the disease. It is we who are taking the risks with these meds, not the doctors. This is why knowing and understanding the risks is so important as is also knowing and understanding alternative, nontoxic treatment alternatives. This should be seen as a right every patient should have. It is by no means defendable to corner the anxious patient in a " take-it-or-leave-it" position. To your questions:
1. I have been successfully treating my RA ( diagnosed Dec. 2015) with LDN, AIP diet and supplements. Surveys and anecdotal evidence tell us that in RA the effect of LDN kicks in slower than in many other AI diseases, 4-6months in average. It is also seen that LDN with diatary modifications is more effective. LDN is seldom enough alone. I started as instructed with1,5 mg and upped my dose with 1mg per week. Now on 4, 5mg. It may be that you upped your dose too quckly. It is very individual how people react. To find the spot that works the best is by upping slowly 0,5mg and in case of adverse reactions go back and upp more slowly. I hope you have found the ldnresearchtrust.org web site where you can get all the information you nead about LDN.
2. The CCP antibodies in your blood predict with 97% probability that you will get RA. On the other hand your normal CRP implys that it really hasn't reached a clinicly diagnosable level yet. The negatve RF has a less dependable predictive value since 20% with diagnosed RA are RF negative.
The RA meds do not effect the root cause of the illness, only may help to control it, for variable time periods until they lose their efficacy. This is why the disease process is still there, but on a lower level and the CCP antibodies remain.
3. My RA is under control 80% but I still need pain killers at times. For me Naproxen has worked the best. I know that many on LDN use Tramadol, which is ok.
I really hope you take a look at AIP diet and do a bit research on Dr.Sarah Balyntine and Dr Terry Wahls who are both well known scientists and are the founders of AIP diet protocol and have both put into remission their AI diseases with this diet. An other name of interest is Tom O'Bryan and his new book " The Autoimmune Fix" Where he integrates new scientificly based research on AI to an understandable whole.
I wish all the best to you on your journey and you are welcome to send me a private message if you feel I can be of help.
Thank you so much for the reply. You have answered some questions that I've been unable to find answers to in dozens of hours searching the web. I wish I could return the favor somehow. Information is like gold to me right now, so I greatly appreciate your knowledge and feedback. It's great to hear that you've reduced your pain and have found some relief. I will try your suggestions and am ordering "The Autoimmune Fix" book now.
don't know if this wd help but just back from a 3 genertion weekend with daughter and grand daughter. Was driven there and back as hands wrists esp thumbs v swolloen and painful - but after 30 mins in cool pool swelling down and paid disappearing. Am off mtx and on to SSZ for abt 6 weeks and pin etc intermittent - cold pool was 1st relief. Hit the ice bucket - good luck xox
Thank you very much for the suggestion. I will definitely explore this idea further. I find that cold packs don't help me much, and cold showers make me tighten up which causes further aching. Though maybe I will try a larger ice pack while keeping the rest of my body warm. It's my neck and back that hurt the worse, so an ice bucket isn't really an option. Thank you for the suggestion. I appreciate it. Glad you were able to find a source of relief. That's great to hear.
I am so glad if I could be of some help. I know how bewildered you feel without support in such a hard situation. I do not know where you live but in USA you can really find good functional medicine doctors and clinics that can help you with the big picture. I found support from UK, abit closer to France, where I live. If you are interested I can give you the coordinates, if you live in the UK. Please send me a private message if you need the information.
Hey Simba1992, I'm in the United States. I've tried to find a holistic doctor, though found out that the only one around me was convicted of $960k in fraud and lost his license for years. I've been to many quack doctors in my days, so I tend to approach them with strong skepticism. Maybe an integrative or function medicine based doctor would be a happy medium. Thanks for the suggestion.
I hear and know your fear of mtx. I too read up on LDN and was told by my GP that LDN can help with MS not RA.
2 years ago I was glad when my rheumy put my on hydroxy. He didn't even mention MTX and I was glad. My Rheumy added Sulfa to my Hydroxy 6 months after my RA diagnosis. My RA symptoms and pain continued to snowball over the next year....I had to stop working and my jaw started to dislocate...still mtx was not offered to me and I was glad that my rheumy just upped my sulfa and added prednisone to my meds....Well , 2 years later and my RA is out of control.
I have a new rheumy and I am on mtx. I can now walk. My jaw stays on my face now....I can dress myself....The point I'm trying to make is that MTX isn't as dangerous as I thought. We are monitored to make sure of this. Please reconsider MTX. Your feelings towards it will change.
There are surveys and an abundance of anecdotal evidence that LDN does in fact help with RA but not in the same way as in MS, Chrons and FM, where results are seen usually much faster. For LDN to kick in takes much longer but once it does a continuous rising positive effect can be seen.
As for Mtx I am glad you have had so much help from this med and it is true that for around 50% this holds true but it does not alter the fact that for those the med does not help or causes side effects that makes life even more miserable. It is true that you can always stop the med but usually you battle with side effects for many months before and if you know for sure if your body has resigned to the med or still wants to get rid of it. It would certainly help if it would be possible to test somehow beforehand what patiens will react possitively to the med. Maybe this will be possible in the future
Simba is correct. I've read countless cases where LDN helped folks with RA. It is surprising that more doctors don't at least try LDN before MTX. It is less expensive, has many less side effects, and appears to be just as effective (based on reviews sites at least).
My doctor's had never even heard of it, which is mind boggling to me. Apparently the doctors only prescribe what the drug companies tell them to, with client rights taking a back seat. Just my opinion.
Glad to hear MTXis working for your. I'm sure it's probably relatively safe for most people, though I'm ultra skeptical of any "safe" drugs after Accutane destroyed my body and life. It is a bit reassuring though, that MTX is working for a lot of folks. Thanks for the reply
I really hope LDN works for you. Please keep me informed on how you are doing. It's not about who is right or wrong. It's about controlling this awful disease.
Hi Suzanne. I will try to remember to leave feedback if the LDN works or doesn't. Sorry, I didn't mean to come across that I was right and you were wrong. I sometimes go off on tangents lol, but I just wanted to second Simba's mention that LDN does work for folks with RA. Thanks... and hope you have continued success with MTX.
Hey Andrew12. Because many of the health forums and Facebook groups I belong to are full of people who have had horrible experiences with these drugs. They can destroy your liver, brain, heart and stomach. Not to mention hair loss, ulcers, etc.. It's even suspected that Glen Frey from the Eagles died last year from his RA medication.
To be fair though, I have read many favorable accounts. My skepticism stems from putting my faith in medically prescribed medicines in the past, only to cause me lifelong problems.
For example, when I was a teenager, I was put on Accutane, but was never told that it would leave me with life long dry skin and nasal pasages, or erectile problems, and worsened acne and living the rest of my life with stomach and intestinal pain despite surgeries.
The 6 month treatment of antibiotics I was on at the age of 21 was thought to be safe at the time. Now I look back and realize that may have been the culprit to my immune system being compromised (since most of our immune system is in the gut, and antibiotics destroy our good bacteria that support a healthy gut).
Prilosec was once though to be safe. I was on that for 10 years. Now they claim it may be lined to kidney disease. I have traces of blood in my urine.
As you can see, I have a history of drugs hurting me more than helping. It's not that I don't think Methotrexate can't help with my pain. I just know it's a band aid. I chose to try a more natural and presumably safer route first. Basically, I'm trying to heal my immune system rather than suppressing it. It just doesn't seem natural to me to suppress our immune system.
Since my posting of this question, a couple of months have passed. I still feel like crap, and the LDN is still not working for me, though I'm eating better and trying a few more things like turmeric paste, borax, cbd, etc.
Since it can take a while for LDN or these supplements to work, I think I'm going to give it 2 more months if I can. If I'm not better by then, I'm going to start on the methotrexate.
Sorry for the lengthy explanation. I just figured if I was going to answer, I'd have to mention the many reasons why I chose not the go that route yet.
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Are you on Methotrexate? Also, if I'm in pain, does that necessarily mean my joints are being damaged... if my RA factor is 0 still?
Hi natv1. If you're asking me if the LDN worked... no unfortunately not. I would have loved to taken it longer, but after 3 months on 4.5mg, I had to make the switch to Methotrexate.
My anti-ccp levels went from 1,600 to 2,200 while on LDN, and I ended up with permanent bone damage from my RA. I understand that it can take a few months for LDN to work, but I obviously couldn't risk further damage to my body while waiting.
I must say that I'm a bit disappointed that more folks in the LDN community don't suggest periodic x-rays for folks with RA. I was never told by the online LDN doctor who prescribed me the LDN, or anyone in the LDN forums, to get periodic x-rays. I was under the impression that the LDN would slow or at least maintain any damage. Heck.. my RA doctor didn't even tell me to get periodic x-rays.
I would suggest that anyone considering LDN to get frequent testing and x-rays if you have RA. I now have holes in my bones because I opted for the holistic + LDN route. I'm glad it works for some, but it didn't for me. I'd love to eventually get off of Methotrexate however. Maybe the key is to keep exploring different elimination diets and see if the Methotrexate can be weaned down.
Has LDN worked for you? Or are you still considering it?
Sorry to hear about your bad experience. Yes it is really important to have followup of your disease what ever treatment you are on. I also believe that when on LDN you need to combine it with a antiinflammatory diet for optimal results. My protocol with LDN, AIP diet and supplements has controlled my RA so far. No progression, blood ok. MRI every 6m. I hope the mtx helps with the progression of the disease.
Thanks Simba1992. You've always been helpful in this forum. Yeah, I tried the restrictive diets as well. Been juicing every morning the past couple of weeks. Before that, I was taking turmeric paste, cbd, borax, no dairy, no gluten, no soy, no corn, no barley, etc. I was having trouble avoiding meat though, and have read that for some people, it was meat that was causing them inflammation.
There are a couple new Paddison Program videos where he interviewed people who also tried AIP type diets with no success, but only experienced relief after eliminating all dairy and meat. Maybe I'll try that next.
I think I was most surprised by how rapidly my RA advanced despite all of the diet changes I had made, the turmeric paste, cbd, LDN, and massage. Glad to hear diet and LDN work for you. It's always reassuring to know it's possible to eventually get off of the Methotrexate. Thank you.
Yes I suppose it is very individual what triggers your inflammation. Dairy is out on AIP as well as sugar and gluten. They haven't really been on AIP if they left dairy in. It's strange with meat, in the beginning it was ok then I needed to cut down meat considerably to feel better again, and stay with occasional fish and chicken or turkey.
Forgot to ask are you sero negative or positive? I hope the mtx will help and that you can continue with a diet change that will help. It's really strange how often I have heard of people that have first been on mtx and then started with diet and had really good results, just like Andy and Pddison himself. Perhaps mtx gives the diet a helping hand😊
Hey Simba. I think I am sero positive (it was my assumption that anti-ccp positive means that I ams sero positive, though I could be wrong). From my research, people who are anti-ccp positive can experience more damaging and quicker onset of RA and it's damage on joints. Glad you mentioned the MTX possibly helping aid the diet changes to work. I too have noticed that... also from Clint Paddison and the folks he interviews. Maybe there is something to that.
Yes Needforname, I have read the same about possitive CCP cpmbined with a positive RF. I am sero negative with CCP and do not have joint damage, yet anyways, after a year only on diet and LDN. I wonder what role RF plays. I have also read that seronegative patients often react differently to RA meds.
Interesting. I am actually negative for RF factor and everything other than very high anti-ccp positivity. It's great to hear when anyone like yourself can avoid the MTX type drugs.
It's odd to me that my RA doctor (current and prior) fail to even acknowledge LDN as being a viable option, or even diet playing a huge role. They claim that while LDN may work for some, the lack of research and FDA approval is the reason they won't consider it.
I asked my RA doctor if I should stay on LDN while on MTX, and she advised against it. I took her advice, not because LDN scares me, but because there is no apparent research when it comes to combining the two drugs. It also seems a bit strange to me, taking a drug that apparently helps with regulating the immune system and one that suppresses the immune system.
I think you should have a look at ldnresearch.org pages. The doctors that have been using LDN on their patients have in fact seen a positive effect when using these meds together. LDN calms the inflammatory reaction, supports the normal immune function and does not interfere with mtx. Patients are encouraged to continue with their meds when starting with LDN and for those that it does work have been able to reduce their meds. The LDN website has material that you can print out for your doc. Many LDN users have educated their doctors who have come on board after having more information.
Thanks. I have viewed that website in the past, though I'll have another look. My RA doctors are very dismissive of LDN, but maybe if I printed out some documentation she would be more open minded. Her main complaint was that there weren't enough large studies to prove it's long term safety. While I can see where she's coming from, it's not like MTX is "safe" despite years of testing. She said, "if LDN is so effective, then why didn't it slow your disease". I said "it can take time, just like MTX". She said "yes, but even when MTX is taking time to work for pain, it does usually slow the damage immediately". I don't know what to think anymore with so much conflicting info. Maybe I'll start the LDN again soon. The RA doctor won't be happy with the decision but I do like the idea of allowing the LDN to build in my system over a few months and maybe lowering the MTX slowly in maybe 6 months and seeing if the LDN can be enough on it's own.
LDN is a small dose of Naltrexone that has been. used for decades and is very safe. It is true that it does not work for 10-15% of AI patients. This is what doctors who have been using LDN for a long time, the reason for this is not known. Mtx works for 50-60% of RA patients mainly as an antiinflammatory and it may also slow progression. There is nowhere stated that it always does. Yes there is lots to learn about LDN. Take your time😊and good luck.
Thanks Simba. I was paraphrasing what the doctor's reply was, so I could be slightly off. Good point on the MTX only working for a certain portion of people. I appreciate your time. Best of luck with your own health as well.
Hi again Needforname, Came to think of what you have posted earlier about your suspicions of eventual infection causing your RA. Have youheard about Minocycline treatment? If not it might interest you to look up the Roadback Foundations website.
Hi Simba, I have. I mentioned this to my GP and RA doctor and they both refused to go that route. They said it's an old treatment that's no better effective than the MTX I'm now on, but with less testing. Though I have read where it has helped folks, and Dr Mercola used it with some success when he was still in practice.
If I remember correctly, the reasons my doctors advised against going the antibiotics route, was because it's slow acting (especially when not used early on), and they said I needed something to stop the bone damage ASAP. They also mentioned that antibiotics were nowhere near as studied as MTX. Here's an article that seems to touch o some of this: arthritis.org/living-with-a...
One thing I'm completely confused on is the possibility of lyme disease. I have been bitten 3x in my life. A few years ago I was bitten, and I did experience a rash. I can't remember though, if it was immediate or a day or so later. I also can't remember if it was a complete ring or not. This was before I knew about the danger of the rash. I remember I told my doctor about this a couple weeks afterwards and he said not to worry.
Since then I've become a bit more informed. I had my doctors test me 2x, but each time it showed negative. I then expressed my concern with the generic blood tests not being 100% conclusive. They told me that it's the false positives that are inaccurate, and that a negative reading is most certainly negative. This goes against stuff I've read online.
Many folks say to get the Igenix test done, but it's crazy expensive and not covered by insurance. I mentioned this test to my doctor and she said she wouldn't. She thinks it may be a fraudulent company because it seems every one of her patients who have had it done show positive. She finds this highly suspect since all of those patients showed negative in regular blood lab testing.
I've read that the rash means lyme, and I've read that it doesn't. I just don't want to drop $1000+ I don't have if I don't need the test done. It seems that everyone in the lyme forums/groups says to get the Igenix test, but then again, theories in those forums (ex: candida is cause of everything) seem to be based more on echo chamber than proven study. The difficulty is that lyme and RA can share many of the same symptoms. Decisions decisions.
If you have read the material on the Roadback site you will see that there is in fact scientific evidence on the efficacy of Minocycline treatment. There are several doctors in the US who treat patients with mino both for Lyme and RA. The Roadback Foundation has a list of these doctors that you can call and ask everything you want to know about. They are very helpful.
I'll check it out later. I suppose I'd have to find another doctor. I just switched RA doctors too. I'll do more research into it. Thanks. I suppose my biggest fear is how slow antibiotic treatment can take to work... and I don't want to experience further bone damage. I will read through that website and learn more. Thanks again.
You can also ask on their forum. There are quite knowledgeable people there especially one called Mez or Maz. She can answer any of your questions😊Good luck xx Simba
Hi Needforname, I am considering it. Like you I have had bad experiences with prescription drugs prescribed by doctors that nearly lost me my life. I am looking at alternatives. I tried Sulfasalsine and Hydroxychloroquine with no joy it done nothing for my symptoms or inflammation (I'm sero positive with all bloods results way above normal my rheumy doc says I have high disease activity). I'm not on meds as I'm very sceptical about going on biological meds for the simple fact that they dampen your immune system as does the DMARDs. My logic is that with an autoimmune disease we should be trying to strengthen our immune systems not make it worse. Anyway meds work for some people they didn't work for me and as meds and alternatives are both trial and error I'm all up for trying alternatives with less side effects, although LDN is technically still a prescription drug...Sorry to hear that alternatives didn't work for you. I guess we've all got to resign ourselves to the fact that there is no cure and use whatever method provides us with the most comfort. Good luck with the methotrexate. Is it helping?
Hello natv1, I encourage you to try since it has worked for so many and is also working for me but the experience has widely been that best results obtained when combined with an antiinflammatory diet and supplements that support the immune system additionally. I'm sorry the meds did no good for you, as you said it's trial and error and so much is still not known about RA.Good luck👍🏻Simba
Hi Natv1. The methotrexate doesn't seem to be helping, though it's only been 3 weeks. Then again, my knees don't seem to be quite as bad. I may start back on the LDN, despite my RA doctor's saying she wouldn't because of the lack of research. Though, it seems many people take both drugs without problems.
Based on my research, LDN seems much safer than MTX. The side effects with LDN are very minimal, and it's such a small amount of the drug too.
I personally don't seem to notice a strong correlation with diet and pain, though maybe I didn't stick with it long enough. I'm currently eating dairy and gluten again because I got tired of losing weight. I'm very thin and find it tough to keep on weight, especially on the vegan style diets. I have been juicing 2x a day though.
My plan is to continue with the MTX in hope that it slows my bone damage and helps with my pain. I plan on trying a no meat diet again soon. I know you've had bad luck with drugs, but the LDN seems to have very little side effects. There is a facebook group called "Got Endorphines LDN" that has many users and success stories.
If you choose to give LDN a try at some point, there are LDN doctors online that can prescribe. This may save you a big headache of having to find a local doctor. I had that problem.
I would also recommend getting periodic x-rays. While exploring the diet / supplement / LDN route, I was experiencing bone damage... which is why I had to go on the MTX. Anyway... best of luck.
Hi Simba, thank you. I will definitely try. I've been wheat, gluten and diary free now since October last year and I have found that my symptoms have improved. I do need to stick to the diet and eliminate sugar as I find that when I indulge in gluten free cakes and biscuits and normal ice cream it really impacts. I also take banderol and samento and oregano oil, vitamin d supplements daily and have a hot tumeric, ginger, black pepper and hunny tea every now again. My inflammation goes down but not completely. I'm a bit sore at the moment but I can definitely link it to over indulgence in bad food. I'm hoping that LDN will inhance my diet plan. It's really positive to hear that it works for you.
You seem to be well on your way already😊Have you checked your vit. D level? In order for it to have a clinical impact it needs to be quite high in patients with chronic inflammation ( between 100-150 mol when usually " normal" is seen 30-40 mol). Chronic inflammation also depleats your body on zinc, copper and potassium. I just recently started supplementing with potassium after reading about recent research on how potassium decreases inflammation and pain in RA. Lots to learn about all new research going on😊 A good comprahensive book to recommend : Tom O'Bryon: The Autoimmune Fix. Hope you let us know how it goes. All the best to you.
I'm trying 😊. I had a vitamin d deficiency back in 2012 but moved house and changed doctor who insisted that I didn't have a deficiency without me having any form of supplements. I read a lot about not having enough vit d and ra so gathered that I might be in need of something funny enough it's been prescribed through a locum at my doctors surgery. My inflammation is really bad and chronic. Is your diet helping your inflammation? Thank you for your recommendations I will definitely look into them and let you know how I get on. Thank you, all the best too.
Yes it's really helping😊I am on the AIP diet. You can read about it on the net, doesn't cost anything. My really bad symptoms disappeared 80% after 3m on this diet. There is also the Paddison diet that has worked for many. On this forum we have Andy who got up from his wheelchair and is nearly in remission with the Paddison diet after having tried RA meds for years. You might be interested to see what he has said about his recovery😊You can always supplement with vit. D, there has been no shown negative effects on med treatment. In fact many rheumatologysts see this supplementing very important Simba
It's really good to hear that your diet is helping you and that it helps others too. I will look into the AIP diet and check out Andy's post too. Thank you for the information, it feels good to network and share experiences.
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