I'm now 9 months into polymyalgic-onset, late-onset RA. Our first working dx was PMR, and since I can't take prednisone, I began researching alternatives. I found a journal article about low dose naltrexone, "The use of low-dose naltrexone (LDN) as a novel anti-inflammatory treatment for chronic pain." It documents success with LDN for Crohn's, MS, etc, and notes that patients with higher inflammatory markers saw more success. The authors suggest trials of LDN for PMR and RA.
I was unsuccessful getting LDN from a rheumatologist. However, he did give me more blood tests. They showed anti-CCP (ACPA) had developed. I had suspected it might have, but was just praying that the fact I have no arthritis in my peripheral joints (just shoulders/neck/hips, and some in knees/elbows) would prove me wrong. Rats. I have nodules in my lungs already. Weird and aggressive. I decided that my anti-inflammatory diet, supplements (turmeric/pepper etc), and low-dose aspirin weren't enough.
I am in the US. I located a naturopath who has prescribed me LDN. I'm starting with 0.5 mg, titrating up.
A week previous to starting the LDN, I began undenatured collagen (UC-II) at 10 mg. (I tried 40 mg, but I think it was too much.) I found a clinical trial (double-blind, double-dummy) comparing it to MTX in RA. In that trial, it helped. Not as much as MTX, but I'm not relying on UC-II alone. I'm hoping the UC-II will work in concert with the LDN; my naturopath is on board.
I have successfully treated my MS & fibro for 30+ years without Rx drugs. It started extremely rough but responded to a strict version of the Swank diet. Took a couple years to really help me. I don't know that I have that kind of time with the RA, but I'll be damned if I piss off the MS/fibro with TNF-alpha inhibitors or MTX, or make my lung problems worse with MTX or an immunosuppressant.
Anecdotal information indicates LDN does help some folks with RA, not as fast as Crohn's or MS, but I hope I get lucky. If this doesn't work, I'll look at other DMARDs, but they are unlikely to help me for various reasons, too. Weighing everything, this seems like my best first shot.
I'll let you know what happens. I'm a wildlife biologist with a serious scientific bent, and I view this as an experiment on myself.
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please keep in contact I am interested in knowing if LDN works. I read an article on it and contacted a chemist in Scotland who could supply it in the UK.
Could you let me know how to contact the Chemist in Scotland please?
I live in the UK too and have been reading about LDN. I saw my rheumatologist last Monday and although she was not horrified at my request to try this drug she said she is unable to prescribe it.
I have started taking Sulfasalazine but the potential side effects sound terrifying...
I would be so grateful for any info you can provide.
I get my LDN from UK. If you contact Clinic 158 and have a consultation with a doctor they will give you a rx and the LDN will be sent to you from Scotland. It works really good. The LDN research fund ldnresearch.org has a lot of useful information and help if you are interested in LDN treatment. Good luck
Good luck! I'm not a great supporter of off piste experiments, but with your collection of AI diseases and drug sensitivities it sounds like you have limited choices so I really hope this works for you. All these diseases seem so variable that it clearly seems worth trying out what might help you. I don't follow a specific diet, just normal healthy eating ie veg & fish heavy and moderate on everything else but I know if I have a bad food week with too much fatty food & sugars I'll feel it in my joints. I hope you also have included careful exercise in your plan, as those joints need protecting with some muscle.
Thanks for both of your interest. Yes, exercise is part of my regime--for work, housework, yard work, yoga, etc. It has been key to maintaining functionality with my other conditions.
I'm learning more RA-specific PT's, too. But I'm greatly limited now, especially in my shoulders. As I said, this type of RA is very aggressive, and many joints are starting to swell and grind...
I should add that, should the LDN & UC-II not work for me, not to take this as a general indictment. Apparently my type of RA is unusually erosive and progressive (very rarely goes into remission). It also involves much non-joint (extra-articular) involvement and significant mortality. This is a "Hail Mary" pass for me, basically, so don't globalize my results to the rest of you! The theory behind them is solid; I may just be too tough a case.
I take LDN for ankylosing spondylitis. It wouldn't have been my first choice, but as I can no longer take NSAIDs (the first line treatment for spondy), reacted to SSZ, and am not eligible for anti-tnfs, it was really the only option for me besides steroids. GP was happy to prescribe (it can be prescribed in the UK if your doctor thinks it is appropriate, though many won't as they don't know enough about it).
It hasn't been a miracle, though its a lot better than nothing, and heaps better than diet alone (low starch diet for spondyloarthritis). I don't think it has really stopped flares, or even particularly slowed down disease, and it hasn't slowed down or reversed the disability from my disease, but it has been quite effective on modifying my pain responses, so I can get by with only minimal pain relief (paracetamol/tylenol). I do know a number of people who take LDN with antitnfs. I do still need a short course of steroids about every three months or so to knock inflammation properly.
Its definitely worth trying if you either can't or are unwilling to take, traditional meds. I guess the jury is still out on whether it does anything to halt the disease process, though research seems to show that it does appear to have had results with inflammatory bowel diseases. Would be interesting to have some proper research done on inflammatory arthritis and LDN.
OK, a correction and addition to the UC-II dose: The capsule I am taking is 40 mg cartilage, which contains 10 mg UC-II. So I started at 10 mg (too much), nothing for 2 days, then 2.5 mg, which seemed better, although I was still progressing. So, the last 2 evenings, I took 5 mg. Mistake! Insomnia, more pain. The studies I've seen used 0.1 mg, 0.5 mg, 1 mg, 10 mg. I think I'll give it a rest for a day or two, then try closer to 1 mg. The mechanism of action is different between higher and lower doses; I think I'll aim for the lower-dose. And I don't want to mess up my LDN trial!
Interestingly, after the 2 nothing days, I had another ACPA test. My ACPA had dropped by almost half, from moderate positive back into the weak positive category. But I don't know if the UC-II, or something else in the previous 1.5 months caused this to happen. And level of ACPA supposedly has no bearing on prognosis; if you have it at all, it's not good. (But I did find one study, which despite searching I can't relocate, which said the 2 out of 10 folks who had clinical improvement with UC-II also had an ACPA decrease...The study was stopped because of the lack of efficacy. I think they were using 10 mg.) I know, small sample size!
12 days into LDN: No effect that I can tell, but no side effects either other than vivid dreams. (I was told if I get diarrhea, that's a show-stopper. Any increased insomnia will dissipate.) In a few days, I go to 1 mg. It generally takes at least a month to see results. I'll let you know what happens.
2.5 months into LDN. Started at 0.5 mg, bump up 0.5 mg every 2 weeks. I ran into a glitch. I was getting a minor rash, so stopped the UC-II. I was at 1.5 mg, and switched from 3 caps of 0.5 mg to 1 cap each of 1 mg & 0.5 mg. The two caps were different colors. Worse rash, bad insomnia, loose stools. Called compounding pharmacy--yes they use food coloring, and lactose as filler. Can they make with no food coloring & rice flour? Yes. Waiting for new Rx to arrive, 5 days with very low dose to none of the 0.5 mg, felt like crap, elbows and knees getting worse, mild rash. On new caps, no rash, no loose stools, bump up quickly, then to 2 mg for 2 weeks. On 2.5 mg for 5 days so far. Plus switched from taking at bedtime to taking approximately midnight (when I normally wake up to pee anyways), which seems to work better.
I think it is starting to make a real difference, finally. And I think it may be helping my MS and fibro a bit, too, as well as possibly improving my mood some. I have increased insomnia each time I bump up, which dissipates over the next couple nights to my usual pre-existing low-grade insomnia. More vivid dreams. I'll keep titrating up until I reach whatever optimal dose is for me. At that point, my naturopath & I will discuss adding the UC-II back into the mix.
I got the Vectra tests in early October. Bad news, severe RA, with most inflammatory markers in the 80 to 90% range. Except my TNF-RI, which was only at 22%...but besides LDN, I'm also taking multiple natural TNF-alpha modulators and general anti-inflammatory herbs/diet. (And because I have MS, anti-TNF biologics aren't a real good idea, so glad to see that marker is relatively lower.) But my IL-6 was at 91%; bummer! Well, I have my challenge, and lots of opportunity for improvement, I guess. I had just started 1 mg LDN dose (too low to be very therapeutic) when I did the Vectra test.
I'm also tracking with standard sed rate (which was still in the PMR range, 80+, in Sept.), etc. Anemia was worse in Sept, too. And we're tracking my bone markers, since I've been losing bone density at a pathologic rate (5-6%/yr) for ~5 years, we suspect because of the then-undiagnosed RA.
I'll get more of the standard tests in early Dec. This will help determine if my subjective sense of improvement is justified, plus the specifics of which of my multiple aspects of progression potentially are being affected.
The optimal dose for RA is 4,5mg. Usually you start with 1,5 mg and add 1mg every week. Some people are more sensitive and stay on lower doses for a longer time. If you have no effect, the dose is probably still too low. Most people have problems with sleep in the beginning, but it passes quite quickly, diarrhea is not common. Some people get results quite quickly but it may take up to 6m and even a year before notable results.
Hi Julie, really interested in your post re: LDN. I am a physiotherapist in UK, 2 years down the road of aggressive RA sero-positive. Had a couple of biological drugs which have had a short term effect. Not able to tolerate MTX Sadly we dont have naturopaths here so I cannot get a decent source of LDN, other than trawling the net and fingers crossed. Do you have any idea of the source for your naturopath. I am more than willing to try as I am becoming exhausted from the toxic stuff I have been taking now.
Here's my update: I'm at 2.5 mg low-dose naltrexone still. I tried twice to go to 3 mg. Pissed off my hypothalamus, which is affected by MS/dysautonomia/fibro; strongest evidence was inability to control body temperature. Also, more pain & swelling overall but especially newer locations. (Due to polymyalgic onset, my first affected joints were shoulders/neck/hip/some knees/some elbows, but my sternum/T-spine/ribs & hands are getting affected now. Plus another internal bleed in one foot, likely due to the RA-related vasculitis which doesn't like cold!) So after 4 nights the first time, and just 1 night the second, I dropped back to 2.5 mg each time and felt more stable.
The benefit is still moderate. My low-grade fever is gone, my energy level is better (and I rarely hit those massive fatigue walls), my anemia is a little better, my cough is gone, my sed rate has dropped from 80's & 90's to 48, my CRP has dropped from high 20's to 16 mg/l. (I haven't re-done the Vectra tests yet.) How much of this is due to the transition from the polymyalgic phase to regular aggressive RA, I am not sure. I do continue to progress, but much more slowly (which is surprising given the unusually cold weather we're having now), and there are actually some occasional better days where the tendinitis portion of my disease backs off. Mornings always suck (and sometimes can be quite scary), but hey, that's RA.
The key here is to titrate up until you find your individual Goldilocks dose--not too hot, not too cold, just right. Clinical trials don't have that luxury. Also, I refuse to panic, and so have given myself the gift of time. My naturopath says it could take 3-4 more months before we see the full effect of what now appears to be my optimal dose.
The Goldilocks concept is a basic rule of biology, and it really rules with hormones and other "communication" biochemicals. When you introduce any modifying substance, particularly a drug, dose will be key. Example: Vitamin D (which is actually a steroidal hormone) is like this; too high or too low can both cause problems, some similar (like bone loss), but others different enough that they don't even seem related. Another example: drinking water! But you get my point, I think. Also, optimal dose can also change with environment or other body condition fluctuations. Definitely a balancing act.
Regarding timing: since LDN works with your body's cortisol/etc cycle, when you take it is important! I've stuck with midnight to 1 AM; it seems to work better than bedtime. Some folks actually take all or some of their LDN when they first wake up. Again, this is individual, but most folks take it at bed-time as the best compromise between biology & convenience.
We did decide to try for synergistic effects now. So, a week ago, I added the UC-II (undenatured collagen) back in. I'm taking a tiny amount of what is in the 40 mg collagen/10 mg total cartilage capsule, probably getting the equivalent of ~0.5 mg cartilage. More than this, the pain is sharper the next day. (I am highly reactive to drugs, obviously!) This appears to be a Goldilocks-dose supplement, too. Clinical trials suggest it will take months before the effect kicks in, if it will. We sampled my anti-CCP again before I re-started the UC-II; I don't have those results yet. No rash--so it WAS the food coloring. (BTW, the compounding pharmacy I use said they no longer are using food coloring, for anyone! Nice when health aligns with economics.)
I'm also doing emphasizing various foods: frozen pineapple, white mushrooms, turmeric/black pepper, etc, so I have more potential synergies occurring. But I started the LDN because the special food wasn't enough.
So, how to figure out what substances are right for you: Besides improvement in the RA symptoms, another key rule--there are no "side effects." All effects are important, and contribute to the data you need to manage your condition. Yes, sometimes we need to put up with "side effects" to get another effect we want, but never forget those other effects are your body telling you that some other body function is now out of balance! Taking another drug to deal with those side effects creates a cascade of more artificially-regulated systems and biochemical reactions. I believe we as patients are the ones to decide if we want that, or another path. (OK, done with politicking!) Canada3, it is good you are listening to your body!
As to obtaining LDN, in the U.S., regular MD's can (and do) prescribe it (as they prescribe many drugs off-label); I just couldn't find a local one who would because it is not considered "standard of care." I did a little "cold calling" and web-searching MD's but realized quickly that a naturopath would be quicker, closer, more holistic...and I was willing to pay her if she was competent, which she definitely is. I get the LDN from a compounding pharmacy, also in N California, who mails it to me. Their source is bulk naltrexone--since that drug is used for opiate withdrawal already, it is easy (and cheap!) for the pharmacy to get. (The compounding fee is more than the drug itself.) This should also be true of the U.K. It sounds like you need to find a practitioner of some sort with the experience and willingness to prescribe it, though. I can't help you there, but other folks on this site might be able to.
A quick update. Still on 2.5 mg naltrexone & small amount of UC-II. My RD progression is slowing down...with a few bumps in the road. 2 months ago, I got severe GERD/digestive problems and began having high BP issues (I've always been low). And 3 weeks ago, I got shingles. I suspect the first two are related to fibro (which acted up a bit in the winter wx) and RD/probable secondary Sjogrens. I suspect the shingles come with RD territory, too--at least I've read they are more common, particularly after emotional or physiological stress, including, in my case, a full year of full-on RD rapid progression until the LDN kicked in.
But the RD inflammation is backing off: Rotating swelling/pain in my hands and wrists is rare now. Movement &/or pain in shoulders, AC joints, sternum, upper thoracic spine, ribs, neck, & hips (& to some extent, knees) much better. Pulse down.
This is reflected in my blood tests: CRP dropped to 3.8! Sed rate holding at 47, anemia continues to improve. Platelets, WBC's, & glucose are closer to usual. My Vectra test was great! From severe (63) to 1 point above moderate (46). And within that test, my TNF-R1 and IL-6 both dropped; the former dropped from 22% to 1% of test group of people with RA; the latter dropped from 91% to 81%; and the absolute value of both dropped almost in half. There are other tests within the Vectra panel; almost all improved, some a little, others a lot. But TNF & IL-6 are probably the most important, and the ones with which folks here might be familiar.
So LDN has not been a cure-all for me, but it is most definitely helping.
As for the UC-II: As I predicted, now I've been back on it steady for a while, the anti-CCP (ACPA) score dropped again, to 23. (20 to 39 is weak positive.)
All this despite having stopped even low dose aspirin when I got GERD.
The pain and fatigue are at the level where they are useful guides to overdoing it, not senseless life-destroyers. I'm working half-time, can drive short distances (rural area), and walk cross-country again a few miles, so I can monitor the wildlife I love. (Trying to do this with shingles was a contortionist act, trying to keep my pants from rubbing on the blisters, then scabs. But the arthritis in my knees behaved enough to walk across ~500m of basalt rock.) I still have bad days, particularly 5 days into shingles, but overall, I have gotten a life back. Not the life I had with just MS and fibro, but far better than 6 months ago. And I'm not dead, which frankly, I thought I might be, given all the extra-articular involvement I have.
The shingles themselves have been moderate, only one day when I felt like I had a belt of thorns around my waist (the rest with moderate discomfort but not show-stopping), no fever or flu-like illness. They are healing well. I'm sure the LDN has helped with the pain. (Since I can't take Tylenol, narcotics, or, now, aspirin or other NSAID's, that was really helpful!) LDN has been recommended for shingles, and I don't believe it caused them.
Hi there Julie_r.. thanks so much for your very comprehensive answer to my questions.. its a slow long haul and you are so right about balancing the systems one drug has a good effect but..... what to do for the side effects! I wish it would just all disappear! The only thing that actually makes me feel normal again in is low dose corticosteroid (5mg day).. and I am almost tempted just to kiss goodbye to the rest of the crap and let my osteoporosis take hold eventually with the steroid use... at least I would be happy and feel normal again!
This is off-topic from the LDN etc, but I thought I'd cut & paste something I wrote to my Mom when she was on the prednisone merry-go-round about 18 months ago. (In January, she said "enough" of the prednisone and other drugs and died of COPD 12 hours later.) Here it is:
I just did a quick search of the literature re: low-dose prednisone and side effects. Of course these are clinical and statistical studies; any individual may react differently from other people and at different times. (For example, I cannot handle any dose of steroidal chemicals, including supplemental Vit D--which is a secosteroid, DHEA, real licorice, HRT, etc, anymore.)
Some "side effects" are threshold, where effect is minimal until you reach a particular dose. This includes glaucoma (below 5 mg, probably lower), and increased hypertension (~7 mg). Other effects are dose-dependent. Osteoporosis and fracture risk are in that category. The level at which risk is negligible is <2.5 mg, but it increases quickly with increasing dose such that anyone on 10 mg is usually prescribed a bisphosphonate. Note: increased vertebral fracture risk with prednisone use is not necessarily associated with decreased BMD. This is relevant in your case because you developed compressed vertebrae even though your vertebral BMD was not very low.
Take home message: There will be a difference between 3 mg vs 2.5 mg vs 2 mg. Go as low as you can and still get at least some benefit.
That's it. I'll add that your individual health conditions affect your decisions, too. Due to my severe osteoporosis (due likely to the RA/RD, MS, fibro, & hypervitaminosis in 2011) and sensitivity of my fibro to anything steroidal (mentioned above), prednisone just can't be in my play-book. Individual conditions also affect when you should take it for best effects--when I could benefit from licorice, I took it first thing in the AM (when the body's natural cortisol usually is higher but my rhythm is too flat so the boost helped)--but again, that is individual.
Oh, also, I got my anti-CCP results. Jumped up a bit, but not as bad as July. I know that prognosis is less affected by level of anti-CCP vs simply being in the abnormal range. But I'll be curious, now I'm on the UC-II again, if it drops back down.
I will follow the "first-year" strict Swank diet forever. It saved my life. I've refined it over the past 30+ years, going organic, dropping wheat & eating whole (& usually sprouted grains), etc. I just checked out the Wahls diet (thanks for the link); it's more extreme quantities than what I eat, and I can't do saturated fats (included in ketogenic state), but there is a lot of overlap. McDougall's diet is too low-fat; Swank diet includes healthy oils, especially olive & flax (for eating) & cod liver (supplementing) & emphasis on healthy fish (wild Alaskan salmon and my new favorite, Mt Shasta steelhead), plus nuts (almonds especially). More active people are supposed to eat more oil, plus I need to in order to keep my weight over 100 lbs. (I'm 5'6", and the RD gave me severe muscle wasting & 10 lbs of sudden unexplained weight loss.) When I got RD, I dropped the small amount of canola oil I used, too. (no other polyunsaturated oils).
I think this helped postpone the onset of my RD, as I've had the "extra-articular" manifestations for years, just called it undifferentiated connective tissue disease. I think a lot of this is individual, and what's important is finding the diet that works for that person at that time. If I accidentally eat saturated fat (other than 1 egg occasionally), I will get severe recurrence of my worst MS symptoms within 1 hour. I am thankful to my body for guiding me; I listen and need no willpower.
So diet has been key for years. However, once I went over the threshold into the erosive arthritic flare, my diet wasn't enough. Hence the LDN. And you know the story from there.
Yes, Dr Swank collaborated a bit with Dr McDougall, but it was late in his career. (Dr Swank began intense studies of diet in MS in 1948, in Montreal. He retired in ~1998, when he was ~90 years old.) He came up with the diet before the American Heart Association realized it was needed for heart attack and stroke. He studied the difference in MS between coastal & inland Norwegians, as well as examining prevalence of MS and diet in Japanese, Italians, Israelis, Canadians, & us (in Oregon). He also collaborated with British researchers on diet and much more (evening primrose oil, erythrocyte mobility test, flicker fusion test, etc.) He invented a blood filter. He was the head of neurology at Oregon Health Sciences University for years.
Dr Swank cautioned us on switching to McDougall; we'd lose weight & not have enough energy. He knew that because he'd spent many years collecting data on many patients. His diet recommendations changed slightly as he collected more data. He knew what was worth doing and what was extra, because he'd studied it in so many patients.
Swank was my neurologist for 16 years. The Swank Foundation continues. Now, Swank was brilliant.
I checked your other post on weight gain. Far too restrictive, and unnecessary in my case. I'd also lose weight on that regime. I am not brilliant. I followed Dr Swank's full program (with a few unique twists), and it worked. Dr Swank helped me keep weight on by keeping my blood glucose even by eating dried fruit and nuts as snacks. I've never soaked them; extra unnecessary work as far as I'm concerned. And eating greens with every meal...just not practical. Now it looks like I also need more oils, more fish, white mushrooms, exercise (to rebuild muscles), good stress-handling techniques, but the crux of maintaining my weight is inflammation control via LDN. I've held steady since I reached optimal dose.
I want to do/eat what has the most effect, and still have time/concentration left to live a life. I consider a lot of supposed "cure yourself with diet" stuff to be fads, frankly. So did Dr Swank; he never said his diet was a cure, he said it was a way to manage MS (and heart disease and stroke risk.) So please don't use Dr Swank as a way to "legitimize" a more extreme diet.
But this is going off-message. This post thread centers on LDN & collagen (with the diet a background issue only.) So this is the last I'll respond to your comments on diet. And frankly, since it is heading into peak field season, I likely won't post on anything else for some months.
Update. Shingles are gone, and I've been improving since. Working 32-38 hrs/week, full field season, late nights monitoring spotted owls are potentially throwing off my tx but that is ramping down. (But it's wonderful having the reason why I'm a bit stiffer being that I'm working too hard/late, when last year, I couldn't drive and couldn't walk well cross-country through the woods!) I'm staying at 2.5 mg LDN, and ~1 mg UC-II. I haven't seen my naturopath in a couple months; too busy! But I will by the end of July and then get more blood tests. I'll report back then.
One benefit of last year...the politics of my job seem so minor. I was upset one night about a coworker's trash-talking, basically demanding that my efforts be channeled where they would be less damaging to the timber program. I drove, then walked into the spotted owl's old growth grove, hooted him up, checked for his band (yes, same guy)...then looked in his eyes, and all the office crap just went away. Recently, I confirmed that he has his first spotted owl mate; for seven years, he mated only with a barred owl. (And yes, they produced "sparred" owlets.) It is really important that someone skilled do my job, and I'm ecstatic that person is again me! I have been given a huge gift to be able to return to this work I love. That's what REALLY matters.
Just reading this thread as I have an interest in the effects of LDN, and am really heartened by your postings, Julie. It is frustrating that no proper trials have been done with regard to RA and LDN. I feel better for taking it, but this is not quantified in any way. It definitely helps me sleep and when I ran out recently, I did feel worse and very miserable after two days without it.
I knew from research that it could reduce RF, but didn't know it could affect anti-CCP. I wonder what that means in actual disease terms?
I have looked into collagen, but as a long-term vegetarian (although very recently eating fish again), the idea just didn't sit well with me. I'm not sure that vegetarian options would be as effective. But I will look into them again.
What a wonderful job you have! Not quite the same thing, but I run a wild bird sanctuary here in the UK (not owls, but corvids), and I experience the same perfect in-the moment magic when I interact with some of the birds here.
I actually credit the undenatured collagen (UC-II), not the LDN, with the decrease in the anti-CCP. Supposedly the actual value doesn't translate into disease status or prognosis; it's just bad if you have it. But I read one aborted study where only a few folks who took UC-II were helped by it, but those who were helped had a decrease of their anti-CCP. I can't find the study on the web anymore. My anti-CCP dropped when I took it, rose when I stopped, and dropped again when I went back on it (but at a very low dose). During the entire time, I was on LDN.
I also read that you are considering mtx or sulfasalizine, and trying to decide which. But that in general, especially given your positive RF & anti-CCP, you are doing pretty well. And you don't think HCQ for 6 months has helped.
Here you say you are on LDN, and have no objective quantification. How long have you been on LDN? What's your dose, and how did you decide on that dose? Did you titrate up, and tried both 0.5 mg higher and lower than where you are now? Some improvements (and side effects) happen right away, others have taken 3 to 6 months to kick in for me.
You (and your doc) can figure this out, just like you deal with a sick corvid. How do you dx them, and decide how critical they are? How do you decide treatment?Scatter-gun? Or try one thing (or a known combo) and see how they react? How do you monitor if tx is working? We are all animals, after all. You can use the same principles.
You also said that your CRP and sed rate are low, so you don't think they correlate well with your status. But CRP is a good indicator that tx is working (more sensitive than sed rate), and your low CRP suggests to me that without something you are taking (HCG or LDN), you could be a lot worse. Also, platelets and WBC's can rise with inflammation, and a particular type of anemia (of chronic disease/inflammation) can occur. Both of those happened with me, and are resolving. What is even more important is trend. You want those scores every few months, maybe even more often, at first. Get them, including scores from before you got RA so you know your baseline.
Luckily for me, we have the Vectra test in the U.S., with an overall score (mine has dropped quite a bit and is now barely in the Severe category), as well as individual markers. The two most valuable for me are TNF-alpha and IL-6, because most biologics target the former, but as a person with MS, too, anti-TNF drugs can be hazardous. So I was glad to see that my TNF-alpha was low, and dropped even lower on LDN. The IL-6 was very high, but is dropping, too. This and my better functionality helped me & my PCP decide we'd stick with just LDN and complementary herbs/diet/supplements for a while at least. Also, that the LDN dose, although relatively low, is working well for now. (Read my comments elsewhere about titration and dose.) Because this is a risky strategy, we wanted not just my subjective sense of improvement, but hard numbers.
And yes, I was very sick, my RD is systemic, I was progressing quickly, and I was scared. The stakes and urgency in my case, and yours, are higher than most folks. I researched the hell out of my options, just in case LDN didn't work. It seemed to help...a lot. But how was it working, and would it keep working? I needed to know that the disease process was slowing, not just the symptoms calming down. The data has given me that reassurance.
I've been talking about inflammatory markers mostly. But also, if/when you go on drugs with potential nasty side effects, you want to monitor the trend on any marker or sx than can allow you to stop the drug before irreversible damage occurs.
How often to test? Your doc should know, or sometimes the lab can tell you, or surf the web. Different tests have different sampling rates, depending on how quickly they change in response to drugs, progression, etc. Some are more sensitive/valuable than others.
Get all those scores from you doc; don't be afraid to ask. Work with him/her; the medical professional is your partner, not your parent or your boss. You know your body better than anyone else can; pay attention! Then communicate that to your doc; that can also help them decide what tests to do and how often. Surprises are generally not happy events with us; stay on top of this.
And above all, remember, information is the best antidote to fear!
One other message I got loud and clear from the LDN 2016 conference: you can't expect for LDN (and I expect, many other drugs) to work well if you don't clean up the rest of your life, diet, physical therapy, etc. If juicing helped you, you need to stick with it/get back to it.
Good luck, and let us know what happens. I'm really interested in the experiences of other RA/RD folks on LDN, with or without mainstream drugs.
Good luck with LDN! I have kept my RA in control with AIP diet, LDN and supplements since I was diagnosed in Dec. 2015. My knees are nearly normal and I can wear my wedding rings again! Inflammation and pain decreased with 80%. Need only occasional asperin or advil. Hoping my treatment protocol will eventually get me off the pain killers too. I am on 4,5mg of LDN, no RA meds.
I do feel that something additional is needed to bring this under control - at least in the short term.
Basically, what you are saying is that without the HCQ, LDN and anti-inflammatory diet/supplements, I would be feeling an awful lot worse than I am? That's a depressing thought! But know from experience that what I eat one day affects how I feel the next.
I will get back to the juicing. In March I developed De Quervain's Syndrome (inflammation of the tendon sheath) of my right wrist and the physio said I needed to rest it. The act of chopping pounds of fruit and veg every day and pushing it through the juicer put quite a strain on my wrists, so I had to give up the intensive juicing I had been doing. Now I only get the occasional pint of juice - but I must admit, I felt really good on it, although it wasn't always the most pleasant of drinks. (The tang of ginger and lemon helped balance the high cruciferous content though!) I try not to antagonise my tendons these days.
I'm in the UK and our blood tests don't seem to be anywhere near as comprehensive as the Vectra test. I am curious about levels of things like TNF and IL6, so will look into whether they are available here. Among other things, I take Back Seed Oil daily, which is one of the things supposed to target TNF and IL6.
The LDN I started in March, titrating upwards weekly from 1mg, intending to reach to 4.5mg. But I don't seem able to progress above 3.5mg without setting off inflammation in my hands and getting adrenaline surges in the night. (Advice on other forums is to push through any side effects as they usually pass - but these two freak me out too much.) So I take between 3 and 3.5mg six nights a week. This prescription comes from a private clinic and my consultant has been informed (at his request, I keep him informed of all my supplements), but the only discussion we have about it is "Are you still taking the supplements?" I say "yes" and we move on. His only concern is that I don't take anything which will interact with his drugs. The clinic only ask what dosage of LDN I'm taking, how I'm finding it, and do I have any side effects - no monitoring as such. You are kind of on your own with it.
The consultant keeps my results to himself, but I specifically requested access to my GP records after they cocked up with my initial tests. I will ask the consultant if I can have access to all hospital test results. As you say, we should be working together. He's a good man, very gentle and not overbearing.
Dose: We've found that with LDN dose is VERY individual. I'm on 2.5 mg. The adrenaline surges and increased inflammation you describe are the main sx I had when I was at 3 mg, and my naturopath (who has a fair amount of experience with LDN) agreed with me that this was evidence that 2.5 mg was my optimal dose. Everyone's dose is different, and often women will have a lower optimal dose than men, both because we often are more sensitive to drugs overall and because we weigh less. Many drugs act on a mg/kg body weight dosage, and LDN does appear to have some of that aspect. In addition, dose for many drugs, including LDN, is dependent on "comorbidities" (other conditions.) For example, anyone with thyroid issues will be more sensitive to LDN dose; folks with Hashimoto's are often best at 0.5 mg, some can only tolerate alternate days. Besides MS & RD, I have fibro, which affects the hypothalamus, the traffic control center of the brain (and as such, it is in a feedback loop with the pituitary and thyroid); that also likely contributes to my lower optimal dose. Many "side effects" of many drugs are due to the hypothalamus getting tweaked. The side effect that folks say to "push through" is temporary insomnia (often caused by the hypothalamus), but if that doesn't subside, we should use that sx to help find the Goldilocks dose, too.
Frankly, we weren't sure I'd tolerate LDN at all, and figured I'd be lucky to make it to 2 mg, so making it to 2.5 mg is a victory in my book. The best subjective sense that I'm at the right dose is feeling "solid" at 2.5 mg. This being backed up by blood tests is helpful. Now, if I start feeling shaky or off-balance or weak, or if I want more improvement, I look at other things I may be doing wrong, rather than at the LDN dose, because I have a long enough record, and blood tests, that tell me the problem likely isn't the LDN.
Mainstream drugs: The major issues here are when you start each of them, how do you monitor effect, whether you substitute or combine at the beginning or add in or drop. I didn't want to go on aspirin, and then LDN, since I didn't use any Rx drugs for my MS for 30+ years. But like you express above, you think you need more/different tx than what you are currently doing. Don't be afraid to stop something if you think it isn't working or may be harming you. There are a lot of options out there now; try something else. But do your best to keep your monitoring simple, so you know what drug is causing what sx. I stopped UC-II temporarily, and almost stopped LDN due to rash, but then realized the problem was the dye in the filler used in the compounded capsules. Dropped the dye, and the rash stopped within a few days. (I also switched fillers from lactose to rice flour, which helped with soft stools.) It's hard to do controlled experiments on yourself, but do the best you can.
Juicing: Maybe you can use a blender or whole foods juicer that doesn't require you to chop so much? I just eat a lot of fruits and vegies; I need that fiber myself as I also have fibro, which slows down my digestive system! Are you eating something now that you didn't eat when you were juicing, something that could cause more inflammation or otherwise muck you up? There is always a solution, you just need to find it. Think different.
Medical records: Luckily, again, being in the US, we have laws now that require docs (and labs) to give test results to patients. I request all test results be sent to me by both labs and docs when the tests are performed. I got MS in 1981, at the age of 25, and although I wasn't a well child, I have NO records from before age 25, and my mother (with 5 kids) couldn't remember which kid had which malady (or tx or vaccine or anything) when! So I've kept all my records since, which is helpful for hand-carrying them between docs and to new docs. (Also, when you quit seeing a doc here, they often charge a lot to give you copies of your records.) I also keep an ongoing medical history summary to give to my docs periodically, to new docs, and to myself when I need to fill out forms or puzzle something out!
Prognosis: Yes, you could be worse. But this is not depressing, it is a relief that you can have this much effect on your condition to this point, and a call to further action. I had an appointment with my naturopath a couple days ago, and she pushed me hard...monitoring tests, PT's, diet, sleep habits, etc...and gave me goals...."We want those arms over your head; we want you to be able to hang from your hands with most of your weight straightening your spine! Keep working on it, gently, every day. And no sitting for long periods! Build those muscles back up, but pay attention to your body while you do it!" (I just strained my back lifting a now-too-heavy box--what an idiot! Now I have to do PT's for that, too!)
Outlook: I've had health conditions most of my life, and seriously limiting ones for 35 years. I've still had a great life. But it takes much more work than most folks. Sometimes I envy them, but mostly I'm grateful that I've been forced to take such good care of myself, been forced to stay in a lower-paying field job rather than gel up at a stressful desk job, been forced to think differently in order to accomplish things that others do easily, been forced to dispense with waste and BS in my life. I listen to others, but think for myself, and make my own choices. I am grounded in the real, in solutions, and in what works. My (quality of) life depends on it. From what you've said, yours does, too.
Someday, I'll tell you my perspectives on corvids, but that's another post (or maybe private message...nothing is simple!)
OK, busy couple weeks coming up; I'm going to sign off for a bit, but keep us posted.
Thank you for taking the time to reply in such a reassuring and encouraging way, Julie. You have had so much more to deal with healthwise than I have over the years, and yet despite all the difficulties, you sound so positive!
I'll bear in mind what you say about the optimum LDN dose and stop trying to get to 4.5mg.
I'm so new to all this, there is a lot to take in. I do wonder if I hadn't been vegetarian and eaten fairly sensibly, if this would have hit me sooner. As it is, symptoms began a few months after I lost my Mum (my sister and I having nursed her at home from her cancer diagnosis to her death five months later). It was incredibly stressful, and I knew from my regularly triggered flight and fight response that my hormones were all over the place, but there wasn't time to consider myself. Fourteen months later, in April 2015, my father collapsed with a sub-arachnoid haemorrhage and we spent four days at his bedside watching him die. It was while we were in the hospital that I became aware that my left wrist was very painful and hot. I later learnt this was the start of what is termed a "flare", but didn't know that at the time. Last summer I also experienced the first signs of peri-menopause, so I think other hormones have also had a bearing on the manifestation of RD at this time.
I look forward to hearing your perspective on corvids when you have the time. Obviously, I love them, but not everyone feels the same way!
This is going to be a short update because I'm feeling well enough that I am again super-busy! I'm getting more blood tests in a couple weeks & will write more then.
August blood test results, with last year's range first:
Sed rate: 80's & 90's, Aug 28
CRP: High 20's, Aug 1.6
Anemia (from inflammation): resolved
WBC's & platelets: Elevated, Aug within pre-RD range
Alkaline phosphatase: Normal, Aug above & rising. Since my liver stats are OK, we suspect for the first time in over 5 years, I may be rebuilding bone.
November Vectra: (first score is 13 months ago)
Overall severity: 63 to 35 (scale of 100; 30 to 45 is moderate, God help those above 70!)
"Special" CRP: 42 (94%) to 1.1 (15%)
TNF-RI: 1.6 (22%) to 0.90 (<1%)
IL-6: 48 (91%) to 9.5 (45%)
Similar decrease in most other markers
% is in comparison to test group of RA patients
Pain down 80 to 90% from a year ago. Fatigue walls extremely rare, usually when something else (like my MS getting upset due to working in too much heat) is involved. Heart rate and temp normal. BP is still a bit weird; low in dr office, higher and with 20 point disparity--right side higher--at home. Weight is holding, working to push it up.
My naturopath put me on continuous motion PT's that I do repeatedly during the day. I can put my hands above my head, and touch them behind my back again. I can't yet hang from my hands, mostly due to my elbows, but I'm getting there. 2 months ago, I waltzed for the first time in over 18 months. (I love to dance!) My brain is sharper!
Still have the reflux but not as severely as onset. However, it seems to be more constant. Suspect disease process as opposed to LDN rxn. Working on that, too.
Sticking with 2.5 mg LDN and micro doses of undenatured collagen. I credit all of the above to the LDN. The UC-II may be helping depress my anti-CCP, as I've mentioned, but as that isn't a prognostic indicator, I'm not measuring it as frequently.
Still on the journey.
I understand that not everyone gets such fantastic results. So I am blessed. See other posts about what I did; maybe something in the protocol I've followed will help you to achieve optimal results if you chose to try LDN.
So glad you are continuing to improve on the LDN/UC-II, Julie! Those test results are really impressive.
I have recently changed my dosing to morning and feel better for it. Well, more positive during the day and more motivated in the evenings. I suspect I'm more aware of the endorphin effect with morning dosing.
Hi Julie. I've only just found your yr-old post on LDN , OC11 re PMR - RA and will now try to follow yr story up since it rang sooo many bells with me. sadly i took mtx which did in my lungs in 6months but have now recovered via swims n singing and sulfasalazine which i reduced to half dose. I asked last year abt collagen supplements but was told didn't exist, so changed diet which helps somewhat. Good luck in your quest X
It's unclear from your post if you are thinking about LDN? See above about collagen alone not being enough, but in micro doses in combination with LDN, very successful for me. And check my earlier posts about LDN being more successful for initial high sed rates. If you do want to try it, titrate! More info is available about LDN on the web now; I don't have to repeat it all.
Update: Blood tests continue to improve. As of April, CRP 0.5, sed rate 16. All this with NO prednisone, DMARDs, biologics, just the aspirin for the year, which seemed helpful at the time but I did pay digestively.
Symptoms: Pain virtually gone, most range of motion has returned, little stiffness in the AM (just my lack of coordination and foggy cognition from my MS). I can walk through the woods, climbing over downed logs, up steep hills, etc. Still can't run, but haven't been able to for 25+ years due to MS; the LDN seems more anti-inflammatory than restorative, and doesn't seem to effect my longer-term MS limitations much. I'm taking advantage of lessened inflammation to step up PT's, plus getting a type of PT called orthobionomy, which has healed a lot of the tendinitis in my shoulders, elbows, hips, and even helped some in my neck--so I dodged surgery, too. And the improved mobility has resulted in less reflux, or as I've learned it really is, esophageal dysmotility--which is slightly different, and just a more extreme version of the swallowing and digestive issues I've had for years due to MS & fibro & probably RA-precursor sx. I put on 5 lbs this spring, and am keeping it on, including muscles. I'm hoping the bone loss has stopped.
Working my buns off doing my wildlife job, finding rare species which incurs the wrath of the Timber division. Also fighting an attempt by my Ranger to fire me over my "reasonable accommodations" for my MS (refuses to give me any more unpaid leave, which I use during the off-season part-time sedentary work to keep the MS spasticity quiet), likely political due to the aforementioned wildlife survey results. The disability harassment has been happening for 5+ years, but I got some trauma therapy this winter, and am now tackling it head on--filed a discrimination complaint, hoping to change a dysfunctional system, rather than rolling on my back and whining about being a victim. I've got my life back, and that's given me the strength I need to make a difference again.
Oh, and after a year of terrible coughing, following a decade of coughing a few times whenever I lay down, it is gone. Just gone. I got another chest CT, and it appears the amorphous nodule may be resolving a bit from the 2nd CT--tough to tell, and CT's have a LOT of radiation, so until I start coughing again, I'm passing on more tests. Your lungs can heal; knock back that inflammation and give them a chance.
Update. I didn't write this winter because of the discrimination case. But I'd like to add now that despite the stress, I'm doing quite well with the RD, thanks to the LDN, coupled with diet, micro doses of undenatured collagen, turmeric/pepper, cod liver oil, exercise, etc.
My blood scores have leveled off a bit but are still excellent. My latest CRP was 0.2 mg/liter. Yup, you read that right. My sed rate is holding at 19. My Vectra score is now 23 out of a possible score of 100, which is considered Low. Within that, my IL-6 is now 3.9 (11% level). Other scores, including TNF-RI, have stabilized or decreased a bit more. My anemia resolved previously and the related scores continue normal. My WBC's are actually a little low, which was typical for me previous to the RD. My platelets have returned to usual low-normal levels. My anti-CCP is now 7, which is considered negative. My ANA is negative.
Concerning the latter, a little extra study revealed that when my ANA is high, it is because of anticentromere AB, which is indicative of scleroderma as a whole. My mother's rheumie wanted to dx her with that. I've been talking with my dermatologist(!) about CREST and other limited sclerodermas, and I fit that picture, too. It fits right in with the systemic RD, too.
However, not to panic! My lungs are doing well, my pain level from the RD is minimal (although I crunch very loudly, and the MS spasticity is quite painful), I have 95% my pre-RD range of motion (and I've always been hyper-mobile), my energy levels are pre-RD or maybe a little better, my mood is good (despite continuing harassment), my eyes are doing better, even some uterine issues finally stabilized. I got up to 106 lbs but lost some due to stress-related insomnia, but am working on getting it back up. I'm chopping wood, walking through downed logs and rocks in the field, and back to pre-RD physical capabilities.
The esophageal dysmotility is erratic but generally better than it was, and similar to pre-RD. The Raynaud's/vasculitis still reacts strongly to cold and stress; I likely will always have that.
My orthobionomist moved, but I have an excellent massage therapist who does similar body moves on me and is helping with the MS spasticity that develops due to too much office time.
I continue to take 2.5 mg LDN, compounded locally, rice filler, no dye. A couple months ago, I began taking it when I went to bed because I forgot a few times at 0100 hrs, or wouldn't wake up the first time until 0300 hrs or later, which is too late, and not helpful if I have insomnia. (When I get the latter, I wake up early & can't go back to sleep; it is rare I can't get to sleep in the first place.)
I need to be strong more than ever. Those of us in the U.S. who believe in science-based resources management, sustainable organic agriculture, social tolerance, sane medical care, and a cooperative and nature-based world view...well, we're standing against a strong wind. I am glad I again have the energy to raise my voice and do my part.
So life isn't perfect but it's darn good. And now I need to go shovel snow!
Oh, forgot one other test--bone density. It appears that I am still losing bone but at a much slower rate. And this test was two years after the previous one, which occurred when I was just starting on the LDN. I hope the loss was early on, and I'm flat-lining now. But we'll see in another 2 years. Since a slow loss is typical, if I flat-line, I'll be doing better than most women. But I have a lot of bone to rebuild!
Quick 3-year update. Doing very well. Still on LDN 2.5 mg at bedtime, rice filler, no dye. Also low dose UC-II (undenatured collagen), some anti-inflammatory supplements (turmeric & pepper, glucosamine sulfate, cod liver oil, feverfew) plus diet, evening primrose oil (for MS). Still searching for wildlife, enduring much more office work (data entry), and advocating against harassment (including against me) at work. My naturopath continues as my general practitioner, and helps tweak my overall wellness.
Recent test scores: My blood scores are excellent. CRP 0.09 mg/l. Yup, you read that right. Sed rate 3. (Unadjusted*) Vectra score 11 out of a possible score of 100, which is considered Low. Within that, my IL-6 is now 2.0 (below RA range.) Other scores, including TNF-RI (which is now below RA range), have stabilized or decreased a bit more. My anti-CCP is now 10, still considered negative. My ANA is negative. Anemia gone; WBC's, and platelets continue normal (for me.)
* As of Dec 2017, the Vectra scores were adjusted for age, gender, and adiposity. My adjusted score is 16. This means that my adjusted initial score was even worse than I thought, which means my recovery is even more miraculous. Also, when I state that a score is below RA range, this means that my score was below all 512 people with RA who were tested for calibration of the Vectra test.
I only wish that more people could understand that LDN is a viable initial option for RA/RD, and potentially other autoimmune/inflammatory conditions.
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