Rheumatoid Arthritis Questions

[whitestavern]

Dh just had a complete work up done with his DO. He has had joint pain for a while (mostly hands and wrists and hips). He thought it was Lyme so that was part of the testing. Everything came back normal, except his marker for RA was elevated. I guess normal is 14 and he was 15, so not very high. The doctor said they wouldn't normally think much of that number except for the fact that he has the associated pain. Dh saw an RA doc maybe 6 years ago due to a pain issue, though it wasn't in the hands or hip (can't remember now where it was) but all tests came back fine then.

 

Next step is for him to see a rheumatologist. Before we make an appointment we'll be doing lots of research. We try to treat naturally wherever possible and are thinking we may see a naturopath as well, either before or after, to get their take.

 

I'm looking for any information you guys can provide about RA. If you have it what how did your symptoms start? How was it diagnosed? What can you tell me, if anything, about his test results? How are you treating it (looking for conventional as well as holistic). If he does indeed have this, how might he have gotten it? Just as background, dh is in extremely good health. He's 51 and active. We eat very clean. He doesn't smoke, drinks recreationally, is on no meds.

 

TIA for any info you can provide as we navigate through this!

Edited August 18, 2017 by whitestavern

[prairiewindmomma]

There are lots of markers associated with R.A.

 

It sounds like maybe his sedimentation rate was 15?  That's a marker for inflammation.  C-reactive protein is another marker for inflammation.  People can have systemic inflammation without having RA.  If it was his sed rate, and it was only 15, I would not be worried at all.  Um, at all. :)  

 

While about 1/4-1/3 has sero-negative RA, there is an antibodies test that is fairly definitive. There is also a long list of criteria needed to meet diagnosis.

 

RA has very little to do with eating clean, etc. It is an autoimmune disease.  Some people may have food sensitivities mimicking RA (typically gluten, sugar, or nightshades), but RA does not go away even if you were to live on kale and clear spring water.  There is no known singular cause for RA, but it's associated with genetics or with a trigger from an infection or with chronic stress. Something triggers your autoimmune system to go awry.

 

 

[prairiewindmomma]

FWIW, my rheumatologist is holistically minded. He recommends 1000mg of curcumin daily and 2000mg of a high quality fish oil to bring down inflammation.  I wouldn't start now, though. I would go get all the tests done (and it will be 13-17 vials if they do the full battery) where they will double check for a variety of nutritional deficiencies, co-infections, and other things.  They will also do a full physical examination including checking for loss of range of motion and swelling in the joints.

[whitestavern]

Thanks guys. His RF factor was 15. I have no idea what that means :(

[ktgrok]

Also, there are other forms of arthritis. My mom and aunt have inflammatory arthritis, which isn't osteoarthritis and isn't RA, but something else. It often starts in the hands. In fact, it is really only in the hands for my mom and aunt. I think I probably have it too, but I baby my hands in an attempt to stave it off. 

[madteaparty]

My DS had the juvenile form and he was on pretty harsh meds (methotrexate, which is a chemo drug) until his mid 20s. One day he just went off it, and starting taking massive amounts of fish oils and just living better. I think it was a coincidence that his version of RA went into remission at that time, but it has essentially been like that the past decade+. He's had flare ups in periods of extreme stress but in the meantime he's picked up downhill skiing and is fairly active physically. ðŸ‘. And to be honest, his diet is not particularly thought-through, we are not "....-free" anything. But I do think there's natural ways to lower inflammation and in any event they don't hurt.

[prairiewindmomma]

A positive RF factor does point to RA.

[prairiewindmomma]

Katie--inflammatory polyarthritis is autoimmune in nature. It is also called seronegative rheumatoid arthritis.

[prairiewindmomma]

Let me point you to some sites I found helpful:

http://www.arthritis.org/about-arthritis/types/rheumatoid-arthritis/

http://rawarrior.com/newly-diagnosed-with-rheumatoid-arthritis/

https://www.drweil.com/health-wellness/body-mind-spirit/autoimmune-disorders/rheumatoid-arthritis/

 

And because you mention complementary diet/medicine, I should tell you about the McDougall diet.  I personally saw no benefit when I tried it, but I had friends who did. I do think that meats and sweets tend to be inflammatory in nature, but I don't think this extreme diet is necessary.

https://www.drmcdougall.com/health/programs/

 

The last bit I think you should know is that in the last ten years or so, there have been some fairly dramatic swings in understanding about RA.

1. More things have been brought into the "RA family".  Inflammatory polyarthritis is one of them. Studies are showing that the fundamental disease is auto-immune driven inflammation, and that what we thought of us being a single disease "RA" is actually a variety of diseases and disease courses. The studies tend to pop them into four groups, which track disease course...kinda like sudden onset/no remission, sudden onset/remission, etc.

2. There has been a strong push, driven by data, to put newly diagnosed people on to DMARDS (disease modifying drugs) early on.  If you can halt the disease in its tracks, you get better long-term outcomes.  Previously, some people took a wait-and-see approach.  Once a joint is damaged, it remains damaged.  More to the point, rheumatoid arthritis doesn't just affect joints. It's a systemic disease that can also affect tissues and organs. There is a correlation to heart disease, etc. in particular.

 

[ktgrok]

Thank you for this! When I had last googled a number of years ago the terminology was very different! We do both, my mom and I, see a difference with a less inflammatory lifestyle, and by me watching and jumping in with anti inflammatories and rest as soon as I notice a minor flare I've not had true disease progression like my "never let it slow you down, ignore it and it might go away) mom, who now doesn't have functional fingers. Mine is so minor it can't really be diagnosed at this point, and I'm hoping to keep it that way. 

[JudoMom]

Unfortunately, there are some things that just happen no matter what you do.  I was diagnosed with autoimmune hepatitis 5 years after I'd lost 85+ pounds, was eating better than I ever had, and was extremely active.  My joint pain levels are helped by eating less sugar and staying active helps, but I do have to take daily medication to control inflammation and scarring to my liver, otherwise I'd end up with cirrhosis.  I was on other meds to control pain, but decided to go off of them and if I stay away from sugar my pain levels are tolerable.

 

All that to say, it can feel really unfair when you're doing all the right things, and sometimes traditional meds are required for ultimate health.  With RA, joint damage can occur if it's not controlled.

[amyinva]

Have they checked anti-ccp? That's more specific to RA. I have RA, and my RF andCcp are both off the charts.

Edited August 19, 2017 by Amy in VA

[ktgrok]

Unfortunately, there are some things that just happen no matter what you do.  I was diagnosed with autoimmune hepatitis 5 years after I'd lost 85+ pounds, was eating better than I ever had, and was extremely active.  My joint pain levels are helped by eating less sugar and staying active helps, but I do have to take daily medication to control inflammation and scarring to my liver, otherwise I'd end up with cirrhosis.  I was on other meds to control pain, but decided to go off of them and if I stay away from sugar my pain levels are tolerable.

 

All that to say, it can feel really unfair when you're doing all the right things, and sometimes traditional meds are required for ultimate health.  With RA, joint damage can occur if it's not controlled.

 

Right, sorry if I implied you could totally control or cure it. This is genetic for me. But, due to a few factors in my control and a bunch NOT in my control, it isn't bad yet. Yet. 

[JudoMom]

Right, sorry if I implied you could totally control or cure it. This is genetic for me. But, due to a few factors in my control and a bunch NOT in my control, it isn't bad yet. Yet. 

 

Oh, I didn't get that from your post at all :).  I think it's wise to do what you can to control it.

[ktgrok]

So...I jinxed it by saying I don't have symptoms right now, lol. I made clay on the stove for a homeschool project yesterday and all that stirring caused a flare in my index finger/hand. Finger is sore, hand is stiff. Bleh. And my toe is acting up too. Not bad, just a bit sore. 

 

But thanks for all the new information. I'm sero negative with an elevated sed rate, and hadn't realized definitions had changed. 

[PeterPan]

There are lots of markers associated with R.A.

 

It sounds like maybe his sedimentation rate was 15?  That's a marker for inflammation.  C-reactive protein is another marker for inflammation.  People can have systemic inflammation without having RA.  If it was his sed rate, and it was only 15, I would not be worried at all.  Um, at all. :)

 

While about 1/4-1/3 has sero-negative RA, there is an antibodies test that is fairly definitive. There is also a long list of criteria needed to meet diagnosis.

 

RA has very little to do with eating clean, etc. It is an autoimmune disease.  Some people may have food sensitivities mimicking RA (typically gluten, sugar, or nightshades), but RA does not go away even if you were to live on kale and clear spring water.  There is no known singular cause for RA, but it's associated with genetics or with a trigger from an infection or with chronic stress. Something triggers your autoimmune system to go awry.

 

 

FWIW, my rheumatologist is holistically minded. He recommends 1000mg of curcumin daily and 2000mg of a high quality fish oil to bring down inflammation.  I wouldn't start now, though. I would go get all the tests done (and it will be 13-17 vials if they do the full battery) where they will double check for a variety of nutritional deficiencies, co-infections, and other things.  They will also do a full physical examination including checking for loss of range of motion and swelling in the joints.

 

Can I just piggyback here and ask what, in a nutshell, are the ideal or correct or informed tests for RA? I have some odd pains, too much stress, etc, and have been told at least some of it as arthritis. I got a bottle of something that says turmeric with curcumin and it does seem to help. I haven't taken it a lot yet. It was so new and I had so much else going on, sigh. I do hurt more than the average bear, and I figured it (the turmeric supplement) was probably something that wouldn't hurt whether it's RA or just turning 40 or what. Actually I was 38 when she told me my lower back was arthritis. It was a PT, not a doc. Other than my pulmonologist, I haven't been to an MD in, um, well a long time. Over 15 years definitely. 

 

But I'm happy to run labs and see if anything is going on. I was going to update my thyroid labs. I can order them myself through Heath Check USA.com or at least that's where I did my thyroid labs before. And yes, one of my fingers is sore. I thought maybe ds hit it, but I don't recall that happening. This has happened in the past, where it would hurt and then improve, sigh.

 

So labs and then what curcumin product is correct. I just picked this one up at the VitaminShoppe 900 mg, 95% curcuminoids, because I was there and saw it on sale.

SaveSave

Edited August 19, 2017 by OhElizabeth

[PeterPan]

Is there a preferred brand on the curcumin? 

[ktgrok]

Just read that smoking can be a big trigger/worsening factor..my mom and aunt smoked, my sister and I never have. Maybe that has helped? Although now the big toe is really bothering me, especially when I drive. Wondering if the cold I'm fighting off is the reason it is flaring or if it being triggered in my hand from activity could also cause a chain reaction to trigger the foot? Like, the inflammatory hormones or whatever from the hand trigger an episode and then it can go anywhere? 

[ktgrok]

Also, if Disease Modifying drugs are off the table for the time being due to nursing, is there any reason to go back to the doctor? At this point I'll take NSAIDs for a few days, try to remember my fish oil, maybe some MSM...and it will die down in a few days most likely. Any reason to go back and get the newer bloodwork that checks for the other things, versus just RA factor and sed rate, which I had done years ago? 

[JudoMom]

When I'm sick, I hurt worse.  When I'm sleep deprived, I hurt worse.

I'd probably wait on the doctor until I was done nursing, unless things got a lot worse.

[prairiewindmomma]

I take this: https://www.amazon.com/Jarrow-Formulas-Curcumin-Provides-Antioxidant/dp/B0013OVSUS?th=1

Whatever you take, make sure it has the patented BCM-95 complex.  Some people also take bioperine (black pepper) because it has a synergistic effect with curcumin.

 

OhE, the labs question is more complicated in terms of initial diagnosis.  When I mentioned earlier that I had 17 vials of blood taken, some of those vials were split into multiple tests.  And, according to my old rheumatologist, there's some degree of art to reading some of the pathology tests. She was insistent on only using in house lab because she trusted her pathologist only on some of the lupus tests, based on her experiences with patients using in house labs versus others.

 

R.A., like many autoimmune diseases, is as much a diagnosis of exclusion as it is a diagnosis of conclusion.

 

Nutritional tests:

vitamin D

vitamin B

 

 

Rheumatoid Arthritis dx tests:

• Rheumatoid factor (RF)
• Cyclic Citrullinated Peptide (CCP)
• Erythrocyte Sedimentation Rate (ESR)
• C-Reactive Protein (CRP)

Antinuclear Antibody (ANA)

 

Kids are fussing; will post again later....

[PeterPan]

Ok, perfect. All those are on the arthritis panel and it says it will help distinguish between osteo and rheum. I guess I'm dinghy (like the boat) enough that I had assumed when the PT said arthritis that she meant osteo. But this is saying that when you're young it's usually rhuem, sigh. Given everything else that has happened to me, it might as well be. 

 

Why does it throw in a heart panel?? It's only $145 for the whole gig, but still it seems odd. Or are you saying the RA affects the heart eventually so they check that too? Or it was bonus for good measure?

 

Osteoarthritis and Rheumatoid Arthritis Tests | HealthCheckUSA

 

[prairiewindmomma]

Katie--I took Plaquenil while both pregnant and nursing. Sulfasalazine (?) is another that is ok for nursing. I always flared 9-12 months postpartum as my immune system kicked back in.

[prairiewindmomma]

OhE I have both osteo and RA and I am just a year or two younger than you if I have pieced things together appropriately. RA tends to be bilateral and symmetrical--typically hands, wrists, toes first and then progression into bigger joints.

[prairiewindmomma]

RA does correlate to heart issues, but I haven't ever had those panels run.

 

My 4yo is finally napping.... She also ran a celiac panel, Lyme, Babeosis?, and some other vector borne disease stuff to exclude other common causes of joint pain.

 

My current rheumatologist always runs full CBCs, liver and kidney panels, and vitamin D--every 3 months.

[prairiewindmomma]

My rule of thumb is that if I am needing ibuprofen more than 2x a week, I need to change things up. Ibuprofen isn't without consequences, iykwim. I also have a pretty high pain tolerance.

 

I'd give it some time, Katie. If it bothers you more often and if you see obvious heat or swelling, photograph and journal it. I don't think anyone is anxious to go onto meds but the studies do point to a milder disease course with early intervention and that has proven true for me. My friends who waited have permanent joint damage. X-rays are part of the diagnosis process, and they are repeated every 2 years if you anticipate another pregnancy and are trying to time things.

[ktgrok]

My rule of thumb is that if I am needing ibuprofen more than 2x a week, I need to change things up. Ibuprofen isn't without consequences, iykwim. I also have a pretty high pain tolerance.

 

I'd give it some time, Katie. If it bothers you more often and if you see obvious heat or swelling, photograph and journal it. I don't think anyone is anxious to go onto meds but the studies do point to a milder disease course with early intervention and that has proven true for me. My friends who waited have permanent joint damage. X-rays are part of the diagnosis process, and they are repeated every 2 years if you anticipate another pregnancy and are trying to time things.

 

Thank you! Unless this is the start of a bad round, i should be fine by tomorrow or the next day and then fine for quite a while. Last X-rays were more than 2 years ago, so just whenever I manage to get another physical I'll ask for repeats I guess. The joints affected do get warm when flared, but not visibly swollen. My mom has the whole shebang :(  She's bone on bone in most of her hand joints, has it in her back in some places, etc. Part of the issue is they at first thought it was OA so didn't do much via treatment, then she had cancer, and the arthritis just went on the back burner. 

[whitestavern]

I just wanted to pop back in and say thank you for all the information that's being shared. We've been on vacation and dh didn't want to think about it while we were away, so I haven't had a chance to even sit down and read everything thoroughly.

 

Do you think before he sees a rheumatologist that we should just go ahead and get some of this testing done? It might be good to go in with a bit of knowledge.

[Junie]

:grouphug:

 

I was diagnosed with RA almost 11 years ago.  It came on pretty fast, starting in my toes and then into my fingers.  Nine months later I was starting a biologic because I couldn't get out of bed by myself.  :(

 

A few weeks later I found out that I was expecting again, so I had to go off the meds.  (Enbrel, which is what I was taking, was not approved during pregnancy then.  It is now.)  I decided to go the holistic route and change my diet.  After the baby was born I had allergy testing done (my theory was that if I had food allergies I was feeding my immune system, thus causing more inflammation and pain).  I found out that I am allergic to wheat and I went on a gluten free diet.  Fast forward 6 weeks and I was feeling much better -- about 80 percent better -- and I put away my cane.

 

I still had bad days and I had quite a bit of pain, but I was happy to be med free.

 

Last fall all of that changed.  The pain became stronger and I became weaker.  I am walking with a cane again.  I started taking Enbrel again.  It is helping, but I have permanent joint damage.  My wrists are deformed and "locked".

 

Looking back, I would have gone back on Enbrel as soon as I had finished nursing the baby.  (She had feeding issues, so nursing was the best choice for her health.)

 

I hate medications.  Hate.them.

 

But I wish I would have taken them.