Any Rheumatoid Arthritis Sufferers?

[Belinda Barfield]

Not seeking medical advice, I understand the ins and outs of the disease. My dad was diagnosed about three months ago. I'm just looking for some tips I can pass along to him. Mainly his hands and shoulders are very stiff and painful in the mornings. He is on methotrexate and is having a lot of nausea also. He's lost about 15 pounds (he now weighs 150) because he just doesn't feel like eating. He has given up driving mainly because I think he has lost some confidence in his ability to control a vehicle. My mom drives everywhere now - something I never thought I would see - and she has taken on all of the lawn cutting, tractor driving, etc. (I just found out about the lawn cutting and that's something I'll be taking over.) I'd like to be able to offer him some hope that he is going to get better but it seems that is going to be a very slow process. Any advice appreciated.:) Oh, and he also had an elevated uric acid on his last blood work and I wonder if he has an element of gout going on as well. When he first went to see his doctor it was because his right ankle was swelling. He isn't on any medication for gout.

[David G Baker]

Belinda, The nausea, not eating, weight loss and maybe a few other things may be associated with his meds. The effects you wrote about, the pain in his hands, shoulders, etc sound normal for arthritis. I have problems with different meds and really have to watch for side effects when starting on a new drug.

[Shawn Pixley]

Belinda,My sympathies go out to you and your father. I don't have any personal experience, but I have some insight into the disease. I might suggest you look into treating the inflammation rather than just masking the pain. There are a number of biologic therapies that address the TNF or IL mechanisms. Many are finding some relief from them as well as delaying progression. These typically address the inflammation which will reduce pain and joint damage. Fair warning, I work for one of the manufacturers of these therapies. But it may be a question your father can ask his doctor.

[Chris Atzinger]

Hi Belinda,

My wife was diagnosed with RA at the age of 29. The methotrexate alone was not enough to make her feel better. She was on enbrel for a bit, and then switched to Humira which worked better for her. My advice is to be upfront with his specialist, and keeping trying different meds until they find the right combination. There are tons of new TNFs etc. out there.

Good luck,
Chris

[Belinda Barfield]

Belinda,My sympathies go out to you and your father. I don't have any personal experience, but I have some insight into the disease. I might suggest you look into treating the inflammation rather than just masking the pain. There are a number of biologic therapies that address the TNF or IL mechanisms. Many are finding some relief from them as well as delaying progression. These typically address the inflammation which will reduce pain and joint damage. Fair warning, I work for one of the manufacturers of these therapies. But it may be a question your father can ask his doctor.

Okay, Shawn, I know some but obviously not enough. TNF = ? IL = ? I appreciate your input. Since you some insight I'll give you some other information. About a year and a half ago my dad was diagnosed with PMR. He was placed on prednisone and the dosage was tweaked until he was actually pretty comfortable and pretty functional. After a week and a half long hospitalization earlier this year for something else entirely he ended up going to a new rheumatologist. At his first visit - without doing any bloodwork - the new rheumatologist takes one look at my dad's hands and tells my dad he doesn't have PMR, he has RA. The doctor weaned him off his prednisone and started him on hydroxychloroquine daily and methotrexate once a week. He's having a lot of nausea with the methotrexate, and not much relief at all. Daddy's getting very frustrated and not a little depressed over the fact that he really can't do most of the things he wants to do.

[Belinda Barfield]

Hi Belinda,

My wife was diagnosed with RA at the age of 29. The methotrexate alone was not enough to make her feel better. She was on enbrel for a bit, and then switched to Humira which worked better for her. My advice is to be upfront with his specialist, and keeping trying different meds until they find the right combination. There are tons of new TNFs etc. out there.

Good luck,
Chris

Thanks, Chris. I've tried to talk to my dad about being up front but daddy is of a different generation. In his world the doctor knows everything and the doctor knows best - I'm not saying that's wrong, I'm just saying daddy doesn't feel comfortable asking about alternative medications. My mom has been doing some reading and I believe she is ready to ask the doctor about alternatives. Having said all that, my dad called the doctor's office last week to discuss the fact that he doesn't seem to be getting better and they gave him the medication for nausea, gave him an order for blood work to be done in October, and he'll have a follow up visit with the doctor in December. This does not sit well with me.

[Ian Franks]

Belinda,
This tissue salt tablets (http://www.natura.co.za/index.php?q=selfmed|productview,24,Combin%20Assist %20Arthritis%20and%20Rheumatism) was recommended to me by a runner for arthritis in my foot and does seem to help. Not sure if it is just a placebo effect.

[Belinda Barfield]

Belinda,
This tissue salt tablets (http://www.natura.co.za/index.php?q=selfmed|productview,24,Combin Assist Arthritis and Rheumatism) was recommended to me by a runner for arthritis in my foot and does seem to help. Not sure if it is just a placebo effect.

Thanks Ian. I'm hesitant to suggest anything over the counter to my dad because he is on so many medications. In addition to the meds mentioned above he is on something for high blood pressure, something for cholesterol, something for tremors, blood thinner, and another med I can't remember right now.

[Shawn Pixley]

Sorry, for not being precise enough. TNF is tumor necrosis factor. These are cytokines that cause cell death. TNF-alpha is a major regulator of inflammatory response in organ systems. iL is Interleukin. It ia also a cytokine that afftects autoimmunity and inflammatory response. The mechanism of the therapies is to block the receptors thus blocking the binding site and inhibiting the inflammatory actions.

[Phil Thien]

I know you don't want to suggest any more pills for your father.

But I will tell you about vitamin D.

There seems to be more and more evidence coming in that low levels of vitamin D contribute to a list of ailments.

If you just google "vitamin d arthritis" you will find a bunch of articles, from REAL MEDICAL sources, not quacks, talking about the connection. Here is one:

http://www.johnshopkinshealthalerts.com/alerts/arthritis/JohnsHopkinsArthritisHealthAlert_3300-1.html

Google "vitamin D" and anything else (depression, eyes, etc.) and you will likely see connections.

I bring this up specifically because about three years ago I started having terrible pain in my legs and back in the mornings. I had previously (about 1995) hurt my back in a work-related accident and while the pain had been manageable, my morning pain started deteriorating badly about 2009.

I saw my doctor, who had previously told me that I was developing arthritis and that the pain I was experiencing would be changing. He said it would only be a matter of time before I needed to see a specialist.

So last year a customer (M.D.) of mine walks into the shop, looks at me, and says "how much milk to you drink?" Not much, said I, I prefer tonic with my gin (just kidding, not a big drinker am I). But anyway, this guy took about twenty minutes of his time to sit at my computer and show me the research on vitamin D. It was stunning.

So fast forward to today, it has been almost a year, and I'm no longer feeling discomfort in the morning. I have GAINED mobility in my back, the difference is amazing.

The US RDA of D was recently adjusted and many very respected doctors said the levels still aren't high enough. Some controversy there (read the entire article):

http://www.huffingtonpost.com/leo-galland-md/vitamin-d-beware-the-hype-_b_791976.html

So my advice is to research this yourself (don't take my word), and have your dad or mom talk to his doctors about it to make sure he is getting enough. The side effects, as long as he doesn't go nuts and take gobs of the stuff, are nil. The upside can be substantial. And the stuff is cheap.

[Bill Cunningham]

Lots of people say this works...
http://www.peoplespharmacy.com/2007/09/13/do-ginsoaked-ra/

[Chris Atzinger]

Thanks, Chris. I've tried to talk to my dad about being up front but daddy is of a different generation. In his world the doctor knows everything and the doctor knows best - I'm not saying that's wrong, I'm just saying daddy doesn't feel comfortable asking about alternative medications. My mom has been doing some reading and I believe she is ready to ask the doctor about alternatives. Having said all that, my dad called the doctor's office last week to discuss the fact that he doesn't seem to be getting better and they gave him the medication for nausea, gave him an order for blood work to be done in October, and he'll have a follow up visit with the doctor in December. This does not sit well with me.

Hi,

I am a consultant for pharma companies for their clinical research, and have done a lot of work with RA trials, in addition to my wife actually having RA. The MTX requires several weeks (like 8-12) to build up in your system and have a therapeutic effect, so it might still be too soon to write it off. The MTX in combination with hydroxychoroquine is a common 1st line regimen for newly diagnosed RA patients. The next step would be to add in Enbrel, but insurance would usually require you to "fail" the 1st line treatment.

I can understand your father's mentality, I am not much different! However, I specialize in quality of life, drug safety, and health economic research, and I believe the tolerability of a treatment is critical. If his current treatment isn't working, and actually making him feel worse due to the side effects, what's the point? I would start asking about the biologic treatments as soon as possible. They work.

Good luck!

[Belinda Barfield]

Thanks all for you input, I really appreciate it.

[Larry Edgerton]

Belinda

I had a pretty active lifestyle as a youth, well, into my 40's, and in the process I managed to break 63 bones in various misadventures. Arthritis is here, and I am staying off of all the meds as long as possible, just my choice. Meds screw you up more than the problem half of the time it seems to me. I am reading this with interest because I suspect it will not get better as time passes......

For the gout several people in my family, and I'm surprised it is not me, have had great success with dried tart cherries. I know it sounds too simple, but my dad, mom brother and sister all eat dried cherries for a few days when it flairs up and it makes it go away. My dad is the worse, and he is now a dried cherry addict, but the side effects are just a couple more trips to the john a day, not a bad thing at 80.

Sorry your dad has to suffer. I told my wonderful wife that some day she may have to put me down like a bad horse if all my past sins catch up to me at once.

Larry

[Chris Kennedy]

I feel a need to weigh in here. Checking several links that have been provided, there might be a misunderstanding.

Rheumatoid arthritis and osteoarthritis are not the same. The second is generally attributed to getting older -- your joints wear out. Rheumatoid arthritis is an auto-immune disease. RA and osteo are completely different beasts. With osteo, joints are breaking down, usually from age but also activity and mistreatment/abuse. With RA, the body is attacking itself. My mother was diagnosed with RA in her late 20's, and trust me, vitamin D wasn't going to cure it. Our family friend's child was even worse, developing RA in his early teens. He was eventually given gold shots to basically stop him growing because the RA was doing such damage as he grew.

Maybe things have changed in the last ten years, but so far as I know, you don't get better from RA. You may be able to slow it down, but there really aren't means to reverse damage caused by auto-immune diseases. Now, my information is out of date -- I haven't been involved in this since my mother died -- but I did also have a run in a number of years ago when I had joint problems. When the docs found out that my mother had RA, there was serious concern.

Chris

[Belinda Barfield]

Chris, thanks for your post. I was going to post basically the same information regarding the difference between regular old osteoarthritis and RA.

Larry, not taking meds for RA is not an option. My dad's mother had RA and had both knees replaced in her early 70s. My dad has a brother and a sister, both with RA. It's a family affair.

Chis A., thanks for the info. My dad is on Medicare so going with the "try and fail first" method makes sense to me knowing what I know of the insurance industry (particularly Medicare and the VA system). It doesn't make sense from a patient perspective, but I understand the doctor's decision.

[Phil Thien]

I feel a need to weigh in here. Checking several links that have been provided, there might be a misunderstanding.

Rheumatoid arthritis and osteoarthritis are not the same. The second is generally attributed to getting older -- your joints wear out. Rheumatoid arthritis is an auto-immune disease. RA and osteo are completely different beasts. With osteo, joints are breaking down, usually from age but also activity and mistreatment/abuse. With RA, the body is attacking itself. My mother was diagnosed with RA in her late 20's, and trust me, vitamin D wasn't going to cure it.


Rheumatoid Arthritis Linked to Vitamin D Deficiency, Study Suggests
ScienceDaily (Apr. 10, 2010) — Women living in the northeastern United States are more likely to develop rheumatoid arthritis (RA), suggesting a link between the autoimmune disease and vitamin D deficiency, says a new study led by a Boston University School of Public Health researcher.

In the paper, which appears online in the journal Environmental Health Perspectives, a spatial analysis led by Dr. Verónica Vieira, MS, DSc, associate professor of environmental health, found that women in states like Vermont, New Hampshire and southern Maine were more likely to report being diagnosed with RA.

"There's higher risk in the northern latitudes," Dr. Vieira said. "This might be related to the fact that there's less sunlight in these areas, which results in a vitamin D deficiency."


Source: http://www.sciencedaily.com/releases/2010/04/100407121227.htm


Multiple sclerosis breakthrough: Vitamin D directly terminates production of disease-causing protein

ProHealth.com
August 16, 2011



Mechanism suggests a potential new path toward pharmaceutical treatment of MS, as well as therapies for other autoimmune diseases such as rheumatoid arthritis, type 1 diabetes, eczema and psoriasis.

For years scientists have noted an association between levels of vitamin D in a person’s body and the person’s ability to resist or minimize the effects of multiple sclerosis (MS) but didn’t understood the mechanism involved. Until now.

New breakthrough research by a collaborative team at UMDNJ-New Jersey Medical School and Stanford indicates that vitamin D directly terminates the production of a disease-causing protein.


Source: http://www.prohealth.com/library/showarticle.cfm?libid=16459

I understand the skepticism surrounding all the vitamin D hype. But the volume of research coming back with positive vitamin D associations is simply overwhelming, and impossible to ignore, IMHO.

I also understand that the cure may not be as simple as popping vitamin D supplements. But suffering any of these diseases and ignoring vitamin D intake seems very contrary to the research.

Again, people should do their own research, and speak with their physicians.

[Belinda Barfield]

Phil, my dad spends a lot of time outdoors in the sun, so much so that he has had multiple skin cancers removed over the past couple of years. He also eats a lot of ice cream and drinks milk. It seems like he would be getting a good bit of vitamin D. I'll add this to the list of things for my mom to ask the doctor about when they go back to his office.

[ray hampton]

Belinda, now that you answer a question before I got to ask it, did your father had dark hair , this is in connection to his skin cancer

[Phil Thien]

Phil, my dad spends a lot of time outdoors in the sun, so much so that he has had multiple skin cancers removed over the past couple of years. He also eats a lot of ice cream and drinks milk. It seems like he would be getting a good bit of vitamin D. I'll add this to the list of things for my mom to ask the doctor about when they go back to his office.

Your father's levels of vitamin D may be sufficient.

I'm just going to say one more thing, then I'll shut-up about the vitamin D.

If you read the reviews for this book:

http://www.amazon.com/Power-Vitamin-Comprehensive-Information-Deficiency/product-reviews/1432748106/ref=dp_top_cm_cr_acr_txt?ie=UTF8&showViewpoints=1

You will note that, you need 20 glasses of milk a day to get enough vitamin D from milk alone. Products manufactured from milk, BTW, are not typically fortified. So ice cream doesn't count (and the audience goes awwwwww).

Just read those reviews. The book was written by an endocrinologist. Some of the reviews are written by other M.D.'s. Those reviews hit the important points in the book. I haven't read the book, but there are other books just like it on Amazon, written by M.D.'s, and the take-away is that most of us probably aren't getting enough vitamin D.

[Larry Edgerton]

Belinda

I guess my post does sound as if I was confusing what I have and RA, but that is not the case. A good friend of mine in his mid fifties just had both his knees replaced because of RA. He was an awesome woodworker, much better than I, and I watched his skill level go down with the meds he was taking. It is indeed sad. He now works for me part time in my shop doing what he can. not a lot, but it makes him feel like a contributor.

Not a real big fan of the medical establishment myself as you may have guessed, so I personally try to avoid meds, again, nothing to do with RA.

Good luck in your quest, Larry

[Belinda Barfield]

I'm just going to say one more thing, then I'll shut-up about the vitamin D.

If you read the reviews for this book:

http://www.amazon.com/Power-Vitamin-Comprehensive-Information-Deficiency/product-reviews/1432748106/ref=dp_top_cm_cr_acr_txt?ie=UTF8&showViewpoints=1

You will note that, you need 20 glasses of milk a day to get enough vitamin D from milk alone. Products manufactured from milk, BTW, are not typically fortified. So ice cream doesn't count (and the audience goes awwwwww).



Phil, hope you don't think I'm questioning your judgement, just asking a question.


Belinda

I guess my post does sound as if I was confusing what I have and RA, but that is not the case.

Larry, wasn't trying to single anyone out. I appreciate your input.

Ray, my dad had/has light brown hair.

[Phil Thien]

Phil, hope you don't think I'm questioning your judgement, just asking a question.

Not in the least. I want you to question my judgement, I'm not a doctor. :)

If anything I'm worried about coming on too strong.