Newly diagnosed - feeling better | Arthritis Information

So nice to meet you.

Natural supplements or vitamins may work with RA but I do not believe that I would use them alone for RA and not with out proper supervision...Even though some may be considered natural, it does not mean that they can not harm you. 

What some people do not understand about RA is that, yes, it is a debilitating disease but it can be managed and or possible modified, if we can get it controlled in the early onset of the disease.  Drug therapy may not be the whole answer but it is working and with the newer drugs and prospective on the disease itself, we are having better outcomes with less toxicity.

Your RA factor is just that a, factor.  It is not the whole of the problem.  There are many other factors to be looked at and worked with in order to treat the disease.

Once the Rheumatologist gets the right combination of drugs that work well with your body, then your RA will be come more tolerable and easier to manage.  It may take awhile, so you will need to have some patients getting to that point.  If you do decide to add a new OTC, new vitamin or new health supplement... remember to always ask your doctor about it before taking it on your own.  There can be some terrible risk in taking something with out knowing how it will inter react with the medications your are on.

Hope your day is full of warm sunshine and laughter,

Toni

Hi Toni,

Thanks for the welcome. I cannot describe how terrified I was when my body was in so much pain and my doctor just said to take some NSAIDS and come back in month to get the factor number checked again. My hair was falling out, my fingernails had little clouds in them(white spots), and my skin was basically translucent. I had lost weight although I was still eating. My index finger and my thumb swelled so badly I could hardly write and the pain was horrible. I could not take the garbage out, lift my child into his bed, tie shoes, cook, or do any of the other things necessary to take care of my kids by myself.

I had trouble taking stairs and even opening doors(car doors too). I had trouble driving. I didn't want to do anything because EVERYTHING hurt. I wanted to find out the cause of this, not put bandaids on the pain, but get my body back to normal. I searched out any book I could get my hands on about auto-immune diseases, and arthritis. I went to the library and looked up medical journal articles on arthritis. I did research on the internet and basically put my entire life on hold to research and find out what was up with this. There is NO RA in any of my family members or extended family members.

My research was on hormones, synovial fluid, "cholesterol/calcium crystals", and finally the intrinsic factor. Because the one thing I could not understand is how my body looked like I was starving it although I eat very healthy foods. Then I looked at my kids vitamins vs. my womans vitamins and the difference was the thiamin(B1). So I took my kids vitamins and felt a little better. I was desperate to try to get my body to process the food I was eating and stop attacking my own body to get the nutrients I need(bones are rich in calcium and other nutrients). When you do not have the correct vitamins, your body goes wacko trying to figure out how to keep you going. I truly believe that the intrinsic factor and how your body metabolizes cholesterol is the key to feeling better.

So I talked to my doctor and he really didn't seem to care. He wanted me to see a rhuematologist after I got my RA factor tested again. Well, I was not functioning, and I needed to find something instead of just letting my body die from the inside out. So I did take it upon myself because I seem to care about my health more than my doctor. I did take B1 on my own but in a balanced way - I broke up the vitamin and take only the tiniest little bit at a time(because they only sell it in megadoses which would be bad for me to take all at once). Balancing that with the proper amount of magnesium(and my regular multi) because that is what helps the B1 to do its job properly.

I can't explain how much better I feel. I could take stairs without any pain at all. Of course a few days I had NO pain and overdid it by literally running around campus with tears of joy. I was so happy, I could actually hug my kids, dress myself, take notes, open doors, and take the garbage out with little or no pain.

I know the doctors are there to give us medicine but if I can retrain my body to process food correctly then hey, I will take charge of my own health and body. The doctor did NO testing to see if I was deficient in any of the necessary vitamins ESSENTIAL to life.

Then after I started feeling better, two of my friends told me their relatives take thiamin hydrochloride, one for osteo, and one for RA because their doctors found they were deficient. Well, they are lucky to have doctors that care and don't want to throw high priced meds at them not knowing what it is actually going to do in the long run either. Maybe the rhuematologist will run a battery of deficiency testing to see if I am deficient before he throws me on some addictive med that may mess me up more than I already am. I haven't seen the rhuematologist yet. I just don't remember there being rhuematologists and all this arthritis in everyone when I was a kid. Man, I see someone every day limping along the street and I can tell it is arthritis. So why is that?

Hi newragirl,

I am sorry it has taken a few days to get back to you.  I have been so busy and have not even taken time out to smell the coffee.  Come to think about that I am not sure I have had any coffee either...LOL.

Any way, I wanted to let you know that I saw your post and I will post a better reply tonight...

Hope your day is a good one and full of warm thoughts.

Toni

With each decade some illnesses seems to be more prevalent than the last decade but they have always been there.  Maybe we just don't recall them because we had nothing to related to them with.

I feel that a Rheumatologist is better equipped to DX your RA than a GP at least it worked out that way for me.

I know just what you must have felt when you had your first RA flare...Hell could not have been worse...And fear was a biggy for me too.  It took 9 months for doctors to figure out what was happening to me and I was sure glad to hear it was something that was not going to cause my demise anytime soon.

Not every doctor will order blood panels to be done if they don't feel it's necessary...and it can be expensive to have to pay for them your self but if it will make you feel better then I would ask the doctor to order it.

It is true that sometimes a nutrient or vitamin like Thiamine can help you. especially since it is hard to get all the required daily amount of nutrients we need through eating....Just make sure that you are getting the safest amount and that you are knowledgeable about the Vitamin and how it works with other medications you may be taking or possible will have to take....We don't want you to have any serious side effects. 

I use a good multi vitamin,Calcium with vit D and Magnesium,  vit A/C, Fish Oil , vitamin E... so I understand how you may be hoping that the Thiamine works better than the toxic meds that our doctors prescribe for us..But I also take the other drugs with them and I can honestly say, that my RA doctor is impressed with how healthy my blood work is looking but I still can not keep the inflammation down even with everything I take and that is why I had to go on the Enbrel.  To try to stop the progression of the RA from happening or to keep minimal... that is the reason for some of the meds we take, not just pain or to stop the fatigue we all get.  

Remember when dealing with RA, that the earlier we start treatment for it, the better prognosis we can have.  So if after a few months and the RA is not getting any better, think about going on the meds that your doctor is prescribing for you.  Also, you may have more flares, so ask your doctor for a med for pain and fatigue that will not be affected by vit B1

I wish you luck and hope that what you are looking for works well for you.

Take care,

Toni

so, i'm really curious, newragirl, did you get on any meds at all? or just doin the vitamin thing?

i'm amazed that it is helping you feel so much better.  it's true in my experience that general practioners and ra docs don't do nutritional type testing or treatments. i did go to a nutritionist on my own when i was first diagnosed, but she was very clear with me that there is no cure for ra but that she could help me with a long term approach to feeling better, in general. at the time, i took the short term relief - to stay working and parenting.

so happy for you. makes me think to look into that again.

Hi guys. I have not seen a rhuematologist yet and I am not on any meds. If I was on meds I would be much more careful with taking any kind of supplement. Would definately talk to my rhuematologist first. I can tell that just taking thiamin hydrochloride did not "cure" me of the RA. But yesterday I did not have any pain at all the entire day(and it rained all day). What I am doing now is taking the very small portion(like a grain of sand, maybe a bit bigger) of this megadose thiamin hydrochloride with the first bite of every single meal. I eat the same stuff I ate before but I have always eaten pretty healthy. And I guess I do eat more raw spinach than I used to(on sandwiches and stuff). I definately still drink milk with every meal. I also eat at least half of a banana with every meal and have increased the amount of fruits I eat daily. I do not know why my pain completely went away for a day, I do know that thiamin is a helper molecule for digestion and processing cholesterol. Oh ya, I lowered my caffeine intake to about 2-3 cups per day(I used to drink a couple pots of coffee per day). And I don't drink coffee anywhere near meal time. I do drink a lot more water and drink one glass of cranberry juice every day.

So today I am a little sore(no swelling though-not hot) in my left wrist because I went overboard yesterday and I was up until 2:00 a.m. working and up at 7:00 a.m. with the kids. I am trying to get more sleep but sometimes doesn't work out. I was amazed I could even stay up that late, when ra came on really bad I could not keep my eyes open past 10 p.m. Also when first diagnosed with ra noticed dents in my fingernails with white clouds in the pink part, skin was translucent looking, trouble hearing as well, lots of hair in my hair brush, lots of pain and swelling. Since taking B1, not as much hair loss, fingernails are growing big time, better hearing(always turning down the tube/radio), way less pain, very little swelling. The attacks went from two joints attacked at the same time with additional pain in my feet/knees to one joint to now nothing for now. How long will this last, I don't know. Is this a cure, probably not. Does it help me to be a mom and get through all the responsibility of my life - yes. My mood is much better.

p.s. Thiamin mononitrate is not the same as thiamin hydrochloride - I take thiamin hydrochloride.

Hi newragirl,

I am glad to hear that your mood is getting better I think I am seeing it in the way your are writing your post.  I am so glad to hear that you are.

I know what Thiamine monoitrate is mostly used for...still be careful with the Thiamine Hydrochloride..

I see you are watching how you eat...that is good to hear.  We all should be doing that, weather we have an illness or not...also, if you do eat a lot of red meat try to cut back on that as they are trying to link to much red meat to RA and some other diseases.

RA does fluctuate the way you have mentioned...one day feeling fine and ready to conquer the world, the next day it's all you can do to put one foot in front of the other...That goes with the RA territory...Now for coffee, decaf is good if you find that you are having to many side effects from it but they are now finding that regular coffee and tea is actually a benefit to our bodies but I still would make sure I do not drink to much in one day.

Here is some possible reasons for your nail problems. (excerpt from "go ask Alice")

Contact with harsh chemicals

Household cleaning products, strong soaps, detergents, and even nail polishes and nail polish removers can dry, irritate, and weaken nails, making them susceptible to breakage, especially in people who are sensitive or allergic to certain ingredients in these products.

Nutritional inadequacy

You may not be getting enough iron, calcium, zinc, protein, silicon, and vitamins A, B complex, and C in your diet.

Other than the above, skin diseases, such as psoriasis and fungal infections, injuries, excessive contact with water, and other conditions (e.g., congenital and genetic nail disorders, melanoma) can change the appearance of your nail.

http://www.goaskalice.columbia.edu/1605.html

I am glad to hear that you are feeling a little better and maybe getting around better too.

Take care of yourself and let us know what the Rheumatologist says. 

Toni

New girl~ It sounds like you are taking an active role in your health and that's a wonderful first step in a long life with RA.

Toni knows what she's talking about though and I hope you'll take her advise and speak treatment from a RD. I don't meant to say that what you are doing isn't helping....and won't continue to be a help in the future but it would be a mistake to think that you'll be able to control the joint distruction with diet changes alone.

I understand not wanting to take a lot of expensive...sometimes toxic drugs; but sometimes that's unavoidable. I've been on DMARD theropy for 12 years now, and recently started Biologics this past year. Over that time my doctors have "Slowed the progression" just as they had hoped. They haven't stopped it....but after all this time I still have very minumal joint damage; yet I do have some obvious damage. I honestly believe had I not been on these treatments all these years I would not be leading the life I am today.

I'm not sure how long you've been dealing with your problems but please be aware that symptoms that seem to disappear today can and likely will come back....everytime they do you are subjecting your joints to damage that can not be reversed later.

It is not my intention to discourage anyone for finding and using alternative treatments....it's mearly my intention to warn you of the repercussions of not seeking treatment for a progressive disease that can leave you crippled in a matter of years if not managed properly.

Lovie