Hello Everyone,
Can I ask what everyone used over the counter for symptoms of RA? What worked best for you? My story is long, I posted it the other day but I'm curious to know what you all used prior to getting prescription. Does anyone take Vit B-1? Thanks in advance!
Thanks Sara.
It's interesting what helps some folks and what does not. Thanks for your input. What side effects did you have, if any, with Prednisone?
Thanks a bunch!
Before I was dx'ed I found Motrin brought me the most relief. I would take 3 or 4 at a time when things got really bad. Turns out it's the same things as the antimflamatories the RD will prescribe. I still take a great deal of Advil on a regular basis verses the more expensive prescribtion strength drugs like voltran or celebrex.
Predisone is awesome in the short term...but try not to get into the habit of relying on it. No one will really say it's additive; but don't tell that to the ones that can't go a day without it. If you start it...insist on a short coarse.
Welcome to AI TT89. I'm just going to refer to you as "T" if that's ok with you.
Yes
T is fine ;-) Lots of folks call me that. Thanks for the warm welcome. I don't feel so alone or crazy anymore. I feel like I found a place where people really understand and "get it".
Thanks Lovie.
Welcome to AI "T"
I hope you enjoy the group...Very nice group of people here.
I used lots of Tylenol Arthritis Xtr strength and when that stopped working I went to Motrin...Finally I did have to go to a doctor to find out what was going on with me.
I hope you don't have to wait to long for some relief.
Once again welcome to AI.
Toni
TT89,Hey There..Yep. I tried Motrin today and it seem to help me more. Not sure why.
I see the new doc in a little over a week. I PRAY he can help me. I do all my labs all over on Saturday. Lab is open here on Saturday. Maybe it will give us more answers...
Hi T
I can not come up with a reason to take extra VT B1. If I thought it would be of help for RA...Then I might considered it's use.
I preferred Motrin over Tylenol products, seemed to work better for me.
I know how hard it is to hang in there but you will eventually have a reason for why you are feeling the way you are...And I do so hope that HELP is on it's way to you...
Take care of yourself "T".
Toni
This is so funny to hear that some cannot find one good reason to take extra vit B1 when I have been posting about how much B1 has helped me. I was diagnosed almost 2 months ago with RA. I take B1 - thiamin hydrochloride with the first bite of every meal or snack and it seriously took 80 - 90 percent of my pain away.
Thiamin hydrochloride is hard to find but I got mine at GNC or you can order it online. Just be aware that thiamin mononitrate is not the same as thiamin hydrochloride. Also, just because this helped me it may not do anything for you, but on the flip side, it might help.
I think the reason it helps me so much is because it helps you digest your food correctly. I don't take the megadoses even though that is all that is out there. I break up the pill into very small pieces and take about the size of a large grain of sand with the first bite of every meal.
Since taking thiamin hydrochloride, I am able to stay in college, take care of my kids, and work a part time job. Before I started the thiamin hydrochloride, I could hardly walk, open doors or even hold a spoon. I just saw another doctor this week who looked at my joints and ordered some tests. I still have some stiffness, and minor sore joints but nothing like when first diagnosed. I may take 1 200 mg. ibuprofen a day if I am stiff but that is it.
I asked the doctor if there was ANY reason to stop taking the B1 and he said no. I told him I was worried about the amount I was taking because I am never sure if it is too much or not. He said it sounds like I am not taking too much. He said since my joints looked SO good, he would recommend that I keep doing what I have been doing.
I also posted that two of my aquaintances at school told me they have family members that take thiamin hydrochloride to help control their arthritis pain.
Good luck to you T!
Sorry, I typed in a 2 when I meant to type in that I was diagnosed almost 3 months ago with Ra.okay I will try your Thiamine whatever. Anything.....!
My reason for the remark is that I already eat a balanced diet of all the foods that are high in Thiamine Hydrochloride and still have pain and stiffness. So will an increase of B1 help me. I don't know and as of yet it is not been proven too or proven not too.
We all take many drugs to help us with our RA. Adding extra drugs or Vit-mineral-nutrients that are not documented to help a particular disease, may not be the way for some people to deal with their RA or other illnesses and could create other problems, if without the understanding of "how, when and why"... workings of the drug or vit-mineral-nutrient
It seems to be working for you and your friends, then I would say continue to take the B1 ... I am trying out Fish Oil because I am not a fish lover, so I know I am deficient in the essential fatty oils that you receive from them. I seem to be having a decrease in morning stiffness and some pain (there is some documentation that it could possible help with RA as well as our hearts). Is it because of the Fish Oil? Once again I can not tell you "YES" because I also just started on Enbrel and it may be the Enbrel that is helping my situation.
Everyone is looking for the "miracle around the corner" when it comes to chronic diseases and I do the same thing. I just want people to be safe and become more knowledgeable about what they are ingesting, while looking for that miracle around the corner.
Toni
I want to say I am not a doctor and I am not giving out medical advice but I am documenting what has happened to me because if it helps someone else then that would be great.
I looked into the thiamin hydrochloride and the only precaution is if you take extremely high doses you can have some trouble. If you have a heart condition then this may not be for you. If you have cancer then this also may not for you. You should ALWAYS check with your doctor first before starting something new.
I totally agree with you Toni. I am not saying this is a cure because I still have minor pain and stiffness but I have to bold the minor. I am not on any medications because I have not seen the Rhuematologist yet but I seriously doubt at this point that I would ask for any. If you are on medication, I would run this by your doctor before trying. He can tell you if there would be any side effects to adding thiamin hcl - B1 along with the medication. He can also do a test to see if you are deficient. I started taking the thiamin hcl before I asked for a test.
If you do not have the proper stomach acid to digest your food properly, you may not even be absorbing the thiamin from your food. I do notice that some supplements just say thiamin in the ingredients or just B1. If it doesn't specifically say hydrochloride, then I always assume that it is thiamin mononitrate, which is less soluble than thiamin hydrochloride. I have to make sure the supplement I take is thiamin hydrochloride(hcl).
I have heard fish oil helps but have not tried that since the thiamin hcl works so well for me. I heard fish oil can thin your blood quite a bit. My arthritis is not genetic(no one in my family has it) so if your arthritis is genetic, it may not respond to the B1 hcl.
I break up the thiamin hcl pill because it is a megadose, and I want to do this in harmony, not put my body through more chaos. I break it into the size of sand, maybe a bit bigger. It sure doesn't take much to help digest the food. And the only time I take it is with the first bite of every meal or snack but I try not to snack too much. I eat smaller meals and include more fruits and vegetables than before. My meals are more than two hours apart so the thiamin helps process each meal. It's all about digestion so I chew my food more than normal. I make meal time as pleasant as possible and do not take calls or have stressful things happening before mealtime or immediately following mealtime. It is about the digestion process for me. Also don't drink coffee an hour before meals or an hour after.
Also I added a glass of cranberry juice sometime during the day. And I have not cut out dairy because if my body is attacking my bones to get at the calcium because I cannot process the calcium coming in, then I need to stop the process, especially if I can process the food correctly now. I continue to drink milk and eat yogurt, cheese, etc. Also I try to eat some banana every day because the thiamin needs potassium and magnesium to work properly for cell to cell communication.
Today I have stiffness in one finger but it's not swollen or hot. I was dancing in the kitchen this morning making pancakes and sausage. No ibuprofen needed today. :)
Thanks NEWRAGirl..
I just got back from the hospital. They drew 8 tubes of blood, and drew from both arms..UGH! Well I just hope we get some answers next week.
Where do you buy the supplements you are using?
Any info is greatly appreciated. Thanks for sharing your story
Hi T, I too had to give blood for a bunch of tests this past week. No fun. I bought the thiamin hydrochloride at GNC. I am warning you, it is in megadose, like 200 times the RDA. That is why I break it up into small pieces. I would not personally take more than a small amount with the first bite of every meal. I noticed changes right away.
Also everyone I talked to said that you can take a lot of this vitamin because it is water soluble and what you don't need will pass through. It took a long time to get my body in this mess(I am 38), and I am going to recover in a balanced way to prevent messing my body up even more. Who really knows what a megadose could damage? I don't think they have enough studies out about megadosing to justify taking a huge amount of any vitamin.
Also, I had posted that I still drink milk. I am not lactose intolerant so if I was allergic to dairy, I would not drink milk to try to get my RA better. That would not make sense. If I was allergic to something, I would continue to get that nutrient from other sources like normal. I am allergic to MSG(found that out when pregnant) so I avoid that as much as possible although that is hard to completely avoid now.
Keep us posted. I will keep posting updates also.
So T, you do understand that I only take a small portion of the broken up vitamin pill, I do not take a whole pill. It takes days to use up just one pill, because I only take a portion of the pill.