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scwm
New Member


Date Joined Jul 2017
Total Posts : 3
   Posted 7/4/2017 8:40 AM (GMT -6)   
Hi,
I Guess a little history first, I have been having pain in my feet and hands now for (looking back on it ) about 5 years now, Since most of that time I have been working in a factory doing assembly work I figured it was a repetitive strain type of injury and was dealing with it as such. This winter my pain began intensifying until March when it became bad enough that I (finally) went to the doctor about it again (by this time I had pain just about everywhere) (I had been to her about 2 years ago for my foot pain, and wound up with orthotics for my work shoes that helped for a bit, around that time I also went on the Paleo diet for a few months (then we renovated the kitchen and that went out the window, until this month) which seemed to help a bit as well.). She did complete blood work and just because I had been reading about pain and causes of it I asked to check the RA factor as well, figuring why not (since I figured what I had was a repetitive strain injury, leading to carpel tunnel in my hands). Since I am here you can guess what the results were, I had slightly high Thyroid hormone, a CRP of 7.96, and the RA factor was 448 (as you know "normal" is <14). My doctor basically said I don't know why all of these are high and referred me to a rheumatologist, saying to expect about a three month wait. I got lucky as I was place on the cancelation list and got an appointment the next day for two days later. After checking me out he confirmed that it was RA. In a way it was a relief to now what was going on and that we could start treating it. He gave me a steroid shot which helped pretty quickly, and put me on Leflunomide and Methotrexate also checked CCP which was 19.7. Things seemed to be going fine until my first blood test after going on the drugs, at that point my liver function tests were abnormal, so he directed me to go off the Leflunomide and in a few weeks have another blood test, did this and the liver functions were still abnormal, so I went off the MTX as well for three weeks, on this test the liver functions were back to normal, (though now I am slightly anemic ) so I am back on MTX (at a slightly lower dose) to see if my liver acts up again (if it does then onto a biologic I go). So two weeks in pain wise I am basically okay, but energy wise I am bad (have little to no energy) I think pain wise I was about the same the three weeks I was off both meds as I am on the MTX (though of course it may not have had time to work again), but unlike the first time I was on the meds, now when I take the MTX I am really tired for a couple of days after, with no energy to speak of, I know at lest part of it is the anemia that either the RA of the drugs are causing (since it only started after I started taking the drugs I am leaning towards them, but I know it is quite possible the RA is doing it too). Will need to see how my blood work comes out at the end of the week to see if the anemia is getting better or worse (the rheumatologist didn't even mention it as a concern, my GP is a little more concerned with it though (maybe because it is something she is more used to dealing with). Anyway I am doing okay mentally, I am not glad that I have RA, but as I said at least I have something to go one, and try to beat into remission. I am working towards getting back to the paleo diet to see if that works, have contacted a cousin who had her food sensitivity test done, to see who did it with her and how it worked for her (not RA but other digestive issues as I recall), and maybe get that done as well myself. There is thankfully no damage to my hands (was just inflammation), my feet were not x-rayed but with the medication the pain is not bad at all. I have been getting more headaches lately too (especially with all the thunderstorms we have had going through this year) including one that had me in bed from after I got off work till the next morning). I got lucky in that I was able to take over a clerical job while the person doing it is on maternity leave, so I am pretty sure being off the line has helped as well (have a transfer in now and hopefully will manage to get into an office job full time close to the same time the person returns from her maternity leave).
Anyway I guess that's about it, not sure if I am going to be able to continue the MTX yet, or if I will be going to a biologic, (thankfully both I and my partner have good health insurance (though we are in Canada so a bit less of a problem except for mediation that those of you in the states), so so far no cost for drugs out of pocket. I just wanted to join the forum as after reading four pages I can see it can provide good support when I need it.
Scott

Reezi
New Member


Date Joined Jan 2017
Total Posts : 9
   Posted 7/11/2017 2:24 PM (GMT -6)   
Welcome scwm, this is the perfect place for you to be. there is a vast amount of information here that will help you with your condition. My brother is suffering from RA and this forum has helped me immensely. My brother has severe rheumatoid arthritis and here in the Caribbean it is not well diagnosed. Thankfully this site is here to help. Welcome again

scwm
New Member


Date Joined Jul 2017
Total Posts : 3
   Posted 7/20/2017 5:31 AM (GMT -6)   
Thanks for the welcome Reezi, sorry for not getting back faster, have been reading the older posts and seeing the great support provided by this group, have also been on vacation (still am). I am really wondering about the effectiveness of the mix for me at this point, I had blood work done last week as peer the Dr and one on my liver enzymes was high again, my pain doesn't really seem to be changing, it decreased significantly at first (due to steroid injecton) but am now think my job temporary job change may have more to due with the less in of symptoms that the mtx. Last night and today I have noticed a tingling and numbness in my hand, arms and feet so new symptom yeah smile will have to let the doctor know when I get home next week. For the most part my pain is at least bearable now, just have to make sure that I don't overdo it (like I did last Friday before we left on vacation), and wait to get the right drugs for me (and will be trying alternative treatments as well of I think they might help, without affecting me negatively). Hope you and your brother are doing well.
Scott

BadDay
Forum Moderator


Date Joined Jan 2011
Total Posts : 1035
   Posted 7/20/2017 11:55 PM (GMT -6)   
Hi scwm Welcome to the site I think you will find it very helpful and meet some lovely people with simular stories there is always someone on here if you need some help with things or just want a chat
it can seem odd to people when you are relived when told you have RA it is not that your Happy to have it just Happy to have some answers
you may find with the Leflunomide that in a few years you could try it again and be fine with it , as that is what happened with me I took it about 15yrs ago & had bad liver enzyme's so stopped it then my rheumy wanted me to re-try it about 6yrs ago and have been on it no problems
anyway hope things go well for you & see you around the site
FORUM MODERATOR Rheumatoid Arthritis for 30Yrs. Asthma,Fibromyalgia,Osteoperosis,Cervical Spondalosos,Degenerative Disc Disese,Disc Bulges, Diabetes,Heart SVT & AF, Sleep apnoea,Nocturnal Respiratory Failure,Panic Attacks,Anxiety
on; Methotrexate , Arava , Endone, Targin 20mg (oxycontin) , Prednisone, Metforman(Diabex) , Tambocor. Oxygen & Cpap, Prolia Injection ,Lyrica

TGR000
New Member


Date Joined Jul 2017
Total Posts : 2
   Posted 7/22/2017 6:59 PM (GMT -6)   
https://www.sciencedaily.com/releases/2016/07/160711151315.htm
Gut bacteria increase your TNF alpha which then causes all sort of horrible things to happen as it is a transcription factor. Scientists have found that people with RA have an increase in lactobacillus and reduction in Bifido and Bacteroides.

My personal experience: Take Vitamin K2 and Bifido probiotics (without Lactobacillus) and take bile salts to reduce the Lactobacillus especially if you have fatty stools that are difficult to flush, have low bilirubin in your bloods, have been on a course of antibiotics before you got RA and/or were anaemic. Green tea to reduce inflammation.

If you feel better or go into remission post it here so that other people can benefit.

TGR000
New Member


Date Joined Jul 2017
Total Posts : 2
   Posted 7/22/2017 7:21 PM (GMT -6)   
Have been praying to God daily, then one morning at around 4:30 am I found research that fits everything, including the fact that RA get better in pregnancy went Bacteroides increases. I use Jarrow Formulas Bile Salts and Vitamin K2. I am just so grateful to God. For the first time in seven years I feel hope for the future. So I had to make sure I thanked God publicly and gave Him the glory. I hope you get better soon, and I hope you beat the disease. Thank you God.

Don_D
Veteran Member


Date Joined May 2013
Total Posts : 548
   Posted 8/8/2017 9:49 PM (GMT -6)   
Scott, welcome aboard and I hope that things settle down with your liver. Many of us have been through the revolving door of meds trying to find one effective but with minimal side effects. It just seems to go with the territory.

At any rate, you found a great site with a lot of people with decades of RA experience who are always willing to lend an ear. smile

Take care, -Don
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