Hi All,
It's been 6 months since a post ;( It hasn't been a very good 6 months.
I am currently not coping very well with managing my RA. I was doing so well keeping it under control and at bay through diet and supplements but everything stopped working and I actually gave in and tried methotrexate along with Simponi. It was something I never thought I would do, but in Jan and Feb I was unable to dress myself, put my hair up, open doors, drive... and most importantly I couldn't tend to my little guy. I had to rely on my husband and that was difficult for me.
Simponi was amazing.... for about 3 mths. Then it just completely stopped working. I have continued to eat super clean (no grains, limited sugar, no dairy, chemical free, whole foods only) but alas.... inflammation city!
So, I am moving on up the RA med line and I am scheduled for my first Rituxan infusion next Friday. Scary a bit but I'm trying not to google the side effects. I just need to feel good for a little while. I've had it with not being able to function. I feel like I'm banging my head into a wall.
Are any of you on Rituxan? Does it work for you?
Nice to see you post again. Sad to see u going back to the RA drugs but I think u have no choice based on what has happened. Once your RA is under control in 6 motnhs when MTX kicks in, u can try having the MTX alone along with your food diet. I think I felt the best relieve to my PSA this way. I have been doing well on the food diet with drugs free but the PSA pain still there to my joints in the morning. I might consider going back to have the low dosage of MTX along with my food diet to see if my PSA pain can be suppressd well.
ReplyDeleteKeep in touch !
Louie.
Jen, can you or any of your readers recommend a glove to sleep in?
ReplyDeleteI found your blog yesterday and read through all of it. To me it looks like you have made every effort possible to stay off the meds, it worked for a while, but now you need the meds. I hope your Rituxan infusion went OK and that you are getting some relief.
ReplyDeleteI was a young mom of 3 small children when I first developed RA. There was no Metho for it then and no biologics. 4 years ago, I was on meds but in remission. I hated taking metho and the side effects, so I tossed all my meds and went off with my husband camping and hiking in the deserts and canyons of the American southwest. We had a glorious time and I had never felt better.
For 3 years I felt well, but then this past Winter things started going downhill. I found myself in a monstrous flare that would not let up. I didn't even have a family doctor because mine had moved away and of course I had not seen the rheumatologist in 4 years and needed a new referral. It seemed like a good time to try a Naturopathic Doctor.
I did an elimination diet (though not as strict as yours) had IgG testing and took Nutrasea and supplements. I really had hopes that all this would help, but for me it brought little relief. After 3 months I had to quit the fish oil due to nosebleeds.
I now have a family doctor and am waiting to see the rheumatologist in 2 months. I am tired, anemic, and taking Advil for the pain.
I know what you mean about just wanting to feel good for a while. This is a beastly disease. It can be cruel and unpredictable. You can rest assured that you did everything possible to stay off the drugs, but now you need them to feel better and to prevent permanent damage to your body. I wish you the best. Hang in there.
Great site. These personal experiences are some of the most important contributions the advancement of RA.
ReplyDeleteI'm working on a project to help people living with RA get better access to non-corporate sources of information. My hope is to help add a "research" layer on top of the great content out there and drive more people to great RA sites like yours.
I'd love to send you more info, but I don't see an email address on your site. I've signed up 13 of the 22 Healthline Best RA sites of 2012 so far and would love to have you as part of this project.
You can reach me at dave@lyfechannel.com and I'll send you some more details.
Dave
Hello! I came across your blog this evening. I am also a mom of a little boy (15 months) and struggling with RA. I do my best to stay on a clean diet but it is difficult to be 100% with it. I would love any advice from others who are going the natural route. I was doing good for awhile but can't seem to catch a break the last three months or so.
ReplyDelete@ Louie: Thanks for the continued support! I hope you're doing well!!
ReplyDeleteAs for recommendting gloves...a friend bought me some compression gloves that I found useful the odd time. I did have a bad experience when I put them on at night to see if it would relieve some pain and I couldn't take them off- they were too tight and I was alone. They were stuck on for hours!
@ Diane: Sorry to hear you are in pain and discomfort. Nobody really understands the disease unless you have it! I have been lucky to have an amazing rheumatologist that I can call in times of trouble. I also learned that you want to keep them on your side ;) Don't cancel appts and bring them gifts at xmas lol. Don't wait if you get into trouble, get in to a clinic for some pain relief. It's very aggressive but you could also try the elimination diet I did at the start of this blog. Let me know if you need help!!
@ Dave: Awesome! I've sent you an email!!
@ the Hudsons: Keep at it! There's no doubt that it's hard and has it's challenges but I know that you can greatly reduce your inflammation from eating clean. I'm thinking of adding some of my healthy go to meals and snacks... would you find that type of info useful?
Hi Jen,
ReplyDeleteHealthline is interested in contributing a guest post to jensrajourney.blogspot.com. We would be open to contributing any blog that would be of interest to your readers. Healthline bloggers have been featured on a variety of sites including:
Washington Times: http://communities.washingtontimes.com/neighborhood/tango-mind-and-emotion/2012/aug/10/how-healthy-choices-easy/
Natural News: http://www.naturalnews.com/036515_diabetes_strawberries_prevention.html
Patch.com: http://strongsville.patch.com/blog_posts/where-and-what-to-eat-in-cleveland-to-beat-the-winter-blues
Please let me know if you have any questions. Thank you in advance for your consideration.
Warm Regards,
Tracy
Hi Jen! I came across your blog today, my mom has had RA for 15 years now. I remember that at the beginning she wasn't able to walk, actually she wasn't able to do anything. My mom has been taking Herbalife ever since she found out she had RA and she doesn't like taking her medication and Herbalife has been working for her. She doesn't have any pain or inflammation. Her doctors are impress with her improvement!
ReplyDeleteJust wondering how you are feeling since this last post? I think I'm where you were two years ago, just started Enbrel and I'm frustrated with my natural diet efforts. I hope you are feeling better and found a regimen that works for you :)
ReplyDeleteGood for you posting again. Living with inflammatory disorders isn't easy. Eating clean...reducing meat intake, and reducing anxiety are the best for me.
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