IN REMISSION FOR OVER 1 YEAR WAS ON HUMIRA

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Bstrong
Regular Member


Date Joined Jul 2010
Total Posts : 147
   Posted 1/17/2017 1:11 PM (GMT -6)   
I found this forum couple years ago. I got sick in 2009 with severe RA and sweet syndrome connected to RA. I probably wrote couple posts as I was searching for support and I was totally new to the information about my condition and the medications I was taking. I was on Humira and Plaquenil and occasionally steroids from 2010, then staying on Humira and Plaquenil till 2015. Humira worked perfectly for me, I forgot that I was sick only every other week injections were reminding me about my condition but I was so happy that I got rid off the pain and inflammation! that was HUGE for me. I was in remission probably after 1-2 years of taking Humira but still on that medication what for me didn't mean I was really in remission. I was always very into healthy eating - I am 5''2' weight around 110 lb now. But RA got me somehow... Before RA I have history of around 10 years of chronic constipation so I always thought my RA must be somehow connected to the diet. Despite the "remission " and that I really felt good on Humira my goal was to get rid of the medication completely. So I tried the strict paleo diet for 7 months - because it's a anti-inflammatory diet and I believed it can help me in the long run. I was trying to give up on Humira but the pain was coming back after around 3 weeks of not taking it. In December 2015 I had a stroke. I am only 40 years old, it was rare type of the ischemic stroke - vertebral artery dissection - there was no blood clot found, only narrowing of the artery and they later found that because of RA I developed anti- phospholipid syndrome - thickening of the blood disorder - that together with narrow artery restricted blood flow to the brain and I had a stroke.

I never had test for anti phospholipid done before the stroke, as I my doctor claims there was no evidence of the problem with the blood so we didn't need to check that..

In the hospital they took me off all the medication I was taking and from that moment till today I don't have any signs of RA - nothing, it magically disappeared. Doctors don't have the explanation, they claim stroke had nothing to with that, blood thinner I am on or the diet change. There is no indication of any inflammation in my body and I am truly in remission now. I met 2 professors - of neurology and rheumatology during last year. No explanation.

I still believe the diet had something to do with it, daily exercises, much less stress, increased vitamin D intake - I was always deficient and once in a while I was getting vit D prescribed by the rheumatologist so I just increased daily dose to 7,000 IU a day after the stroke

I just wanted to share my story, I know it may sound trivially, it was hard for me to believe that vitamins / diet can have that huge impact on our health. I know one more person who was recommended to start Humira by the doctor she was so scared she started to make and drink juices daily - she improved, never went on Humira. Maybe if I listen to her earlier I would got rid of the RA sooner..

Despite that I am in remission now I still think that checking with naturopath what maybe my food sensitivity is a good idea, I am planning to do that next week. That is what my friend did too..

I believe that inflammatory disease is because of our sensitivity to some kind of foods and here everybody is different, the worst are dairy products and grains but there is so much more and I would like to know finally what to avoid. I was reading a lot about it lately.

I just wanted to share my story, maybe somebody will find it helpful in some kind of way. Any questions I will be happy to answer. Just please don't understand it wrong - I believe that if the medication is helping we should stay on it but should never give up in finding the real cause of our disease!

Take care!

Don_D
Veteran Member


Date Joined May 2013
Total Posts : 548
   Posted 1/20/2017 9:57 AM (GMT -6)   
Thank you for posting this, it is inspiring and we should never give up hope.

I too have had remissions over the course of my time with RA. Twice, one time I was off of all medications completely for over a year. I too had been to a food allergist/dietitian and had severely modified my diet and still do somewhat. Though not nearly as stringent as it was.

There are many people especially on Facebook who follow this path and see amazing results.

Unfortunately for me my remission did not last and the symptoms of RA came back 10 fold. I had stopped seeing my Rheumatologist by that time I was so confident in my recovery. I was very sick and it took me quite a while to get back in to see her. I always hope that people in remission keep seeing their Doctor even if it is only a time or two per year for confirmation tests. This was a very hard time for me as my pain levels were higher than I had ever experienced. This way in the event that God forbid you have a flare up of the disease once again you will have ready access to your Doctor.

It is much harder to see them if they treat you as a new patient once again.

Blessings -Don

Bstrong
Regular Member


Date Joined Jul 2010
Total Posts : 147
   Posted 2/8/2017 10:36 AM (GMT -6)   
Hi Don,

Thank you so much for posting! I was like: l wooow... what a support forum ... 300 views and not even a word of support or encouragement.. " you saved it!!!! ;)

I am so glad to see that you can support the diet results. I realize it's not easy, if you don't have time to cook yourself it's almost impossible. It takes a lot to follow paleo diet - you don't eat any grains or dairy.. American food is built on grain! Taking medications is a lot easier I don't judge anybody I was there myself, but let's admit it!

I see the Rheumatologist regularly to check my blood I know it's important, he told me too that he can't guarantee it will never come back. So better be safe than sorry.. it must have been very hard for you!

Fingers crossed! Thanks for the reply once again!

Hugs!

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1877
   Posted 2/11/2017 6:45 PM (GMT -6)   
Bstrong, I am very happy for you! That is fantastic news. For some people going dairy and grain free can put them in remission and others, not so much. I've always kept a healthy diet but I got some really great results being gluten free,wheat free, nightshade free and low dairy. I also find that I feel tons better on some fish oil, Vitamin D and a multi-vitamin. I am older and was sick a lot longer, undiagnosed and so it hasn't quite put me in remission though. I still have to take plaquenil or the joint pain comes back. I think low Vitamin D for years really messes up your system. I am seronegative, BTW. I also have Sjogrens, diagnosed by lip biopsy. Overall, I am pretty lucky with both these diseases.

I also think that a lot of people with chronic diseases are a little cynical about some so called cures. They have tried it and it didn't work for them. It's really a let down. I was cynical about the gluten free thing until I had some blood tests and from a leaky gut, I had reactions to 21 foods! Then, I believed that taking some foods out of my diet would help reduce the burden on my immune system. Not everyone believes in this. Again, it helped me a lot, but not a cure. I still am happy for what positive effect I have found. I hope it continues for you! You might be one of the lucky ones!
Sjogrens syndrome 2/15 via lip biopsy:depression, fibromyalgia
colitis-resection 11/10, hashimoto's thyroiditis, morphea, GERD
Meds: plaquenil, synthroid, metformin, nexium, restasis, estrogen patch, prometrium, VSL #3, evening primrose oil, alpha lipoic acid.

Bstrong
Regular Member


Date Joined Jul 2010
Total Posts : 147
   Posted 2/11/2017 8:54 PM (GMT -6)   
Thank you jeanneac! Thank you so much for sharing! When I was really sick and was on this forum I was VERY sceptical about posts like mine - really! I couldn't believe that diet can change so much as I was so down at the time, I was really going through tough time... I was only 33 when I was diagnosed, I went through crazy stuff, a lot of swelling and pain, additionaly sweet syndrome connected to RA - bloody blisters in my nose, in other few places on my body.. scary stuff and all connected to inflammatory desease! Horrible that anyone need to go through this... Now I am 40 I am after stroke on disability.. I would like to help people who are going through tough times, I ve been there, I am still in the tough spot.

But if any of my past and experience could help anybody I would be happy!

I agree and believe that that's not only grain and for everybody the food which triggers Inflamation may be different. I sent my blood for food sensitivity testing unfortunately it has been unsuccessful as I learned on the way that Plaquenil can mess up the results so I asked for the refund. The Dr who did the blood drawn didn't inform me about that. My Rheumo suggested to still stay on the Plaquenil even though I am in remission. I was off Plaquenil fo 3-4 months and I was fine but am doing what was suggested.. For the test I should stop taking it, I don't know for how long yet..not sure what to do but I really would like to take that test.

I so appreciate your response! I am so glad there are real people with real and good response to the diet! That gives so much hope! I loved the book Good Gut - so much good information about good bacteria in our gut , what should we eat, what should we avoid and how the world changed that there is so many people suffering from inflammatory deseases.

Take care!

Hugs!
RA - diagnosed July 2010 until December 2015

CURRENTLY IN TOTAL REMISSION

Plaquenil, Vit D 700 IU, Vit B complex, Vit C

Warfarin, Baclofen

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15005
   Posted 2/13/2017 8:42 AM (GMT -6)   
Bstrong, I read your comment about so many views on one of your posts. Only a member can post in the forums here at HW. However, anyone can read the posts & HW does have a huge guest reader only base, lol. I can pop on late at night & see 1-2 members but will see as 20 or more guests online reading, so please do not get discouraged when you see this.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Bstrong
Regular Member


Date Joined Jul 2010
Total Posts : 147
   Posted 2/13/2017 6:24 PM (GMT -6)   
Thank you straydog! That explains a lot!
RA - diagnosed July 2010 until December 2015

CURRENTLY IN TOTAL REMISSION

Plaquenil, Vit D 700 IU, Vit B complex, Vit C

Warfarin, Baclofen
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