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Rheumatoid arthritis.

Posted by jshaw1663 @jshaw1663, Jul 13 9:15pm

I having been seeing a Dr. they first done exray and said I do have it. Went to arthritis Dr and my numbers are not showing. I take methotrexate injections once weekly I also take plaquenal and cymbalta and it seems to be getting worse. One hand and joints hurt more on left side. I am so tired I can’t get going. I wake-up as tired as I went to bed. When I do stuff flower bed and do house work I’m exhausted. But my arm sometimes from elbow down just aches and lots of more stuff. I am anemic and this time she said my platelets are low and few more things were low. Somebody please talk to me. Now she is sending me to Ochsner‘s in Louisiana

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pb50 | @pb50 | Oct 26 3:46pm
In reply to @marieirene "I am looking for a good cookbook or website maybe even a dietician for my RA...." + (show)
Profile picture for marieirene @marieirene

I am looking for a good cookbook or website maybe even a dietician for my RA. My rheumy is trying to reduce my prednisone after 4-5 years (I'm at 4 mg now) for my PMR. He also has me on Aria Simponi infusions for my RA. I'm in more pain now. Is it the reduction of prednione or Aria Simponi that is causing my pain. I'm 75 year old female & a caregiver for my husband with LBD.
Your thoughts?

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@marieirene
if I were a betting gal, I’d bet the increased pain is a function of backing off Prednisone. I love that stuff so much - so I try never to take it. But when I must, I try to do only 5-10 days.

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tisme | @tisme | Oct 26 4:15pm
In reply to @pb50 "Yea - MTX is big no-no for liver if you are already showing elevated enzyme levels...." + (show)
Profile picture for pb50 @pb50

Yea - MTX is big no-no for liver if you are already showing elevated enzyme levels. But depending on the anti-TNF you are on, you may have risk of forming antibodies to it when you stop MTX. I did so with Humira when they stopped mtx for me. So I had to change anti-tnf drug.

First..inform your primary you intend to fire that Rheumy and get a new one - it would be great if he would participate.. i moved a lot in my career so had to frequently hire new ones. And I fired two.

The second one I fired tried to pass mine off as Osteo because I was sero-negative since diagnosis in NY. But as luck would have it, this time i came back sero positive. So I found another, he put me on remicaid and life has been great since. I occasionally flare and take low dose prednisone for as brief a time as possible. I have supplemented with Hydroxychloroquine but I don’t like it so don’t take that route.

You may have to try two or three to find your magic potion.

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@pb50 If I could afford to pay private doctors I would but I am stuck with the government funded one.

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sunshine67 | @sunshine67 | Oct 27 12:21pm
In reply to @missy245 "@marieirene I have skin tested allergic to wheat , but never really followed a no wheat..." + (show)
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@marieirene
I have skin tested allergic to wheat , but never really followed a no wheat diet .But after failing other RA meds for one reason or another, I was left with taking sulfasalzine and a small dose of prednisone which really isn't keeping me pain free.
I suspect it is the lower doses of prednisone that is causing your symptoms to increase. Last year I weaned off of 10 mg daily over a period of 3-4 months. Perhaps that was too fast, but at any rate, I could not remain prednisone free. I'm managing, barely, on 5 mg now.
Simponi Aria was one of the meds I failed. My RA symptoms actually got better after my first infusion, and I was so hopeful I could continue it. But about a week after that infusion I began to have cardiac issues , so could not.

After all that, I decided to take my wheat allergy seriously and stop eating wheat. It is really hard to do, but it makes a big difference for me and on rare occasions when I cheat, the aching and severe fatigue starts all over again. There is literature that suggest that a lot of people with RA do better when they give up wheat.

Another thing is perhaps taking fish oil might help. I started taking it 6 months after I was diagnosed 25 years ago. There have been good studies that show that taking it for RA eliminates the need for pain meds in some RA patients. There is good information online about how to take it and the dosages used in studies that were done.
I have never been overweight, but I know that for people who are, it is harder to manage their disease.
My daughter has sero-negative RA and she is quite overweight and is having a harder time than I've ever had.

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@missy245
Hi!
Everyone would fare better off without wheat as it is an inflammatory, also ATI’s (amylase-trypsin inhibitors) and WGA’s (wheat germ agglutinin), not to leave out “highly” refined grains. The inflammatory process is not just limited to gut but can also affect lymph nodes, kidney, spleen, brain, etc.
Today, there are multiple varieties of grain free, gluten free, paleo breads, along with a gluten free sourdough and buckwheat breads according to my sister, as I do not eat bread. So experiment different breads and find a happy replacement to your wheat. The better you treat your body, the better you and your body will feel as far as dietary intake goes.
My sister(no restrictive diet), stopped eating wheat breads due to bloating and switched to above mentioned non wheat breads, and healed her gut issues, until…she had a slice of wheat toast with eggs while on vacation and she was miserable and in pain for hours. (your body knows)
As far as Prednisone, be careful tapering down, ask your dr for 1 & 2 mg tabs, to decrease slower when needed when 5 mg too much try 4 mg, etc. Good Luck and be well.

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mickmicster | @mickmicster | Oct 28 4:03pm

Hi, I am new to this. I am living with my wife who has 3 autoimmune deficiencies. She has psoriatic arthritis, psoriasis, and Haji Moto thyroidism. Now her organs are wanting to shut down from. All the biological injections from the past 6 years. Now the doctor is saying she could have bone loss. She is constantly sick. I want to be a better husband and to help her with all this. Its caused marital problems. I just don't know what to do. Please help

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sunshine67 | @sunshine67 | Oct 28 5:42pm
In reply to @mickmicster "Hi, I am new to this. I am living with my wife who has 3 autoimmune..." + (show)
Profile picture for mickmicster @mickmicster

Hi, I am new to this. I am living with my wife who has 3 autoimmune deficiencies. She has psoriatic arthritis, psoriasis, and Haji Moto thyroidism. Now her organs are wanting to shut down from. All the biological injections from the past 6 years. Now the doctor is saying she could have bone loss. She is constantly sick. I want to be a better husband and to help her with all this. Its caused marital problems. I just don't know what to do. Please help

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@mickmicster
Hi! Sorry everything is so challenging right now.
First, Autoimmune diseases are difficult because they can mask what the symptoms mean and everyone is different.
Your wife needs to find an endocrinologist for her Hashimoto’s disease, if it is truly Hashimoto’s, there are a few drugs that will work well, for example, Levothyroxine, Tirosint, etc. Once your wife is on the correct dosage it will make a difference, the same for the bone loss which again there are great drugs to reverse this, speaking from my experience as my bone loss has been reversed, Thank God.
The priority is getting the correct physicians, primarily Endocrinologist and Primary Care or Internist on board to start. A good Dr will run testing and with results in hand, start appropriate treatment immediately.
Also, if possible, attend appointments with your wife so you can ask questions to fully understand the results and treatment therapy. Will be praying for you both.

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delmar007 | @delmar007 | 8 hours ago

Hello, have you considered Humira? I got struck w/RA back in Dec. 2000. Back then Methotrexate, plaquenal. Made me sleepy. Took multiple bloodwork and a few years after slamming 10-15 Alleve before the diagnosis. None in my family knew what RA is. My Mother heard about Humira in 2005. So I asked the RA if he could ween me off the current meds. Was on Humira till 2016. Kept the RA at bay. Then I switched to Xeljanz which I’m currently on. Both have worked great. Hope all works out well for you sweetheart heart ♥️

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