Rheumatoid Arthritis Support Group

Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...

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achymom 12/14/2013

Hi y'all. Half a vent, half an ask for advice. I keep getting sick, and I am so tired of it. 2 strep throats since late Aug (4 in total this year) and just started antibiotics for a sinus infection, which is accompanied by a nagging cough.

My rheumy decreased my Enbrel to every 2 weeks, and my MTX is half the dose it used to be. Saving grace is the RA is controlled, but the non-stop colds etc are driving me nuts, and wearing me down. When I'm sick I skip my shots, so haven't had much in my system this fall.

How do you stay healthy? I wash my hands all the time, purell everything, use Lysol wipes like paper towel... Had a flu shot. I'm taking vitamin c. Any other suggestions??

Thanks, achy mom

deleted_user 12/15/2013

Your increased susceptibility to getting sick is 99% likely the fault of Enbrel. Have you talked to your doctor about possiibly switching you to a different med? I'm curious if a different injection or infusion would work for you with less of the illnesses.

sammyo1 12/15/2013

I went to my Pain management doctor last week.
His opinion is the Enbrel has stopped working. He also said I was off to much because of infections that I'm positive were caused from the Enbrel. Same infections over & over.
So have to put big girl pants on & try another medication.
If you have to keep going off the Enbrel due to infections it's going to be hard to maintain control of the RA.

I wish I would have made a change before this point. It's not worth risking the RA getting out of control.
I wish you the best of luck, Sammy

achymom 12/19/2013

Thought I would give you all an update - I am in the midst of a flare, which is terrifying as I've been in remission for 2+ years. I got in with my rheumy today who put me back on MTX and doubled my plaquenil, and gave a half shot of depomedrol. She'd rather have me on the MTX right now, even though I'm still taking antibiotics. Enbrel is off the list until I see her again next month. Am hoping and praying this is enough to calm things down.

It's also a sad reality check that my remission is drug induced. I've been doing so well, and we have consistently been tapering the drugs , so a little bit of me thought I could beat this on my own !! Ahh, I can still hope. I joked with her today that I've revised my Christmas wish list!!

Thanks to all for your support.

lretz 12/19/2013

High does of vitamin c have done wonders for me. How much varies by person. The short story on how to figure it out is start with about 3000mg and keep increasing until it gives you diarrhea and then back off 1 for your daily dose. You can't over dose in it because it is a water soluble vitamin. Before I has RA, my tolerance level was 3-4000mg a day. After getting RA and especially after trying mtx which threw my RA into overdrive, I now take 40,000mg. You read that right. 40k mg daily. 2 weeks ago, my daughter had the flu, but I didn't get sick. Below is a link with detailed info on how vitamin c works and the bowel tolerance method of determining how much you need.

http://www.cosmicpenguin.com/codex/2-How_Vitamin_C_Works-Cathcart-with_summary.html

It's miraculous stuff.

depotblue 12/20/2013

i've had infections on orencia just less than on enbrel and humira and WAY LESS than on mtx (pneumonias on mtx and hosptitalizations and oxygen from the pneumonias)

all in all the lung infections continue just at the slowest pace on orencia.

Ros

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