Information & encouragement to fight RA
good stuff thanks for sharing
Don’t be shy about wearing a mask. Sometimes its the only safe thing to do. Just think, if you lived in Japan, you wouldnt even be that odd, its accepted over there.
And the greeting thing, that has to go. Most everyone knows now that I wave, and dont shake hands. Shaking hands hurts anyway, so that one was easy! Its the quickest way to pick up germs there is, so a good habit to break.
I have been knocking around this website for a couple of days and found this entry just now. So far this seems to be helping me stave off infection and helping to keep me “regular” in the midst of all these new drugs. It’s a probiotic supplement called Culturelle and it works better than DanActive and Activia combined. I found it at Walmart, when I was looking for Align which was recommended to me by a friend with diverticulitis. After reading packages, I selected Culturelle because it was the only one deemed safe for children so I figured it should be OK for me. My rheumatologist now recommends it too.
I have been practicing most of these tips for several years now, but didn’t know what to call it. On my last visit, my rheumy remarked how remarkable it is that I have so few infections compared to most of her patients (about 10% of people on Embrel wind up in the hospital every year, not just her patients, any of those patients anywhere). I have a few more tips that have worked well for me. I rarely shop when the stores are most crowded, and I especially stay away from the pharmacy section during those times. When I use a public restroom, I use a paper towel, when available, to open the door. I do my best to schedule visits to my family doctor as early in the day as possible. I get seen without spending as much time in a waiting room full of sick people. I get my flu shot as soon as it is available. And when a friend or family member outside my home gets sick and needs some soup or something, I will leave the container at the front door, or if a church friend, at the church for someone healthier than me to deliever and to visit. Right at first, all of that preventive first aid seems like a bother, but after a while it is just the way you do things. Thanks for giving a name to this.
Thanks for the extra tips, Charlene!
I am about to begin Rituxan treatment which is notorious for depleting the immune system by killing off the effected B cells. This is chemotherapy administered by two infusions.
During treatment and for about 12 weeks after I have to be extra cautious and use good common sense to ensure the likelihood of picking up an infection is mimimal. I ask my family and friends to politely stay away if they have colds/flu. Unfortunately this means staying at home a lot especially during winter and avoiding shopping malls, movie theatres and the doctor’s office…I have refills on all my prescriptions. I am not paranoid by nature but as a realist, my life depends on using prevntative first aid measures. Who needs the ugly consequences! Thanks Kelly and all Warriors.
Good luck with the Rituxan Louise. I hope it helps you a lot.
Hi, I was just diagnoised last week with RA and I am trying to learn
as much as I can. I was so glad to find this site. Just reading about
how important it is to drink alot of water I mentioned this to my
neighbor who is really into healthy eating and this is what she said.
Everyone should add 1/4 tsp/quart of good quality sea salt to their drinking water after age 21. You don’t hydrate properly without it. The water just goes to the extra-cellular water (outside the cells). For it to go into the cells, you need to add the sea salt and that is where real hydration takes place. I just started doing this today but
she has been doing it for 20 years. I’ll let you know how I do trying
You could add wearing gloves at night to keep the bandaides in place, also will help with medicine creams (like volaren for RA & OA) along some cream & nail cream too…wake up feeling so much better. Wearing gloves help keep you from scratching at night which happens with the meds & dry skin. Also I don’t scratch my head now as I have dermititis now from meds or RA – not sure which…
Have your own toothpaste. If you have a family, we tend to share these items. I keep both my own toothpaste and toothbrush and keep them far away from all others. This alone has cut down on illness more then any other tactic I have tried to date.It worked so well, I bought everyone their own toothpaste in my home. Also I keep alcohol wipes near my phones to use when someone is sick in my home. Before using a phone, I quickly wipe it down. I have both a college student and a hubby that is out in public all the time. Even when they have picked up something, I have been fortunate enough to avoid it with these two techniques.
Thanks for the great tips!
Sugar is the immune system’s worst enemy. Before it was discovered that sugar causes drastic drops in white blood cell counts, I was observing its effect on myself.
All my life I had suffered from one cold after another, 5 or 6 a year. With so many instances to observe, I noted that even the subtlest symptoms of onset were quite consistent. The next step was to prove my suspicion that sugar could set off these symptoms. Alternate abstinence and binging made it obvious to me that my colds were not “caught” but triggered. I went cold turkey. No sugar for 6 months — and no colds. I have had less than one every two years since.
A sugar-free life hasn’t prevented RA from creeping in on me, but it keeps a lot of preventable problems from making life more miserable.
I use Stevia extract instead of sugar or poisonous substitutes. A cup of cocoa can still brighten cold winter nights.
Be careful around cats with claws, they are naturally unhygienic. My cat’s name is Shredder, and no, it’s not because of what she does to the furniture…
I just wanted to share my experience with a life-threatening infection that I had while on Remicade. First of all it was when the drug first came out so nobody knew the risk was so great. Several things went wrong for me to get the infection:
1)I continued on a DMARD that I was supposed to have stopped before starting the Remicade(I had not understood the Dr.’s directions)
2)A friend with a bad case of the flu came to Thanksgiving dinner even though we told her not to come if she was sick!!
3)I started to get sick, but because I wasn’t running a fever and was so excited to start the Remicade I went ahead and got my infusion(STUPID!!) I was coughing and blowing my nose- the nurse at the infusion center shouldn’t have given me the infusion when she saw this , however, I should have known better too. This is the experience that taught me that I am the one that is ultimately responsible for my health care.
4)After the infusion when I started to get really sick-high temp etc., I should have IMMEDIATELY gone to the ER! Because I convinced myself I had the Flu, my husband(now ex was worried about the cost of the hospital) it took me 3 days before I went and I was in septic shock when I arrived.
I spent 6 WEEKS on a ventilator and almost died on several occasions.It was a nightmarish experience that was TOTALLY AVOIDABLE!! It took me ten years before I had the guts to try a biologic again. I was on Enbrel which worked quite well for 2 years until I developed antibodies. I started Cimzia a month ago and it seems to be helping.
Please let my experience be a lesson for you. YOU DO NOT NEED TO BE AFRAID OF BIOLOGICS, But..
1)make sure you take(and discontinue) all your meds as directed by your Dr.
2)Keep your distance from people who have infections, but if you do get sick POSTPONE your infusion or injection!THIS COULD SAVE YOUR LIFE!!!!! Your Dr. or infusion center will understand if you have to reschedule!
3)If you have had your dose of biologic and you do have ANY signs of an infection, RUN -don’t walk to your doctor. Don’t worry like I used to that they might think you are a hypochondriac for coming in for every little sniffle, scratchy throat, or cut. This is SO important. You need to catch any infection that does crop up right away.
4)Forget the money-let’s put things in perspective shall we? What good is saving yourself from an expensive bill if your dead? Hopefully, it isn’t a spouse that you are having to explain this to like I needed to.
Something that I think most people are not aware of is bathroom hygiene. Especially in public places. What I do is wash my hands before and after going to the toilet. I use a bidet at home and wash my private area with soap and water after I have a bowel movement. I keep a canister of Clorox wipes to use for the toilet on the toilet to remind me to use it after each time I go. Of course I use gloves. I pour Clorox into the basin every day. It sounds like a lot, but cutting down on bacterial growth is a good thing! Hope this helps some peeps
Thanks for all the tips, I volunteer at a state park and will use these tips daily.I haven’t even thought about the oral hygeine aspect. I am new to RA and just started methotrexate, and will probably be on enbral by Dec. The commercials are a little scary. I find myself now worrying about infections, I just need peace.
I was just diagnosed with RA but I have no insurance. My DR said he would try to find some help for me. This situation makes me very sad. PS this crap hurts !
How can a immune suppressed person navigate cold and flu season?
good question Terri – I’ll post more on that soon – I did finally decide to get flu shots last year & this yr & that was a big help for me anyway. http://rawarrior.com/can-rheumatoid-arthritis-patients-get-a-flu-shot-15-facts-on-vaccinations-autoimmune-disease/
I have an egg farm, both ducks and chickens. I am on methotrexate and humira and it’s working for me, so I am grateful. I frequently get cuts and scrapes while doing farm chores and I can tell you first hand that chickens and ducks make incredible messes. I do two things as anti-infection practices. I keep my birds healthy. Healthy animals have no diseases to transmit. I keep antibacterial handwash at my outdoor sink near the coops. As soon as I get a scratch or scrape I head over to the sink and clean up. Even if I have healthy critters, there’s still plenty of bacteria living in soil, so keeping up with tetanus vaccinations is also a must. One other first aid thing I do for myself is not about infection. Even with humira, I have aches and pains, but at least no flares. I keep ice packs in my freezer, for the times I sense I’ve done too much in one day. The most direct anti-inflammatory available is ice. It’s also the most affordable and has no side effects, if used properly.
One thing I read recently is that kitchen sinks have more germs than toilets. I don’t know how true that is, but it has caused me to use more clorox in the kitchen as well.
Along those lines, I would think that it might be a good idea to make sure the restaurants I visit have high marks – that they’re serving good food and not bad meat passed off with rich sauces. I’m betting that “Bad” meat has some “Bad bacteria” that my body may not respond to well when I’m on a biologic. Any thoughts on this?
I keep browsing the site. Thank you for the invaluable information. Wish I had read this a few weeks ago. I, too, ignored a case of ‘the sniffles’. Within 2 days went into left lower lobe pneumonia, bronchitis and sinusitis. Could barely breathe.After 5 days on Ceftin and albuterol, beginning to feel human again.I will never ignore cold symptoms again! One more scary thing compliments of RA.
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