In 2009 RA hit me very hard at the age of 59. (I think the trigger was stress and a flue virus). I was severely incapacitated: could not fully bend or straighten my fingers; every joint in my body swollen and painful; suddenly needing twelve hours of sleep instead of six; could not even lift the sheets to make my bed; couldn't use a cane to help because I couldn't hold it, etc. Had mild Sjogrens as well (dry nose bleeds and dry eyes). It took about ten months to find a medication combo that got me fully functional again. At the time I was a 100K mile a year flyer so I always had a folding cane with me and often used wheel chair assistance and early boarding in airports. I ended up losing my business, my house and all my financial assets so I just retired and moved in with a friend in 2012. The stress reduction was fabulous! (I was very fortunate to be able to take early social security as a widow).
At the fullest medication I was on weekly Humira shots, 30 mgs daily of prednisone and Plaquenil. I am now down to Humira every ten days (with financial help from my provider at zero cost to me). The Plaquenil triggered Pancreatitus so I stopped taking that even though it helped with the Sjogrens. I switched to glasses instead of contacts and use a nasal saline solution if needed and don't miss the Plaquenil at all. Under the watchful eye of my terrific rheumatologist (Kaiser Northern California) we are tapering me completely off Prednisone and I will be off completely by this summer. Doing great so far - do NOT just stop taking it people, it is dangerous. Work with your doctor.
My sleep is now a pretty normal 9 hours average between night and nap time. I haven't used a cane at all in well over two years but still take a folding cane when I travel just in case. (I also tend to be clumsy and fall or sprain an ankle easily and might need the cane on an exceptionally long airport walk). I can carry out all my usual routines and travel if I feel like it. In the right shoes I walk as fast as ever although going a little slower is easier on the joints. I only wear shows with extra cushy soles. The rare day with a little joint pain I handle with a couple of Tylenol or Ibuprofen or a little extra nap time.
I am sharing this because RA is a frightening diagnosis and like many of you I was afraid of ending up in a wheelchair. That is no longer a concern and I love my "new" quieter and healthier lifestyle. I have learned to take very good care of myself and count my blessings every single day.
Just be patient, try different approaches and work closely with your doctor. If you think your doctor is not working for you, find another one. There are many different things to try and between the ACA and financial help programs even those of us with low incomes can enjoy good care and enjoy life.View Thread
Be careful of Manuka honey. I had a severe allergic reaction to the face cream, probably due to the pollen count in the honey. My throat closed up and I could hardly breathe 'til I washed it off.View Thread
I travel the world with my RA and have a few tips for those who might struggle a bit.
MOST IMPORTANT ESSENTIALS TO HAVE WITH YOU ALWAYS Your meds Folding cane (just in case) Comfortable shoes Passport and no more than two credit/debit cards e-reader (calming in long lines, easy to hold) ear plugs (for noisy planes and hotel rooms) small eye mask for sleeping)
BOOKING FLIGHTS Allow plenty of time between flights. I cannot stress this enough. You do not ever want to be running for a plane in some monster airport like Chicago, Amsterdam or Heathrow. Use the wait time to shop, to have a decent meal or just enjoy a good book. I always book my flights directly online with the airline I will be using. It is much easier to make changes to tickets that way in case you have an emergency. Online bookings easily let you select your seats and note dietary restrictions as well. Remember that bulkhead seating has more leg room, but also has hard partitions between seats that restrict your ability to wiggle around. Aisle seats are much easier to get in and out and also let you get up and stretch without disturbing anyone.
PACK ONLY COMFORTABLE CLOTHES AND SHOES I wear business casual pants and long tunic tops in natural fibers that breathe. Think layers. you can layer t-shirts for warmth or layer on a sweater. Add warmth with layers, not with bulky coats. You can always dress up good quality Ts with scarves or jewelry for special events. (my basics are all black and I pick one accent color per trip) Don't waste space on anything you would not normally wear! Pants also let you get away with comfortable shoes (my favorites are Easy Spirit anti-gravity line). Find styles that adjust for when your feet swell. NO ONE wears nylons or pantyhose anymore, even with dresses.
MEDS Make sure you take a supply that will last your entire trip (you may need your doctor to approve if more than a month). If they need refrigeration pack them with ice packs in an insulated container and check it through in or with your luggage. Carry written prescriptions for emergencies.
LUGGAGE Take a small carry on with wheels for the plane...do not try to carry luggage on your shoulder or in your hands. Make sure it will fit under the seat in front of you so you don't have to lift. I have food sensitivities (gluten) and always carry enough food to get me to my destination if I can't find things I can eat.
Check your large bags. Airlines are much better about handling baggage then they used to. After years of traveling I have never lost a bag, although twice they didn't make the plane change and I had them sent them on to my hotel (there is no charge for this.)
NAVIGATING THE AIRPORT Do not hesitate to ask for chair and attendant if you have even the slightest concern about walking to the gate. Remember to tip the attendant, they work for tips which they are not allowed to tell you. They will wheel you right up to the gate and even take you onto the plane if needed.
I always carry a folding cane in my carry on luggage. Most of the time I don't need it, but sometimes towards the end of a trip I am very glad to have it. Also using my cane let's me be first in line for boarding, which reduces the time on my feet. It also gets you offers of help, which is always nice.
Know your home airport well enough to know where you can get a good meal before boarding. Call airport services for help in planning.
PUBLIC TRANSPORTATION I LOVE using metro systems and trains! That said, be advised there are stairs everywhere in Europe in the stations. Taxis in Europe (especially London) are horrifically expense, but readily available. Pack very lightly if you are going to be using trains and Metro as there are not always elevators available or convenient. Trot out that cane and look helpless and some strong young man or woman will probably give you a hand with your luggage. So, again, allow LOTS of time so you aren't running for a train up or down some long flight of stairs.
Candee. If your doctor said your dry eyes have nothing to do with RA you need to find another doctor. Look up Sjogren's syndrome on this site. It goes hand in hand with RA. My first clue when I am having an RA setback is dry nose and eyes. Slight bleeding in my nose is my "canary in the coal mine" to get extra rest or up my prednisone for a few days.View Thread
Thank you for mentioning Celiac disease. I do not seem to have it but have found I am very sensitive to gluten products, including soy. When I am strict about staying gluten free I do better in every way. I am especially careful when I travel as that is stressing my joints as well. Easy Spirit Anti-gravity shoes are all I wear anymore and with my Humira shots and a little daily Prednisone I can travel the world! I am SO grateful I found a wonderful doctor very early in my RA journey.View Thread