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newly diagnosed and overwhelmed
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granma13 posted:
have always been a very active person and not one to go to the dr. or
really big on taking any medications. I was diagnosed with ra about
a year ago and went from sane to insanity in a world I just don't
understand. From no meds to being on a cocktail of 4. methotrexate and prednisone being the latest to join in the party. My husband is very
supportive but its scary for him too. Most of the rest of my family dont
really understand what its like and I'm the type of person I don't really
talk about it because I don't want to sound like i'm complaining.
This last flare really scared me because it hit all my joints for the first
time. the thought that this is what the future holds is unimaginable.
I'm sure that there are other people in my community that have ra but
I haven't met any. Am very interested in any information and how
other people have come to terms with this disease.
I am 52 mother of 4 and grandma to 2. I want to be around a long time to enjoy them all and to be able to do all the things grandmas are
suppose to do.
Am also very interested in alternative treatments to relieve the pain
and to help keep this disease at bay.
Reply
 
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An_246765 responded:
Hi Granma13

I'm sorry your having to deal with this. I was very overwhelmed when I was diagnosed last year too. You didn't mention which medications you were already on but I thought methotrexate and prednisone were usually among the first medications tried for RA. I was immediately put on prednisone when the doctors found out it was RA. I'm on a drug called Plaquenil that thankfully works well for me but my doctor said if the Plaquenil didn't work methotrexate would be the next step. So hopefully these new meds will help you. If not, I know the newer biologics have revolutionized the treatment of RA so don't give up hope yet!

I had a hard time accepting that I'd be on medication for the rest of my life (I'm only 26) because I was worried about the side effects of the meds over time, but my doctor said something to me that was very helpful, he said "we don't know 100% what these medications will do 20 years from now, we don't think it's anything dangerous, but we do know with certainty what untreated RA will do to your body in 20 years." That really helped put things into perspective for me. There's no guarantee that I'll be here in 20 years (heaven forbid some kind of horrible accident happens) but I know I'm here today and I know I want to be as functional and pain free as possible today.

As far as alternative treatments, I haven't tried any but I know there are probably many out there. My rheumatogist is very supportive of them but he recommends that they be used in conjunction with traditional treatments.

I personally have found heat to be very helpful with morning stiffness. A hot bath in the morning or my doctor recommended the use of paraffin wax for my hands. I got a paraffin machine at a beauty supply store and when my hands are really bad I dip them in the hot wax, about 8 coats, and then put them in plastic bags and then in special mittens the beauty store sold and let the heat soak in for about 15 minutes. Doesn't eliminate the pain in the joints themselves but works like a charm on the stiffness! I also have a hydro-therapy foot massage that I put hot water in and can soak my feet in when they're acting up. If you don't want to spend a lot of money you can heat up some wet towels in the microwave and then wrap your hands and feet in those too.

When you're feeling better oddly enough exercise seems to help me too. I definitely recommend aquatic exercise, way less impact and really helps with the stiffness. As far as pain I just take it easy when I have a flare and know it will pass.

I hope these new meds do the trick for you and that you get to feeling better soon! It's an overwhelming diagnosis for sure but it can be managed so much better today. Be open and honest with your doctor and if somethings not working let him know!
 
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mike201 responded:
Hi Granma13

I know exactly what you are going through. I am 58 and have had severe RA for 19 months now. What An_246765 says makes a good deal of sense. I would add the following. The first year will be hard and confusing. Once your doctor gets you reasonably stable things will improve. I suggest that you TAKE CONTROL of your RA by changing your diet, taking your meds, researching your condition, take up meditation and your must do regular exercise. I would replace wax treatments with a goos pair of gloves.


I have been through all the conventional drugs and they all have negative impacts. I am now on Humira and Avara and am now much happier although flares do happen. Looking back over 19 months I would say that the medications are key and so is exercise. Diet change helps to minimise negative drug impacts and meditation helps with pain control. I have been on Oxycontin for pain all this time and am now trying to get off it.


Feel free to contact me if you need. Yours from Sydney Australia, Mike



 
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granma13 replied to An_246765's response:
hi,
thanks for answering. the comment you made about what ra will do to you in 20 years if not treated really hit home. I never
thought about it like that before.
the meds that the dr has me on are hydrozychloroquine,diclofenac sodium,methotrexate and predisone. going in on monday for a deep tissue massage. it is
suppose to help with the joints keeping them flexible. will let
you know how that goes. thanks for making me feel not so alone. if i can return the favor just let me kno;w
 
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granma13 replied to mike201's response:
mike,
thanks for the support. am very interested in the meditation
for the pain and also heard that it will help with the sleep
problems but don't even know where to start with that, any
help on that front would be greatly appreciated.
it is nice to know that I'm not alone in this and that there are
people living full lives with this every day. glad your trying to
get off the oxycontin I know thats not going to be easy for you
after being on it all this time. have had experience with that with my son. i will keep you in my thoughts


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