Community Chat

[emmysmom]

Ford is awesome!

[croemer]

On 7/4/2014 raven-blackbird said:

wondered where you had wandered off to.............now I know..........keep fighting the good fight Kellin.............................................raven

Me too, good to see you Kellin.

[LilacTree]

Hi Kellin!

I am so sorry to hear that you have been diagnosed with the very life changing disease, rheumatoid arthritis. It was the beginning of my physical debilitation at age 66, now ten years ago. I don't know how old you are, but 66 is old for an initial diagnosis of RA. Therefore I am always grateful that I came down with it late in life and had many years of good health prior.

I will help you in any way I can, but I will caution you that I have not always made the right decisions. Everyone's RA is different. I know a couple who are my age and who both coincidentally have RA. The husband is nearly 100% disabled, but the wife has remained pretty much a moderate case for as long as I have known them. They are on different medications, although neither is on the biologics, which I have never taken and which could have been a bad decision on my part. Educate yourself on these meds thoroughly, they behave differently on every individual and although they are basically the same type of med, they have different effects between brands.

If you can, please stay away from prednisone or any other steroids. I won't go into it now, but had I to do it over again, I would never have taken this med for even a week, let alone the ten years I have been taking it. I am still holding this tiger by the tail and doubt I will ever be able to let go of it. It is a miracle at first, and a curse long term.

Please take up sydsgma on her offer to help you as well. She also has RA and does very well with the biologics . . . she is in much better health than I am and I believe we are about the same age. She is also very, very well informed about this disease.

The one thing I can recommend to you right now is to educate yourself as much as possible about this disease and the many side effects and other autoimmune diseases it can lead to. It is not curable, but it is, like diabetes, controllable. Have dexa scans as often as your insurance allows to keep a check on your bones (osteopenia, osteoporosis, etc.). My worst side effect has been severe osteoporosis in my spine and hips caused at least 50% by the prednisone I have taken.

Also see several rheumatologists and get their diagnoses and opinions. Choose the one you feel the most comfortable with. Make sure he/she gives you a thorough physical examination and lab work, including the RA Factor (RF), anti-CCP, CRP (C-Reactive Protein), and sedimentation rate (which looks for infection and inflammation). Those numbers are very important. Believe it or not, the least indicative of RA is the RF lab test which can show erroneous positives/negatives, but it is an important indicator nonetheless.

Important: You don't want a rheumatologist who is going to just prescribe a med and not even touch you (I have had several of them). Rheumatologists have it tough because they realize they are working with an incurable disease, so they lose interest easily.

Sometimes RA can go into remission. I believe sydsgma has at times. I have never had a remission.

In the meantime, thank you for your kind words. Remember that some folks, such as sydsgma, can still live very productive lives with RA. You will have to make these decisions with a well informed mind. I hope you have a husband and/or family that can help you as well. But please feel free to pick my brain as much as you want. I will always be honest with you.

My very best wishes. Ford

[LilacTree]

To everyone who had such nice words to say, thank you so much. To say I am overwhelmed is an understatement.

[sydsgma1]

Great post, ford..especially about the tests. By the way, I am in my early 60s..I was initially diagnosed at 22, but did not fully develop it until my late 30s.the orencia has done little this month..but that hAppens. I am eyeing my prednisone.

[game-on]

To all of you with RA.... my stepfather had it.... I saw some of the things he went thru.... it was not easy to watch.... I know he had a difficult time.... sending warm wishes to all of you.

[LilacTree]

On 7/5/2014 sydsgma said: Great post, ford..especially about the tests. By the way, I am in my early 60s..I was initially diagnosed at 22, but did not fully develop it until my late 30s.the orencia has done little this month..but that hAppens. I am eyeing my prednisone.

OMG, I never realized that, sydsgma! You've have had to deal with this all of your adult life! That saddens me.

As you know, be careful with the pred. I am now down to 6 mg a day. I may never get below that. I will try to go to 5 mg at the end of this month. I tried that once or twice before and was very unsuccessful, so I don't expect it to work . . . but I will give it another try.

My RA is still progressing . . . the newest symptom being the last two fingers on my right hand are leaning outward. I had hoped I would escape that, but apparently not.

[sydsgma1]

Thanks ford...I have not taken any prednisone since November. I do a 10 day ""burst and taper with 20 mg being the highest dose. I took a small pain pill and feel better. That finger thing I called the ra sway.

[LilacTree]

On 7/5/2014 sydsgma said: Thanks ford...I have not taken any prednisone since November. I do a 10 day "burst and taper with 20 mg being the highest dose. I took a small pain pill and feel better. That finger thing I called the ra sway.

So you start out with 20 mg and then slowly taper down to zero on the tenth day? Do you stay on the Orencia while you are doing that? Does that put you in remission and if so, how long does it last?

Also, do you have the "RA sway" yourself? (Good way to describe it.)

[sydsgma1]

Yes to the taper...20 for 3, 15 for 3 , 10 for 2 and 5 for 2. I have had my infusions a couple of times when on the prednisone. I get 80 mg of solumedrol. ( steroid) to help mitigate the side effects of Orencia. . I do have the sway to some extent on both of my hands...my orthopod told me that is how he knew I had ra when I first met him.