Getting Older With RA. Where's the Research?

When I was first diagnosed with rheumatoid arthritis I almost never saw anyone with RA. The few I met were elderly ladies who were probably younger than I thought, and always thin and frail with deformed hands due to joint damage.

When internet access became available I joined support groups on Yahoo first, one of which I am still in. There have been men in the group but now we are all women from mid 40's to late 70's. As a group our RA seems to be getting more complicated than it was, while our doctors become less interested and more numerous.

Polly used to see her rheumatologist every 3 months, for at least 15 minutes and was a great deal more encouraging. Now he tells her she is looking well, considering. She feels like they're speed dating, based on the appointment length.

Julie says "It seems like researchers could make connections between having RA and some of the other health problems that have developed as I age (she's our star at 78).  After all, RA affects the internal organs and that could be the cause of some of the other issues."

At a recent conference I heard that research should inform health policy, but it seems to me there is an absence of research on long term RA in the present treatment climate. I worry about aging while taking drugs that were appropriate when I started to take them but may become more toxic with increasing age, as liver and kidney function decrease. 

Clinical trials also very commonly exclude older people who may have co-morbidities or even solely because of age. This makes treatment data on elderly people with RA hard to find. 

Another issue to me is that ambitions in treatment of older RA patients are also reduced: if you are elderly with late onset RA, then "Achieving structural remission, functional remission and low disease activity in clinical practice in elderly with late onset RA patients are realistic goals." That's not the same goal used with young early onset patients.

It's notable that effectiveness research is done a lot less often than the high powered industry trials that show comparability of treatment effect for the purpose of getting new drugs approved.

Often effectiveness research, which might look at more difficult issues, is determined by the mandate and authority of the researcher, as well as where their interests lie. The individual researchers formulate research questions, but we seldom see patients involved in formulating research questions.

We need to be clear and principled about research and we need to involve patients in deciding on research topics. Patients ultimately pay for the whole system and have almost no voice. There is some government involvement in making this a more common practice in the US and Canada, and there are some organizations like the Arthritis Research Center that go to a great deal of trouble to include patients but they are the exception.

Involving patients takes work from both sides: providers and patients. It is vital to include patients to help change priorities and improve quality of care.

Patients are necessary for culture change and healthcare progress.

                                         A McKinnon
We don't want to wait as long as my friend in the picture.

Martha Doesn't Live Here Anymore

Here's a wise guest post from Julie. I think she and her husband have the true Christmas spirit.

"I have certainly "re-invented" many aspects of my life to accommodate my health.  I am sure that most of us have done that.  I tried for a long time to just keep going as usual at Christmas, but that didn't work at all.  When I was younger, I did much better and could do more.  As older age sets in, I struggle more each day.

I think the thing with the Holidays is that we all have to do our normal routines and then we have to add more because of the holidays.  That is what is hard for me.  I have a hard enough time just getting through the day doing what I have to do - laundry, cooking, shopping - (you get the idea) and then piling other things on top is just plain too difficult at times. 

Next week and the weeks following I have to get things done for Christmas.  My youngest son has graciously offered to have our Family Gathering at his house.  I haven't heard from the rest of the family, so really don't know what everyone plans to do.  It is not fair that he is hosting everything again!  Hopefully, we can figure out who is planning to attend and figure out some simpler dinner menu. 

Heath-Robinson. How To Dispense With Servants In the Dining-Room

The family is all spoiled by my past formal dinners.  We are not doing that anymore!!!  My body has rebelled and I just am unable to repeat my past "Martha Stewart" performances - HA!

I just accept what is and go from there.

John says all of the neighbors probably think that I am dead because I haven't taken the usual dog walk in months.  I was just about ready to start the walk again when I broke my toe!  Now, the weather is awful and I don't want to go outside.

I wish all of you could see Lou Lou the cat.  He is a monster in size.  I can barely lift him.  We plan to have him neutered in the next few weeks when he is 4 months old. The doctor said that he would be more able to withstand the anesthetic then.  We have ordered him a heated bed as he sleeps in the garage.  It was supposed to be delivered today but is not here yet.  John asked me what I wanted for Christmas and I told him I wanted a heated bed for Lou Lou and he said that is what he wanted also - so that is what we are giving each other - a heated cat bed. - HA!"

Old Christmas Card

That's such a great present Julie and John are giving to one another. You can't help but smile.

Here's a link about strategies for dealing with patient burnout that also has 10 useful tips. I'm a pushover for a good list and Martine Ehrenclou has written a most helpful post.