no biologicals for me

[inflamed and in pain]

Hi everyone,

I'm new to the forums. I have had RA for a little over a year now. It all started in 2008, I put together a benifit auction for my nephew who has cancer and I did all the leg work for all the dontations and all. That was in augest of 2008 then I had a really bad cold that lasted like forever, LOL but it lasted probably a good 3 weeks. Then all at once my feet started to hurt, I didn't think much about it at the time but it just got worse, I thought it was my shoes so I bought different shoes and by christmas it was getting hard for me to walk, then the pain started in my hands, I've always had joint problems all my life, I always made a joke by saying I was old in my first life because I have the old bones to prove it, but this was getting seroius now, so finally probably after 6 months of the pain and seveal aleve a day I went to my family dr. and she thought it was RA so she did some testing to make sure it wasn't anything beside RA before she sent me to the rheumatoligast. So put me on predisone, I was like a new person with it. So I went to see my rheumatoligast and he did more blood work and said it was RA so he put me on 20 pills a day for a very long time. But he wouldn't talk to me and then he moved out of the city so I talked my family dr into treating me since I can not take the biologicals.

So I have been taking Medrol, methotrexate and Feldene. But now the methotrexate is making me sick so i'm off of it. I asked the dr. just what the risk for me to be if I took biologicals. Well, I guess I need to tell you all in 2006 I had melanoma and now since I had that the risk is to high for me to try any biologicals for the melanoma can come back with even a greater chance on the biologicals then on its own.

I go see a new rheumatoligast at the end of the month. But the pain I am in is getting bad, I guess my steriod will have to be increased but the worst part about that right is that I've gained waight since i've been taking it and not sure how to get rid of it, and not sure what else they will try because right now the methotrexate didn't seem to work that well either before it made me sick, I tried acuputcher, not sure if it worked or now, there is just so much that goes on in ones body with RA it is hard to tell whats helping and whats not.

But the worst thing about RA, for me that is, is the feeling of being useless. I used to do everything for myself and I worked hard and now it is a struggle to even tie my shoes, I have a wonderful man, he is very patiaint and is always there for me, I have read on some of the forums where the spouse has problems with the ones with RA and I must say that mine is very supportive and understanding. But the feeling of being useless is always there with me. Don't misunderstand me I don't feel sorry for myself, I've had a good life and i'm still having a good life, RA is just something that you have to deal with, you just have to learn to live around RA.

But I was wondering if anyone knew anything that would help besides methotraxate and the biologicals?

I've rattled enough and I thank you for listening and thank you all for being there because the forum does help.

[Paula]

I am really sorry to hear you are suffering - I wish I had advice to share, but I am very new to this game, diagnosed recently and starting Enbrel next week. Hang in there! Best of luck and sending well wishes your way,

Paula

[kageyd]

I"m very sorry also to hear your situation. Most of us here discuss the standard treatments, but there are occasional discussions of dietary things that help people, or unusual combinations of vitamins, and such non-pharmaceutical approaches. Of course the appropriate kinds of exercises are also helpful, for many but unfortunately not for all. There was a recent discussion here of the anti-inflammatory diet; if you can't find it (sometimes it's a little hard to find older items on this forum), post again and I'll find it for you. In essence, it was like the Mediterranean diet, low fat, not too many carbs (with most carbs from grains and veggies), minimum alcohol (but some wine OK), olive oil instead of butter, mnimum of meat and enough fish to get Omega-3's, watch the salt. Pretty much no processed foods (very few Big Macs or boxed cookies, etc.).

Keep reading and you'll find all kinds of suggestions, many of which have only helped a few people, but then it's YOU, the one that is trying to find something that work.

Best to you. Kageyd

[kpc]

Hi Everyone!

I don't have arthritis but I have a loved one who actually suffers from it. I know how awful it can be.



I've been reading this blog that gave valuable information for me about RA and how to overcome RA. It's worth the read as the author updates her blog constantly to give RA sufferers tips on how to handle this often crippling disease.

http://aboutrheumatoidarthritis.blogspot.com/

Hope you enjoy reading it too as I am. All the best to everyone.

[kageyd]

Kpc, thanks for your personal caring, but I have a major issue with this otherwise basic, simplistic, blog. It places so much guilt on the reader, that in summary I find it a damaging post rather than a helpful one.

This will make people feel guilty about causing their own rheumatoid arthritis. The blog states, quote: “Arthritis can be prevented by having a healthy lifestyle.” Well, that is just NOT TRUE as such a blanket statement. There is not a smidgen of proof for this in rheumatoid arthritis. it is true that physical issues - excess weight and improper exercise and sport injuries - often trigger the early stages of osteoarthritis in SOME people, but not all OA sufferers. I was an osteoarthritis sufferer in my 20’s, and had absolutely no physical triggers, was not overweight, did not suffer sport injuries, never played competitive sport, did not have relatives with OA, etc. It just happened, it’s been progressively with me for 40 years in every large joint in my body, and my “lifestyle” did not cause it, though my “lifestyle” has very much helped me to manage it by exercise and weight control.

There is absolutely NO evidence that juvenile rheumatoid arthritis is a result of any kind of lifestyle. This blog will make parents of RA children feel that they did something wrong in their parenting. It will also make adult-onset sufferers of RA believe that they are guilty. There is NO evidence, only anecdotes, that adult onset rheumatoid arthritis in younger adults is caused by “lifestyle,” definitely not in the people who have their first RA diagnosis in their teens, 20’s and 30’s. This blog is telling everyone who has RA that they could have prevented it by lifestyle, that they are therefore responsible for causing this horrible disease in themselves. I think that is a hurtful and depressing message for someone to give to all the people suffering from RA.

One piece of useful information in the blog is the so-called anti-inflammatory diet, which is virtually identical to the Mediterranean Diet and the Pritikin Diet – all three of which are valuable in weight control, in preventing cardiovascular problems (for which there is evidence, not just anecdote…), and which MAY reduce inflammation in SOME people with arthritis. But there is absolutely no evidence that these diets either prevent or cure rheumatoid arthritis, even if they reduce inflammation a little.

RA is not a simple disease, it is horribly complicated, and to make sufferers feel that their lifestyle might have saved them from RA is just plain wrong. The blog gives a lot of general information, all of which is easily found elsewhere, but implies to suffering people how easily they could fix their disease just by lifestyle changes. Not so, I wish it were.

[Paula]

kageyd: Thank you for the insightful post - I, as so many others RA sufferers, first searched for "causes." I am a mild smoker (yes, very unhealthy) - and have found a few articles about how RA can be more prevalent in male smokers, perhaps even females. But, as you have said: it is far more important to search for the ways to combat the illness than to lay a guilt trip on those who have the disease, or parents! I am 46 and thin, a vegetarian, etc. - and yet, here I am.

Thanks for the excellent response! Best of luck to everyone. I took my first steroid pill this morning, as the Enbrel is clearing not working yet!

Paula

[kageyd]

Thank you, Paula. As you recall, I have a 45 year history in direct social service of various kinds, much of it medically related, and as a powerful advocate for the elderly (I even founded an elder abuse prevention agency). I have always been terribly offended and angered by people who offer undocumented, overly simplistic solutions to difficult problems. I lived in CA for many decades through the "diet solves all problems" crazes, and a lot of other crazes beyond that, and just plain learned by experience to "wait until the evidence comes in."

It's not the person who posted that I'm mad at, she's sort of an innocent, trusting bystander. My target is the person who runs the blog, who is a nurse (at least I think that's what her degree initials stand for) and she really must know better than to make the kind of blanket statements she puts out - mixed in, of course, with some good stuff, which just confuses everybody. She, too, is not evil really, I saw no evidence of any money-making schemes, but she's just naive and very inappropriately authoritative about things she has no business being authoritative about. You and I both know very well that lifestyle is NOT the source of our arthritis, and so do I believe that is true for most of the people who post here, they know they are not to blame.

Thanks for your understanding. I think about you often on your new journey, and hope that you continue to keep us all up to date. Each day each twinge I have around my body scares me that maybe more RA is creeping in, despite the sulfasalazine. Take care now. Kageyd