finally had to face it

I am so sorry that you are going through the same thing. I will try to do the stress thing.  I teach high school so that isn't always easy but it's a good idea.  Thanks for the support and I do hope that you get some relief too.  Let's keep in touch.  Jane

Ellen,

Thanks for the suggestions. I have wondered why my doctor hasn't tried the antibiotics.  I will ask him about it.  I did change doctors.  He has me on remicade now.  I have been on it for 6 weeks with no change.  Nothing from any of the others I tried; enbrel, humira, rituxan. I will get the book.  Good idea.  I am tired of living in a world where nothing works.  Thanks for the help,  Jane

Hi Jane,

You may have to look for a doctor who will do the antibiotic protocol.  It's not something they were taught in medical school.  My doctor said it showed promise but it didn't pan out when they did a clinical trial.  I think that might be because it might have to be so individually dosed that it wouldn't give a standard response.  Or, because there are so many kinds of arthritis and not all may respond.  There are also genetic differences between people that can make one person more susceptible, or responsive, just like with cancer and other diseases.  (I have it in my family ; I'm also particpating, with my sisters, in a clinical study of comparing the genes of people with RA with others in their family who don't have RA.) 

     There is one other site, non-traditional treatment for autoimmune diseases, which I don't  totally recommended, except that it may help you find a doctor in your area.  I found out the name of a rheumatologist from one of the people on that site, in case at some future date I may need to try antibiotics.  The program is the Marshall Protocol.  I think the guy (Trevor Marshall) is a bit full of himself, but he did figure out how to help his sarcoidosis, and his program has helped a few people with RA and other autoimmune diseases.  He uses antibiotics like those in The Road Back, but he also does other stuff which may not be helpful for RA. And he and some others are trying to get some research documenting what they do. 

     Did you really have no change with Remicade?  Since I had high liver enzymes when diagnosed, my doctor skipped over all the regular DMARDS and had me try Remicade - it definitely worked (starting after the 2nd infusion) but I had other issues, which I talked about elsewhere on this site.  I'm now on Enbrel, which mostly works well for me.

     You might want to give the Remicade a little more time ... (or just keep it up until you find a doctor who's willing to try antiobiotics) ... But remember, it's about 8 weeks until the Remicade wears off... in case that matters, when you're looking at how you're feeling.  When the 2nd infusion wore off, I couldn't put my weight on one foot.  And I hadn't felt any pain for 2 months...

Good luck!  I'd love to hear if you find out what works.  Keep Kineret as a possibility for some future time.

I have had two remicade infusions.  They were two weeks apart and then I will have one after four weeks.  I have it next Tuesday.  I have not had any help from any biologic yet. I know it's early for me to give up on remicade.  My doctor wants me to try it for at least 3 months.  It's been around 6 weeks.  I will keep in mind looking for other treatments if this doesn't work.  I still have Orenica to try.  It's a different type of biologic so I am assuming that it will be my next med if Remicade doesn't work. The thing that worries me is that my RA is advancing throughout all these drug trials.  It just keeps invading more joints. 

There are only three rheumatologists in this area.  I went to one and then am now 6 months into this doctor.  The other doctor is in the same practice as the one I go to now.  So, I really don't have options here and the visits to the doctor are so frequent that I hate to go 3 hours away to another place.  I would miss so much more work. I already miss too much. 

I am so glad that the remicade worked for you and that enbrel is working. I liked using enbrel because I could just do it at home. I tried it for 5 months with no help. There is also a new injectable.  Who knows?  I will talk to my doctor about the antibiotics.  He is old school though so I doubt he will listen.  Thanks for the advice.  Glad you are getting some relief.  What caused your liver enzymes to go up?  That's not good. That is something I do worry about. 

Jane

Who knows, "old school" might be more aware of it having worked for some people in the past...

My liver enzymes come down to normal most of the time, so we don't worry too much about it anymore.  I still get tested every couple of months, or more often if I'm feeling like something is wrong.

Ellen

Good point about old school.  Can't hurt to ask right?  Glad your liver enzymes are under control.  Don't need that going on you too. 

Thanks Brad.  I will check out the site.  Making friends with people who understand is God's gift right now.  Jane

Kelly, having teens and a four year old just makes me tired thinking about it.  How do you do it?  Mine are in their twenties.  They still think of me as someone who can do it all but at least I don't have to take care of them any more.  It does sound like we are alike.  You just have way more responsibility than I do right now.  Hey, I managed to fix my hair this morning.  Big accomplishment!  And, I am writing these posts at work during my lunch break.  Thanks for your answer.  It sure helps to not be alone in this.  No one else gets it at all.  I don't expect them to get it.  But, it sure feels lonely sometimes.  Jane

Oh my gosh.  What a great post!  I enjoyed every minute.  I think you are right in pain management.  I have spent three years in pain just trying to endure.  I will ask my doctor to refer me.  It's ridiculous to hurt this much all the time while waiting for the "magic" med to work. 

Thanks so much for all the great suggestions.  I will read your post several times I am sure. 

Thank you.  Jane

Just a quick comment on the prednisnone. I gained 80 lbs on prednisone. It took me a long time to realize I was craving salt, and eating pistachios, chips and every other salty, fatty food. Apparently, this is part of the mechanism of the drug.  It has to do with increasing the amount of water in the cells, which is why you crave salt.  At the end, when I figured out I was craving salt, I just ate it straight from my hand, and didn't have all the fat and calories from the food I was eating. I was satisfied, and stopped gaining weight.

Since I went on Kineret, I have lost 60 lbs.  I was able to ride a bike, although that has stopped since I had surgery on my foot. Hopefully in the next 3 or 4 weeks, I will be able to start again, although I can see by the muscle wasting in my calf, it will be a long time before I am back to an hour every second day (my knees hurt too much to ride every day). Although I can't walk well, I do weights, and the bike really helped my appearance. I went to a diet center, which helped me lose some of the weight, but ended up night eating, so now I am just careful about what I eat. 20 lbs to go! 

I really would advise Kineret - it has no side effects (except some inject site reactions initally).  Prednisone just covers up symptoms, and doesn't stop damage. You need to have a biologic that works for you!

Angela,  Thanks so much for the salt insight.  You are so right.  I crave chips when I get home from work and I never ate chips in my life.  I am going to try to the salt out of the hand and see how it goes.  I keep hearing about kineret.  I will ask my doctor about it.  I have to take a remicade infusion on Tuesday so I have a list of things to ask him.  That should be interesting.  I truly am tired of biologics that don't work. 

Thanks again for the help.  Very interesting.  Jane

I feel for you. It's like we are completely different people. This disease sucks and when you mention to someone that you have it, you get, "Oh, I have that in my right hand".  Sure you do.  My brother only hears the word arthritis just like everyone else.  I hope you get better soon.  Thanks for your input.  Jane