What To Do-What To Do | Arthritis Information

I'll try to make this short but, as my adult children say, "Ma,you don't know how to make anything short".

I was a totally, physically active hockey/football mom, room parent, distance walker, swimmer, etc., until December 14th, 2006 when I came down with what I figured was just my bi-annual URI.

Into about day #5 of my typical sore throat, chest congestion, achey all over, I noticed that both of my feet & knees were aching..alot. It was most difficult for me to get out of bed and walk 10 feet to the bathroom without having to brace myself. My primary said it was just part of the viral infection I was experiencing and would pass.

The URI eventually cleared but the joint pain and stiffness did not and eventually spread to both wrists, at which point I began to do some real, in depth research on inflamatory conditions and asked the primary to test me for RA. RF, CRP and SED all came back + but ANA was - and I was given a referral to a Rheumy who DX'd me with RA.

The x-rays he ordered all came back - for any type of damage. I had made him aware of my concerns about the available meds to treat and he told me that I had a "window of opportunity" to continue my med option education and he'd see me again in October.

To curb the inflamation and pain, I've had a couple rounds of IA pred injections and have been using NSAIDS but they are wreaking havoc with my previously controlled hypertension and GERD. I won't do the pred again. It landed me in the ER with big time BP isues.

Lordy! My kids are right!!

I am absolutely convinced that the virus I picked up back in Dec. has significant bearing on the condition I'm currently in and would like to try the PA course before I even think of entertaining other options.

The condition has now progressed to involve several joints in both hands, my elbow joints and just yesterday, I awakened with a swollen, painful toe. THIS SUCKS!!!

My primary thinks antibiotics are a waste of time ("no empirical evidence that they work") and continues to push the gold standards for RA, MTX & Plaquenil.

I come here and lurk, reading all of the posts and observing people's med lists at their post's end and discussions about nasty side effects for some and none at all for others on the same med. Its just mind boggling to me having to weigh the benefits against the risks and I know that I must do something but..what to do..what to do.

OK, I'm done.

Katalina, follow your instincts, keeping posting and keep reading. I think you need some quiet time to help you work out which way you want to go.

I am not going to tell you that or even suggest something because I think this is a very personal journey. We can tell you our experiences but this is still your journey and things like loss, grief and other emotional issues are involved in your decision too.

I always think it is important that people listen to themselves also.

If I could go back in time, I would do it all and quickly. From what I've read the window of opportunity is the 1st year. I'd get a biologic in me along with the MTX to curb your body over-reacting to it. I'd take the antibiotic approach too. May as well add in the plaquenil too. After the 1st year the chances of remission are very low, not that they are ever high to begin with.

I totally agree with Cordy. I will also add...you need to project what you want. What you want out of treatment...what you see you life being..with or without. You also need to talk with the family...this disease will EFFECT them in a HUGE way. You will have good days and bad days, but your journey is individual.

The biggest suggestion today is get some FISH OIL. Try to get pharmacutical grade, but if you can't afford it talk to the pharmacist to see which is the best. This has helped with the joint pain, but the biggest benefit is lowing BP and Cholesterol.

How you are treated is your business, but know that you will HAVE to be treated in order to avoid joint damage and debiliatating effects.

AP is certainly a valid option and being rather newly diagnosed is a plus. I think you are right about the virus precipitating the onset of RA. I don't know what set mine off (after having scleroderma for 10 yrs) but it was equally sudden last October. I started AP (doxy) in November of last year and did fine until this summer, when the pain, fatigue, depression etc. really told me that something was very wrong. Back to the rheumy to find that my sed rate had skyrocketed to 125, and the systemic inflammation had raised my WBC to leukemia levels, along with worsening anemia. So, long story short, I started on Plaquenil with great trepidation about a month ago. I haven't had bloodwork repeated yet but I am feeling much less pain, more energy and hopeful again. I will stay on AP because I really believe it is the answer, but in some cases, other drugs are needed to control inflammation. Too much inflammation interferes with the ability of AP to work. Also, be careful of the NSAIDS, I developed a probable ulcer from just normal doses of them. Since going off, it seems to be healing. All I take now for pain in Tylenol. Good luck to you in your decision regarding treatment. PatYou might want to get a second opinion and find a RD who is comfortable monitoring AP therapy. You also may want to leave off that you had a "viral" infection when your symptoms began. Virus infections do not respond to antibiotics. Just leave it at infection. That way they won't automatically rule out AP therapy because they think your trigger was viral rather than bacterial.

Welcome Katalina,

I think it was very wise of you to do some research on your own and to be informed. This is a individualized journey. Each of us has to live with the choices "We" make. I wish you luck in yours.

Come and chat anytime day or night someone is always on.

Jay

Hey Catalina -

What's a PA course?

I'm of the infectious etiology group. Check out www.roadback.org. I actually think viruses have a lot to do with this but good luck finding a doc that will prescribe antivirals.

Hugs

Pip

Hello Pip,

Sorry. Got the letters reversed there. Meant to say AP.

I've read and absorbed much from many of your posts.

I have just recently begun to search and explore The Road Back and will continue to gather and attempt to process all the info that I can at this and countless other sites I've located. Every time I plan on searching for just an hour, I end up following links that take me to info and more info and the next thing I know its several hours. I am a very determined patient when it comes to proactive study of my conditions. Its the decision making, at my stage of this disease, that has me in a dither. I just don't feel that I have enough information yet to make a good decision. Found this to be interesting:

http://www.medicalnewstoday.com/articles/82727.php

I don't think my doc would refuse to prescribe av's but she makes it clear that she sees no proven clinical efficacy in their use for RA.

Also, according to her, "it makes no difference whether the etiology is infectious, viral, bacterial, genetic or otherwise". "The fact remains that you now have the condition and the best way we know how to treat it does not include the use of Minocin.

I am, however, swaying in that direction. Thanks for the post.

Katalina -

I have to run right now but read the beginning of your link. Cool info. There was post here a bit ago about how we all have extra DNA floating around. Apparently we don't slough it off. I want to try and find that post (good luck to me :-) and then re-read yours.

Hugs and happy researching!

Pip