Went for my first appt. since my condition changed for the much better with this RA crap.
Doctor was very happy- I have just minor swelling in a couple of knuckles and wrists.
Pain 0, little stiffness in hands, knees & ankles. Get up & go from first minute I'm awake. Think I'm ready to go to work on Monday.
But...this is all because of the high dose of prednisone I'm on and he's only weaning me off 5 MG this week and than 5 more next. (on 40Mg per day and 15 MG methotrexate (once per week).
Still pushing to put me on Embrel or Humira. I have a long family history of cancers but he still says the benefits outweigh the risks. Says just having RA is increasing my chances anyway and not only that but the more you leave the disease untreated without these TNF blockers you open yourself up to have 8-18 years off your lifespan. 50% of people will no longer work after 10 years due to deformity, yada yada yada. Yeah- I read the brochures on this disease but kinda put that crap out of my mind when I started feeling good. Sounds like I'm going to be damned if I do or don't.
He totally blew me off when I mentioned AP. Are the majority of you using this on the west coast by any chance? I'm east coast. He said the whole thing was quasi- studies or something to that effect.
Feeling a little down about the whole thing...
Oh hunny a big hug for you. I know what it is like to be danged if you do and danged if you don't. Most RD's will blow you off when you mention AP. Sad, but true. Pip! can help you out with that and getting to the www.roadback.org site and seeing if there is a doc in your area that does AP. Shoot her a PM or she will be around shortly to answer your questions. Gimpy is another good person to go to about AP. Either one will gladly help you out.
Yes, the meds seem scary. However, your doc is right that if left untreated by ANY ra treatment, this disease can and will take time off of your life and also open yu open to the possibility of developing one of the many spin off auto immune diseases that you can develop when you have RA (like my spin offs are hypertension and asthma...had neither til ra). You are more susceptible to heart attack and cancer without treatment. It is very rare that the meds themselves cause cancer, but as the FDA says...all side effects etc. have to be made known to the patient and sometimes that scares patients out of doing what is right...getting treatment for a disease that can really take a bite out of your life in a very quick time frame if left untreated.
Yes, you prolly feel so good because of the 40mg of pred. You can't stay on that stuff forever and most likely you will experience a return of symptoms at some point in the weaning off of the pred. I really would have some type of treatment course in place before you are totally off the pred. Don't cause yourself any more pain than you have to. Research into Enbrel, Humira, and AP and figure out what fits best with your lifestyle. I can tell you that mtx has been a saving grace for me since I failed Remicade and was waiting for approval to start Rituxin. Without the mtx, I would be very bad off right now since I am between biologics. So you do want some course of treatment.
Sounds like you have hit that denial stage of dealing with RA. Perfectly normal. Most people with a chronic illness and their families do go thru the 7 stages of grief. Here is some info on that for you. http://www.arthritis.ca/tips%20for%20living/dealing%20with%2 0emotions/arthritis%20and%20cycle%20of%20grief/default.asp?s =1 Here is some info on what you have to look forward to when you do start whatever treatment. Remission is a wonderful thing! http://arthritis.about.com/od/arthqa/f/remission.htm So hang in there. I know you have lots to think about and lots to decide in a short amount of time but we are here for you!
I would think you'd be alright going on AP. Not that I'm a doc or anything, but hell, if you're doing well now's a better time to start something like that then when you're bed ridden. I think.
Pippykins, wanna jump in here?
Glad you're feeling better!!!! Yay for going back to work? LoL That one has mixed feelings I bet!
Go to rheumatology.org. Search 'minocycline'. Print that out for him. Search 'Find a Member' and see if he is there, too. Bet he is.
Everything I ever needed to know is on rheumatology.org, I tell ya'. Everything.
Yes, a lot of RDs blow off AP but I think that is more to do with their lack of clinical experience with it than any efficacy issues. As far as "quasi-science" I'm not sure what he's getting at. There are many clinical studies showing AP works, from places like Harvard and other recognised schools of research. (in fact, researchers who have analyzed the MIRA study say it was a study designed to fail, but despite that it STILL showed minocycline to work for RA). My RD does not practice AP but she has several patients on it because, even though she doesn't know how to apply it, she knows it is a recognised RA therapy so if they really want to go on it she helps them.Well, at least he didn't tell you you'd get Lupus, or Hepatitis, or start getting blue skin and black teeth! That's a bonus, really. Seriously, how come this info on cancer and deformities never come up unless you're asking about AP? Seriously, how do they sleep at night?
GS (Hi sweetie!) and Katie are right. You need to research and decide which way you want to go. AP is DEFINITELY easier the less your body has been immunesuppressed. That's not to say it won't work later - but there is a lot more to 'undo'.
As for that ninny's assertion that it's quasi-science - he's waaaay behind the times. Maybe you need a different rheumy?
Yes, I'm west coast now - but I was Midwest. I blew through 5 doctors before we gave up and went out of state to see one of the top AP doc's in the country. When back in MI, I blew thru 5 more (trying to find a rheumy to MONITOR me - all but 1 would prescribe, none wanted to monitor me - go figure! - so, I do this on my own, fail, and gee, it's AP, not the fact I didn't have a doctor on board?)
On the plus side, my OB researched AP and is now willing to work with people on it. Of course, she decided AFTER I left the state.
But it's not a west coast thing. You know that bastion of crunchy, new age, quasi-science- Harvard? They are doing a lot of the newer studies.
Don't give up!
Pip