I joined yesterday after poking around for about a week. It looked like a perfect home for an illness I don't want nor do I really want to discuss with anyone right now (and I haven't). I found out I had this about 3 weeks ago, and go on Monday to discuss treatment. Dr was certain this was what I had, but did his due diligence and ran a ton of blood work (7 vials) and did x-rays on my problem area's (sacro, hands and feet).
Thankfully it only took 9 months to get this DX, but even then the last 9 months sucked as I'm a very active person and have 3 boys that keep me busy full-time.
Currently I'm only on Meloxicam and it helps a lot, but it messes up my stomach. So, I take one every few days. I also have some lidocain patches I'll put on my back and those help a bit. He talked about Methotrexate being the standard starting drug.
My first symptoms were pain in my lower right back (sacro area), neck pain and then pain and swelling in my fingers in the distal area. Plus my back was so stiff when I would get up in the morning and when I would sit for awhile. I knew I didn't hurt it and it wasn't getting better. This part confused early Dr's since they would look at RA, but that doesn't necessarily correlate and my SED rate was not high and RA Factor was negative. First Dr sent me to physical therapy with muscle spasm drugs etc.
Changed Dr's that one thought it was nerve damage due to the mismanaged pernicious anemia and sent me to a Neuro. Neuro said no nerve damage, joint and referred me to Rheumy.
Luckily I was sent to a Rheumy stat, as they called me and got me in, not me calling them. The pain bounces around but it is in some of my toes, thumbs and on the side of one foot now too. Have also had pink eye on and off this past year a few times.
I have psoriasis but didn't really realize that was what it was until Dr pointed it out as it is minimal at this point. Eraser size lesion on my elbow, some on my lower scalp (I always thought it was due to hair products irritating my scalp) and my nails have always been horrible. I hated them SO much I would bite them. Currently have gel nails to keep from biting them.
SO, my question will the area's that were first hit and or affected be the ones I suffer damage or get worse? This literally came out of nowhere (though I also have pernicious anemia). I am a runner and slacked off for awhile, but now realize moving will help me and it will also help me emotionally and mentally. While I don't hurt while running, I do pay for it later.
Welcome to the group! You're right, you did get diagnosed relatively fast. Many of us realize that while the disease didn't become fully active until a certain point, there may have been issues simmering for some time.
You said, "SO, my question will the area's that were first hit and or affected be the ones I suffer damage or get worse?" The issue is that those areas where inflammation sticks around in are the ones that experience inflammation with no control. You had said, "SO, my question will the area's that were first hit and or affected be the ones I suffer damage or get worse?" Not necessarily. It depends on a lot of factors, but getting treatment started is very important regardless. If somebody has primarily tendon involvement, there won't be much damage, as an example.
Some have rapid, aggressive disease, others don't. There is no real way of knowing which you are at this point. With early treatment, maybe you will never find out?
I have a lot of tendon issues. Not so much in the joints themselves. No significant damage as yet, even though my first and hardest hit areas were my hands and feet - later was shown that all of that was related to my tendon inflammation and has little to do with my joints.
Thank you GrumpyCat. This is all so new to me and really just started doing a little research this week before my appointment Monday. This sounds naive, but I don't even really know the difference between what is tendon related and joint? I'm assuming my foot issue is totally tendon related, my thumbs are my tendon than joint, but all the other area's seem to be joint. What bothers me most is my right lower back sacro area and my fingers and thumbs.
I appreciate your response. This board is my only sound place right now as I digest all this.
GrumpyCat said:
Yep, we are all different little snow flakes. :-P
Some have rapid, aggressive disease, others don't. There is no real way of knowing which you are at this point. With early treatment, maybe you will never find out?
I have a lot of tendon issues. Not so much in the joints themselves. No significant damage as yet, even though my first and hardest hit areas were my hands and feet - later was shown that all of that was related to my tendon inflammation and has little to do with my joints.
Thank You Stoney. I think I'm just trying to wrap my head around this right now and have a million thoughts. One thing I am trying to do is accept. I slacked off because I was in so much pain. I now realize forging ahead will help me so I've started running again and set some goals. Obviously it doesn't hurt when I run, but I do pay for it later. Just need to get some some meds that will help me and more gentle on my stomach.
Stoney said:
Welcome to the group! You're right, you did get diagnosed relatively fast. Many of us realize that while the disease didn't become fully active until a certain point, there may have been issues simmering for some time.
You said, "SO, my question will the area's that were first hit and or affected be the ones I suffer damage or get worse?" The issue is that those areas where inflammation sticks around in are the ones that experience inflammation with no control. You had said, "SO, my question will the area's that were first hit and or affected be the ones I suffer damage or get worse?" Not necessarily. It depends on a lot of factors, but getting treatment started is very important regardless. If somebody has primarily tendon involvement, there won't be much damage, as an example.
You can ask your doc about taking NSAIDS with a drug like Prilosec, or Prevacid, etc.. There are some name brands that have the two (NSAID and a PPI) combined, but they are pricey. That might help your stomach a little. Also, make sure that you eat something before you take them. That helps a lot without adding another medication to the mix.
Without an MRI, its near impossible to tell what is tendon and what is joint. Not naive at ALL. There are tendons near the joints, pain radiates, so does swelling - good luck figuring that out! Some of it was intuitive, like when my achilles specifically hurt, but closer in to the joints it is tough to discriminate. I learned where my issues are when I got my MRIs done. Well, some of my issues anyway. I have only had my hands and wrists scanned. Will be doing my C-Spine in January.