Monday, November 8, 2010

RA Update



It is approaching 8 years since my healthy life was hijacked by RA.  I am now 3 months into my detour with Humira.  I have to admit that while I am 75% pleased with the results that I have seen, I have also not seen how it will do through the upcoming winter months.  Winter is the hardest on me and I have just been shown a sample of what I am afraid is in store for me.  Over the weekend, we had overnight temperatures drop down to just below freezing for the first time this fall, and by noon Saturday, my hips were hurting enough that it was very painful to walk.  Can't wait for the low 20's and throw in some snow or freezing rain!
For me personally, this is how my life with Humira breaks down so far:
Pro's
Most days about 70% pain free
Slightly increased flexibility
Most days little to no fatigue
Feel up to working out and walking again
Con's
Feet and ankles have felt no relief at all
Ring finger on left hand is now giving me incredible pain (I'm sure this is just the progression of the disease, nothing to do with Humira)
When fatigue does drop by to visit, it seems more severe now
Shots hurt BIGTIME

I have been working out using the My RA Fit Kit program and while it is ok, I must confess that I am not able to bend to do some of the flexibility exercises, the weight routine is good, but I do not have the time to do as much cardio as they require in a week.  I am still doing what I can with it hoping my flexibility will improve.

I got my flu shot 3 weeks ago.  Funny how in my preRA days, I used to dread getting a flu shot.  After giving myself injections for 7+ years, I didn't even feel it.  I have heard several people talk about feeling bad afterward or even coming down with the flu after getting the shot.  I have never had any reactions or complications from taking a flu shot.

Now, the most painful update, it has now been 5 weeks that my KTM has been in the shop.  They called me last Wednesday and told me it was almost back together, that it would be ready by 5pm.  I was so excited, I rushed around and drove 85 miles north to the shop to find ... it was together, but running lean.  When they pulled the carb off to check the main and pilot jets, the pilot jet broke off in the carb body.  Needless to say, I'm  way passed depressed, I'm pissed now.  It has been 5 weeks for a top end job (piston and rings)  and who knows how long it will be before they have it running.  When we had our house built, it only took 7 weeks!  

11 comments:

Lana said...

I did not realize that you were diagnosed eight years ago. It has been a little over two years for me even thought I was sick for quite sometime before I received a diagnosis. Humira has made my life easier too and I am very grateful for that. I am still dealing with pain in my feet and ankles and my hands, fingers and knuckles. In fact, my knuckles are so inflamed; you would think I punched a wall. Definitely, the cold weather does not help and I can feel it into bones. Last Friday, I took the shot out of the fridge to take before I went to work and then as I was about to leave, I remembered it and had to give it in my thigh without numbing the area and it was sooooooo bad that I was hoping on one foot trying to get my bearings back. Of course, my toddler was laughing a storm. I don’t complain about my flu shot either because I cannot afford to get sick with a suppressed immune system. At least you are trying to workout; my workout consists of chasing a toddler and cleaning up messes after a back talking preteen (who I have officially threatened with military school) and the biggest baby who I call my husband. Hope your baby comes home soon.

tharr said...

It will be 8 years in March 2011, although like you, I had it probably a good 3 years before my official diagnosis. I know exactly what you mean about the knuckles looking like you punched a wall.

At least your toddler got some enjoyment out of your shot last week! lol It sounds to me like you are getting more of a workout than I am.

I've officially given up on getting my bike back this year!

livingwithra said...

Terry, you pro and con list almost mirrors what I would write after now being on Humira for 7 months. I think it's clear that biologicals aren't a cure or necessarily stop all progression of RA. But, it's probably slowed it down.
Andrew

tharr said...

Andrew, I am feeling better than I did on Orencia, but it still leaves quite a bit of room for improvement. Like you point out, I don't believe it is stopping the progression of my RA.

rheumforgod said...

Well, that really stinks about your bike. Nothing like getting your hopes up only to have them crushed. I would be ticked too--especially after driving all that way!!

Wow, eight years brother. You are a soldier. I hang on to every word you guys on biologics write in regard to how they are treating you, knowing they may be a part of my future. For you to say they hurt really scares me. And no relief in your feet and ankles. How awful for you! That is where I am seeking relief the most. I'll be praying extra hard for you as the cold weather increases.

I am incredibly impressed that you have been sticking it out with the RA Fit Kit. That's discipline! I love working out. But if I don't have a class or a workout partner, I'm in the same spot as Lana. I call chasing my one and a half year old all day and keeping my other three boys in line a workout!

tharr said...

Kelli, yeah, I've given up hope on getting it back before the cold sets in. Storms are supposed to come in over the weekend then drop from 15 degrees above normal to 5-10 below normal. My joints can hardly wait!!

It will be 8 years in March, thanks, but I really didn't have much of a choice. I could lay down and let it win or I could fight back to enjoy life all that I can. Don't let it scare you about the shots. The Enbrel that I used for a little over 5 years did not hurt, but the Humira is a different story. Thank you for the prayers.

I loved working out when I was younger. I miss being able to push myself like I did back then. I'm pretty weak in both strength and endurance compared to when I was racing full time.

mary said...

Can't believe you haven't gotten your bike back. I would be very unhappy. Seems like in all that time they would have figured out the second problem before calling you to pick it up.
I am glad the humira is doing you some good. RA is stubborn and I think it likes to hold at least one joint hostage at all time.

Anonymous said...

Terry
25 years ago you would probably get the parts and knock it off on a weekend. It is never easy watching someone else work on your bike. I was able to go back on the arava for a week but am having a dental implant installed on Friday and will have to be off everything but tramadol till I am done with the antibiotics. The good news is that after going off the orencia I am convinced that it was helping quite a bit. I hurt like hell but am taking tomorrow off to hit the woods with my little bow and arrow while I can still pull it back.
Adios for now
Phil Syracuse

tharr said...

Mary, I was pretty upset with the shop this morning, didn't say anything I could later regret saying, but let them know how I felt. Low and behold, got a call at 4 pm and my bike was suddenly ready.
I think one of the best things I can say after being on Humira for a little while is the absence of fatigue!

Hey Phil, if I still had a 2 stroke, I would have never taken it to the shop. I have always done all of my engine work on 2 strokes. Just not that comfortable ripping into a 4 stroke engine.
Thats a good way to tell how much your meds are doing for you is to stop taking them for 10 days to 2 weeks.
Happy hunting buddy.

Skye said...

I've noticed so far that the medications do nothing when it comes to helping my feet either, and it's getting chilly over here in cali at night and i've been way more sore then usual =/ sucks. I hate cold weather!

tharr said...

Hey Skye, I have been on Enbrel, Orencia and now Humira and have had no relief in my feet from any of these meds. I have serious damage in my feet though, hopefully yours was not as advanced as mine was when you were diagnosed. I know exactly what you mean about the chilly temps. After last winter (bad here), I am dreading this winter to the second power! Hope it turns out to be mild one for all of us with RA.
Hang in there girl, spring will be here soon.