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z31maniac
z31maniac MegaDork
6/8/18 1:37 p.m.

^I'll let the doc break that one to her if they end going that route laugh

Klayfish
Klayfish PowerDork
6/8/18 2:51 p.m.
z31maniac said:

^I'll let the doc break that one to her if they end going that route laugh

 

Ask her if you can press the button.... cheeky

z31maniac
z31maniac MegaDork
6/8/18 4:47 p.m.
Klayfish said:
z31maniac said:

^I'll let the doc break that one to her if they end going that route laugh

 

Ask her if you can press the button.... cheeky

Ha! She's surprisingly strong for being pint-sized.  

codrus
codrus GRM+ Memberand UltraDork
6/8/18 6:23 p.m.
Klayfish said:
z31maniac said:

^I'll let the doc break that one to her if they end going that route laugh

 

Ask her if you can press the button.... cheeky

 

Actually, having someone else press the button would probably make it easier.  I took Humira for about 5 years before it stopped working properly for me, and the most annoying part of the injector pens was the anticipation.  I'd sit there with my finger on the button for several minutes, knowing it was going to hurt some (although, granted, not a lot) and not wanting to press it.  I take Remicade now -- it's an IV infusion so you go in to get it every 6-8 weeks.  The needle for the IV line still hurts, but it's someone else doing it and that makes a difference. :)

The biologics carry an increased risk of infection and an increased risk of cancer, due to the suppression of the immune system.  The increased risk of cancer is kind of scary, but it's still relatively small and arguably less than the increased risk of having unchecked inflammation going on anyway.  So yeah there are significant side effects, but in general they suck less than the disease does, by a lot.

One comment on Humira is that it needs to be refrigerated.  Keeping it in the fridge isn't a big deal in general, but it does mean that a breakdown or power failure can be an expensive proposition.

 

Klayfish
Klayfish PowerDork
6/8/18 7:07 p.m.

Yes, it needs to be refrigerated.  It's something to keep in mind if you ever travel and have to transport it.  You alluded to it, but make sure your insurance is good.  It's some expensive E36 M3.  I think each pen is something like $2000, and you take it every other week.  So for me, that's $52k/year for that medicine alone, not to mention the other meds I take.   Thankfully, my insurance is good and I get deductible assistance from Abbvie (the maker of Humira).  I pay maybe $20 for the entire year, because after I hit the deductible that they assist with, I'm covered at 100%.

As for the anticipation of the pain of the shot...that's the thing...you can't sit there and think about it.  I literally open the pack, sit down, locate the spot I want and do it in one foul swoop.  Put the pen against my leg and immediately press the button...no anticipating or stalling.  Yeah, it makes my eyes water, but it only lasts 10-15 seconds and it's all over.

I was the opposite of you codrus.  I had the severe reaction to Remicade after about 2-3 years of use.  It sucked, because those were some of the most peaceful two hours I would ever get.  Just sit there with the IV in and watch TV, read a magazine or just close my eyes and relax (they don't let you actually fall asleep). 

1988RedT2
1988RedT2 UltimaDork
6/8/18 7:48 p.m.

Diet is huge with RA.  Google RA and anti-inflammation diet.

https://www.prevention.com/food-nutrition/g20504873/diet-changes-for-rheumatoid-arthritis/

 

z31maniac
z31maniac MegaDork
6/9/18 4:37 p.m.

I can't tell you how much it means to hear all of your stories, I've related them to the better half and it's helping her too. 

If you have any other stories, thoughts, suggestions, things to tell the doctor to look for they might miss I'm all ears.

 

Especially that last one. Docs can miss stuff sometimes because of tunnel vision. My aunt doing that for my dad a decade ago saved him.

rustybugkiller
rustybugkiller HalfDork
6/9/18 4:59 p.m.

In reply to Klayfish :

Oh yeh, stomach is bbbad!

Chesterfield
Chesterfield New Reader
6/9/18 8:52 p.m.

While I do not suffer from RA, I do have another variety of autoimmune disease which uses similar treatments. It took about 2 yrs of testing to reach a definitive diagnosis.  A really good specialist can make all the difference. I have one who listens as well as he talks, and he is very proactive to any issues. I am also part of an online support group, and an online information organization.  These help with questions and sharing experiences.  My treatment is a drug cocktail of predisone, imuran and plaquenil. I was originally on methrotrexate instead of imuran, but it was affecting my liver. That is one of the drawbacks of my treatment is the monthly bloodwork to ensure the medication is not causing me problems. I know for me having a diagnosis was a huge step forward because now we knew what was wrong with me and now we could start treatment to improve my daily life.  Best of luck to your wife and you.

drsmooth
drsmooth HalfDork
6/10/18 3:01 p.m.

I'm not a Doctor, I just play one on a message board. But you may want to look into Omega 3 supplements instead of steroidal medications in particular prednisone. Prednisone can be pretty nasty stuff if taken long term and can increase risk of diabetes. 

My girlfriend has R.A. and exclusively uses Omega 3 supplements, she has no symptoms of R.A.

As with most supplements they may not have the same benefit for everyone.

Your Mileage may vary, and make sure to research  Omega 3 supplements before trying it as it can have adverse interactions with other medications Here are some positive and negative known interactions.  There are more but that was a 10 second google search.

MazdaFace
MazdaFace Dork
6/10/18 8:04 p.m.

My mother has it. She was on a drug for a while that made her skin turn red and peel. She was embarrassed to go anywhere and when she did she wore gloves. I don't remember what medicine it was, but it was about 10 years ago. Not sure what she's on now; she gets a shot once a week that my dad gives her at the house. Seems to help. 

z31maniac
z31maniac MegaDork
6/11/18 11:27 a.m.

Specialist got back with us, she has an appointment on the 27th. 

 

Thanks again for all the insight.

mtn
mtn MegaDork
6/11/18 11:44 a.m.

My wife, the Dietitian, has reported that people who have moved to/towards a plant-based diet have seen dramatic improvement to their "arthritis" (she doesn't treat arthritis, so not sure if it is RA or PsA--this is just anecdotal for people with other things that they're seeing her for).


There is at least one study that supports this: Fasting followed by a vegetarian diet has a favorable influence on disease activity in some patients with rheumatoid arthritis. Obviously only one study, and YMMV.

 

z31maniac
z31maniac MegaDork
6/11/18 11:56 a.m.
mtn said:

My wife, the Dietitian, has reported that people who have moved to/towards a plant-based diet have seen dramatic improvement to their "arthritis" (she doesn't treat arthritis, so not sure if it is RA or PsA--this is just anecdotal for people with other things that they're seeing her for).


There is at least one study that supports this: Fasting followed by a vegetarian diet has a favorable influence on disease activity in some patients with rheumatoid arthritis. Obviously only one study, and YMMV.

 

Cool, thanks for the link! I'll give this a read and forward it to the better half. 

z31maniac
z31maniac MegaDork
6/27/18 12:02 p.m.

Update

 

RA specialist confirmed her diagnosis this morning and indicate it's an aggressive form of the disease.

They gave her a steroid shot, a prescription for a Folic Acid supplement, and she will start taking Methotrexate - which was originally used as chemotherapy for cancer patients starting in the late 40s. sad

Joe Gearin
Joe Gearin Associate Publisher
6/27/18 12:05 p.m.

Sorry to hear that.   If the Methotrexate does more harm than good, take a look at the CBD ointment.  It's helped my Mom a ton!  (she's completely off R/A meds at this point)  

z31maniac
z31maniac MegaDork
6/27/18 12:29 p.m.
Joe Gearin said:

Sorry to hear that.   If the Methotrexate does more harm than good, take a look at the CBD ointment.  It's helped my Mom a ton!  (she's completely off R/A meds at this point)  

And Oklahoma just passed medical marijuana!

She is supposed to go back in a few weeks for a checkup unless she just can't handle the methotrexate. 

Keith Tanner
Keith Tanner GRM+ Memberand MegaDork
6/28/18 12:04 a.m.

The chemo dose of methotrexate is considerably higher than the RA dose.

Janel is currently tapering off her predisone and not enjoying the ride. I guess it's a long process to learn what works and what doesn't for an individual. Thanks for this discussion, it's opened my eyes to some possibilities I didn't know about. I only get the information second-hand.

z31maniac
z31maniac MegaDork
6/28/18 7:55 a.m.

Yeah, I just find it interesting that many of the "side effects" are symptoms of RA the medicine is supposed to help!

She was feeling extra crummy last night after her steroid shot, but they told her it would take 24-36 hours before it was "all absorbed" and she'd start feeling better. She could barely eat pizza last night. 

She's also been doing all the research on anti-inflammatory diets, doc mentioned to absolutely stay away from all processed sugar foods and processed red meats, needs to learn to like fish, etc. And also eat many more vegetarian meals than we do now (which isn't often).

Joe Gearin
Joe Gearin Associate Publisher
6/28/18 9:58 a.m.
z31maniac said:
Joe Gearin said:

Sorry to hear that.   If the Methotrexate does more harm than good, take a look at the CBD ointment.  It's helped my Mom a ton!  (she's completely off R/A meds at this point)  

And Oklahoma just passed medical marijuana!

She is supposed to go back in a few weeks for a checkup unless she just can't handle the methotrexate. 

While CBD's contain little or no THC, looking into medical marijuana with THC may be worthwhile.   My mother has a friend with severe nerve damage and pain.  She's on a few MJ medications, and they have really transformed her life.  The opiods they had her on previously took her to the brink....she even tried committing suicide.  Since she's been on the medical MJ, her life has improved dramatically.  

Good luck--- I hope your wife finds a workable solution.

z31maniac
z31maniac MegaDork
6/28/18 11:44 a.m.
Joe Gearin said:
z31maniac said:
Joe Gearin said:

Sorry to hear that.   If the Methotrexate does more harm than good, take a look at the CBD ointment.  It's helped my Mom a ton!  (she's completely off R/A meds at this point)  

And Oklahoma just passed medical marijuana!

She is supposed to go back in a few weeks for a checkup unless she just can't handle the methotrexate. 

While CBD's contain little or no THC, looking into medical marijuana with THC may be worthwhile.   My mother has a friend with severe nerve damage and pain.  She's on a few MJ medications, and they have really transformed her life.  The opiods they had her on previously took her to the brink....she even tried committing suicide.  Since she's been on the medical MJ, her life has improved dramatically.  

Good luck--- I hope your wife finds a workable solution.

Yeah, I don't see anything wrong with side of benefit with getting relaxation as well. 

See understands the methotrexate is really hard on your liver, so she should only rarely have a little bit of alcohol while she is on it.

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