Rheumatoid Arthritis (plus) support thread

For injury and health related discussion and support only. Please note that this is not a substitute for seeing a health care professional.

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Postby summer » Sun Dec 21, 2008 4:52 pm

Frostfire wrote:Okay, I'm just gonna use this space to moan a bit :)

I've been giving myself a shot once every two weeks of Humira. It is the only drug that has made a difference with my RA and I would be a LOT worse off without it, but I have to inject it under the skin on my stomach or on the front side of my thigh (over the quad area). Well, this always is extremely painful and leaves a very sensitive area for a few days. I'm crying about it today because I did my last shot on Tuesday on my stomach and I kept bumping it today, ouch! :cry:

Alright, just tell me to suck it up. I am fine, just wanted to complain a little . . .
Hi Frostfire, sorry to hear about your trouble with the injection site, I use Methtrexate in the same way, I use the stomach area as well, I cant say I experience any pain, the area afterwards can be slightly tender for an hour or so, but usually Im fine.Mabe its to do with the actual medication you are on, sorry I cant really help.Are you doing OK on the Humara?The MTX works for me, but on two occaisons I have had to come off it, due to ill effects on my liver, at the moment I am off it due to a rash which is thought to be caused by the MTX, Ive been off it two weeks now, and already Im in pain, and stiffening up, all a real downer, I also have immense fatigue , do you get this ?, and if so, how do you cope with it.I mostly fight it, and push myself on, usually I can manage, but sometimes the feeling of exhaustion is too overwhelming, and I have to give in, literally going to sleep for a while,so shaming, and fills me with guilt, but mainly anger at the whole disease.I still find it hard to come to terms with the diagnosis. Tricia
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well, back again..

Postby highonlife » Sat Feb 28, 2009 12:23 am

after having been severely depressed, extremly affected by the ra (to the point of not beeing able to wash my own hair most days/weeks, not being able to live alone) after a year of testing drugs of different kinds and living at my moms house, finally it may seem that i can use and have effect of embrel.. so the coctail of drugs is finally working and for the first time in ca. one year i can reach and strech both hands over head with only a slight discomfort!! am so afraid to enjoy this because i have only been using embrel for 3 weeks, 4 on monday. but oh it is so good. feels like hope of some kind..
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Postby JP » Sun Mar 01, 2009 9:46 am

sorry to hear about your troubles highonlife - sounds really tough!

good to hear things are looking up 8)
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Postby Rochellita » Sun Mar 01, 2009 10:51 am

Nice to hear from you again, it sounds like you've had a rough year. Good luck with the new drugs. Keep us updated?
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Postby emm7 » Sun Mar 01, 2009 9:03 pm

really hope that this new medicine keeps on working for you and helps with the pain.

Have found it heartbreaking reading through this about how much pain ra suffers are in but it's also incredibly uplifting that you still get out of bed in the morning determined to face the day, despite the crippling pain!

This strength of mind and courage is fantastic.
"she was my better half and I was just a dog"
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And some guy's trying to sell me a watch"
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Postby Frostfire » Wed Mar 11, 2009 1:51 pm

summer wrote:Are you doing OK on the Humara?The MTX works for me, but on two occaisons I have had to come off it, due to ill effects on my liver,

Yes, I'm doing great on the Humira :) - but I take it along with MTX, but I take that in pill form. But that does remind me, I have to get my blood work done for that, I'm a little overdue . . .

summer wrote:at the moment I am off it due to a rash which is thought to be caused by the MTX, Ive been off it two weeks now, and already Im in pain, and stiffening up, all a real downer, I also have immense fatigue , do you get this ?,

Yikes, hope you are able to start your treatment again soon. And yes! When I have flare-ups, I also have to fight the incredible fatigue, its SO bad! Haven't had to fight it since last summer which was really hard so I'm grateful for that.

summer wrote:so shaming, and fills me with guilt, but mainly anger at the whole disease.I still find it hard to come to terms with the diagnosis.

How long ago were you diagnosed? Don't feel quilt or shame, and don't compare yourself to healthy people! We have to take our ups and our downs so don't let them get to you :) .

highonlife wrote:after having been severely depressed, extremly affected by the ra (to the point of not beeing able to wash my own hair most days/weeks, not being able to live alone) after a year of testing drugs of different kinds and living at my moms house, finally it may seem that i can use and have effect of embrel.. so the coctail of drugs is finally working and for the first time in ca. one year i can reach and strech both hands over head with only a slight discomfort!! am so afraid to enjoy this because i have only been using embrel for 3 weeks, 4 on monday. but oh it is so good. feels like hope of some kind..

Hello Highonlife! Its so good to see you back here :D

I'm so sorry about the hard year, but I'm SO glad to hear embrel is working for you to some degree! When I was first diagnosed, I was struggling to wash my hair because my shoulders and hands were so bad. Cheer up though, sounds like you are on a decent regiment now and things should be getting better. Hope to hear from you more here!
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Postby highonlife » Wed Mar 11, 2009 4:19 pm

:D Thanks for so the uplifting messages, and yes, I hope to become more active here as well as in training. Waiting for my docs appointment on the 18th. Am so out of shape that I need the docs ok, just to be on the safe side.
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RA

Postby summer » Sun Mar 15, 2009 10:37 am

Good to hear some of us are getting on top of this horrible disease,my status at the moment, is pretty low, I had a reaction to the Mtx, and had to come off it, its affected my lungs, and am now on a ventolin inhaler , probably one of the reasons I was getting so many chest infections.Only using analgesia at the moment, for severe pain, I seem to be in a constant flare, it affects my wrists, fingers, actual whole of hand, elbows and shoulders, also have had my knees sieze up for a while !Due for a discussion with Docs re where we go from here, also hopefully getting a steroid intramuscular inj, just to ease my pain.Needless to say I am fed up, depressed as hell , and want to get on with my life.Im still training when I can, have at last accepted I must modify what I do, go for the good days, and get angry with the bad.One thing I dont do any more, is cry about it, and hide away in a miserable heap, I make myself get through the pain somehow.Sorry about the depressing post, but , hopefully soon I will have better news.Hope you all carry on doing well, its so scarey , when I feel good, Im almost afraid to enjoy it, as it may not last, do others get like this.On an upbeat note, in about 6 weeks I am due to do a 53mile stroll, and somehow I intend to be there!!Whether I finish or not in the alloted time is not important, but to cross the start line in reasonable shape is important to me, we shall see.Triciaxxxxx
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Re: RA

Postby Frostfire » Wed Mar 18, 2009 10:41 pm

Sorry to hear you are not doing well! There are some good meds out there, hopefully you'll find some new ones that work for you :)

summer wrote:when I feel good, Im almost afraid to enjoy it, as it may not last, do others get like this.

Yes! When I first started on the Humira, I was so cautious even though I was feeling better, but it has lasted so long! :) Still flare-ups, but they are so much smaller and shorter :)
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Postby highonlife » Thu Mar 26, 2009 7:24 pm

all good news from the north :D :D my meds are working, my heart is not affected by my ra and i have been cleared for exercice, at least non impact cardio and gentle yoga.. :D :D having spent the last year in the fetal(?) position due to pains and swollen joints and depression my fitnesslevel is an all time low... so my have yet to manage more than 6,5 mins on the elliptical in my basement but i go at it almost every day and have improved from my start at four minutes.. :D my long-time goal is 30 mins six days a week, but first have set goal of 10 mins sometimes before easter is over.. starting asanas at the end of easter..
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Postby summer » Fri Mar 27, 2009 12:16 am

Great news Highonlife, keep working on that fitness, it will return Im sure.I really hope this is a turning point for you, and that it continues, always encouraging to get positive stories like yours.Tricia
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working and living with ra

Postby highonlife » Fri Mar 27, 2009 11:42 am

:?: Just wondering..
..how is it with work for you? do you manage to work fulltime or is part-time enough of a challenge? How do you cope with the fatigue and working, how does this change over time for you? Do you get less exhaused the more you do it? or is the fatigue constant?
Do you have a supportive boss and co-workers?
I am asking all this because i really want to find the perfect balance between work and play :D find the amount of work i can do even in my bad periods.. i really want to find a balance and flow to my life, never want to feel like i did this winter with depression,pain and the worst.. a sense of no value and meaning.. :?
I am considering 30-40 % work plus a social life.. so far my experiece is that when i do more than 50-60 % over longer time my social life slowly disappear.
:D I want both a job and a social life.. :D
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Postby Frostfire » Fri May 29, 2009 3:35 pm

Okay, have I ever mentioned I use this thread to dump all my anger and frustration onto?

So, I haven't been able to get my Humira refilled and I'm now 3 days past when I should have dosed up. My jaw hurts (one side is swollen and I can't shut it all they way), my leg hurts, my hands are fading fast :( . I took an extra NSAID before bed last night, and even though I took it with food, I ended up vomiting in my sleep (!). Not a fun way to wake-up at 2 a.m. - choking on your own puke :cry: And NSAIDS don't even touch my RA.

And why can't I get my Humira? Because the foundation that I get it thru never told me my application expired and I needed to fax in a new one! Gagh! If I'd known, I would've taken care of it before moving to Houston for the summer! Now I'm jumping thru hoopes trying to get that done while at my new job.

Not fun, but with hope I think it will be taken care of soon and I'll be able to get back on the only med that has made a difference for me.
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Postby highonlife » Fri May 29, 2009 6:50 pm

Hope you get your humira soon!! The new biomeds are so incredible and give so much hope for a "normal" life. I totally get your frustration. Dump it on this thread, know that you are not alone and hopefully it resolves itself nicely (and fast)! :D
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Postby emm7 » Mon Jun 01, 2009 5:37 pm

really sad to hear this, Frostfire, hope you get more medicine asap!
"she was my better half and I was just a dog"
"I don't have a drinking problem except when I can't get a drink"
"No, the moon ain't romantic, it's intimidating as hell
And some guy's trying to sell me a watch"
-- Tom Waits Bad Liver and a Broken Heart
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