Questions, Questions.... | Arthritis Information

Hello, it's me once again haha

Being new to this, as you can all tell, I have just about a million questions running through my head.....

So I thought maybe I'd start a topic with all of my questions lol

1) Right now, my RA isn't bad at all. It really doesn't even bother me. And the flare ups I do get are very sudden, but very short. I've only had 3 real painful flare ups, and those were over a month ago. So if I start meds now, do you think there's a chance that I can keep my RA like this? I feel like if I jump on meds now, I can really prevent this disease from getting me bad at all. Or is it normal for it to start out like this? Did all of your's start out like this? I feel so fine and healthy right now.... no morning stiffness, no feeling sick, no fatigue, barely any flare ups.... is this normal? I'm scared to think that it could get way worse any day now.

2) I keep on seeing a statistic that says that 50% of people with RA aren't able to work full-time after 10 years of being diagnosed. What do you all think of this stat? It really scares me because I'm currently in college working my butt off to become a CPA, and it scares me to think that I'll potentially only be a CPA for 8 years or something like that. Why do so many people have to stop working? Do you think it's possible that I'll work full-time in my life just as much as other people my age without RA? Or is it inevitable that eventually I just won't be able to?

3) I keep on thinking about how bad it is that I got diagnosed so young. But then part of me wonders if this is a good thing? Is it maybe good that I caught is so quickly and can begin treating it at a young age? Do you think that a lot of people who are diagnosed at say 45 or 50 already have had it for a while and just never went to get diagnosed? I'm thinking that the strep I had made it really show up in me, and possibly that was a blessing?

4) Can I still run, or would it be better to find a way to do cardio that's easier on my knees?? Can I still play hockey? Can I still wakeboard?

Ok I know those are long questions... but I don't know who else to really turn to other than people who are actually going through this as well. Thank you so much for any info you have. And I really, really hope I'm not annoying you all with all of my questions and worries. I seem to be handling this fairly well, but I guess even more so in the morning, I start to panic a bit. I want so bad for this to just go away, and I really need to accept that it's not going to.

Thank you everyone!
Hi there

First of all let me say welcome to the board and to a disease thats not the same for everyone. There are no rules for RA but heres my answers to how it has gone for me over the years.

1.I started out with a bad flare in my shins and knees and was put onto arthrotec and mtx, this helped me but i had stomach issues with mtx and came off of it. The flare lasted about 3 months so I stopped taking meds and carried on with my life. Nothing else much happened and this went on for a long time.

2. I dont work anymore due to my RA but as I was 32 when I was diagnosed and I didnt take my meds as I shoukd have did contribute to it. A lot of people do still work and quite happily do so.

3. Being diagnosed so young can be a blessing as the doctors can aggresively treat you so the amount of damage is minimal and this help as you get older.

4. Do the amount of exercise you feel comfortable with and speak to your doctor about sports etc. High impact sports can have a lot of trauma to your joints.

5.It is a scary disease and as I said there are no rules for it but become well informed, keep your doctor up to date with your progress and take your meds. Also dont become scared of everything you read on here as there are other contributing factors to the decline in others health due to other illnesses in conjunction with their RA. I have a low intolerance to meds so I cant take Humira, enbrel etc but that doeant mean they wont work for anyone else.

Ask lots of questions as there is always someone here to give you the answers.

Take care and good luck

Lisa

Hi Harb -

1) you are mild - keep it that way as long as possible.

2) I had to stop working 3 months after diagnosis - but I'm going back soon as hubby says I'm slacking (I AM slacking ;-) Many people work their entire lives with this.

3) Aggressive treatment means 'do something' - it doesn't mean 'do nothing and hope for the best'. Most doctors will start you out with a first line DMARD with your symptoms and will probably not push the biologics as you are not 'resistant'.

4) Do the sports you like while you can! What's wakeboarding? I'm going to learn surfing!

Hugs,

Pip

P.S. If you and your docs know strep started this...don't lose your 'gut feeling' on treating this. I didn't either and have never regretted it.

Pip I was hoping to hear from you!

Wakeboarding is kind of like water skiing. You are being pulled by a boat and instead of using skis, you use something that looks kind of like a snowboard. It's really fun!! But the falls can be pretty harsh sometimes, esp. faceplants... those really hurt the neck. So I'm wondering if I may have to give that up?

I wanted to ask you...
Do you still think I'm palindromic? From everything I've been reading, I really feel like I am. But how do I know for sure? And do many docs recognize it or do they just call it RA? Would treatment be any different? I guess my main question is... how do I know if I'm palindromic?? What are some key differences?
Hi there. Lisa said it right that this disease is different for everyone, but here's what I can offer...

1. Mine didn't start like that. My RA was like one continuous flare from the time it started until now, as I am still trying to find the right treatment. But there's no reason to say yours will be the same. It could stay as it is now, or it could change, either for better or worse.

2. I think that stat was always one of the scariest for me. I have been on temporary disability since November, and increasingly it looks like it will be a long time before I am able to find an effective treatment and go back. I have had RA for less than two years, but I also have other illnesses complicating things (fibromyalgia and degenerative disc disease). I had to stop working due to the pain, difficulty performing parts of my job, and my unreliability....one day I'd be alright, then the next there was no way I could come to work. I do not think this happens for everyone. I DO think everyone who has RA should prepare in any way they can. For you, I would suggest that being a CPA is an excellent route because even if someday you were unable to do regular full-time work, you would still have the skills to do some bookkeeping or taxes from home part-time. You might also want to look at financial planning as something that you could also do at home on your own terms if needed. It doesn't hurt to have a contingency plan, as long as you don't become obsessed with it.

3. Early diagnosis is always a blessing, IMHO. The sooner they can start treating the disease, the less likely it will progress.

4. I really can't advise on exercise except to say try to stay active and if you feel like you've overdone it, rest up and start again more slowly.

And don't be worried about asking questions, that's what this place is here for!

OK, I'm saying...don't give up anything you don't have to...these diseases are getting too much of our lives as it is. If you can handle it...do it! You will know if you can't handle it anymore, it's that simple. If you start flaring after it...it's got to go. You're young and should enjoy as much life as possible any way you want. Hell, us geezers should do the same thing. Make a list '100 things I have to do before I Die' and start checking it off. Surfing has been on my list - and I'm thinking of adding that wakeboarding! LOL

http://eflorence.wordpress.com/2007/01/03/%E2%80%9Csliding-homewoo-hoo-what-a-ride%E2%80%9D/

If you think you're Palindromic - you're Palindromic. It's rare so many rheumies have not had a case of it. Bring research, make them 'prove' you're not. I can't prove this...but I'm thinking a 'diagnosis' of Palindromic on your charts will look a lot better to insurance companies than regular RA in that up to 50% of us remit. If you do get a long term (5 year or more) remission it's going to be a lot better in modifying your insurance-ability towards 'history of PRA' than 'history of RA'. We have insurance peeps on this board so they're going to correct this if I'm wrong. But this is what I'm working towards - 'history of' for when I finally get remission.

Major differences are asymetrical (single joints) and large joints at first. And a pain level that's off the charts. As the disease progresses it moves to smaller joints and both sides. On AP, I 'reversed' in that I went from double joints back to single joints. Yeah!

No, the treatment would be the same for RA and PRA - some sort of DMARD.

The question you should have is 'what started this cascade?' and 'how do I reverse it'? Symptom or cause? Actually, that's what I think we should ALL do, but that's just me. LOL

Pip

I work at least 40 hours a week and have had RA for around 14 years. It's gone through difference stages and some years have been better than the others; but don't plan on not working after 10 years. A great many people with RA live normal lives.....at least it appears that way from the outside. Life doesn't really feel "normal" to us though; but we've learned to redefine our own normal I think.

If you don't have any symptoms or pain how is it that you found out you had RA? Sadly it often takes so many with horrible symptoms years to get a dx. You're lucky.

I think a treatment with one of the older, weaker DMARDS would be a good plan to follow just to insure it doesn't progress too quickly. What does your doctor advise? I started out on weaker medications with great results and it bought me many years before having to take stronger medications. My doctors feel like that's a major reason I'm not living with more damage than I could be had I not had treatment.

Welcome to AI. Glad you're here.

Hab...I agree with Pip about doing what you love. I've had to alter my workouts, but I still am able to do it as hard or harder than I ever did. RA (or PRA) isn't a sentence to a wheelchair. It isn't a removal of all the fun in your life. You'll come to see this as you find out more about it.

I don't think your age matters as much as at what point in the disease you catch it. Some people my age (44) have had it for years before dx, but others like me only just got it recently and started treatment right away. I might end up with less damage than they do even though I was older when it hit me. It sounds like you caught it pretty early to which is good for you. And that will have a huge impact on your future, with things like how long you can work and what activities you can take part in. As a rule (although their are exceptions I think) the earlier the treatment, the better the prognosis.Hi! Good to see you back. It's totally normal to have many, many questions and you came to the right place. I'll edit my comments because you've already gotten good feedback:

1) We all start out differently but it sounds like you're in really good shape overall, catching it so early and taking action. You get major points for that.

2) I think that 50% statistic is old news. With the new drugs, the outlook is much more positive. Anyway, with the career path you've chosen, you'll be fine either way. Still, I'd be very surprised if you end up disabled, so don't plan on any early retirement. I think you have many, many working years ahead of you, like it or not.

3) There's an old Chinese saying that goes (roughly) "No illness--short life, one illness-- long life." My interpretation of that is, many people take their health for granted and don't take care of themselves and perhaps die younger than they need to. When a person is DX with an illness, it often makes them take better care of themselves, pay more attention to health details, and end up healthier overall in the long run. I think there's something to that.

4) I think your body will tell you what you can and cannot do, but it wouldn't hurt to talk to a physical therapist for advice too.

And finally, you are not annoying us. We've all been where you are and many of us, including myself, continue to ask questions. So, don't hesitate. It keeps our chops sharp. LOL

1) Everybody's different.

2) Everybody's different.

3) Everybody's different.

4) Everybody's different.

That just so can't be stressed enough. And at the same time, yes you find us here in a support group where so much about us is the same. But we have to keep in mind that we are all individual.

Your RA is mild at the moment, DO A DANCE!! Go go-karting, go running, use a pogo stick whatever the blazes you want!!! LOL You'll know when you've had enough, your body will tell you. It's good at that. :)

As far as the 50% statistic, like Jesse said that's old news baby! And again, it's not true all the time! That's why it was only 50%, and not 100% ;-)

Don't forget, you can NEVER ask too many questions!! There is never enough information to learn no matter WHAT stage of the disease you're at. The fact of the matter is that you have it now, and you'll have it always. So the best weapon you can possibly arm yourself with, is information and knowledge.

I'm rambling, I'll go away now. :-D

arriscolwell2008-02-27 16:32:51LOL Katie - great response!

Pipagain, ditto to all above. Good luck ~~ Cathy
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