World turned upside down | Arthritis Information

 

Hi, everyone--I am new to the forum (I lurked for awhile getting up my courage to post)  I was diagnosed just after Christmas with RA and feel that my world has been turned upside down. 

 I don't know what to expect from day to day. I had always been the "healthy one", just going thru life with nothing ever wrong with me. Then about a year or so ago I started to get one respiratory infection after another.  My family doc sent me for a sinus x-ray, which showed something abnormal, so he sent me for a brain mri thinking I might have a brain tumor.  Instead it showed I had been having"mini-strokes" which was a real shocker.  Then found out my cardio CRP was very high. 

Then started having stiffness in my hands in the morning.  My feet also hurt when I first got up, which I blamed on my shoes. Finally went to my doc who did RA test which was positive. He didn't think it was RA though.   He sent me to a Rheumatologist in Houston who repeated the test (RA was negative this time) did x-rays and said that it was definitely RA.  He put me on predisone & MTX which I guess helped some.  Now I am going to start with Embrel.  (I forgot to ask if I do the shot on same day as the MTX? )

Some days I have lots of energy (maybe from the Pred?) and other days I can sleep for 14 hours.  Does anyone else have this?  I don't seem to have any bad side effects from the meds which is good.  But I keep having one respiratory infection after another.  I work doing research with deed records in county courthouses, so I am in public places all the time.  I am constantly washing my hands.  Hope I'll be able to keep on working.  (I'm old enough to retire but need to keep working if I can)

Sorry to ramble on like this--I know my family gets tired of hearing about my illness, so I try to keep from whining about it too much.  Guess I just needed to let it out.  Bottom line is...I'm scared! 

My dad had RA and I remember his knees swelling and he would get them drained.  He died of a heart attack at 46 before the RA got really bad tho.  Then my great-aunt Sue (Sula) had RA all her life and her hands were like claws.  I remember her slicing squash to fry with those crippled fingers.  She had a wonderful attitude though.  And I am sure that she had nothing beyond aspirin to take.   

Thanks for listening & I really enjoy the forum.

Sula

 

 

   

  

Welcome to AI, Sula.

Sorry to hear how RA has affected your life. I hope the Enbrel helps you to have your life back.

Best of Wishes

Well welcome to the board! I'll answer what I can:

Yes, you're scared - we've all been scared. This isn't necessarily a fun disease. Heh

Yep, we all get that weird fatigue deal - down for the count one day, good as gold the next! Chances are that your RA isn't fully under control yet (duh, right?? LoL)

I'm pretty sure you can take the Enbrel on the same day as the MTX - but double check with your doc to be sure.

It REALLY sounds like something bigger is going on with those Resp. infections....I can't imagine what, but that just seems so odd. Like it's a symptom of something ELSE actually going on - maybe if they can figure out what that is, and treat it, you'll stop having the infections.


I know more people will post lots more helpful stuff!!

Again, welcome!!

Hi Sula,

I am so glad you are posting, I just got brave enough too!!!!! It is pretty common to have energy one day and none the next, sometimes it even seems to change from hour to hour. The unpredictability of this disease is a problem. It is so hard to make plans when you don't know how you will feel from one day to the next.

The medications cause your immunity to lower which makes you so much more suseptible to viruses and infections.

The medications are soooo much better then when our older relatives were battling the disease so, we have a much better chance not to have deformities. The surgery has come along and is helpful if necessary.

I do not know much about Mini strokes, I have had a loved one who had a misdiagnosed stroke and was not treated appropriately and things did not go well. There are several people on the board that have more experience and knowledge about them.

Please come hear and talk, I know what you mean about the family getting tired of listening to us!! Ask questions so many people here have been there done that and don't be afraid to share, SOMEONE will find it helpful!!!

It sounds like you have a great doctor. I am so glad you decided to post. It makes me HAPPY, HAPPY!!!

Karen

Dear Sula, thank you for sharing your story. My grandmother had this horrible 'stuff' and I remember the same, claw fingers and she ended up in a 'fetal position' screaming in pain at the slightest touch.

 We are so lucky to have such great helpful drugs. Your treatment of prednisone, mtx and enbril sounds like the best route to take.  I'm on pred., mtx and remicade and doing very well. With these meds you can count on going on with your life. I don't know about the infections that's a problem being around the public! I run as fast as I can when anyone sniffs or sneezes.

good luck with this it can be overcome but it is a lengthy process until thses meds 'work' for us. May be a month before all of it is activated to stop the joint attack against your own body.

good luck, sarah

Welcome to the board.  Yes, we all have good days and then days where all we want to do is sleep the day away.  It is the nature of the beast. 

It is ok to do your Enbrel shot and your MTX on the same day.  I do Humira and MTX the same day. 

It is great you are not experiencing any bad side effects from the meds.  That is awesome and I hope that continues for you.

It is ok to vent and ramble.  That is what the board is here for!  It is also ok to be scared.  That is normal.  Even some of us "old timers" get scared sometimes too.  Look forward to hearing more from you!

Thanks everyone for your comments!

I don't feel quite so alone now. 

Sula

You aren't!!! Another problem is it is a very isolating disease, you can't really tell by looking at us we have it and it isn't something anyone talks about. Everyone hears Arthritis and thinks we can take an Aleve and be great!!! LOL!!!Welcome Sula. I got pneumonia 3 times in 18 months. Was diagnosed with
RA shortly after the third episode. I think at this point I worry more about
not getting sick with something. I feel like I'm being cheated out of a couple
weeks off work a year, lol, j/k. Have not been sick with URI for over a year
and it worries me a bit that my immune system is still in overdrive mode.
This is a disease that you just learn to go with the flow and try to keep your
life at a smooth and steady pace. You are probably learning quickly about
your limits. We hope to hear from you often. Keep us posted.If the respiratory problems continue, then you might want a referral to a pulmonologist. You can develop RA-related problems in your lungs. The other thing is that MTX itself can sometimes, though rare, cause lung problems. You might want to research this a bit and then talk to your Rheumy about this. Certainly don't ignore it.

If you are washing your hands all the time, you are doing about the best thing you can already to avoid infections. If you really think that exposure is part of the problem, I would run that by your doctor as well. But most of the time, I have had very little trouble catching what others get.

Glad you introduced yourself.

Hi Sula, I'm glad you finally got the courage up to post. I'm sorry you have to deal with this awful disease but you came to the right place to get answers and support.

Take care

I know it's not a problem for me to take the mtx with the enbrel because I do it every week. I do this in the evening after supper. I have been doing this since last july.

You might want to ask your doctor becaue its possible that every doctor has his own outlook on it.
Hello Sula and welcome.  So glad you finally posted.  I, too, lurked for a long time before finally posting.  You will find a lot of helpful information and support here.Hi Sula! Your e mail really struck a cord with me. I understand totally about how you don't want to always tell your family how awful you are feeling. I am that way too. My mom has RA too so when I want to vent and have someone UNDERSTANDN me, I call her. Without her, I don't know what I'd do. Last night I had that 'no energy' feeling. I just sat here, staring at the floor while my husband and kids sat here watching tv. Husband keeps asking me if i'm angry at him or something. I hate always saying "it's the RA". I don't know why, probably because I know no one I tell can fix me. Well by 8:15 I finally bagged it and went to bed. It is such a lonely illness. Welcome to this board. I don't post too often but I get a ton of knowledge, help and inspiration from the people here.

Honey

Again, everyone, thanks for all your thoughtful comments and support.  I've been in the best mood all day & finally realized why.

It's funny but when I was seeing the dr. about possible RA and before the diagnosis my mom (who is 90 and in wonderful health for her age) went into complete denial about the possibility of my having RA. I just do not believe it, she kept saying. It's got to be something else.

She has finally reluctantly excepted it but I can tell it makes her uncomfortable.  So I try not to whine too much to her, although she is the person I usually talk to most about everything. 

Thanks for listening, Sula

Glad you're here Sula. The support of people in your same situation will become so valuable to you.

Welcome.

Hi Sula

That's what we're here for - whine all ya like! 
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