Medical Update
#266942 - 06/01/06 10:02 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Well, I just got back, again, from the eye specialist. My eyes have been flaring really bad for over a week this time around but its been on going since last August. The eye specialist actually called the rheumy and told the rheumy that he MUST do something more to get the RA under control or I will lose my vision. I've been having to use steroid eye drops and they are causing my cornea's to "meltdown." Corneal meltdown was the exact words the eye specialist said. Ducky-no wonder they are SO red and hurt like hell!
The eye doc gave me yet another pack of oral steroids called a medopack. Its a very high dose that you taper off over 6 days. I was supposed to see the rheumy this coming Monday but I need to call and reschedule that appt for 2 weeks out. By then, the steroids will have worn off and if the Enbrel isn't kicking in, then he will start me on Imuran in addition to everything else I'm on. The eye doc was appaled at the amount of visual swelling in my body and got right after the rheumy! I guess it takes one doc to kick another in the arse! 
So, I should have a few good days here from the steroids. Today started my 5th week of treatment with the Enbrel and I've been on placquenil since January, not to mention all the other stuff I take for the Fibro and IBS and Insomnia! The eye doc also listened to my breathing and said I'm only breathing at about 50% because of the costochondritis, which is swelling in the cartilage in my chest caused from the RA.
Will is ordering me a mini, light touch key board and an upright mouse today. I've got to be able to stay active with the outside world, honestly, I need the support to get through this. My twins would be due on June 18th, Fathers Day and thats also weighing heavily on me right now. All this is starting to really wear on Will, I've noticed he is drinking a lot more, not sleeping well and having tummy aches. Please send some love and hugs.
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Taking it one day at a time.....
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Re: Hugs
#266948 - 06/01/06 10:08 AM
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Honey mix
Reged: 11/16/05
Posts: 285
Loc: USA wish it was England
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{{{{{{HUGS}}}}}}}} I hope you get better soon I have been having troubles with my eyes hurting to I think its allergies though everytime I go near a cotten tree my eyes start to ache 
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Puppies Are Cute But I'm Cuter
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Honey, I am soooo wishing that this treatment will work! This must be so hard! Please know I am praying and thinking of you! You hang in there and know that we are here for you!! Gentle hugs my friend!
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God is Faithful!
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Hi Michele,
I'm glad that the other doctor is kicking your rheumy to get in gear with sorting out your RA meds. It isn't right that you're suffering so much! As far as Imuran goes I'm currently taking 150mg of it daily to treat ulcerative colitis and it's working fabulously. It takes up to 3 months to see the full effects but I was a quick responder to it and noticed improvement in 2 wks. My wbcs are just below the lowest normal which is where the doctor wants it to be. Hopefully an immune suppressant will help your RA.
Sending you positive thoughts.
Jenn
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Thanks Jenn, the placquenil is an immunesupprosent and the Enbrel is a TNF blocker, which is also supposed to suppress the immune system. I guess mines just really on over active right now. Maybe one more drug will make the difference. I see that the Imuran has GI upset listed as a side effect though and my IBS is already all wacky!
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Taking it one day at a time.....
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Taking it one day at a time.....
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Re: Hugs
#266973 - 06/01/06 11:29 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Thanks Honey Mix. Pantanol is a great prescription allergy eye drop if your eyes don't clear up for you!
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Taking it one day at a time.....
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Have a blessed day! Rachel
Formerly poochibelly...
I have IBS but it doesn't have me!
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coming your way...michelle you're so brave...I cant believe how aweful that must be to have your eyes and body that swollen....it must be so uncomfortable not to mention painful...and the fact that you can still come online and offer us support is amazing. I cant really say anything else but look after yourself...get all the rest that you need and sending you all the hugs I can possibly give....
(((((((((((((HUGS)))))))))))))))
GET BETTER SOON!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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 Natalie
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Hi Michele,
I don't think Imuran will cause any problems with your IBS. Imuran is really great at putting people like myself with UC and others who have Chrohn's disease into remission.
I think you'll see a postive change with it. I know that it has a very long list of scary side effects and that did make me hesitant to take it. That being said my doctor explained it to me that those do not usually happen for people taking low doses (like people with CD and UC) it's mainly for people using such high doses to prevent organ transplant rejection. Well that reassured me a bit and I've been taking it since Dec. 2004 and have been in remission pretty much since starting it. I haven't had any adverse GI effects as a result of taking it.
Maybe talk to your doctor about it's success rate with treating RA.
Jenn
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My heart just aches for you Michele.... I sure hope they get things under contol for your eyes.... I understand this is another hard time for you and Will and I'm sending lots of hugs and positive thoughts your way.
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www.facebook.com/shell.marr
www.myspace.com/shellmarr
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Michele,
I am so sorry that you are going through all of this. You and Will both have a lot going on right now. I am hoping and praying that this new medication will help you with the swelling and pain.
I will continue to keep you in my thoughts and prayers.
Lots of love and hugs,
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Janey
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Taking it one day at a time.....
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I see my current rheumy now on the 22nd and a new rheumy for a 2nd opinion on the 27th. Hopefully, between the two of them, they will be able to get me in remission!
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Taking it one day at a time.....
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Taking it one day at a time.....
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Thanks Natalie! Coming here is a distraction from the pain, so its therapeutic for me! 
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Taking it one day at a time.....
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Taking it one day at a time.....
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Aww Michele, so sorry to hear about your problems. You're being a real trooper, you know that?
I have had constochrondritis many times and I know how much it sucks, and I've had problems with my vision and in my opinion there isn't much that is worse or scarier than that.
Hang in there, it sounds like this doctor is going to kick your other doctor into gear and I'll hope that the new meds help you to feel better really soon
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Michelle
#267033 - 06/01/06 06:47 PM
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Toady
Reged: 04/06/06
Posts: 1299
Loc: A small city, Northwestern Ontario, Canada
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I'm sorry you're having such an aweful time!! It sounds dreadful. I've been going through the testing for rhumy over the last 2 years, and thankfully everything is alright. They still think I have some auto-immune problems, which causes ridiculuos swelling in my joints, especially hands and feet.
Good luck, I hope the steroids help your eyes. It's aweful when your eyes are bad, (and I know from experience) - you can't do without them!
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Cassandra
Live like there's no tomorrow. Love like you've never loved before.
IBS A 20+ years, Chronic Migraines, Chiari Malformation (decompressed June 22, 2010), Brachial Neuritis, and ??? the list just keeps growing, but I'm still shiny side up!
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*hugs*
#267038 - 06/01/06 07:21 PM
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Sorry to hear things aren't going well. At least your eye doc is getting the other one in line for you. Hopefully the meds will kick in soon for you. It is the darn waiting that is miserable with these medications. I will keep you in my thoughts and prayers.
Michelle
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Michelle honey! Every day you show me how a strong person makes it through every day, you may not feel strong, but girl, you really are. I will definitely be thinking about you and Will, I am sure you will be experiencing lots of pain. So sorry for that. Men are so effected, sometimes we get worried for Mom, but Dad is just as important. He needs just as much love and care as you do.
I pray the medications go to work for you soon. You are remarkable and I think so much of you, keep on kickin; honey!
I will be thinking of you daily! You are a special person to me!!
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Phew
#267051 - 06/01/06 08:16 PM
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That doesn't sound fun, Michele. I'm just happy to hear that your eye doctor is such an advocate for you!
I hope all these medical plans are the fix!
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Christine
Those who can do; those who want it done better teach.
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Michele
#267062 - 06/01/06 08:40 PM
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_Willow
Reged: 04/06/05
Posts: 2090
Loc: Canada.
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Wow, honey, the amount of stuff you have seen in your life amazes me, and still you are strong and sweet and positive. my love and prayers go out to you.
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Keep on keepin' on...
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*HUG*
#267119 - 06/02/06 04:47 AM
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khyricat
Reged: 08/05/04
Posts: 3612
Loc: Michigan
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Michelle.. just know we are here for you and if there is anything I can do.. let me know.. I'll be out of town from June 30th to Aug 14th for the most part (in and out but every weekend away from home) but other then that if I can help, I'll be happy to do what I can.. what a mess!!! then again the eye doc wasn't too happy with me the last visit either and didn't have great news for me too...
*HUG*
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Dietetics Student (anticipating RD exam in Aug 2010)
IBS - A
Dairy Allergic
Fructose and MSG intollerant
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Michelle,
You must be going through all of this for a reason unknown to us. Maybe it is to prove how strong you really are.
No matter what, just remember you have a lot of people here who care about you and think of you often.
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Carol
nós somos o que nós somos e o descanso é merda
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Take care,
Michelle
...the greatest of these is LOVE. (I Cor 13)
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Holy Cow, am I hyper!!!!!!! I took like 120mg of steroids yesterday and a boat load this am and wow! I also took a huge handful of pills last night so I could get some much needed sleep and this morning I got out of bed without any help! I did the dishes and made breakfast and took a shower!!!!! Now I'm at work and getting caught up! Its incredible! My hands are still swollen and sore but not as bad, I still move like a 90 year old women but I'm MOVING!!!
Oh, and I had a guy hit on me at work! I had to order something for this pretty cute guy so asked for his number to call him when it was in and he said "only if you give me yours!"  I told him thanks but I didn't think my hubby would appreciate it and he apologized and said he noticed I wasn't wearing a ring. I didn't want to go into the whole my hands are so swollen I haven't been able to wear a ring in a year so I just smiled.
I'm going to go shopping this weekend for a new dress for my friends wedding at the end of the month. I figure I'd better do it now while I'm STEROID WOMAN because I know next week when I go off them, it'll be just as bad but thats next week and right now, I'm going to enjoy being part of the human race! 
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Taking it one day at a time.....
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I am sorry to hear about your eyes. I hope that other doc gave the other one a good kick to make sure they stay on top of things. I am glad you are feeling better today and i hope we can get together sometime soon!!
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Re:
#267190 - 06/02/06 10:03 AM
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pinkprincess
Reged: 08/17/05
Posts: 415
Loc: Manchester, u.k
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so, so, so sorry to hear about your eyes. You are such a strong, amazing woman (think we should call you wonderwoman)even after everything you have been through, you are an inspiration. but so glad the dr. kicked your other dr`s butt and happy for you that the steroids are helping ...lets hope they do the trick, figers crossed darling and sending you lots of hugs. Wish I could do, or say something more to help!
BIG HUGS
Jo xxxx  xxxx
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http://www.myspace.com/jo_elsmere
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Oh, I'm sorry to hear things are going badly. Love and hugs and I'll be wishing for some good to come your way. Hang in there.
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If you're not dead, you've still got time.
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