Desperate need of advice and help

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cutlass
New Member


Date Joined Oct 2007
Total Posts : 3
   Posted 5/15/2008 11:43 AM (GMT -7)   
Hi everyone..its always 911..I have not been on in a really long time, I have been very sick, and then I fell down my stairs and broke my foot and then 2 weeks after the 6 weeks on the crutches and the boot I fell down again and broke the other foot. I dont have much support so I was still driving and having to take care of myself and it has been real hard, no one in my family wants to lend a hand and I have no idea what happened to my friends.

If you dont mind I am crying so hard right now can I please just let this out? If you dont want to read it thats cool, some people dont want to be brought down, they have enough in their own lives. I get that and I am cool with it. Just skip over me. But I have to be one of the lonliest, depressed people out there.

I do what all my doctors advise me to do. Like go to a pain management doctor who I thought at first was going to work out real good until I met him face to face. Then I went back to him a couple times and then that was it. I was seeing him for taking the pain killer Dilaudid. I know I know.... Save your fingertips..I cant get off it either I know all about it. My Crohns doctor didnt know what else to give me, honestly I beleive that, I have been sick for 24 years now with Crohns Disease and sometimes you just run out of options or you start all over again.

Well I thought I was going to be okay just this past week after seeing him again cause we decided to try a low dose of Fentanyl and then start to slowly come down off the dilaudid. (The pain management doctor I was seeing told me I needed to see an addictologist, and I told him he needed to see an additionologist, He was reporting me for taking to much dilaudid when he was adding up 4 mg pills when I was only taking 2 mg pills.) Yes I have such faith in the system right now. I'm sorry. Anyway the 50 mg of Fentanyl along with the Dilaudid brought me down from taking 2 in the am 2 in the afternoon 2 at dinner time and 2 at bedtime, it brought me down to taking the morning the dinner time and the late late bedtime, cause I noticed I don't go to bed till late and that brings on break through pain. So in one week I went from 8 pills a day to 6 pills a day. To some that may not seem like a lot but to me it was a start. So then he raised then fentanyl to 100 mg instead of 50 to see if I could come down more, I was doing alright but starting to feel a bit nauseous, but he upped it to 200 mg anyway, I thought that was a little dangerous along with the dilaudid but he said I should be taking less dilaudid since I am taking more fentanyl, not true entirely if you cant handle the big dose of fentanyl and I couldnt, so I called him and I had no more 50 mg patches left.

So he sent me to a couple of other kinds of doctors to rule out some other things, RA, Lupus, another pain specialist, a blood doctor cause of too much bruising, etc...

Well heres my question for ya'll... Who can give me the best info out there on Humira? This RA doctor I went to today wants to start me on that, the kind you inject yourself cause I have no more veins left, gone and I mean gone. What I did read in the info she gave me is that it can cause TB, lymphoma, infections, reduces your immune system way down, has dye in it which I am allergic to any dye that they try to use for an MRI, Cat Scan, or anything that requires IVP dye to be used. And of course there was more but I'm sure you know more than I do on some of this.

Plus I (sorry guys close your eyes, this is for the ladies) they want me to get a double mammogram. Now I know that is good but why have I been asking for that for the longest time when I was smaller but now that I am a 38DDD they want to try and test these bad dogs? They are going to be barking alright. And I am going to be crying.

My daughter and I have just moved into a condo which she seems like she never wants to be with me, she is always gone, I miss her so much, its been her and i for so long and now I am lost. I know that is selfish but now she is being so mean and saying such terrible hurtful mean things. Its sad. I can barely make the bills, we receive no help except my disability which took three years to get. I ask my family and they say no we dont have it. You woudnt believe me if I told you how much my sister makes. And she cant help at all she says. Oh boy, I better stop.

But PLEASE ANY INFO ON THIS HUMIRA positive or negative i need to have all my facts before I make a decision like that right? My gut is screaming nooooooooooo, cause I know how sensitive I am to all medicine. I do hope some of you are doing better than I am, and from the last that I can remember reading.

Please give a hand out so I can grab onto it, we all need to do that you know. Set up a time and a day and all be on at the same time and close our eyes and silently imagine we are all holding hands. Keeping each other together, new Crohnies, as well as the Veteran Crohnies........:)

God Bless


_________________________
Post edited only to make paragraphs for easier reading :)

Post Edited By Moderator (AlwaysRosie) : 5/15/2008 2:10:48 PM (GMT-6)


crohnie1985
Regular Member


Date Joined Nov 2007
Total Posts : 140
   Posted 5/15/2008 12:32 PM (GMT -7)   
Hello,
Most here know your pain as we all have been there, at one level or another. I just started taking Humira about 1 week ago, I was taking Remicaid, but it seemed to stop working for me. I did the first set of injections myself and yes I am not very good with needles, but it was not that bad, I used the pen over the seringe. The first few days I did have alot of nausia and headaches, but I also did with the Remicaid, so I am to have the next dose of Humira on the 19th, hope it goes well. As to your pain, I am also seeing a pain management Dr. and it's time to try something else there too. I go there on the 20th. So I have alot going on like you, my advice is to explore all options. And yes no one is helping me and at times I feel so alone with being disabled , not sure what to do about it, just have to hang in there.

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 5/15/2008 1:12 PM (GMT -7)   
((((((((((( Cutalss )))))))))))

I tweaked your post just a bit to add some spaces for paragraphs so your post might be a bit easier to read. Thought you might get more responses that way. I hope that's ok.

Sending you a big hug and a prayer that you will learn enough about Humara to make a good decision. I'm sorry you are having so much trouble with your health and finances. Rough time for sure.

I'm sorry I don't know anything about Humara . . . but wanted to send a bit of encouragement.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


cutlass
New Member


Date Joined Oct 2007
Total Posts : 3
   Posted 5/15/2008 2:44 PM (GMT -7)   
Thanks for the paragraphs "tweaking"..Looks better, sometimes I just get on a role and I cant shush up....Its okay if some of you dont know too much about the Humira, I dont either, but if later someone comes across this post that might have an answer right..... Thank you so much for just reading it.....I give you credit for that.....:)

yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 5/15/2008 2:52 PM (GMT -7)   
one thing, I am a DD and mamograms are a snap if you are big. it is just there and they take a picture...no worries! in fact, the whole process makes me laugh.
I used humira a few times, it didn't help, but the process was easy with no side effects or pain.
take care, yp
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


Mellie
Regular Member


Date Joined Mar 2008
Total Posts : 110
   Posted 5/16/2008 4:21 PM (GMT -7)   
I have been on Humira and the only problem I have had is trouble sleeping...cant say the Humira did it, because work,life, etc has been crazy. Hang in there...some people don't appreciate their health..and don't know how to deal with health issues like ours. (((hugs)))
Diagnosed with Crohns/Colitis in 2004. Currently taking Azulfidine 500 mg/3 x 3 day, Synthroid. Have had joint complications such as pyroderma gangrenosum in ankles as complication of IBD. Started Humira March 2007


Mellie
Regular Member


Date Joined Mar 2008
Total Posts : 110
   Posted 5/16/2008 4:21 PM (GMT -7)   
I have been on Humira and the only problem I have had is trouble sleeping...cant say the Humira did it, because work,life, etc has been crazy. Hang in there...some people don't appreciate their health..and don't know how to deal with health issues like ours. (((hugs)))
Diagnosed with Crohns/Colitis in 2004. Currently taking Azulfidine 500 mg/3 x 3 day, Synthroid. Have had joint complications such as pyroderma gangrenosum in ankles as complication of IBD. Started Humira March 2007


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 5/16/2008 4:33 PM (GMT -7)   
Hi there! I just want to send you a cyber hug and hope that things start looking up soon.

Ne Ne
Regular Member


Date Joined Apr 2008
Total Posts : 243
   Posted 5/16/2008 4:59 PM (GMT -7)   
I've been on humira sense Feb I get a few side effects but nothing to major. You have to have a TB time test first. And I hope you have good insurance cause it really cost. But you can look at old posts and find out a lot. I feel for you because I have a daughter that sounds like yours, its hard to deal I know. And I really understand about the doctor problems, I'm changing doctors, we don't see eye to eye anymore. But GOD BLESS, BIG HUG, and never worry about getting things off your chest. One or more of us our standing in your shoes, or have at one time...Take care



Ne Ne
49 Female
Dx June 07 crohn's take asacol 2x3 a day , entcort 1 a day ,lotrel for HBP , omeprezole for stomach , potassium , one a day crohn's & colitis therapy , calcium & Vit D , lomotil for lose stools , tramadol for pain , started humira in Feb 08


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 5/16/2008 5:10 PM (GMT -7)   
I am sorry you are going through all of this. A good rhuematologigist is who I would get my info from-that and people here. I hope the humira helps-sometimes they can give premeds to prevent allergic reactions perhaps benedryl and steroids so you can have the benefits of the meds even if you are sensitive-but ask your prescriber about that.
Sj
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