Humira: scared to start

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effie
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Date Joined Mar 2005
Total Posts : 344
   Posted 7/18/2005 12:35 PM (GMT -7)   
Dear CaMama,
I am sorry if I interfered with trying to give you suggestions. It is just that when I was working, this was my area of specialty.
It is a real struggle for parents. My son was very determined from a young age. However the coke or tea really did settle him down.
He does not do well with change, never has.
It is much harder to help your own child than it is someone elses.
I will mind my own business.
However if you want me to do more research, I need a bit more information.
First of all do not blame yourself, ever. You are a very kind and loving woman and you have done the best you can.
What are the ages of your children?
How many months apart are they?
How were the pregnancies?
What about delivery, was it normal?
Your daughter is obviously very bright and she may have just learned how to press your buttons. Or you may have something that you can take specific steps to help make things better.
One of the best books I have ever read and suggest for parents is an older book, it is called' "Parenting Isn't for Cowards". I think the author is Dobson, but not sure.

It must be so hard for you to have these concerns. I was fortunate that when my son was little I felt pretty good. I really did not get sick until the accidental death of my first husband.

As I said before tell me to mind my own business, or I will continue to try and find some suggestions for you.

Parenting is a real tough job. I think it is the hardest one in the world.

Please take care. I care a lot about you and am so grateful for all the help you have given me.
Sincerest thoughts,
Judy/Effie

Post Edited (effie) : 7/18/2005 10:05:03 PM (GMT-6)


effie
Regular Member


Date Joined Mar 2005
Total Posts : 344
   Posted 7/18/2005 1:04 PM (GMT -7)   
Dear Erin,
I am so sad to hear that you are being checked for possible cancer. I had no idea. I just can not bear to hear all the pain you are in. I sure hope they can find some answers soon.
It may sound totally paranoid, but I worry that I have bone cancer because of the pain that no one can explain. I get these raised bumps on my legs usually only if I have been on my legs teaching or counselling for like 24 hours straight. It is a rare thing that I get to show them to the doc. Usually on the day of a doc appointment, I have been resting so they do not flare up. However when they do flare up.......oh the pain. The only thing that really helps at all is the chinese medicine, salonpas or tukohan always forget how to spell the second one. Like I have said b4 they come in patches and some nights I will be covered in them.

Please do not worry about me. I will get better. I have an appointment and so does my hubby at the sleep clinic on July 27th. I need to get back to the psychologist. It is just so expensive. I also have the rhuemy appointment on Wednesday. I think I will try and get to somewhere to get the TB test done today or tomorrow and then get ready for the lecture from my rheumatolgoist on Wednesday.

That is the price I will have to pay for the procrastination.

My computer has been acting up so I hope it does not die on me. I would be lost without my HW friends.

Please take care Erin. What are BUN levels? What is the cancer panel? I did not know they could do a blood test for cancer. The bone scan I had was done was about three years ago but I do not recall it being painful, just hard to get off and on the table. But the technologists were very supportive.

How will u get these tests done with your dads latest stunt? Sorry for putting it that way I just find it so cruel on his part.

Thanks for being there. Will keep you in my prayers. Maybe one time we could arrange a chat time for the arthritis group???

Take care
and god bless
Judy/effie

Post Edited (effie) : 7/18/2005 10:09:51 PM (GMT-6)


erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 7/18/2005 5:17 PM (GMT -7)   
hi judy!
thank you for your support & good thoughts. yea, he's thinking some form of another disease which is causing the extreme pain and persistant weight loss. a bone or lymph cancer could be likely...but only more specific testings will show for sure. BUN is blood urea nitrogen and it is a chemical like substance your body makes from the kidneys (trying to explain it the best i can) it can be good @ detecting kidney disease, DM, dehydration, cancer, urinary obstruction and steroid clearance for some examples. it is just a marker so to speak...kinda like how docs count WBC's to see if you have an infection!
yesterday was REALLY tough sad but.....TODAY WAS NOT BAD AT ALL! yeah yeah yeah yeah yeah yeah  
i made it through class well with only marginal pain. am hurting now....but i do not care because i did very well!!!! yeah!!! weeeeeeeeeeeeee! hooray!!!!!!!!!!!!!!!!!!!!!!!
i had to wrap my arms in lidoderm patches and gauze but at least it did help. it felt so GOOD to be able to CONCENTRATE!! for a change. days like this are very encouraging!
i send all my good luck and energy i had today to you and everyone!!
it was nice, just simple things were easy to do....i think the rest yesterday in bed helped a lot plus being heavily medicated for a day too. thanks again for your thoughts.
erin
ps....could those lumps you get on your legs be varicose veins? i know they flare when standing and are extremely painful at times.

straydog
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Date Joined Feb 2003
Total Posts : 15310
   Posted 7/18/2005 10:00 PM (GMT -7)   

Hi Judy,

How are you coming along towards doing your tb test? Hope you  have managed to get that done, thats one monkey less on your back.

I have crohns arthritis and osteo. The pain became so unbearable and debilitating that my pain mgt dr implanted a morphine pump on June 29. I did very well, and I guess I became so confident about things that I over did it and put myself right back where I started. My dr was not happy about this and chewed me out about it. They did increase the medicine some. Things have slowed down somewhat, but I know the pain is still there. Live & learn I guess. But, it did teach me a lesson. LOL.

I see my orthopedic dr tomorrow for another check up on my knees. I had surgery on both last year. Sept he scoped the r-knee and found a tear in the meniscus. Three weeks later he scoped the l-knee and found a partial tear of the ACL, so that was repaired. He cleaned up both knees as much as he could but says there is so much arthritis in them. I am also bone on bone. So, on my 1st post-op visit on l-knee, I am walking up the sidewalk to his office, on crutches and tripped over a crack in the sidewalk, went down on the fresh scoped knee, twisted it and in his words tore it up real good. Was put in a long leg brace and stayed in it till mid June. In addition, after the surgeries, I underwent five injections in each knee of a medicine call Supaartz. Its lubricate and at first my knees stopped popping, but now they are back at it. But, since all of this I have fallen and twisted both knees, bruised the bone in the r-knee. We have already talked knee replacements, but he wanted the pump put in too, to see how it helped with the knees. Also, I was in so much pain he said there was no way he would put me thru the surgeries until we came up with a solution to get the pain under control. My current plan is when the incision on my stomach heals, then I will get in my pool and exercise the knees to see if I can get some movement in them. They stay stiff & swollen. I have to walk with a cane and have to limit my time up on my feet.

I did not know Humira had to be injected in the stomach. The girl I told you about that took it for cd was injecting herself in her leg. WOW, not sure I could do the stomach thing. I have had the shots in the stomach when having surgery to keep from getting blood clots and they are not much fun either.

Need to get to bed and try & sleep since I have the drs appt in the am. Hope you are doing well. Susie



erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 7/19/2005 12:00 PM (GMT -7)   
Susie,
just wondering how you made out with your doc appt.
wishing you well
erin

erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 7/19/2005 12:15 PM (GMT -7)   
redface  hi effie,
did not do so well today. sad severe hip & joint pain. had to leave class & am going on round the clock pain management as of now until tomorrow. don't want this to get out of hand like the other day.
i am pretty sure you become a veteran member after either many many posts or after a few months. weeeeeee donations! yeah i made one too, i figure...heck this helps more sometimes than medicine, than again "what is medicine?" this is medicine one can argue right? :-)
my joey is wonderful & i never have to explain anything to him , he knows how bad this can get and he makes me feel soooo much better when times are bad. his field is neurology, so i am happy to have a man who knows medicine as well. he is in fantastic shape!!!! what a site! love those runners legs! tongue tee hee hee
i am taking 2 graduate studies. one is Death & Dying (focuses on the elderly and terminal patient, and also the adjustments from adulthood into retirement and institutionalization). the other is Culturally Competent Nursing where we explore myths and tradition and religions. for this one i am currently working on a comparitive mythological analyses of "Labyrinth" & "The Neverending Story" by Jim Henson and working the tales into mythology and the symbols relating to life development.
i love Jim Henson! when i travelled europe i went to the Henson Institute in England and i also found a tatto artist to ink me up! i have Falcor (2 of them; one flying & one sleeping) on my back. they are quite big with one taking 8 hours! he's from the neverending story.
if you want effie you can email me personally, i think it is posted on my profile if not its erinkachmar2@hotmail.com.
whew!....my fingers hurt! LOL 
erin

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/19/2005 12:20 PM (GMT -7)   
confused  yikes, i am sooo forgetful! i forgot to mention that the varicose veins are a serious matter! they are so very painful at times, i mean....they have surgery to correct it! that to me is serious. i think of V .V. as basically "the blood is just stagnating there and not returning" i take that seriously. so rest them, elevate them, ice if need be or heat and please....be good to your puppies! tongue
{{{{{{{{{{{{ hugs }}}}}}}}}}}}}}}}}}}
erin
also they do get worse after a long day and standing/sitting in oneplace too long. even walking a bit will ease the discimfort. have you tried antiembolic stockings or ted's? those white tight socks?
:-)   :-) :-) :-) :-) :-) cool cool cool :-) :-) :-)
hot in NJ....101 degrees!!!!!!!!!!!

effie
Regular Member


Date Joined Mar 2005
Total Posts : 344
   Posted 7/21/2005 1:45 AM (GMT -7)   
Dear CaMama,
I thought I had responded to this post but upon checking I can not find my reply.

Your daughter is an angel. She has an angel for a mommy so she would have to be.

All kids go through rough little spells, usually nothing to worry about. Sometimes there bodies and brains are just not growing at the same rate, the brain is growing faster and they get frustrated because they can not physically do all the things there mind tells them they want to do.

On top of that she is going through a lot of change. She is looking forward to going to the big girl's school, but on the same hand is wishing she did not have to leave the security of what she already knows. Brighter kids often have a more difficult time with change because they think about everything in such greater detail.

Did I hear you say you were expecting another child? If so congratulations. I wish I could have had a houseful of children but my body just did not agree with that idea.

I appreciate you answering my little attempt to give some assistance. But the one thing I always tell parents is to trust their own instincts, no one knows your child, or ever will, as well as you do.

I do not know how you do it, getting up with little ones in the morning. As I have said b4 I was very fortunate because I never experienced the level of P. Arthritis that I have now until my son was at an age where he could entertain himself for hours and on my really bad days even get his own cereal and a sandwich for lunch.

You must have incredible patience to be able to get up and face little ones after barely sleeping.

However they do the cutest things and so hopefully the laughter they bring you and your husband is the best medicine.

Take Care
Judy/Effie
p.s. I really hopw you do not think I am just being nosey. That was never my intention, I just thought if I could repay the kindness you have given me, that maybe we could brainstorm some ideas together. It sounds like you have an excellent handle on it all.
Thank you for everything, I will keep you and your family in my prayers.
Judy

Post Edited (effie) : 7/21/2005 3:17:21 AM (GMT-6)


CaMama
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Date Joined Mar 2005
Total Posts : 1884
   Posted 7/21/2005 8:52 AM (GMT -7)   

Effie, I just wrote you a HUGE HUGE reply and I hit SOME BUTTON that seemed to have deleated it ALL! skull   (my son wanted me to add that!) So, I cannot write it all again right now...I will say:

My kids are 17 months apart, both by c-section no diabetis or preclampsia. I can write more detail later if you would like - it was a REALLY long reply. tongue

I hope you all start feeling much better soon, keep me informed on how you are doing! I'm sorry to hear you ailments. I had a few "good" days there and am now suffering....I wasn't ignoring you guys, but preparing for my mom's short visit....she is gone now and I'll try to catch up on here over the next couple of days if I can.

Take care.

**


 


erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 7/21/2005 9:30 AM (GMT -7)   
dear CaMama,
i just read over a prior post about your liver. i am putting a puzzle together with you! okay? i am also using my books to research your case as well (you help me study!)
this skin condition (itchy) did the doc ever think it is bile salts? they are excreted by the liver and show up on the dermis (skin). now....is it a definite autoimmune hepatitis?
also, if they ever told you that your liver enzymes were elevated .... many ANTIBIOTICS go STRAIGHT FOR YOUR LIVER!  and since you have had pneumonia and all these infections, the meds may cause liver pain and some inflammation too.
how is your gal doing today?
oh and for some reason, if i am confusing you & the liver thing with someone else i apologize (my eyes are not right! tongue ) am i right though? i will try to find the post i am referring to!
have a happy day!
erin

erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 7/21/2005 9:39 AM (GMT -7)   
yep! i was right .... it's you! LOL
oh, and you had also posted about remicade, enbrel and the humira switchy thing. you said "wouldn't it be a step down or something?"? ENBREL vs. HUMIRA! well, it may seem that way but here's the thing.
yes, they are all basically all the same drug; BUT enbrel MAY work BETTER than humira for some peeps and HUMIRA might work better for some other people. you know how it goes....gotta go through the whole laundry list....blah blah blah! how is it going now? i felt exactly the same way you did. was on enbrel for a year (no success) and now he wants me to do humira , but i said "this is soooo bad now, why not go straight to remicade?" and he had given me the xplanantion i posted above. makes a little sense...but this is soooo very fustrating for you i know it.
so....are you up for another sleepless saturday nite with me this weekend? LOL
thank you again for that! such a good Mama!

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 7/21/2005 10:02 PM (GMT -7)   

Erin, your energy makes me so happy, I am sending you a BIG hug <<<<HUG!>>>> and THANK YOU for always making me feel so wonderful! I love chatting with you too and if I'm up late I'll log on - but I'm putting in an order of GOOD SLEEP for us all this weekend!

The liver issue was diagnosed in early Dec - however, I think it probably started over the Fall because it was about August when I started to feel my world collapsing. It was in Dec. that I got so bad I couldn't stand or stay awake. Then the sinus/ear infection mid/late Dec (antibiotics, 2 rounds) then the pneumonia in May (thankfully only one round needed - the first time in 3 years!!!) And I think I had been on a pretty long stretch w/o antibiotics when I got ill at that point.  I don't know what test they do to determine it being autoimmune hepatitis - but my doc I think is basing it on everything I've been through these last few years, all autoimmune stuff and there is no hepatits that it must be yet another one of those "things" from the psoriatic arthrits since they can't really determine why it's acting the way it is. No one has mentioned bile salts to me....tell me more....

You are right about the meds - like I mentioned, my doc had an awful reaction herself to Humeria, but is doing fabulous on Enbrel. My brother in law did well on Enbrel, but doing awesome on Remicade....you just never know.

My daughter has been an angel...yeah!!!! Apprently she was really bad at one point yesterday and my husband punished her (I was out on a wild goose chase trying to exchange a broken toy! The one chore took me 3 1/2 hours!) But, she has been her old sweet self. It is amazing. But, I fear what will happen the next time - each spell has been worse than the last and being able to control her has gotten harder and harder. Effie, yes, I really do want your input on this, you are NOT being nosey and I appreciate the EAR and the HELP - any suggestions I can try would be wonderful! Please let me know what else you need to know to offer help.

My daughter says she is very scared to start K. I'm trying to be proactive with her about the change in August reminding her of using our words when something is wrong - even if we don't know the right words to describe how we feel. But, these spells get her so out of sorts and her emotions are uncontrollable - I don't know if it will help. Hysterical and manic are words that often come to mind during them. Of course, stubborn as well!

The pregnancy question - with her I had this undefined stress I could not shake. I was in great mood and loved the fact I was having a baby - but I do not know if it was the nature of the pregnancy or the being taken off Paxil cold-turkey like I was at 8 wks along that did the physcial stress to me like that. With my son, I was as happy and laid back as could be, that strange feeling of stress deep in my gut wasn't there. The funny thing is - each kid's personality reflects my pregnancy, my daughter is very serious and very high strung. My son is laid back and basically wears his heart on his shoulders. I had an immune system of iron (couldn't get sick!) while having her and she in turn rarely gets very sick. I was induced because of her size vs. mine - but they realized after many hours of labor and FINALLY giving me an epidural that she was breech. From the day she was born, you could cut the air with a knife everytime someone other than my husband came in to the room, especially visitors. She didn't like ANYONE even touching her (and that lasted for about 8 months) other than me or my husband. She is over that, and I contribute some of that to her brother being born and getting so much attention because he'd let everyone hold him.

With my son, my arthritis was in remission, but I was sick as a dog. A cold at 11 weeks turned in to pneuonia and brochitis. I was sick until 33 weeks along. I had a c-section because of the recent one w/daughter. My arthrits came back 10-fold that very night after I had him  and I haven't been the same since. by the way, my son gets sick very easily- colds and fevers. He'll get a fever if we're up out of the house later than normal and/or past his bed time.

Oh, and they are 5 1/2 and 4. Thank you for the 'mother' compliments. I love my kids to death and they ARE my world, but I know my health has kept us from doing as much together as I'd like, even just here at home. It has also caused me to be more lenient than I should be at times. My house after 3 years of being here still looks like a storage unit and is often a pit. I often spend the mornings lying down because I just can't move and am so exhausted. I don't know what i'm going to do this Fall when my daughter's class starts at 7:40!

I hope all is well with you. Did you get the TB test yest?


 


erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 7/22/2005 5:28 AM (GMT -7)   
CaMama,
i think they would get a definite Dx of AI hep by doing a liver biopsy. it is done as an outpatient, same day procedure (but since you have underlying conditions, they may want to keep you over nite) and it is minimally invasive. my GodMother just had one done 5 months ago. she has Hep C and i give her the Peg interferon shots and Procrit. she is in remission now with undetectable viral loads!
i will look into more of the bile salts & AI Hep in my nursing and patho book for you. i will list some of the landmark signals and see if it helps you any!
also if you have any specific questions i am very very good friends with a Dr of Microbiology who is also an MD....he loves this stuff too! he's a professor @ my college.
Lots of Luv
erin

CaMama
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Date Joined Mar 2005
Total Posts : 1884
   Posted 7/23/2005 10:48 PM (GMT -7)   
Well, I wonder about how much impact the Remicade had in all this. I think a lot is the answer. In December they announced it could cause liver problems (how ironic that it was posted only 5 days after I was called by the doctor saying there was a problem with my liver!)
 
My joints hurt rather than are just still, I had a few bad flares, but honestly, this last week or so I've felt pretty good (knock on wood) aside from the joint pain.  I don't know if is the heat wave we're having, though the humidity has been high and we are getting some very unusual SO Cal storms due to Emily OR the fact, I'm over the penumonia and the Remicade is out of my system (last infusion May 1st.) My liver functions are finally back to normal!!!! I just found out yesterday. I still have the enlarged/inflamed liver and I am still getting the pain in my side, but my actual enzyme levels supposedly came out okay on last testing...
 
However, no matter what the cause of the problem, my health history says that now that this makes twice my liver has been hit (first with the EBV/Mono/methotrexate issue 3 1/2 years ago) that, like my spleen, it is probably a pain target for flares for me. <sigh>
 
It looks like that unless I have another flare like I did 2 weeks ago and can't take it anymore, I am supposed to wait to start Enbrel until I see the doctor late August. They want to make sure my health stabalizes. This is (knock on on wood) the longest I've gone w/o getting sick in a very long time - one whole month! yeah   That is a "YEAH" and "how pathetic" at the same time!
 
**
 


erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 7/24/2005 9:22 AM (GMT -7)   
Hey CaMama,
yea, not only is this tough but it's confusing as well. definitley, DEFINITELY .....i would have my blood monitored like every 2 months if possible for a while. you don't want to let the liver problems to go unoticed if something BIG should pop up. many of the meds you were on will cause increased L enzymes. and yes, their still is the risk of AI Hep. perhaps a drug holiday would be good for you? just to see if the inflammed liver goes down. we do this in the hospital. i have seen it Rx by docs. when pt are on heavy duty meds he will gradually pull them off everything except BP and diabetic meds and then just say Rx tylenol and rest for pain just to let the liver HEAL itself and calm down. the liver is the ONLY organ that wants to HEAL itself! it will regenerate! and then he gradually puts ya back on all the meds.
this is just something to consider if you think the liver is caused from the meds.
YOU ARE THINKING LIKE A DETECTIVE! this is good. your theory is probably absolutely correct! i think the same way!
but keep a close eye on it! are you jaundiced? have you gotten pale? like in your mouth and tongue? is your tongue beefy red? the inner eyelids, are they extra pale or yellow? these are a few things you can do to keep tabs on your liver at home. and erin keeping up her nursing skills while in convalescense! LOL & the best to you camama!
{{{{{{{{{{{{{{{ hugs to camama }}}}}}}}}}}}}}}}}}}}}}}}}}}}}
erin

Post Edited (erin kachmar) : 7/24/2005 10:25:35 AM (GMT-6)

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