Humira: scared to start

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effie
Regular Member


Date Joined Mar 2005
Total Posts : 344
   Posted 7/6/2005 11:39 PM (GMT -7)   
Hi all. For the past three or four weeks I have had a package of "Humira" sitting on the bottom shelf of my fridge. I was suppose to have a tb test and chest xray before I went downtown to the University Hospital to have my first shot.
The first time I went to see my family doc for the tb test, I was feeling under the weather with sinus pain and a sore throat. The doctor decided not to give me the test that day because I was not feeling well. I went back to the doctor on the following Friday. I thought he could give me the test then. He informed me that the test had to be read in 48 hours. I suggested that I could go to a walk in clinic on Sunday to have the test read, or come in first thing Monday morning. However, the doctor said whoever gives the test has to read it. I have had 3 days this week to go and get the TB test but I have not gone. The doctor even told me I could walk in to his office anytime on Monday or Tuesday and have the TB shot. But I did not do it. Now it is Thursday and since he does not work on Saturdays also, I am putting off this Humira for another week. This drug cost me $1789.00. I am still waiting for the insurance to pay me back for the drug. Yuck!!!! I hate putting out that kind of money. However, I should be grateful for the fact that I have medical insurance that will cover such an expensive drug.

I think the bottom line is I feel confused. I really thought that some specific test had determined that I needed the Humira. Now after reading a lot on the subject, I know that there is no specific test for P. A. I also know that there is a 1% chance that it could increase my chances of developing MS. I have already had one MRI suggesting I have MS and am waiting for the results of a second test in August.

Tomorrow I go for treatment of some squamous cell cancer spots on my face. I know these are highly treatable. I hate the scars the treatment leaves. I should not be vain, but I would be not telling the truth if I did not admit to this.

Oh well, this too will pass.
judy

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13455
   Posted 7/7/2005 2:25 PM (GMT -7)   

Hi Judy,

I have crohns, so I have been doing Remicade infusions since 02, every 4 wks. My gi has decided that I have built up antibodies to it from having so much of it. Sometimes I would get relief and sometimes I didn't. My last infusion was last month, so we will see how it goes. I am also on 100mg of Imuran. I am wondering if Humira is a possibility for me. One of the girls from the cd board could not handle Remicade, her gi managed to get her ins. to approve it even though its not approved for cd.

I understand your fears but have seen some excellent results as a result of the Humira. I do hope all goes well for you. Susie



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

Hi Judy,

I've been on Remicade for a while now and my doctor told me today I need to switch to Enbrel. I'm worried myself for various reasons. I can tell you with the Remicade, I had wonderful results even though getting the IV is a painful experience for me (small veins). I know some people on Enbrel and Humeria who had the same great results. It's all scary though.

However, if these drugs are stopping the process of arthritis (which ever form), do they risks outweigh the benefits? I'm asking that myself.  It's a tough call. But, I owe it my family to try and have some sense of a mother/wife around. If it doesn't work, then at least I tried - (I'm scared to death of giving myself injections, by the way) - and hopefully nothing but a little time has been lost in the process of figuring out what med to take. Of course, for me, the test will be when I actually have to do the injections. I may chicken out myself as getting the IV proved to be very difficult for me, but I had no choice but to go through with them!

My suggestion to you is: Go get the TB test. It doesn't mean you HAVE to start the Humira right away, but at least you will be able to take it when YOU feel ready to give it a shot.  (HA, no pun intended!) I prolonged my TB shot for the Remicade 2 summers ago, but ended up needing to get it for my daughter's preschool anyway and had no choice!

I'm realizing a lot of the doctor dx seems to be guessing. It stinks...you just have to hope they make the right guess and what they can give you works. As my PCP told me, "you won't know until you've tried..." I know the MS is a scary thought...but, start the drug, see how it helps, get the follow up test in August for the MS and go from there. If the meds help and you want to continue - then insist you get regular testing/follow ups on the MS to make sure it's not developing or getting worse so you are on top of it.

I hope this helps. I'm not in the greatest of great moods tonight (though I still have my strange sense of humor!), and fear I may sound opposite of what I'm trying to say here. You have to do what you feel is right, but don't loose out on what could be great relief to you out of fear. I, myself, have to work on that as well.
 
Good luck tomorrow with dermatology. Don't feel bad about being a little vain - we all need  a little vanity in our life to feel good about ourselves.
**
 


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13455
   Posted 7/8/2005 10:16 PM (GMT -7)   
CA, why is your dr insisting on changing your meds if you are doing well with Remicade? I kow about the bad veins, mine very smal, roll, lots of scar tissue, impossible to find a vein that does not blow within 5 minutes. I ended up May a yr ago having a port put in my chest. Man, that made things so much easier. Now, if I am admitted to the hospital, I demand they use my port and its just alot easier and not painful at all. I too am not sure I would have the guts to give myself a shot. I use to be so scared of needles that it was pathetic, now I don't even bat an eye. LOL. Susie


effie
Regular Member


Date Joined Mar 2005
Total Posts : 344
   Posted 7/9/2005 6:35 AM (GMT -7)   
Dear Straydog,

Thank you for your responce. I sincerely appreciate you taking the time out to write back to me. Thanks for sharing your experiences.

I appreciate you sharing the positive information on Humira. I plan on going ahead with it.

I can understand your fear of needles. I am pretty good with them, except for abdominal ones. I am an insulin dependent diabetic, so I am use to using a lancet to check my sugars several times a day. I also give myself 3 or more injections of insulin per day. Insulin is absored the fastest when injected into the abdomen. I rarely give myself my insulin injections in the trummy, it just seems to hurt too much. From what I understand at this point all of the Humira injections will have to be given into the abdomen.

That port sounds like a great idea.

I think that since Humira is almost like a cousin to Enbrel, it may work for you. I will try and "google" it and see what information I can find. Or the next time the people from "progress" (the drug company) call me, I can ask them to tell me some info on this or send me some info which I can then email to you.

Well, I wanted to thank you for sharing. You are very kind and I will listen to your guidance and wisdom. Thanks for caring. You are very thoughtful and I really appreciate it.

Wishing you all the best,'
Judy

Post Edited (effie) : 7/9/2005 7:47:32 AM (GMT-6)


CaMama
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Date Joined Mar 2005
Total Posts : 1884
   Posted 7/10/2005 8:00 AM (GMT -7)   
Straydog - I've been ill since November with liver problems, constant infections, and during my infusions, I've started having problems. Itchy skin and throat, swelling/painful eye followed by quite a few days of what feels like a terrible attack of the allergies. Some of my last infusions were followed by horrible flares that left me in bed for over a week. I started a steroid pre-med infused before the remicade. It helped a lot, not completely. Of course, again, I was having liver problems at the time. This is a new doc who seems a little too sure of himself, btu I will give him a try. He made this assessment after 2 minutes (or less) of reading my chart.  My brother in law (same probs as I have and also on Remicade) feels Enbrel is a step back and Humira would be a better choice. Does anyone have an opinion on that? If I want humira instead, I have to call asap to have him change the referral for the drug.
 
I can say, that I'm a month overdue for my infusion, I've been over the pneumonia since June 23rd, and though I'm dealing with congestion and some minor problems, this is the longest I've stayed infection/ill-free since Thanskgiving. My thoughts are the Remicade was a major contributor to the last 6 months of grief. As much as I've been in all-day pain the last week, I am wondering if these TNF blockers are not for me though so far, I've had great results from the one I was on. But, what's the point if I'm bed ridden with infections all the time? I've always had problems staying healthy (docs always blamed the RA), so, it could be I'm the small percentage that can't handle them? I don't know.
 
 
 


CaMama
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Date Joined Mar 2005
Total Posts : 1884
   Posted 7/10/2005 8:20 AM (GMT -7)   

Effie,

Good job in taking the first step to tackling those fears! I'm going to need that same help if and when I start Enbrel (or Humira, if you look at my response to Straydog.) My fear of needles has not waived though I've been dealing with them so often for so long! The thought of giving myself a shot gives me a stomach ache!

Regardless, now that my pain and stiffness is coming back to my entire body....I miss the Remicade and may have to get that last infusion before the doc decides which route to take.  I was so happy to be feeling better after that last infection and I was hoping to actually DO something with my kids this summer....now, I can barely walk through the grocery store w/o out severe pain. If this keeps up, I 'm going to have to borrow one of my father-in-law's canes. My feet hurt too bad! I almost fell down the stairs becaues my knee suddenly gave out the other day.

That actually was not supposed to be a pitty paragraph - it was supposed to make a point! The point is - I haven't had this kind of pain in general since before I started Remicade. (with the exception of the infusion my body rejected in March) and if this keeps up, I'll be more than HAPPY to give myself a shot if it means getting rid of this pain. That is how GOOD I felt on Remicade and I know there are others with just as good of results on the other 2 drugs. So, I will reiterate what I said before, give it a try...don't let your fears overtake your chance to feel like a new person! Take charge of your care if you have concerns like the MS, but you owe it to yourself to get some relief it is available to you.

On a side note, I was looking up the TNF blockers on their respective sites and the one thing Humira claimed that the other two did not is it helps with the fatiuge arthritis causes - BOY could I use that! I know feeling better in general helps with that fatigue, but if it's better fighting that than the other 2, sign me up!  tongue

**

 


 


CaMama
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Date Joined Mar 2005
Total Posts : 1884
   Posted 7/12/2005 7:07 AM (GMT -7)   

SO, it is Tuesday - have you gotten the TB shot yet????

:-)


 


effie
Regular Member


Date Joined Mar 2005
Total Posts : 344
   Posted 7/13/2005 1:20 AM (GMT -7)   
I am so ashamed, but the answer is No. I hope and pray that tomorrow is a better day and I will get it done then. thanks for caring
God Bless,
Judy

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/13/2005 7:42 AM (GMT -7)   
sad  judy judy judy, you break my heart sad
my friend, you've been here for me so many times, so let me be here for you now.
perhaps what i write will you will ease your worries.
first of all....you did shell out all of that money, so that says YOU DO WANT TO DO THIS!!! tongue so that's good!
it's totally normal to not tkae the next step....but, YOU WILL DO IT WHEN YOU ARE READY!!!! you are a unique person and an inividual, and everyone starting injection therapy is different. it is a process! and it has stages. excitement, fear, doubt, denial, more doubt, more fear, even regret sometimes. go through all of your feelings. this is hard, yes!
i understand your fear of MS. i fear it as well. in fact right now i'm hesitant to run the cancer panels they want to do for fear of suspected lymphoma/leukemia. BUT I MADE A CONTRACT WITH MYSELF THAT NEXT BLOODWORK I WILL DO IT!!!!!!!!
and you will too have your TB test!
the Humira will not expire any time soon, so don't worry.
you  know what Effie has to do! she's gotta take care of business!
are you afraid of self injection? because you have a lot of support. WE CAN EVEN DO IT ONLINE!!! LETS MAKE A DATE!! tongue tongue tongue yeah yeah yeah yeah we'll all do our shots on the same day! it'll be a SHOOT UP PARTY! yeah yeah yeah yeah yeah
i'm sorry but i felt the need to make you laugh.
also....medicine is a practice, you are right..there is NO specific test for PA...BUT....in medicine, a way to diagnose is to see if the patient responds to a med! and if she does, then we know what we are dealing with! i know it sounds an awful way to rule things out, but it does work! if you respond well to the humira...then you will know for sure what you have! isn't that great?
this medicine...think of it as survival!  that's what i tell pt's i had with IDDM when they had to start insulin shots. and it is....SURVIVAL!!!!  if i had my humira i'm waiting for...i would do it right now, today, this minute!!!!!!!!!!!  becuase i've worked up such a GUSTO...to want to get well, that i will do and try anything!!!!!!! and believe me, that took years to do!!!  i put off a spinal tap for 5 years because i was scared of the needle. i did it when i was ready. and that is all that matters judy. take your time, but do it when you are ready. i know you want it! 
now go get the darn TB test you procrastinator! tongue
JUST TEASING!!!!  give yourself a break my friend....take a mental holiday and not think about it for a few days...make your appt, set a date! you will feel better soon. just takes time.
well, erin is signing off now in hopes i was a good personal cheerleader for you, you have been a good one for me!
i support you! and i know you will do all the right things. it's perfectly OK to feel this way! this is a major thing here!
will talk to you later. have a happy day. let me know how you are doing today okay?
{{{{{{{{{{ hugs }}}}}}}}}}}}}}}}}}
erin
 

cbrossman
Regular Member


Date Joined Apr 2005
Total Posts : 191
   Posted 7/14/2005 9:30 AM (GMT -7)   
If others can do the shots, you can too. There are very few things that someone else can do that you cannot!
I do find it a little weird, it makes me (mentally) feel like a sick person, which is hard for me because I have always be the uber-healthy guy.
The Enbrel on top of MTX has gotten me from feeling 70% to almost 100%, most days. I've just ordered my second 3 months worth of hits.

Start taking the Humira, it took me a few weeks before the Enbrel kicked in (like MTX), but now I feel so good that I actually think about going off it (I am beginning to realize that would be foolish). As my Reumatologist said to me, the first step is to get back to normal, then we go from there. Your new drugs may just be the ticket.

Good luck and stay strong ... Craig

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/14/2005 2:13 PM (GMT -7)   
:-)  see Judy,... Craig and I will be your cheerleaders! :-)
welcome Craig....thank you for your good input. i know what you mean when you say you were the"uber healthy guy". oh i long for the days where i can work, go out, work out, run and flex my once Linda Hamilton "Terminator" arms! tongue now i'm a little shell. a 93 lbs capsule of fluff! LOL
if i had the energy, and less black n blues....i would be pursuing modeling. looking very "heroin chic" lately.
glad to have you & speak to you soon.
how long have you been on enbrel?
sincerely,
erin 

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 7/16/2005 1:59 PM (GMT -7)   
Okay Judy, I just got my Enbrel delivered yesterday. I don't know when I'm supposed to start, the doctor said next month, but if I can start now, I will because I want to be mobile for our camping trip next month! I'm SCARED TO DEATH about giving myself a shot...and I am scared about a few of the side effects myself....
 
I'm going to need some tips on the shots and how to do them painlessly and w/o too much irritation to my skin.....HELP.
 
In the words of old Bob the Builder = "Can we do this? YES we can!"
 
Yikes....can we virtually hold hands starting this?  What was that about an online shoot up party Erin mentioned???? tongue
 
**
 


Flopsie
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Date Joined Jun 2005
Total Posts : 1361
   Posted 7/16/2005 2:17 PM (GMT -7)   
Erin, Camama,

YOU GALS ROCK!!!!!!!!!!
Don't walk in front of me....I may not follow
Don't walk behind me....I may not lead
Walk beside me..and be my friend...
                                    Albert Carnus
 
and Lord, put your arm around my shoulder and your hand over my mouth
 
 

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/16/2005 11:25 PM (GMT -7)   
yeah  CaMama, congratualtions on recieving your Enbrel! yeah i'm so very happy for you!  i remember when my first package arrived; i ran home & did the shot STAT! i was so excited thinking this would be the beginning to all good things and help me get better...was very pumped up!  oh yea, it is sooooooooo much easier giving someone else a stick and it is VERY weird doing it to yourself the first time. just ask yourself one question: HOW BAD DO YOU WANT IT?! that adrenaline rush and the desire to get well will drive you to success with your shots!
they are EASY!!! really! smurf i would not lie about it. umm,,do you have the 25mg or 50 mg? i have been through both. the 25mg twice weekly shots are HEAVEN!!!! there's no sting from the med and the needle gauge is very thin.....a good length as well so don't be afraid of it going places where it shouldn't. Sub Q injections are very safe Mama! not very traumatic at all to the skin. just ask Judy...she gets insulin! honestly, the 50 mg therapy is a little stronger....because the pH of the enbrel is more acidic, the actual injection of the med stings when going in. devil to lessen this effect i suggest letting the 50mg shot reach room temperature!!! let it be warm and not chilly...it helps a lot. also RELAX! cool lay down, put on some tunes.....bring a drink! heehee. you can also ice the area a bit before you stick too. but once the med is pushed through, the sting stops.
remember....if you are uncomfortable with the 50mg shots, call your doc and tell em...he can switch you to 25 maybe!
the 25's though are a piece of cake!! no sting....i don't even feel mine at all anymore.
the best areas are those where you can GRAB a chunk of flesh. you can inject @ 45 or 90 degrees....and you can do it slowly...you don't gave to DART at your skin! the needle will go in!!!
in fact....it took me a while to try it, but the sides of my abdomen were the BEST areas!!! FREAKY though...but it left NO bruise and i was really surprised at how easy and smooth it turned out to be. :-) i know you can do it!!!! i am a sissy and i know if i can do it anyone can!  as i said it is easier doing it to another person (ive given hundreds of shots and found it awkward doing myself) but i feel the need to get well helped me through! i was like a football player! getting souped for his game! and if need be....set a date and time and we will all be here!!!!! if i can offer anymore help....just ask, or if i missed anything let me know okay!!
much luck! tongue {{{{{{{{{{{{{{{{{{{{{ HUGS }}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}
erin

CaMama
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Date Joined Mar 2005
Total Posts : 1884
   Posted 7/16/2005 11:38 PM (GMT -7)   
Thanks, Erin! Your enthusiasm really helps! :-) I just checked the Rx and it looks like I have the 50 mg ONCE a week and there are 4 bottles in the box I got - so, a month's supply? Hmmm, I might try the icing the site prior injection like you recommend. I still have to get a hold of Dr about it so I can go in for the lesson on how to do the injection, etc. I want to start before our camping trip in Aug...but, I'm fearful of not starting soon enough to ensure I don't get a reaction before I'm 3 states away in the outbacks of whatever mountain range we decide to visit!
 
You know, I've come to realize over the years it is NOT the needle prick that bothers me, but the injection of the medicine typically (though drawing blood and IV's feel MUCH different than shots!) So, hopefully, the sting is not too bad for me with the 50mg. Also, I have a LOT of fat sad so, grabbing flesh shouldn't be a problem.... sad how pathetic! But, if there is a chance it will let me feel great and not get these flares....I have to try them! I hate being back on this never knowing what may lay in the next 30 mintues......it was bad enough these last 7 months with my illnessess, but it's worse with the arthritis pain! For crying out loud, I lightly trip over something (like my own feet) and I might be out for the rest of the day!
 
So, Erin...it's bad enough I'm up at 11:30 at night, what are YOU doing up at 2:30 a.m.????????
 
I'm heading to bed...I swore I'd go to bed an HOUR ago......
 
**
 


erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 7/16/2005 11:44 PM (GMT -7)   
tee hee hee
i'm in pain at 0245! cannot sleep.

erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 7/16/2005 11:50 PM (GMT -7)   
redface  oh boy, i'm glad though someone is up! i wish you a good sleep! redface   i hope you get in touch with your doc monday. typically, one is supposed to see results of enbrel within 3 months, some as soon as 3 weeks! :-) so maybe yours will kick in real fast! that would be nice.  are you really hypersensitive to meds? i say this because it is rare to have any side effects of enbrel beside maybe just a black n blue, warmth in the area, and perhaps headache. but you are right in the mind set of taking it before you go away...i would do the same thing for it is better to be safe. also, the RN's at the enbrel hotline are WONDERFUL!!!! i used them a few times with questions. ask ask away! they really are great nurses. they truly know there stuff too!
goodnight!
erin

CaMama
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Date Joined Mar 2005
Total Posts : 1884
   Posted 7/16/2005 11:50 PM (GMT -7)   
sad   I figured as much...I'll put in a call to the sandman and send him your way!
 
Oh. and  I meant to reply about your not working for 7 or 8 months.....don't even think about time lines right now....put as "when i am well enough to return...." I found that giving myself a "well" date put stress on myself. Just relax and focus on YOU and getting better...
 
**
 


erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 7/17/2005 12:01 AM (GMT -7)   
thank you so much. what a good mama you are!i need all the mamas i can get! mine is great...but i stress her out! it's hard for her to see me kinda deteriorate. do not look very healthy. even got pity i think from my rheummy yesterday...he poked at my shoulder bone and with sad eyes said "i'm so sorry". i feel bad for him cause i know he doesn't know what else to do. he is brainstorming with my PCP on our next move. they would like it if i can go to the Mayo Clinic. everything is just so complicated and getting worse. they feel helpless i suppose. BUT, MY MENTALITY IS GOOD...TRYING TO KEEP GOOD SPIRITS!
i'm a stickler for timelines...always was. "need to get this done fast, first, now...can't wait" even when i was a small child i was like that! stubborn too! i hope i get some sleep myself. at my honey's house. he's snorin' and i'm up on the couch. i did not want to keep him awake so i left. i am such the good girlfriend! he's so sweet when he asleep.
{{{{{{{{{{{{{{{{ nitey nite }}}}}}}}}}}}}}}}}}}}
erin

erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 7/17/2005 12:05 AM (GMT -7)   
sad  actually i am up from severe pain throughout my hips. so bad that even 3 morphines barely made it comfortable. almost hospital type pain, but i really do not want to make another trip there this weekend! knocked out for 3 hours so now i am up confused . is 3am now...getting drowsy redface   but it was really really nice talking with you CaMama, it helped with the pain. you know...distraction, takes your mind off of it. here's to a better tomorrow. :-)
erin smurf

effie
Regular Member


Date Joined Mar 2005
Total Posts : 344
   Posted 7/17/2005 2:31 AM (GMT -7)   
Dear CaMama, Craig, Curley, Erin, and Straydog,

Thank you all for your encouragement. I hear you. With each post I read I am getting stronger.

Erin I am so sorry for all the pain you are in. Have they ever considered a pain pump? It is just awful to see you guys suffering so much.

I know the Humira RN's are helpful too. I called on Friday and asked if they had any suggestions on how to get over the fear.

I need to go on Monday for the TB test. I am not afraid of that test. I have to get them ever so often being in the education system.

However, I am now coughing up huge amounts of phlegm. And I have a massive headache near my eyebrows.

Last week I assumed the headache was related to the fact that I had treatment for pre cancerous spots on my skin near both eyebrows, the right eyebrow being worse.

I had pain from that and I had a lot of nasal congestion, and there was actually blood in my ears. My ears felt like there was water in them. So I did a no- no and used a q-tip to clear out the water, and found blood. I also had a sore throat.

My stiffness and pain is getting so bad in my one knee I am also sure it is broken. This knee has severe oa in it and they have been suggesting I get it replaced for the past ten years. I had arthoroscopic surgery on it, which only made it worse in 2002.

All the sleeping I am doing either from the new sleep aid, Trazodone 50 mg. or the anti depressant Zoloft 50mg. is not helping with the stiffness, I know Trazodone is actually an anti depressant but is used for sleep aid. However when I sleep that long, when I do get up to go to the washroom I have to get my husband to carry me there.

Either that or my bad knee is broken????

I also would like to ask my new family doc to give me Imovane for sleeping. It is shorter acting.

I will stay on the Zoloft and pray that it improves my mood and energy level.

I will have to ask the doc to give me a couple pacs of Zithromax to kick this sinus out of me, before I begin the Humira.

I need to call the rheumy and set up an appointment so she can yell at me for not starting the Humira yet. It is weird. last summer when she first told me about it, I was all hyped up to get it, even excited. However it almost took a year to get government approval. Our health care system insists I try things like methotrexate and arava before agreeing to the more expensive Humira. I do not understand this, since it is the medical insurance through my previous employer who is paying for it. I did have to put out the money first and am still waiting to get reimbursed. But I think last August I would have done it right then and there.

Craig it was so kind of you to write me your encouraging news. Congratulations on feeling better. I agree with your rheumy though. Do not push yourself too hard yet. Oreo describes her wellness as being a chemical remission. Do you think of it the same way?

CaMama I am so glad to here you got the Enbrel. I think that is a great idea to do this a.s.a.p. This way you may feel significantly better before your camping trip. How old did you say your kids were again? I am still doing some research for you in regards to your daughter and possible ADD. I have one question, is she able to have control some of the time? There is ADD, attention deficit disorder and then ADDH , when you add the H it means that the child also is hyperactive, difficulty sleeping, runs and has bounds of energy all the time. The "h" part usually settles down by the time a child is 13 or so. My son was diagnosed with this when he was 3. At that time my sister was director of paediatrics, and she told me that the local hospital was trying to give young patients who might be ADDH, cups of coffee or tea or cola drinks. All of these are stimulants like Ritalin, and if the child is ADD they will most likely feel calmer when they get a stimulant. Most of us have natural stimulants in our bodies, but children with ADDH, are extremely active because they are trying to increase the stimulus in their body that they are lacking. My son has required to have 3 cokes a day in order to concentrate ever since he was little. Some times we give him tea instead. However this has fewer side effects than ritalin. Perhaps he has a mild case, because he does respond to this. I know it is a lot of pop and wish we could reduce it to no more than 2 per day. You could try giving your daughter coke cola and see if she is any better. When my son was 4 he only required a small amount to help him stay calm. Food dyes were bad for him. If the doc gave him an antibiotic liquid with red dye in it, he would not sleep for like 24 hours straight. The research that was done several years ago suggested that very few children were affected by diet. The one thing they did find was that there is no one consistent cure for ADD. You need to have a bag of tricks, what works one day may not work the next day. Most of these children are extremely intelligent. They often will settle down, if they are in the middle of a tantrum, and you say to them, "Did you know that sometimes the companies experiment with shampoo on animals, let's go and see if our shampoo bottles say they have not been tested on animals?" Once these kids are over 4 they respond well to discussions about social issues to calm them down, it is a great trick to use if you are out in a restaurant. You could start a discussion about handicapped people's rights etc.

Anyway camama I am still researching and hope I can come up with some ideas for you since my training is in educational psychology.

Erin, I forget, do you still take Enbrel? Did it stop working? Was this a drug tolerance thing. It would be great if you could get to the Mayo. I do not know anything about this hospital, since I am in Canada.

I was talking to my husband and we were thinking of taking that new ferry from Toronto to the states, would that put us anywhere near you. I was wondering if it did if we could maybe meet for lunch, if you are up to it.

Curley I hope by the time you get this you are feeling better.

Wishing you all the best. It is now 5:30 in the morning. I did not take the sleeping tablet today.

Take care. Thank you all. I will keep you all in my prayers.
Judy/effie
Sorry for the very long post.

Post Edited (effie) : 7/17/2005 3:35:09 AM (GMT-6)


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 7/17/2005 9:28 AM (GMT -7)   

Erin, I'm so sorry for your lack of sleep. I hope you finally got some! I can't believe 3 morphine didn't help! I hope your doctors can get you in to Mayo. I hear good things about them. I think the one in Minnesota (I think that's where) is their hub and is supposed to be excellent. There is one in Scottsdale, Az and I think one in your area....not sure on that. I don't know if each one has a different specialty or not.

Glad I could keep you company last night! :-) I got a really NICE surprise from my kids this a.m. - they slept in a little bit! And I got an extra hour more than usual in regards to wake up time. Boy did I need it!

Effie, I'm so sorry to hear about you being sick. You must feel absolutely miserable! Feel better soon!

As for my daughter, she is typically a very kind, caring, sweet little girl. She is extremely articulate. At 8 months, she had a large handful of words she could say, though they still sounded like baby-talk, they were prounounced enough for me and my husband to know what she was saying.  She was always a cuddler (unlike my son who NEVER was even as an infant) but always high-strung.

I worry that possibly the problems are something I am not handling properly. Am I not giving her the mental or emotional challenges she needs to keep her from these spells? However, these spells often are at their worst when changes happen in our daily life. The one in January occured after the holidays (which her bday in also in DEC.), her 5 yr. shots, a week long trip with family, and returning to school after the winter break and trip.  This last one occured on her last week of school (she is nervous and sad to leave her teacher and start Kindergarten at a new school), her dad when on his annual trip w/o out, I was getting over pneumonia all at the same time, she also had a milestone of finally being able to master caring for herself in the potty room.

I've noticed TV in the wrong dose helps her act up. If she's already in a spell - 20 minutes can be too much, though sometimes, it helps calm her down - until you turn it off! Certain foods I think trigger her. I'm thinking it's the processed breads - when I give her a kid snax (like Cheese-its) she'll act up soon afterwards. I don't think she's so bad she has celiac's disease, but I guess you never know. I know that disease can cause a lot of strange problems in children. But, I often notice BETTER behavior out of her when I feed her more gluten-free foods, keep even the cooking to using soy rather than dairy, and pushing more raw foods on her (she loves to eat and thankfully, for me, she eats just about anything.)

If she were diagnosed with ADD, she is not hyperactive to make it Adhd......my son, on the other hand is very active, easily distracted (the typical 4 year old - spends 2 minutes on one activity, then is ready for a new one.)  However, her instensity and need for routine seems much more manic and persistant than most moms I talk to. Any disruption can cause a melt down. Once she's hit a point, she seems to be unable to control herself, calm down, or even listen. She gets very hysterical - it's like watching a movie of an out of control child.  This last time, her NEED to be with us was overpowering her ability to stay put (in her bed, in the corner, etc.) to the point, she'd rather had us spanking her (a very last resort for us) than to have us leave her. We've taken every approach with her and it is tiresome....right now she's back to her angel self, but it was a very trying 3-4 weeks to get here.......and I'm expecting another one at the end of August (I am hoping not of course!) after our 2 week trip and starting Kindergarten at her new school AND now going to school 5 days a week for 3 1/2 hours (versus last year's 3 days 3 hour days.)  but, it seems last year, she had a spell around the same time.

Any thoughts, ideas, tactics you know of, find out, etc. would be most helpful to help fend off this in the future.....Distracting her is a good suggestion, but difficult because a lot of the problems start from her doing something naughty and us taking action on it. The few times it comes from us just trying to calm her down before she gets too upset over somthing often blows up in our face because the mere fact she got that way is too much for her to handle.

Well, that is enough of that....I'm sorry to go on about her, but if any of that information is helpful, I guess it's worth the read! I love her to death and is hard for me during those spells because I saw what a bad road my sister started on not being "treated" properly as a child and I don't want that for her.

Thanks for your interest.

***


 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/17/2005 12:56 PM (GMT -7)   
hey effie, i think the nearest stop from canada to here wouldbe somewhere in upstate NY near Niagara Falls maybe...i'm not too sure. i no longer am on enbrel, had my last dose 2 weeks ago. possibly starting humira or remicade...they dont know yet. am in tremendous pain still...not very nice.
Camama...will probably consider a pain pump down the road...but i have to find out the primary source of this pain first. i sure hope it is not a cancer. my BUN in the blood work was elevated too. have to find a place that will do a bone scan. uugghh! i'm home now...miss my joey already, we had a very nice weekend.
going to get in some rest.
thanks again camama for the company last nite!
erin

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 7/17/2005 1:34 PM (GMT -7)   

My prayers are with you that it is NOT any form of cancer....I hope this is just a glitch in the life of RA and you will be back on the road to health very VERY soon. Remicade was awesome for me - I hope you find the same great results.

**


 

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