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Alice1338
New Member


Date Joined Mar 2006
Total Posts : 17
   Posted 3/20/2006 11:26 AM (GMT -7)   
Hi I'm new here and I have just been diagnosed with RA. I also have Crohns disease, have had it for about 20 years. I was just wondering if anyone has had success with Humira? I have just started it and for some reason (maybe just in my head) it seems that the day I take it my arthritis seems to be worse. Also I was wondering what kind of pain meds work best for arthritis? I have been taking Vicodins and they just don't seem to be doing anything. I am in lots of pain from both the arthritis and the Crohns I just don't know what to ask my docs for. I don't want to seem like a junkie. Thanks for your help.

curley
Veteran Member


Date Joined Mar 2005
Total Posts : 4305
   Posted 3/20/2006 12:33 PM (GMT -7)   
Alice Hi and Welcome just incase I have not told you that.I'am on Humira and I gotta tell you that Humira is what got me out of a wheel-chair.I have crohn's,ra,oa,as,and sejerens as well.For about the first three month's it did me the same way it made my joint's hurt werse.But that will go away in time just give it a little time.If you have any more questions please do ask.Oh how has your Doctor got you taken humira?I started out with a loading dose of 80 and then 40 every other week.But for right now I'am back up to 80 every two week's.
Thanks
Curley......
a.k.a.Mela...........


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 3/20/2006 10:49 PM (GMT -7)   

hi Alice,

we've much in common. have a bad case of RA and Crohns as well. the joint pain is what is most terrible. so off the bat my heart goes out to you for living with this...it's not easy.

your arthritis seems worse the day of your shots?  could be a few things: could be that by the time you are due for you injection, the previous one is wearing off thus leaving you in more pain/inflammation the day near your next injection. in that case, you could always inquire about dosing the Humira @ every week or even every 10 days rather than every 2 weeks. i take it every 4 days @ 40mg.

any apprehension or anxiety about the injections or stress in general that day can add to tension making your body hurt even more.

also, with RA and any autoimmune disease the body and it's reactions to ANYTHING is highly sensitive. so, some may find that after any procedure...whether it be a blood draw, an injection, dental work, even a MASSAGE....can trigger mini acute responses of hightened "flare ups".

ok...you have Crohns so i take it that for you all NSAIDs are out of the question right? i cannot take nsaids...i bleed & get a CD flare up.

in reality, NSAIDS are best for inflammation. you do need an antiinflammatory...which unfortunatley will most likely be prednisone evrey now and then for bad flare ups and pain. Vicodin and narcotics help pain, yes....but they really do nill for the throbbing part. which stinks. i've just added Imuran to the combo of meds I'm on for joint pain and it does help keep my elbows and shoulders from throbbing and getting severe pain.

darvocet-N is pretty good...it has a tylenol component to it.

but...if pain is a major problem and you want good pain management a safe way to go would to be on an extended slow release narcotic and something for breakthrough pain. Vicodin is a little short acting. there are morphine that are slow release and act all day.

i still have to use ice/heat/compression/elevation even with everything i'm on. so it's a lot of work to keep pain at a tolerable level.

thing is....do not be ashamed of pain relief. with proper pain management people are able to walk/work/do daily activities and get back a good chunk of quality of life.

remember, you've two culprits working against you. RA pain is bad enough...but throw Crohns joint pain on top...it's hell. i wish it were just one thing.

take care alice. 


Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


Alice1338
New Member


Date Joined Mar 2006
Total Posts : 17
   Posted 3/21/2006 6:35 AM (GMT -7)   
Wow, first of all this is great being able to talk to someone else who shares the same problems and understands  tongue  . In all the years I have had Crohn's disease I never talked to anyone else that has it. Although my husband is very sympathetic, he just doesn't always understand what I am going through at times. Now that I have RA too I kinda felt all alone. I appreciate your responses. Curley, thanks for the encouragement with the Humira. I'll give it some time and maybe it will work just as well on me. Erin, yes I do get stressed on the day I have to take my shot and maybe that has something to do with it. I'll try it every two weeks for a while and if I am still having a problem I will ask the doc. to increase the dose. I'm gonna see a pain management doc soon and hopefully he/she will perscribe something better for pain for me. Something longer lasting. Thanks again.

Just diagnosed with RA and have had Crohn's for about 20 years which is very active right now. Have lots of scar tissue in abdomen due to many surgeries-very painful.
Current meds.- Humira 40mg every two weeks, 6mp 100mg, Pentesa 3000mg and B12 injections every 4 weeks. Taking Vicodin for pain which does nothing.


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 3/21/2006 4:32 PM (GMT -7)   
dear Alice,
yeah, it's about time you found someone who "knows" what you're going through! believe me, it will be a big help.  my boyfriend's sister has Crohns (for over 10 years) and when i was diagnosed last summer with it...she was like a Godsend! just knowing that someone is there that just doesn't provide support but WHO HAS BEEN THERE AND KNOWS WHAT IT'S LIKE...is priceless.
 
good move w/ getting a pain management doc.
oh i so feel for you! Crohns disease is bad enough...especially when it's an all day toilet fiasco, leaves you in pain...joints hurt in your back and wrists, and then often flares up the RA joint pain too.
i've noticed that when the Crohns is very active...the RA joint pain gets worse and vice versa.
   tongue AND FORGET about GETTING ON AND OFF THE POT!!  tongue holy moley...i need a crane to lift me some days. it's so rough. but one day at a time.
the Crohns is newer to me than the RA. RA i've been dealing with for about 10 years with the past 4 years at it's worst. pretty disabled now...but i am hopeful for a remission in the future (sooner than later i hope).
hang in there best you can.
are you able to work or get out and all?
 
take care,
erin
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


Alice1338
New Member


Date Joined Mar 2006
Total Posts : 17
   Posted 3/22/2006 5:26 AM (GMT -7)   
Erin,
Was wondering if you are out on Social Security Disability? I am trying to get it now. I already received my first denial letter and in the process of getting an appeal. I have been out of work since September's hospital stay and October's surgery. I am/was the manager of a high profile New York bridge (very stressful job). I really enjoyed my job. Was working in that position for 16 years. sad   Just can't do it anymore. People at work are a little disorganized without me there but they will deal with it, the bridge won't fall down without me, (well no guarantees on that) cool   I don't miss the commute to work, all the morning cramps all the way to work, ya know "sqeezing the cheeks and all, praying for no traffic jams" redface  , in NY that's pretty rare. 
I've always been able to deal with (most of the time) the Crohns at work but now with the RA, pain and fatigue I just can't do it anymore. That's why I am trying for SSD. I only wish it wasn't such a long and frustrating process. It is truly hard on one income now, especially living in NY. I also have two kids in college and two at home. Never a dull moment here, but I still feel down not being able to do what I used to do. I try to get out as much as my body will let me. Not enough for me though. As soon as I get my meds under control I'm sure I'll be able to do a lot more. Well thanks for listening. Let me know how long it took you to get SSD (if your on it).
Thanks, Alice
 
Just diagnosed with RA and have had Crohn's for about 20 years which is very active right now. Have lots of scar tissue in abdomen due to many surgeries-very painful.
Current meds.- Humira 40mg every two weeks, 6mp 100mg, Pentesa 3000mg and B12 injections every 4 weeks. Taking Vicodin for pain which does nothing.


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 3/22/2006 5:02 PM (GMT -7)   
hey Alice,
 
wow, i'm a city girl as well!  went to college @ Mayrmount Manhattan on East 71 St. practically lived in NYC for a few years. i miss it there.
i applied for SSI and Disibility in 2002 when the RA limited my work & school and there was a point where i was unable to walk. i was 21 @ the time...so they denied me of course:"Given your age and education we feel your condition will improve in 6 to 12 months".....yeah OK.
 
the RA got so severe that in May 2005 i had to leave everything. work/school. applied again. now this is with Crohns and a slew of other complications on top & progressively active/severe RA. unresponsive to therapy & i couldn't walk well or even bathe myself, was in bed most days and extreme pain. DENIED! "Yes you do have SOME discomfort...get a desk job...you're not blind...." as a brief synopsis for you. mind you now...i'm on the bowl 6 hours a day, can't shower or dress myself, or even make it to the mailbox, and i'm denied?  that "DENIAL" took 7 months! that's a long time to wait & be denied.
i appealed immediatley in February 2006 and still haven't heard anything yet.
 
it's horrendous what they put you through. i was very independent and made a very comfortable living. for a few months over the summer i had to choose between eating or medicine. no insurance. no income. 
i have medicaid now. which is a help.
living off savings....but dwindling.
i hope you have an easier time. and i hope for myself that i am approved. i have no plan B! ya know?  i believe because of my age they are denying me. i am not well at all...but in their minds they're thinking they'de have to be shelling out SSI/D for 60 years!......the minute i'm well enough believe me, i want my career back.  but what is a person supposed to do when they're with a chronic progressive disease that's getting worse?
like they say in "Angels in America"....."...there's no place in america for the infirmed..." and it's sad, but it's true. 
perhaps if i had a big enough drug problem i would have an easier time getting disibility. but it just seems that when you have a true disibility...you don't recieve it. and the process wrecks you psyche and stresses your body to the max. i went to the SSI office once, and just waiting/sitting there all day actually made the RA go into such a flare that i had to be hospitalized that same night. i should have sent them the bill.
 
the best to you.


Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.

Post Edited (erin kachmar) : 3/22/2006 5:06:10 PM (GMT-7)


Alice1338
New Member


Date Joined Mar 2006
Total Posts : 17
   Posted 3/23/2006 7:29 AM (GMT -7)   

Ah....spoken like a true city girl, like me :-) ....we want and we want it now. Of course we have to be patient and wait for the next denial letter so we can get more stressed out......symptoms flare.....we wind up in the hospital....then a year or two later....we get approved.  yeah  I think that's how it goes.

All kidding aside, I hope you here something real soon....me too. Good luck and let me know how it goes. 

 Thanks again, Alice


Just diagnosed with RA and have had Crohn's for about 20 years which is very active right now. Have lots of scar tissue in abdomen due to many surgeries-very painful.
Current meds.- Humira 40mg every two weeks, 6mp 100mg, Pentesa 3000mg and B12 injections every 4 weeks. Taking Vicodin for pain which does nothing.

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