confused- Crohns arthritis, polyinflammatory arthritis? RA... Remicade...

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Flaminguts
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Date Joined Dec 2004
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   Posted 2/6/2007 5:30 PM (GMT -7)   
Okay- I have been through this drill before and I am still confused. I have still not gotten an official diagnosis on my joint problems, well my Rhuemy did say it is polyinflammatory arthritis- which when I looked up on the net said that it is basically RA or other form of inflammatory arthritis. I think she does not know what to call it because of my Crohn's disease- she has mentioned this as being Crohns related arthritis. Which one is it? Well normally I wouldn't care too much but I need to have an offical diagnosis to give to my supervisor to get my job changed- so I can get an office position with less hassle.
 
Seems Like I should have and official diagnosis. Especially now!
 
Have any of you had trouble getting a diagnosis- I am pretty sure I have RA- I have everything except RA nodules- I am not sure about that yet (I might have one, the back of my arm) I have had to walk with a cane for a few months lately- it makes life really tough.
 
Now that I am on Remicade things are getting better- I just wish I could get a solid diagnosis- my Crohns diagnosis was not as tough as this! I am confused why would this be so hard to get a real diagnosis- don't you just need a to meet a # of the criteria specific to RA to be diagnosed?
Diagnosed Jan 25th 2004, Resection Jan 25th 2005, trying to keep this disease at bay, taking Imuran, Prozac, Methadone, Phenergan, Lots of vitamins. If you want to know more about me go to my MySpace page http://www.myspace.com/131555682
"History does not long entrust the care of freedom to the weak or the timid"
 Gen. Eisenhower


Marius123
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 2/6/2007 6:06 PM (GMT -7)   
D-Rule said...
Okay- I have been through this drill before and I am still confused. I have still not gotten an official diagnosis on my joint problems, well my Rhuemy did say it is polyinflammatory arthritis- which when I looked up on the net said that it is basically RA or other form of inflammatory arthritis. I think she does not know what to call it because of my Crohn's disease- she has mentioned this as being Crohns related arthritis. Which one is it? Well normally I wouldn't care too much but I need to have an offical diagnosis to give to my supervisor to get my job changed- so I can get an office position with less hassle.
 
Seems Like I should have and official diagnosis. Especially now!
 
Have any of you had trouble getting a diagnosis- I am pretty sure I have RA- I have everything except RA nodules- I am not sure about that yet (I might have one, the back of my arm) I have had to walk with a cane for a few months lately- it makes life really tough.
 
Now that I am on Remicade things are getting better- I just wish I could get a solid diagnosis- my Crohns diagnosis was not as tough as this! I am confused why would this be so hard to get a real diagnosis- don't you just need a to meet a # of the criteria specific to RA to be diagnosed?

There is prety much official diagnosis which is called - 'arthritis associated with IBD' many calls it 'Crohn's arthritis'. So you don't necessarry mean to have RA.... of course you may have RA...but it is not necessarry to have exactly RA if you have any joint probs. RA matches special  criteria for diagnosis. The docs knows.... that's what i want to say.


Official dx, but I have doubts: chronic reiter's syndrome (1yr and 6 mnths).
suffer form occasional conjuctivitis outbreaks, mild arthritis, also showing some short lived mild aches all over the body

Post Edited (Marius123) : 2/6/2007 6:16:32 PM (GMT-7)


erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 2/6/2007 10:11 PM (GMT -7)   
did you tell your doc that you need just a DX for work? i know from personal experience that if you tell the specifically what you need it for...they can just write in the difinitive DX for any work papers...even if the DX is "pending".

umh yeah... this sucks. it's medical limbo.

when a person has more than one AI disease...it's so messy. the lines and boundaries of where one disease starts and the other ends is so unclear.
so there's no Rheumatoid factor present?
i think there should be a whole new category for inflammatory arthritis that co-exists with Crohns disease. so many times a person will have RA and Crohns or some other type of IBD.

if i were you...i would talk to the doc and just tell em' "look, i need a definitive DX for the paperwork & it can't be vague."

but i hear ya, after years and years you just want a freakin' "NAME" for what's going on! it stinks that all we get in return sometimes is "well it doesn't really matter because all the treatments are basically the same anyway".
i wish you luck on this one.
erin
Arthritis Forum Moderator
Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures (under control!). MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
Meds: Remicade infusions 300mg Q3weeks; Intra-articular knee injections; Arthrotec; 6MP; Mesalamine 4Grams; Prednisone; Entocort; Meclizine; Augmentin; Reglan; LidoDerm; Diazepam; Restaril; Dilaudid. 


sclifton
New Member


Date Joined Dec 2005
Total Posts : 18
   Posted 2/7/2007 1:39 PM (GMT -7)   

I read your post with much interest. Was dx with Crohn's about 18 months ago, have been on Remicade a little over a year.  I have an appointment with Rhuemotologist at 8 AM tomorrow. Last week I saw Orthapedic because of my feet (they hurt so much I can hardly walk); in the last year it has gotten where I have sooooo much trouble walking - I'm in pain all the time, cannot walk barefoot at all.  He says it's definitely "some kind" of inflammatory arthritis and wants me to be checked out.  It's mostly my feet, hands and neck but I am beginning to feel it in my ankles and knees. And, can it affect my muscles too?  They feel sore all the time... Is that a normal progression for this type Arthritis??  Any, why has the Remicade not helped? I am not very familiar with RA or it's symptoms.  Any website's that would be good for me to visit?  However, I have gotten a lot of info from this site.

The other thing I am wondering about is the "RA nodules", what is that?  And, where do they appear?  I have been having some small 'bumps" that come up on my hands, feet and arms that itch me to death.  I scratch them until they bleed, then it forms a small scab and it stops itching...I haven't been able to figure out what it might be.

One more thing, I have been to another Rhuem a few months back and she dx fibromyalgia and gave me Tramadol.  I take 1/2 of one each night before bed (she had prescribed 1 or 2 - Yikes made me sick to my stomach)  do you think it could be an allergic reaction to that??

thanks for any light you can shed on this for me.....  yeah


Flaminguts
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Date Joined Dec 2004
Total Posts : 962
   Posted 2/9/2007 4:22 PM (GMT -7)   
Erin K--

Thanks for your advise about the diagnosis. I am always really upfront with my doctor about everything and what I ended up doing is exactly what you said. I wrote her an email saying that "I am confused about what to 'call' my arthritis, I need to know exactly what the medical terminology for your diagnosis is"

It worked and now I am much less confused. I have a really good doctor, she treats me very well and does everything to help. I think that even though I have some medical training myself, that the terminology of a diagnosis can be very confusing sometimes- it is difficult to know what to 'call' you problems especially because it is difficult to know exactly what the problem is- even after tests, blood, xray, MRI... it is still very hard to tell what it is for sure.

She told me that her medical opinion is that I have Spondylitis (sp?) and more specifically what Marius123 said- Arthritis related to IBD. She said that this is the actual diagnosis, and that Arthritis related to IBD is a subcategory of Spondylitis.

I am feeling better just to have that answered. It does make a difference to know that you are being treated for something specific I think, in stead of a doctor making a generalization.

Thanks!!

Casey
Diagnosed Jan 25th 2004, Resection Jan 25th 2005, trying to keep this disease at bay, taking Imuran, Prozac, Methadone, Phenergan, Lots of vitamins. If you want to know more about me go to my MySpace page http://www.myspace.com/131555682
"History does not long entrust the care of freedom to the weak or the timid"
 Gen. Eisenhower


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 2/10/2007 9:11 AM (GMT -7)   
hoorah!
you tell em'!
Arthritis Forum Moderator
Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures (under control!). MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
Meds: Remicade infusions 300mg Q3weeks; Intra-articular knee injections when needed; Mercaptopurine 50mgQD plus 75mg weekly; Mesalamine 4GramsQD; Prednisone 20mgQD mantainance; Entocort 9mgQD; Meclizine; Augmentin; Reglan; LidoDerm Patches; Diazepam 5mg for AS back spasms; Restaril; Dilaudid 4mg tabs for pain. 


Keah
Veteran Member


Date Joined Nov 2003
Total Posts : 7314
   Posted 2/15/2007 7:25 AM (GMT -7)   
D, I'm glad you got her to be more specific. My Rheumy also gave me a bit of hassle with a specific Dx. I wanted to know exactly what he was going to call my arthritis. He basically said the same thing yours did. I have Spondyloarthropathy (SpA) and it is most likely the result of CD. He expects that in the future my official Dx will be changed to AS, as the disease progresses, but for now, I don't have any actual fusion and I test HLA-B27 negative, so we'll just stick with SpA.

All the other names - Reactive Arthritis, Enteric Arthritis, Crohn's Arthritis, etc. are really just a matter of semantics and fall into the SpA catagory anyway.

I'll be getting my loading dose of Humira next week and I'm hoping it will get me into remission from both CD and SpA. The real gold standard for treating SpA is the biologics, so I'm hopeful that I can get my life back soon.

You can find a lot of great info at spondylitis.org. I hope you find relief soon.


Keah a.k.a. Wormy
 God helps those who help themselves.
Please help us support this invaluable forum.


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13473
   Posted 2/16/2007 1:31 AM (GMT -7)   

Hey Gang,

Ok, my 2 cents, I am like Deckie, give me a dx and quit dancing around & tossing dx's out left & right. GI and I were talking a couple weeks ago while I was in the hospital, humm, well sometimes I wonder if you have Lupus, its obvious you IBD arthritis. But no real meaningful dx. We all know when that pain hits, it so much different than the usual pain. I know the difference of the OA pain that have. I have found mine to be unrelenting and pain meds really do not take care of it. Keep in my I have this implanted pain pump, plus 2mg of Dilaudid for BT pain. When it hits all I want to do is cry. Its like its got to run its course and then be done with it. I honestly feel when this is going on that the body is attacking itself. Recently PCP sent me for blood work, tested positive on ANA and an elevated CEA. He did not know what the CEA was. So, I get to see a rheumy the middle of next month.

Was at ER couple of weeks ago. Bad diarhea, stomach pain, pain in my back and trouble breathing. Did nothing for me, except try to push IV steroid shot on me and a script for Medrol Dosepak. I do not tolerate steroids, I go into congestive heart failure on them. Oh yes, this er dr knew all about it, but chose to pretend I knew nothing. For nothing wrong with me, the following day my gi had the er dr in the small town where they are, to admit me. I spent 8 days in there. I don't mind telling ya, I was one sick puppy. Turns out I had a bacterial infection in my colon, COPD kicked up and a kidney infection from hell.  I came home with oxygen, can't tell ya the difference its made having it too. Not real happy about dragging a tank around, but guess what, I sure am breathing easier. In the process of seeing a pulmonary dr. In the middle of all of this, I am trying to find a new PCP. I learned the hard way, the clinic I have gone to for at least 10yrs, none of the drs have hospital privleges which means its up to an ER dr to admit me and then have to bring drs in that know nothing about me. Do you have any idea how hard it is to get admitted. ER dr was not interested in the fact I have cd he only wanted to push steroids on me for the COPD.

Hope all are well as can be. If anyone has any input for me I would really appreciate it. Oh, did get an x-ray report mailed to me from ER, severe fatty liver infilltration, according to recent reading here not uncommon in folks with cd. Hugs to all, Susie

 



momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 2/16/2007 10:04 AM (GMT -7)   

D-Rule,

I am also a mystery..I have all the symptoms of RA, and then some, now have a strange rash on my back even.  I have been seeing my rheumy for 15 months now, and the last time I left to check out, I looked at my "diagnosis" and it said inflamation unspecified.  My RA testing has came back negative twice now.  Although he is treating me with Plaquenel.

It is disheartening when you don't know what is wrong with you! I have had trouble getting the right medication, sometimes my rheumy doesn't really understand how painful my flares are since my testing is always negative.  I think if I was positive for RA and had the flares, it wouldn't have taken this long to finally get something like the plaquenel.

Straydog mentioned the Medrol dosepack, and I have had that one time, and that is the only medication that made me feel compeletly normal,even if it was only for a couple of days!!  I asked for another one, but nope eyes How about finding a medication that works like the Medrol that I can use everyday? that is what I would like :-)

Sometimes you just have to say it like it is...I was supposed to go back for a checkup on Jan 24, but thought I would give the plaquenel plenty of time to work, but it's getting ridiculous! I finally called and am going next Tuesday, I have had enough of my unspecified inflammation.  I have had this for 15 months and in this whole time, the only medications I have tried are plaquenil, and the usual NSAIDs.

If my rheumy can't help me or doesn't know what is wrong with me, hopefully he can tell me, or send me to someone who can. 

Just know you are not alone!


Keah
Veteran Member


Date Joined Nov 2003
Total Posts : 7314
   Posted 2/16/2007 2:20 PM (GMT -7)   
Mom, have you had an ANA test? Just curious about that rash. Also, have you tried any new medication recently that you could be reacting to?

I tend to agree with you. You need a real Dx. Just knowing what is wrong can take you a long way, if not physically, at least mentally. I was having gut trouble for 20 years when I was finally Dx with Crohn's. Getting that Dx meant I could get real treatment and stop having the MDs doubt hat I was sick or think that I only wanted narcotics.

While you are searching for a Doc to get you that Dx, I'd highly recommend that you get yourself set up with a Pain Mgmt Specialist. It's so nice to have an MD who is only concerned with my pain. I've had the best results thanks to him and the decision to go to Pain Mgmt was the best decision I ever made.

I hope you find answers and relief soon.
Keah a.k.a. Wormy
 God helps those who help themselves.
Please help us support this invaluable forum.


Ducky
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Date Joined Mar 2005
Total Posts : 3199
   Posted 2/16/2007 10:52 PM (GMT -7)   
Hey D - how are things going? Any luck?

Mom - how are you?
Moderator of Arthritis/Epilepsy Forums
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea
 


Flaminguts
Veteran Member


Date Joined Dec 2004
Total Posts : 962
   Posted 3/6/2007 6:42 PM (GMT -7)   

Hey Ya'll

Sorry Ive been AWOL for a while but I have been really busy and really tired most of the time now. I have started a small business with my best friend from college. It is almost ready to launch.

As far as my illness, nothing too spectacular is happening. I am taking the Remicade and it does make a difference, and while it is very helpful it is still not a 'cure'. But it does make me feel better. Hopefully it will fade away for a while on its own now.

I just began the process of changing jobs, something I should have started a long long time ago but was too scared. I alwasy wanted to be a sailor and I didn't want to lose this part of my life, but given the fact that I have a hard time even walking on most days, I think it is time to try something new. So I put in for a transfer recently... it will take a while to find out what happens from here. One can only hope...

I do have half of my MBA completed. SO... maybe they will get me a good business job.

I hope everyone here is doing okay!


Diagnosed Jan 25th 2004, Resection Jan 25th 2005, trying to keep this disease at bay, taking Imuran, Prozac, Methadone, Phenergan, Lots of vitamins. If you want to know more about me go to my MySpace page http://www.myspace.com/131555682
"History does not long entrust the care of freedom to the weak or the timid"
 Gen. Eisenhower


bluemeanies
Veteran Member


Date Joined Jun 2004
Total Posts : 1372
   Posted 3/8/2007 6:55 AM (GMT -7)   
Good luck with the job change, I hope it turns out great.
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