multiple drug allergies/serum sickness?

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JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/19/2007 3:29 PM (GMT -7)   
Just wondering if anyone else has had problems with this? 
 
It started with Remicade (Infliximab) which I had a delayed reaction to (serum sickness) but I couldn't get any of my doctors to believe me (GI or Rheumys).  I finally had to go see a specialist who was involved in the Remicade research, who was 4 hours away and very expensive, to get my answers. 
 
Now it looks like it's happening again with 6 mercaptopurine, the same exact symptoms and of course my doctor (GI) knows nothing about the drugs he prescribes and doesn't know what to do. Of course I'm going to stop taking the drug, see what happens, but 2 drugs now, not related, it's starting to scare me. 
 
I'm going to go to an allergist, but I'm not sure how much she'll be able to help me as I went to her before for my Remicade reaction and she just gave me pre-meds and said to keep taking it.  
 
Now my doctor (GI) wants to start me on Methotrexate (which really scares me although I know a lot of you are on it) but the possibility that I may have another reaction scares me to death.  I've decided I'm not going to start taking it until I get some answers.  I'm kind of scared though, my GI has me scared to death about my Crohn's disease, and all the surgeries I've had to have.  Wants me on a maintenance medication no matter what. 
 
My reactions have been migrating joint pain, starting in the fingers, moving  to the wrists, elbows, ankles, knees, feet.  When I couldn't get any of my doctors to believe me about the reaction to the Remicade, it ended up being the most excruciating pain I'd ever been through, and even once I stoped the drug it took months to go away. Now it's starting all over again. 
 
Anyway, I was just wondering if anyone else has been through this, has any pearls of wisdom or recommendations.
 
Thanks for listening.

Judy
Crohn's Disease   
Too many surgeries, ileostomy6MP for maintenance.
 
 


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 11/19/2007 4:43 PM (GMT -7)   
Judy, although my reactions to the medicines have been different to you. I have still reacted to exactly the same drugs. Remicade
put me into anaphlaxis, Imuran gave me deep green vomiting and now pancreatitis from 6mp.
I'm wondering if maybe it's the make up of these auto immune drugs, that our bodies naturally fight against. Or is it our own systems
going into overdrive because of our disease. I know I've become sensitive to drugs that I've had in the past with no problem, then all
of a sudden bam!
Did you have allergies before, like hayfever, migraines etc; I did when I was in my teens. Most of them disappeared, but some have
returned. I wonder if because of the other allergies, we are more predisposed to react to drugs now, where others don't.
Whatever the reason, the one thing I know, it makes this DD so hard to treat. My heart goes out to you, this is another blow to your
recovery. Try and keep your chin up girl, I'll be thinking of you.
darn this is so unfair....
Vicky

Too many years with CD
Two bowel resections, several obstructions.


Laughter is the brush that sweeps the cobwebs from our hearts


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/19/2007 5:01 PM (GMT -7)   
Hey Vicky,

I think you're right. Either the disease itself or the drugs we've taken for years is messing with our immune systems and it probably manifests differently in everyone.

I never had allergies in my life before, still don't that I know of. Except for the CD, I've always been very healthy (except maybe for mentally, lol, especially lately).

The worst part was that I was afraid to tell my doctor, he didn't really believe me last time until Dr. Targan confirmed it. This time he really doesn't know what to do either. I told him I have to stop taking the drug, I can't let the joint pain get as bad as last time, sigh.

This is really just one more thing to get through, hopefully stopping the drug will stop the pain. And of course my tests all came back fine, nothing shows up, lol.

Hey, when are your tests? Is your pain any better? I wonder if your pain will get better now you're off the drugs? I'll say a prayer for you.
Judy
Crohn's Disease   
Too many surgeries, ileostomy6MP for maintenance.
 
 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/19/2007 6:53 PM (GMT -7)   
Hi Judy Seems you are still having med problems. I have had problems with body pain since I started getting treated for Crohn's .I was on Rem. ,Imuran, and Pred. I had my toes cutling (but not on ice) ha ha .Fingers curling too .Bad pains in butt ,leg pains that I needed a chrutch for short periods. Yesterdsay I had the toe thing going on and I am supecting it might be sugar related as I ate some cookies just couldn't help it I guess. I figure the toe thing could be stress to as I was thinking of something stressful at the time. Who knows for sure as I am only on Pred. now for the last couple of months. Maybe it is Arit.. I don't know as I did have a frozen shoulder a few years back. I hope your DR. can figure out what is going on with you and that things don't get as bad. Have you gone to a Dr. that specializes in Arit.. ? Keep in touch as we are waiting to hear how you do. lol gail

TRAE2266
Regular Member


Date Joined May 2006
Total Posts : 29
   Posted 11/20/2007 6:57 PM (GMT -7)   
I have had the same med problems. Remicade was wonderful, until liver enzymes went thru the roof, induced lupus etc. Then took Imuran, it cause terrible pancreatitis so off that and back on 6mp....volitile vomiting.....It has been determined by my GI, who is Remicade specialists (involved with the research), that I can not have 6mp, or and future TNF's (Humaria, Enbrel). It obviously has something to do with how the liver, pancreas reacts to these immunosuppressant drugs. I also have AS so I too have severe back, and joint pain....especially my ankles. I currently take no meds....none left to take. The people at the Remicade research say that usually once you have a reaction to a TNF med, you will generally develop allergies to other meds as well??????? This is what has happened to me. Tried to go back to maintenance meds after Remi reaction....but now allergic to all of them.
41 y/o female. CD for 4 years.  Have taken Asacol, Prednisone, Colozal, Imuran and Remicaid and Humaria.  Only effective one was Remicaid until I became toxic and having elevated liver functions, ANA = 525 and remicaid induced Lupus.  Now, I can't take anything.


tinglebell
Veteran Member


Date Joined Apr 2007
Total Posts : 531
   Posted 11/20/2007 7:38 PM (GMT -7)   
I, like Gail, had migrating joint pains and that is why I am on Humira. Prednisone controls the joint pain, but I have osteoporosis now and the docs want me off of it. I have been on humira 1 month now. Loading dose, plus 1 maintainance dose, and I feel much better so far in the athritis dept. Less pain med. I was on remicade from June to August and it did nothing but give me chest pain, deplete my B12 and ?maybe bile duct problems. I am going to start a thread on that shortly. But I am curious as to how they diagnosed serum sickness, as opposed to arthritis. For me there was no med interference when it started in my fingers last Jan.
DIANNE
Diagnosed at age 19 with CD.
3 small bowel resections, 1 for perforation, 2 for strictures 
 


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/20/2007 10:39 PM (GMT -7)   
Tinglebell,

The diagnosis is tentative until you stop the medication, then when the symptoms stop, you know for sure (although the longer you're on the drug, the longer it takes for the symptoms to dissipate, it took 4 months after I stopped the Remicade).

I've never had any arthritis pain before in my life (except for maybe a twinge or two), and I've had this disease for most of my life. I also had the Remicade antibody test and my antibodies were extremely high. There's also a whole time line you go by. Second exposure to the drug along with delayed reaction, the nature of the pain meaning location, being migratory, etc. I was told by the specialist that my symptoms were classic signs of serum sickness and to get off the drug. It worked, the pain went away.

Trae,

I'm still doing research, and may have to go see my specialist again, but I have the feeling this all started with Remicade. I was leery of going on the 6mp because my liver enzymes have been all over the place, but the funny thing is that right now they're normal, go figure.

I ordered a book I found that was co-authored by my specialist (Inflammatory Bowel Disease from Bench to Bedside, Second Edition, a little light reading while I'm sitting with my father-in-law during Chemo tomorrow, lol), hopefully it will have some answers in it, if not, I'll have to bite the bullet and make another appointment with him (after I mortgage my house to pay for it, lol).

I'm going to go to an allergist also, but the tests won't necessarily show a reaction, the only way to see it will be to take the drug in a controlled manner and I'm not sure I want to do that. I have seen research showing that it's possible to desensitize to 6mp, but not sure what that entails and I may be better off just trying the Methotrexate.

This is so frustrating. The only other thing I've ever been allergic to is IV Iodine, and that was a reaction I had 30 years ago, nothing since.

I long for the good old days when GI's didn't want to see me in between surgeries, when remission was a break from the doctors. Now we know better, we know I should be proactive, try to prevent another flare, but my body won't cooperate.


Judy
Crohn's Disease   
Too many surgeries, ileostomy6MP for maintenance.
 
 

Post Edited (JudyK89) : 11/20/2007 11:03:26 PM (GMT-7)


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/21/2007 9:55 AM (GMT -7)   
Hi Judy Methotrexate is not recommened for people with liver problems. Do you mind if I ask if you have any large bowel?Just wondering what you have left to work with in there. Have you done any reading on mellenium? Would like to read more about it myself.How is the Father in Law doing with his chemo treatments? Keep researching you might come up with some idea. Are you going to be replacing the 6mp with pred. ? What is your Dr. saying about it? lol gail

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/21/2007 8:51 PM (GMT -7)   
Gail,

I don't have any large bowel left, only about 8 feet of small. I read up on Methotrexate, and I'm not thrilled about it, but 6mp isn't recommended for liver problems either. One of the problems is we're not sure if I have liver problems or not, probably won't know unless or until there's damage.

Never heard of mellenium, will have to look it up. I got the book I ordered, lots of info, a little overwhelming so far, but good info. It was printed in 2005 so is a little dated regarding the latest drugs, but very comprehensive.

No, I won't replace the 6mp with prednisone (and I won't go back on pred for the joint pain, it didn't work for me last time). I'm supposed to be on maintenance drugs and I'm a firm believer that prednisone shouldn't be taken long term, I feel I'd be better off with no drugs. We're still not sure what the abdominal pain was all about, but it's mostly gone now, I'm wondering if it was just some healing that I was going through from my surgery. My doctor wants me on a maintenance drug, but I'm not sure the risks are worth it, and up until 2 years ago both 6MP and MTX hadn't been proven effective maintenance drugs after 2 years post op, but I'll keep researching.

My FIL is doing a little better. The oncologist is surprised that he's responding so well to the chemo, the percentages were pretty slim. We're hoping to buy him some time to get on a new drug that's supposed to be pretty good (but also with low success percentages), but takes time to work, who knows? He still can't take anything by mouth and is very depressed about it. Not sure if buying time is the right thing if he can't get control of his tongue/throat back.

You're so sweet to ask and to respond to my rants. I hope you're getting your issues under control. I really don't think this is arthritis unless somehow the Remicade caused it. It's also multi-jointed and peripheral which is a little more rare, with no inflammation showing up in the blood tests.

Keep me posted on what the doctor thinks is causing your pains, I hope prednisone works for you.
Judy
Crohn's Disease   
Too many surgeries, ileostomy6MP for maintenance.
 
 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/22/2007 2:26 PM (GMT -7)   
Hi Just wondered if you put a post up for those that have a smaller amount of intestine left and what they have been on for meds. There must be others who have had allergies to the meds. What other meds have you tried ? Just thinking that I would be going to the best hospitals for getting treatment or at least a second opinion .Have you ever made sure your not having a problem with gluten, or at least tried a gluten free diet that in itself can cause inflamation? Hope you enjoy your new book I have taking up scimming over Healing with Vitamins again and there are a few interesting things in it.Keep us up to date what your doing and how you are. Well the darn arth seems to be a part of CD I think. Oh the pred. yah feel like I been on it forever and not doing the best on it. Feels like a sentence by now . Don't mind you ranting at all and hope you talk more often .lol gail

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/22/2007 3:08 PM (GMT -7)   
One thing that I found out is there are 2 types of peripheral arthropathies, Type I and Type II. Type II mainly affects small joints, and in many joints at the same time. Type II arthritis includes treatment side effects which may include the effects of corticosteroid withdrawal, osteonecrosis, AZA induced arthropathy and infliximab related lupus-like syndrome. I have had AZA (6MP) induced and infliximab realated lupus-like syndrome. Maybe this is what I've been looking for. It's a start.
Judy
Crohn's Disease   
Too many surgeries, ileostomy6MP for maintenance.
 
 


Krysta
Regular Member


Date Joined Jun 2007
Total Posts : 340
   Posted 11/22/2007 3:58 PM (GMT -7)   
I have MANY allergies, including meds, environmental, and food. I also have had a reaction everytime I've had my remicade infusions and they stop it, push benedryl, put me on oxygen, wait, and then start it again at like 20/hr. I also am having lots of joint pain, cracking, and some muscle pain after my last treatment 2 weeks ago, and is continuing now.

My GI didn't seem too concerned about it, but I am!
Finally Dx- April 13 2007 (age 26) ilio-crohn's-colitis. Surgeries:appendectomy, cholecystectomy, tonsillectomy, pinidal cyst removed,emergency abdominal surgery for hemorrhaging ovary from burst ovarian cyst, LEEPcervix, emergency abdominal surgery for grapefruit sized ovarian cyst removal, D and C of uterus, lumpectomy of breast.
MEDS: remicade, Asacol TID, protonix, metformin, prozac, wellbutrin, trazodone, multi V, iron, B complex, flaxseed. Vegetarian, leaning towards vegan. no nuts, seeds, or wheat.
Many allergies. Polycystic ovarian syndrome, anxiety, depression, ITP 
Every tool is a weapon if you hold it right ~ Ani Difranco
 
 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/23/2007 6:39 AM (GMT -7)   
Hi So are you researching the meds for CD that don't have the comlpications of Type 2 problems ? Have you had any testing like scans to test if you have any arth.? Was reading about food factors and rheumatoid arth. They have a list of some foods that might trigger it, Milk, wheat, sugar, corn. soy, some people have problems with tomatoes, potatoes, eggplant, paprika, green and red peppers, chili pepppers,.As in CD rheum. arth the immune cells attack joint tissue and cause inflamation. Gee I'am really getting interested in you Judy ha ha . lol gail

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/23/2007 7:11 AM (GMT -7)   
Krysta, if you've had 2 reactions, why don't they just start you out with the premeds? I used to take benedryl (actully I take Zyrtec, doesn't make you sleepy so I didn't need a ride) and prednisone then they started the infusion slowly, at like 10 ml and instead of doubling the dose every 15 min, I added 10 ml every 10-15 minutes (they gave me an egg timer). I found out for me at least, that it was the large increments they raised it that caused the problems and as long as I only raised it 10 ml each time I was fine. You may want to ask them if you can play around with it. I took the meds like that for over a year, but when I stopped taking 6mp, my joint pains started. Now, it looks like the 6mp is causing joint pain also. I really think the Remicade messed with my immune system.

Gail, I've never tested positive for the RA factor, and seriously I've eaten the foods you mentioned my whole life, but never had joint pains until I've taken these meds. The meds are what triggered it, not foods. The research I've found shows swelling of the joints, but no damage (which is good news), it's just the pain I have to deal with. I still want to get another blood test to make sure, and maybe an x-ray, at least of my hands because I don't want anything over looked. I just have to organize my research and find a specialist that will listen. I don't want to go on major meds because of something that is probably self limiting, but don't want to be on NSAID's for any length of time either.
Judy
Crohn's Disease   
Too many surgeries, ileostomy6MP for maintenance.
 
 


Divafreak
New Member


Date Joined Nov 2007
Total Posts : 7
   Posted 11/23/2007 2:52 PM (GMT -7)   
Hello Everyone!
   I am new to the board, but am at a loss for what to do...I started Remicade infusions in September (due to Crohn's Disease that wasn't responding to other drugs like Entocort, Pentasa, Prednizone, etc. I have had 4 now, and they are cancelling my 5th due to a reaction to the Remicade. During the last infusion, I had a horrible reaction, just felt like I was on fire, burning up all over, and felt like I would pass out...like everything was going backwards in a tunnel. They stopped, flushed with saline, and gave me enough benadryl to kill a horse. That's been a month ago. (Four week ago almost to the day) Now suddenly, my Liver Enzymes are through the roof, and I have excrutiating pain in every joint I have it feels like. I don't think recovering from a hysterectomy was this bad. I can't hardly use my hands at all today. Every turn of my wrist, or strike of a finger just feels like I'm going to break a bone. My neck (trouble swallowing/hurting, shoulders, hip, elbows, ankles, you name it, even a severe toothache. I've read people say they had trouble even going to the bathroom, I can fully understand. Trying to put clothes on is horrendous! I have a Rheumatologist, and a Gasterologist working with my primary doctor. They are doing the Lupus test, and the Rheumatoid test, as well as the hepatitis tests. I am positive now that it is a reaction to Remicade! What can I do??? Ugh! This is soooo painful, and they say because of my liver problem not to take anti inflammatory meds, aspirin, etc.
Thank you in advance for any response...I am at the end of my rope! I know I'm not alone, but sometimes it feels so lonely out here!
 
Help!
Diva

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/24/2007 2:09 PM (GMT -7)   
Diva,

My GI suspected Serum Sickness, 2 Rheumy's told me it was impossible to have joint pain from Remicade (can you say educated by drug companies?). Anyway, I finally went to my specialist who said it was classic serum sickness. The good thing is that it will stop eventually after you've stopped taking Remicade, the bad thing is you probably can't take Remicade anymore.

I also had unexplained elevated liver enzymes, I even had a liver biopsy and a special MRI (forget the name again) that were inconclusive. If it helps, my liver enzymes are now normal again.

See my other post to you, I also suspect that this drug has now made my hypersensitive to other drugs, including 6mp. Still working on the research, hopefully I can find a doctor who cares enough to find out.
Judy
Crohn's Disease   
Too many surgeries, ileostomy6MP for maintenance.
 
 


thenay
Regular Member


Date Joined May 2006
Total Posts : 167
   Posted 11/24/2007 2:23 PM (GMT -7)   
I know your not taking prednisone, but I had migrating joint pain in my hands, knees, arm, and feet for a week when I started it and I was screaming in pain and was given oxy to handle it. I'm tapering off the pred now due to sleeping issues, bad acne, headaches but overall my CD is better (and that's all my GI cares about it seems). Don't be afraid of side effects we all get them or most of us do. Some can tolerate, some can't.  I never had arthritis until this yr, and oddly started just before the pred, but it was never horrbily bad until I started the pred but thankfully went away after the first week.

As for an allergy to meds, I would only be concerned if your lips/face swell up, can't breathe, extremely dizzy, etc
Those are the usual effects for an allergy. My doc it an idiot somewhat and I know more than him it seems, also thanks to this forum :)

I don't know too much about 6MP or Remicade as I never taken them but I do hope something works out for you. I know these drugs are tough, and it's quite a rollercoaster ride. Hang on :)


Male DX with CD May 2006 @ age 22, Colonoscopy and SBT
Taking Prednisone 17.5mg (tapering), Imuran 75mg (eventually 150mg I was told), Atenolol 25mg for fast heartbeat and Restoril 30mg for the sleepless nights (thanks Pred!)

Post Edited (thenay) : 11/24/2007 2:29:22 PM (GMT-7)


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/24/2007 2:43 PM (GMT -7)   
thenay said...
As for an allergy to meds, I would only be concerned if your lips/face swell up, can't breathe, extremely dizzy, etc
Those are the usual effects for an allergy. My doc it an idiot somewhat and I know more than him it seems, also thanks to this forum :)

 

Well, for serum sickness for Remicade (and other drugs) the literature specifically states that once you have this type reaction, your chances of having a severe (anaphylactic) reaction are much higher and you should stop taking the drug. 
 
I had both types of reactions, my doctors wanted me to continue taking the drug and I did for quite a while.  After I did the reasearch and figured out what was going on I decided to stop the drug because IN MY OPINION it was not worth the risk or the pain I was experiencing. 
 
Different doctors will have different opinions, some of it based on real knowlege of the specific drug, some not.  The specialist I went to see agreed with my choice.  That was enough for me. 
 
At this time while I'm in remission with no real symptoms (that seem to be CD related), medication causing arthritis (painful, swelling, multiple joints) is not worth it, especially when balanced with all the other possible side effects of the medication. 
 
 


Judy
Crohn's Disease   
Too many surgeries, ileostomy6MP for maintenance.
 
 

Post Edited (JudyK89) : 11/24/2007 2:52:14 PM (GMT-7)


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 11/24/2007 4:27 PM (GMT -7)   
I went into anaphylactic shock with remi, it was my fourth infusion, and as with all my other allergic reactions, no lip, face swelling,
no tingling just Bam!!! I truly believe with this particular "family" of drugs. No one can rely on text book reactions.
Judy I wish you luck with your research. I for one, would welcome some answers, as right now I feel like c***. God Bless.
Vicky

Too many years with CD
Two bowel resections, several obstructions.


Laughter is the brush that sweeps the cobwebs from our hearts


Divafreak
New Member


Date Joined Nov 2007
Total Posts : 7
   Posted 11/24/2007 9:23 PM (GMT -7)   
Thank you to you all for the info...I am sitting here in absolute pain. My shoulders feel as if I have had both sides of my shoulders pushed together as hard as possible. I am hurting in my fingers, toes, ankles, knees, shoulders, neck, jaw, wrists...need I say more? How many of you are shaking your head yes right now?...Is someone researching Remicade? I would love to know more also...Have been googling Remicade in the last couple of days...It's scary when you look at the warnings, and read all of the bad experiences. I feel like I am worse off now than when I started taking any treatments. (I was admitted in Feb. for bleeding, pain, nausea, etc.) at least the pain wasn't in every joint I had back then. I am at the point, that I know several of you have been, where I feel like I've hurt myself more by taking all of the meds., etc. I am fighting the feeling to just walk away from it all....I know I can't, and I am thinking it's time to take charge of this mess, and do my own research...try to learn the safest meds (contradiction of terms) out there. I will pass along anything that I find!
If ANYONE has a remedy for pain that won't affect my liver in a harsh way, let me know?
Thank you all again, very much!
~DIVA~
43 Yr. Old female...
CD (Illium),
Diagnosed 2/07. Symptoms for 20+ years,
Barretts Esophagus
Hiatal Hernia
TMJ
Currently having problems with liver enzymes, off of most meds.
 
DIVA
 


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/25/2007 9:40 AM (GMT -7)   
Most Remicade research now mentions the adverse reactions of migratory, polyarticular joint pain. Some call it Lupus-Like Syndrome, some call it serum sickness-like, now I believe they call it a hypersensitivity or delayed hypersensitivity reaction (depending on when it starts).


For the joint pain, you could take steroids, they say it should help the pain but it didn't for me, although I only had one shot in the doctors office. I took Celebrex which helped more than anythiing else (but not completely, still had to take Vicodin in the evenings when it was worse). It's supposed to be one of the safer drugs for IBD, not sure about the liver.

You really need to have your HACA levels checked (an antibody to the Remicade/Infliximab), the test is called the Prometheus Infliximab HACA test. Some patients (13%) develop low titers of HACA which can be (pre) treated with steroids or 6mp/Imuran.

Have you ever taken this drug in the past? That's usually a sign that you're having a delayed hypersensitivity reaction which are cause by a rapid induction of very high titers of HACA, this happens in about 25% of patients who have taken the drug previously. These patients should not receive subsequent infusions because the high-titer HACA interfere the the TNF binding capacity of Remicade (meaning you're wasting your time and money because it won't work anymore, not to mention the side effects).

I would ask for the test, and make decisions from there. In the mean time, pain management is top priority, but I think that when it gets this bad, nothing's going to work 100%. If you do decide to stop taking the Remicade, it will take a while for the pain to dissipate, could take months. Just trying to prepare you because you're going to need pain management to get you through.
Judy
Crohn's Disease   
Too many surgeries, ileostomy6MP for maintenance.
 
 


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4097
   Posted 11/25/2007 2:28 PM (GMT -7)   
Greetings to everyone on this thread. I am in the early stages of this disease both in severity and meds, an I must admit my heart goes out to all of you with so many complications. I found it interesting to read from my last Crohn's foundation newsletter that originially they started with the least invasive treatments first (Asacol, Entocort, etc.) but within the past few months the thinking is reversed and now they say you should hit CD hard with Remicade, etc. as a first line tx. to stop the spread of the disease. With all of the potential complications of the meds, does this make any sense to you at all?
48 yr. old female, diagnosed with Crohn's Sept-Oct. 2007


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/25/2007 5:23 PM (GMT -7)   
Yeah, I was put on Remicade pretty quickly this time around and started having problems right from the start. I hope that doctors start rethinking the top down protocol with all the new reactions being reported now that more people have taken the drugs.
Judy
Crohn's Disease   
Too many surgeries, ileostomy6MP for maintenance.
 
 


Tommy Green
New Member


Date Joined Nov 2007
Total Posts : 1
   Posted 11/26/2007 6:21 AM (GMT -7)   
I'm in this forum for my wife's benefit. She's the one with this hideous disease. We've known each other for 14 years and I've seen her endure four operations. Now, she's on a bag and is not taking maintenance meds. Steroids are one of the many things she's allergic to.

She's now experiencing joint pain and cramps in her fingers and toes. Reading your thoughts on those things are interesting. Does anyone have a suggestion to stop the cramps? She's done Remicade (several years ago) and her immune system hasn't been the same since. It was supposed to stop the fistulas but she just grew more.

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/26/2007 7:22 AM (GMT -7)   
Hi Tommy Welcome to HW and glad you are here. I rub my fingers and toes when they cramp as soon as it starts. Judy why don't we do a poll to see how many there are that have had joint pain after Rem. I guess the only trouble with that is we were not on Rem. alone but for myself I also was on other meds when I was taking it so how does a person say for certain what is causing the problems .Those that took pred. ,or Imuran with Rem it would certainly be hard to know what is triggering what. We all know that pred. needs to be taken with calcium or at least I think it is supposed to be. I do not have the joint pains I had now ,but who knows if they will return. Certainly might be worth seeing how many of us do have pain in the joints after starting Rem. ALso a factor to consider here is how much damage does the CD inflamation, do to the body with the inflamation and weight lost we expericence as well as the lost to important vitamins and minerals at times when we are sick. . lol gail
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