Cimzia Club Support Group

Crohn's Disease Forum

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Hello! I am new to this forum. I was newly diagnosed with Crohns and went right to Cimzia. Fortunately my insurance is covering it.
I am on my second loading dose and noticed almost immediate response to this drug. I feel so much better and have almost normal energy. I am concerned about the side effects and was wondering how long people have been on this drug and if it is working long term?
I appreciate any information anyone has regarding this medication. For me so far so good.
Thank you so much
 
Hi newway and welcome !
I'm glad for you that the Cimzia is working so well and so quickly- hope it continues for a very long time! :)

My daughter has been using it for a little over 2 years now. It did pretty well for her for a long time, but now it seems it's not so we are seeing her GI doc soon to see what he recommends next.

Be well and hope to see you around the forum!
 
Hello, I'm also new to this! My boyfriend was diagnosed 3 years ago and was put on Cimzia. Lately, it hasn't been working, so they are looking into stronger medicines. It makes me nervous!
 
Don't be afraid of the other medicines (they all have enormous side effect listings) but most of that is for a very small percentage of people taking them. Sorry Cimzia isn't working for your bf but I hope you find a drug that will.
 
i am on my second loading dose, maybe a modest improvement but still taking prednisone and occassional pain meds. I am encouraged, though. My question is that I get conflicting dosage recomm. 400 mg , once a month, two injections. Or a 200 ml injecton twice month. My doc suggests 400 ml once per month, but many folks on line do 200 ml every 2 weeks,,not sure it is big deal, but thought I would get some feedback.
 
Twbuto, how much prednisone are you taking and how are you tapering? I tapered off prednisone prior to starting Cimzia, but the Cimzia hasn't completely kicked in yet so my doc put me back on a low dose of prednisone (10 mg). I'm just curious about what it's like taking the two drugs together. I'll be at the two-month mark with Cimzia next Monday (and all I can say at this point is, thank heavens for prednisone!) I had a little kick from Cimzia with the second loading dose but it didn't last.
 
I'm taking 30 ml pred. Without this amount stomach cramps are severe and muscle cramping is a killer. I will taper down in coming weeks but not real confident as of yet. After dosing is done will you do 400 once a month or 200 twice per month. But having gone through Pentasa, Humara, and way too many pain meds, I'm hoping Cimzia gives some lasting relief. Anemia is the thing that I really have to watch. Iron saturation levels are a struggle, but with regular blood tests and, infusions we are keeping these numbers incheck. Good luck and keep the faith.
 
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Was 30 Mg your high dose on prednisone? How fast will you taper? I am trying to figure out how I will know if relief comes from Cimzia or Prednisone. I have always had good results from Prednisone and would take it all the time if I could.

I'll be taking 400 ML of Cimzia once a month now that I've done all the loading doses. I am eager to see if next Monday's dose is the charm.

I hope you get relief from Cimzia, Twbuto, and soon!
 
Funny you should ask the question of Pred vs Cim. I've been trying figure it out as well. Here is what I've done. 40 ml Pred ,,felt great. Began Cimzia. Tapered each week by 10 ml. In the meantime had my second loading dose of Cimzia Once I began 20 ml Pred , the pains began,hello Vicodin. After a few days, upped the Pred back to 30 ml and began feeling better. I will start tapering again next week to 20 ml and see how it goes. My next Cimzia is in 2weeks. But you are spot on,,how do we know if it is Pred or Cimzia which is helping. I think I need to give Cimzia 3 months to see if it is beneficial ,as I taper the Pred. My Dr. is only marginally helpful. It's amazing how little they know about this stuff. So hope this was helpful,,take care friend and good luck to you and posted me anytime.
 
Hi newway!
I've been on Cimzia for two years now and had no issues. Was worried about all the side effects but have been healthier on it than I was before I started taking it. No colds, flu, or infections and I used to be the first one to catch everything. Maybe my immune system was too hyper?
:ylol2:
 
Hi Cornfieldgal!

That is such great news! I feel really good as well since I have taken Cimzia. My third Loading Dose is this Monday. It is so encouraging to hear that you are doing well!
Thanks so much!!
 
@twbuto, i was never offered a 200ml injection every 2 weeks. I have always done the 2 every 4 weeks. I want to say when I have talked to a Cimzia rep that is what she said the dosage was.

Side note, I would give Cimzia 2-3 months to kick in. I want to say that is when I started to see changes.
 
I do the two every 4 weeks I asked about 2 every 2 weeks but was told the research isn't there to support it being more effective.
 
I have been on Cimzia since March and am losing my hair bad. Don't know what to do, I have a dr. Visit coming up in a couple days and will tell him to do something before I'm bald!!:(
 
don1Jones, I have been on Cimzia for about 2 years now and it is the best thing since sliced bread for me. What you said in your post really scared me for your sake. If your doctor didn't take a TB test and isn't giving you a blood test every three month I truley think with all my heart you need to find another doctor. you also need a chest xray as well. PLEASE seek another doctor I know your not getting the care that you should and deserve to be getting. Please keep us posted. I wish you the very best.
 
I've been on Cimzia for 3 months and my hair is really getting thin and I'm already preparing myself for balding in the the very hear term. Anyone with similar experiences?? And does this lessen as time goes on. Thanks and good luck to all my Cimzia chums.
 
My daughters hair thinned a lot the first few months as well. However, she did not go bald and it slowed down and then stopped. She did take Biotin as a supplement to help tho, and she still does.
Her hair has grown back in and is back to it's normal thickness :)
Best of luck and I hope Cimzia does wonders for you !
 
I'm happy to hear your daughters hair is growing back. It seems that a lot of people losing hair on Cimzia benefit from Biotin. I wonder if the drug inhibits absorption of biotin or decreases its level. I didn't see anything about that when googling but it's an interesting thought.
 
Twbuto said:
I've been on Cimzia for 3 months and my hair is really getting thin and I'm already preparing myself for balding in the the very hear term. Anyone with similar experiences?? And does this lessen as time goes on. Thanks and good luck to all my Cimzia chums.
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You sound like me, Cimzia does not list loss of hair as a side effect,maybe I should call them.
 
My hair was thinning before I started Cimzia from all of my weight loss, but it has gotten so much worse on Cimzia. I'm young, I really don't want to be bald! So frustrating.
 
Essie it sounds like malnutrition and absorption may be the problem. Hair loss on Cimzia is very rare. I would focus more on nutrition as a factor in combatting it.
 
Thanks for the reply. I brought all of this up to my GI and he didn't even bat an eye; he showed absolutely no concern for my weight loss, which has been pretty dramatic for someone who wasn't trying in the least to lose weight. He seems to think I just need to eat more, or that I am losing weight to get attention! I am switching to a new GI next week because of numerous reasons, but will mention all of this to the new doc. I mean, how wrong was it that he didn't even suggest a nutrition shake or simple blood tests to see if I'm deficient in anything?! Anyway, I'm pretty sure the new GI will want all of my levels and stuff tested, so I will ask for some vitamin and mineral numbers to be tested as well.

I would like to start taking biotin, but I have a couple questions. Is there a certain brand that is better than others? Or is it better to use biotin shampoo rather than take supplements?
 
Hi all,

I have had on and off hair loss on Cimzia, but I thought it was just hormones or flares. My gastroenterologist suggested taking a multi-vitamin for hair and skin. I have been taking GNC Hair, skin and nails for over 3 years now. It has a high dose of Biotin and other herbs. http://www.gnc.com/product/index.jsp?productId=13089079 I still went through a period of hair loss after surgery, but this helped a lot when I first started to lose hair. I hope this helps. I have never used the shampoo and didn't even know it exsited.

@ Essieluv--- I am so glad you are finding a new GI. Please make sure that it is one has experience with Crohn's patients. I am so sorry you had a bad experience with your current GI. Good luck to you and keep us informed.

Kit
 
What is the difference between Cimzia and Humira my Dr has not even mention Cimzia he started me on Imuran and had a reaction to that so they started me on Humira its been 3 weeks no real changes I know I have to be patient!!!!
 
lblair said:
What is the difference between Cimzia and Humira my Dr has not even mention Cimzia he started me on Imuran and had a reaction to that so they started me on Humira its been 3 weeks no real changes I know I have to be patient!!!!
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I am not sure what the difference is. They both are TNF blockers, but I think they do it in different ways. Check out the websites for more information. I know this isn't much, but I hope it helps some.

kit
 
Humira and Cimzia are both biologics and anti-TNF agents which work to stop over active inflammation in the body. They are essentially sister drugs and have the same mechanism of action. The difference is the makeup of the medication. It may sound like a small and insignificant thing but some people respond to one drug and not the other.

Humira is taken bi-weekly but Cimzia can be taken bi-weekly or monthly.

This is a nice article about biologic therapies: http://www.ccfa.org/resources/biologic-therapies.html
 
I need a little advice guys. I have been on Cimzia for thirteen weeks. In all of this time, I have seen no improvement; in fact I actually feel worse. I have numerous side effects, ranging from unexplained bruising to tingling in my arms to worsening joint pain. Not to mention I feel like I am starting to develop an allergy to Cimzia. Would it be completely unreasonable for me to ask my doctor if I can stop Cimzia? It's just that I have been flaring for two years straight, and really want to go in remission soon, but I don't think Cimzia is my ticket at this point. I would really appreciate your input.
 
I think you definitely need to discuss with your physician especially some of the side effects. I don't remember how long it takes to feel some changes with Cimzia, but I am pretty sure after 13 weeks I could tell some difference. Good luck to you and I hope you feel better soon. It sucks to feel sick!
 
countrycoffeehouse said:
I did the start up shots then we lost our insurance and I have to stop when I was due for my 4th shot... hence the crazy flare I am in right now.. I hope to have insurance soon so I can restart it..hope that is an option
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Hello, I ready you post and I am also on cimzia, I wasn't sure if my insurance would cover it, so I was told about complicity program and they have a co-pay assistance program. I was able to get it. How ever there is also a program where you can get the starting injections free. My gi docs office cimzia rep told they about it. Complicity #1866424246942.
I hope this helps you
tango123
 
I have a question....

I've been on cimzia for the past 2 yrs...although I was very happy I had no side affects and was pretty much healthy (meaning no colds or flus)... I still had flare ups and my disease hadn't changed much for the better. As a matter if fact I get more constipated now than I did befre... See, my flares come from chronic constipation rather than the diarrhea. Well, I take it monthly two shots on the thigh and I'm due right now. Problem is I noticed a pattern or coincidence... Last month I took my shot and 5 days later I'm suffering a horrible flare up. Same thing couple months befre.... So finally the question....Does Cimzia cause constipation???
 
Crohnzie Girl--I have been on Cimzia for over 3 years. I consider myself in remission now (after surgery), and I don't notice constipation with Cimzia. I notice it more with not drinking enough water and not eating enough fruits and vegetables. I also will put in there I am very consistent with taking probiotics. Light exercise also seems to help me. I don't know if this will help any, but I would bring it up to your physician and see if he/she has any ideas. It does seem like you have tried a lot of medications. I am sorry you have been having such issues. Good luck and keep us posted.

Kit
 
Crohnzie Girl said:
I have a question....

I've been on cimzia for the past 2 yrs...although I was very happy I had no side affects and was pretty much healthy (meaning no colds or flus)... I still had flare ups and my disease hadn't changed much for the better. As a matter if fact I get more constipated now than I did befre... See, my flares come from chronic constipation rather than the diarrhea. Well, I take it monthly two shots on the thigh and I'm due right now. Problem is I noticed a pattern or coincidence... Last month I took my shot and 5 days later I'm suffering a horrible flare up. Same thing couple months befre.... So finally the question....Does Cimzia cause constipation???
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Constipation is a listed side effect of Cimzia, it's quite possible you have it worse when the full dose is in your blood stream.

http://www.drugs.com/sfx/cimzia-side-effects.html
 
Thanks guys! Kit thanks for the advise. That's the one thing I haven't done is take probiotics. But I try eating healthier lots of fruits n veggies. I could always drink more water...however I don't excersice at all! Lol but it jus seems odd that since being on it for 2 yrs I've gotten worse with the constipation. And I was eating a lot more junk food n processed foods back then.. thank you NGNG, I want to talk to my Dr but I don't want to sound like I'm jus making excuses. With the info u posted I feel more comfortable speaking to him. :)
 
Can anyone tell me how long it takes for Cimzia and sulfazine to work on knee pain. My Crohns does boy bother me as much as the knee pain does. It really hurts to walk. I took my second Cimzia injection a week ago and started on sulfazine a week and a half ago. This past week I took eight 500 mg a day. Is there other medication that will help more? :stinks:
 
It took about 6 months for the combination of LDN and Cimzia to help my joint pain. That is always my biggest issue too. My GI says the LDN helps with the joint pain the most. However, I still get joint swelling a couple days before my injection sometimes.

Best wishes and hope you start feeling better soon!
 
Sorry...I forget we talk in code sometimes :)

It is low dose naltrexone. Check out the boards on here about it. LDN is not technically approved by the FDA, but there is a lot of evidence for its use in autoimmune disorders. Some people have a hard time getting LDN prescribed for them, but it was the first thing my GI recommended.
 
Essie, you still have info on Cimzia, so please stay in. I hope the 6mp works well for you! Sorry Cimzia didn't work out. Take care.
 
Aww, I'm curious to kno how u guys react to the new drugs. I'm still debating on stayin on Cimzia...I was on 6mp for awhile I thought it helped but then the Dr switched me to Humira. Once on Humira I developed medically enduced Lupus. It was horrible. However, I saw in commercials recently Humira for Crohns. I wonder if this is an updated better version or still the same as was givin to me back in '06.
 
NGNG, I hope Remicade helps you and you go in remission soon!! CronzieGirl and Essieluv so sorry you had drug induced Lupus. Autoimmune diseases are rough.
 
NGNG Gab has also left the Cimzia club and moved on to Remicade recently. She just finished her loading doses this past Wednesday.
We already see a difference in her symptoms :)
 
Thank you kit! Crohns mom I hope it works for Gab. I won't start for a few weeks yet but am
nervous and excited to get started.
 
NGNG, it is always hard for me to start new meds. I get nervous about side effects and then excited that I will feel better. I love your new profile pic!
 
I have been on Cimzia for six weeks now and I am really getting discouraged. I still have diarrhea and incredible knee pain. I am also taking sulfazine and feel nauseous all the time. It was so painful walking into work today. I am really down today. I was hoping for better results.
 
Sorry you are feeling so bad currie sending you hugs. I am at the same point as you been on cimzia for 6 weeks now for the first couple of weeks I felt amazing and was running around like nothing had ever happened but it has all changed. I am still holding out hope as the review date is 12 weeks so it may still all get better, I hope it works for you soon x
 
I've been on Cimzia for 14 weeks and don't feel any better yet but my numbers look good. I am feeling completely run-down and, like Currie, have terrible knee pain. I am going back to the rheumatologist next week about the knee. He said it should get better on Cimzia, but if anything it's gotten worse.

My doctor was originally going to put me on Remicade but insurance wouldn't cover it. The only biologic they'd cover is Cimzia. I hope it starts working soon!
 
Thank you both for your responses. I wish we all were getting some relief! Did both of you always have joint pain? This is new for me. How do you know the knee pain is from Crohns? My doctor felt mine was because I have Crohns and my C-relative protein and sedementation labs were elevated. How did your doctors determine your knee pain was related to Crohns? Do you know anyone that has had relief from Cimzia? Is there a pain medication that helps?
 
I have had joint pain for a long time now but the latest flare up has been the worst. Mine usually comes along with other crohns symptoms but this time they haven't been as bad just awful joint pain. I went to a rheumatologist who diagnosed me with enteropathic artritis after x rays and blood tests, if the joint pain continues it might be worth getting refered just to check it out but hopefully things will start getting better with the cimzia.
There have been people on the forum before who have had success with cimzia but this part seems to be quiet at the moment. I'm sure there are lots of people who have great stories of being on cimzia you just don't always hear them.
 
Can you please tell me the other Crohns symptoms you have had in the past as well as the blood tests you took for your doctor to diagnosis you with enteropathic arthritis. I did see a rheumatologist and he said I also have the same diagnosis. He gave me Tramadol for pain but that does not help. Is there anything you take for pain that helps? Is your plan to stick with Cimzia for 3 months?
Thank you so much for your posts. I am so happy I joined this forum.
 
The other symptoms I have are D, weight loss, passing blood, joint pain and swelling, skin tags, vomiting and loss of appetite. The blood tests the rheumatologist sent me for I think where rheumatoid screen, hlab27 and ANA screen but I was almost 4 years ago now so I there might have been more but I can't remember lol. It was just to rule out other forms of arthritis as there isn't a blood test to confirm enteroptathic arthritis.
Yeah I am going to stick with cimzia a bit longer I am hoping that it is just taking a bit longer to kick in for me, plus I am doing a lot better than I was before I started so dont want to go back to that mess. I struggle with pain killers they send me loopy but I find co codamol prescription strength works the best for pain but makes me feel sick. Having hot baths definatley helps me when my joints are bad. It is a great forum there is so much useful info
 
Currie, the only Crohns symptom I have right now is joint pain. My other joints hurt as well and that's normal for me, but the knee pain is so bad I can barely walk. The only way I know Crohns is active is from what shows up in colonoscopies.

My GI sent me to a rheumotologist for the joint pain. He said the same inflammation I have inmy gut is in my joints and Cimzia should help since it's rxed for Rheumatoid Arthritis. So far it hasnt. The only thing that helps the joint pain is Prednisone. I get relief on as little as 5mg and on 40 mg I could run a marathon and maybe swim from Cuba to Florida. But I can't take that long term so I am going back to the rheumotologist next week to see what's next.
 
LOL! I was on 20 ml of prednisone and did not get much relief. Did the sulfazine help you at all? I am taking 8 pills a day. I am not crazy about the rheumatogist I am seeing now. Can you let me know next week if your doctor has any other recommendations?
 
Hi all. I am sorry you are not having results with Cimzia. I have been on it a long time. I did end up needing surgery in the middle, but back on it again and intestinal symptoms have been good for a year and a half. The only thing i have problems with now is fatigue, bloating and occasional stomach pain if I have overdone it. Hang in there with Cimzia for at least 2-3 months to see if it make a difference, but always keep in communication with your physician.
 
Hi Kit
Thanks for your response. Did you have joint pain as well? If you did is that gone now? I developed a huge hernia with the Crohns resection surgery I had. How long do you have to be off of Cimzia before you can have the surgery?
 
Currie, I was on Sulfa for 20+ years and it kept me in remission during that time. Unfortunately, I developed an allergy to it, and have been bouncing from medication to medication since then, trying to find one that works as well. I'd settle for half as well, at this point.

I will keep you posted on what my rheumatologist says next week.


currie said:
LOL! I was on 20 ml of prednisone and did not get much relief. Did the sulfazine help you at all? I am taking 8 pills a day. I am not crazy about the rheumatogist I am seeing now. Can you let me know next week if your doctor has any other recommendations?
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@currie: The only time I have had joint pain (all over) is when I was first diagnosed and my CRP level was really high. I was only put on Asacol at the time and the joint pain went away and the CRP level dropped. I was put on Cimzia probably 2 years after diagnosis. I was off Cimzia about 2 months before surgery due to an abscess. I don't know what the protocol was for discontinuing Cimzia before surgery. I was blessed with a wonderful surgeon. I have 4 portal holes and a bikini cut. No hernias that I know of. I hope you feel better soon!
Kit
 
Currie, I told you I'd let you know how the appointment with the rheumotologist went so here goes.

He basically told me all my joint pain was Crohns related, and that he wanted me on Remicade. He was angry that my insurance had denied Remicade in favor of Cimzia, and said he would do some arm twisting. In the meantime, I am back on Prednisone for the pain, which makes me happy because it works well for me. It looks like I, too, will be leaving the Cimzia Club and hope to join the Remicade Rangers soon. He said Remicade was the best of the biologics for joint pain because they have more control over dosage.
 
Kiltubrid
Was there a test that he did to confirm that the joint pain was due to crohns? After your last message I contacted my doctor to let her know that it has been almost eight weeks and I am not getting and relief from Cimzia. I have an appointment on Monday but my concern is she will increase the dose or add additional medication and want me to try that for another eight weeks. I hope that the remicade helps you!!!
 
Hello All! Just started Cimzia 2 weeks ago. Felt better almost immediately and started tapering off Prednisone (with doc's blessing)...however, last few days I've been in pain again and feeling tired, as though the Cimzia is wearing off. I'm due for more injections tomorrow (doing the standard loading dose). Just wondering if anyone else had this experience at first...and if things stabilized after being on Cimi for a while.

Many Thanks,

Isabelle
Crohn's
Cimzia
Prednisone

Failed drugs:
Remicade (became allergic)
Humira (crazy immune response)
6-MP (ugh)
Entocort
Pentasa
 
Hello Isabelle I had exactly that happen to me after 9 days I started to feel amazing then after the next lot of loading doses I felt awful and was in a lot of pain. But now I am feeling really good again and I'm still improving I have finished my loading doses now and have done my first single cimzia shot last Thursday and I finished my taper of steroids on Monday. I would stick with it longer and you may be similar to me and need all of the loading doses until it gets better again. I hope it starts to work again soon x
 
Thank you Kayleigh...that is reassuring. I'm just so insanely sick of feeling bad and really, really scared that the Cimzia isn't going to work... So thank you for your message. It makes me think I need to stop worrying and just be patient. So glad to hear you are doing well. :)
 
It is hard to be patient especially when you are in pain and have been for some time. I was really worried too after having it seem to work so well then nothing but it seems to be worth sticking with now :)
 
Isabelle stick with it. Give it at least 3 months to see how you feel. I do remember feeling tired the week before an injection was due, but would feel better the next week. Hang in there and give it a chance. Remember stress will increase our symptoms and continue to take care of yourself even when you feel better.
 
Thank you, Kayleigh and Kit... I'm feeling calmer and less worried now. Bumped my prednisone back up to 25 mgs which has helped, too. Thank you for the reassurance. 2nd injections today.
 
Isabelle is the Cimzia helping you? It will be eight weeks for me and I am still having incredible knee pain. My doctor told me to start taking the Cimzia injections every two weeks and that seemed to make the pain worse. She also put me on twenty ml of prednisone and told me to see an orthopedic surgeon. Does that make sense to anyone?
 
Yes it does. Coming from a physical therapy background. Orthopedists are good with joint pain. They can give you a diagnosis and options to help with the pain. Good luck to you and let us know what happens!
 
Currie, sorry to read you are still having so much knee pain. I hope the Cimzia will start working for you. Even though I am no longer on Cimzia, I am still following your story because our issues seem similar -- at least on the outside.

I'm glad to see someone mention physical therapy here. Does it work for enteropathic arthritis? My rheumatologist attributes my knee pain to the Crohns related arthritis, and said Remicade would be the best treatment for that. Cimzia didn't work for me after three months, so I'm starting Remicade this Friday.

If PT would help, I'd be all for that. So far the only thing that's been effective with the pain is prednisone.
 
Thank you both for your responses! The ortho doctor gave me a script for therapy which I am going to try. She also injected my knees with Synvisc and cortisone and feels that may help too. Past cortisone shots did not but I am hoping the combination will help my knee pain. It has been extremely painful for me and at this point if someone said to eat a worm and the pain will go away I probably would try eating a worm. I am going to start weaning off of the prednisone tomorrow because that is not helping either and I am getting about 20 minutes of sleep a night. I called Cimzia and Humira to get stats on the effectiveness of their medication for Crohns related joint pain. Both drug companies did not have any information on clinical trails for Crohns joint pain. They indicated it has only been approved for rheumatoid arthritis. I am also going to a new doctor tomorrow for a second opinion because I am not convinced my current GI doctor is a good fit for me. The appointment was not scheduled until December but they had a cancellation so I will see him tomorrow. YEAH! Kiltubrid please keep me posted on your progress with Remicade.
 
Currie, I just had a lot of x-rays of the problem joints. I think the rheumatologist used that and the fact that the inflammation in my joints goes away when I'm on Prednisone.

Do you get any pain relief with prednisone? Or have you tried a higher dose? My knee pain completely goes away on 40 mg. On 10 mg (my current dose) it doesn't doesn't go away completely but it's bearable.

My third month I was on Cimzia I had tapered off Prednisone completely, hoping to feel the effects from Cimzia starting up, but no such luck. I could barely move -- not just my knee but my back, neck, feet and wrists hurt. My GI doc told me not to take the 4th month dose of Cimzia until after I had seen the rheumatologist. When I saw the rheumatologist, he told me to stop the Cimzia and to go back on low dose prednisone till I started the Remicade. He had originally prescribed Remicade but insurance rejected it and made me take Cimzia instead. This was administered through GI. The rheumatologist told me he would never have made me wait three months for Cimzia to work. He said Remicade was most effective for enteropathic arthritis. I hope he's right!

If you don't like your rheumatologist, do you have the option to see another one? I changed GI docs three years ago and am so glad I did.

Good luck, Currie!

currie said:
Kiltubrid
Was there a test that he did to confirm that the joint pain was due to crohns? After your last message I contacted my doctor to let her know that it has been almost eight weeks and I am not getting and relief from Cimzia. I have an appointment on Monday but my concern is she will increase the dose or add additional medication and want me to try that for another eight weeks. I hope that the remicade helps you!!!
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hi all... currie, so sorry to hear about your knee pain. glad to hear you're getting some good help.

update: i've been on cimzia for three weeks. had a great first 10 days then regressed and have been in a lot of pain since. in some ways i'm doing a lot better than i was. i'm gaining some weight, have more energy, my muscles no longer feel like wet noodles, my skin isn't flaking off or breaking out, having very little D (that wasn't so much of an issue, though, as my inflammation is high up in my colon and possibly my small intestine, too) so i think there might be some good things happening...however my abdominal pain is almost worse than it was and i'm back up to 35 mgs of pred (boo).
doc says to give it another week then we'll schedule another colonoscopy to see if there's something else going on, like an infection.

question: does anyone know if the extra pain might be caused by my guts starting to heal? it makes a kind of logical sense, right? that as your mucosa heals, your intestines start holding onto and processing your food again in a semi-normal way instead of everything just going right through? i'm trying to understand how the pain could be worse while everything else seems to be getting better. thoughts?
 
Isabelle, I have had a lot of experience with healing gut, but have never felt anything but better. I think the fact that you are having more abdominal pain on Cimzia (and on that dose of Prednisone) is likely why your doctor wants to schedule a colonoscopy if you don't see improvement in a week.
 
Hi all,
Isabelle I am not sure why you are feeling pain either. Please keep us posted and I sure hope it goes away soon.
I like the Crohns doctor I saw today and will stick with him. He said i should do the Cimzia injections once a month instead of two times a month. I also am seeing a new rheumatoid doctor in October. Thanks for your recommendation Kiltubrid. I start PT on Monday and am hoping that will help with the knee pain too.
Lets stay in touch and Kiltubrid good luck tomorrow with your first dose of remicade!
 
Thanks, Currie! I'm glad you like your new doctor. That can make such a difference. I hope the PT goes well. I'm very eager to hear about it, so please keep us posted. And I hope your knee feels better soon. Take care.
 
Thank you Currie and Kiltubrid... After a week of terrible pain, I actually feel better today. I started the Cimi three weeks ago; maybe it's finally kicking in??? Hopefully... I'll keep you updated.

Currie, were you doing 2 syringes twice a month or just splitting the dose and doing one syringe twice a month? Did your doc say why once a month is better?
 
Today is my eighth week on Cimzia and I have always done two syringes at once. Other than the loading dose I only did the last injection after two weeks. My doctor told me to cut back to two syringes once a month because every two weeks really increased my knee pain. The Synvisc injection I received on Monday has really helped with my knee pain.
I was thinking about you this morning Isabelle because I woke up this morning with a stomach pains and thought maybe we just assume that it is always Crohns when it may not be. I am so happy you are feeling better and I hope you don't have to have a colonoscopy!
I have another question. Is it okay to stop taking prednisone if you started it seven days ago. I am on 20 ml.
 
@kiltubrid---quote "I'm glad to see someone mention physical therapy here. Does it work for enteropathic arthritis?"

I actually have never heard of enteropathic arthritis. We normally treated osteoarthritis and rheumatoid arthritis. Physical Therapy doesn't make the arthritis go away it just can help strengthen and stretch around the area to help decrease irritation. We can also teach how to mange pain. Sometimes other measures are needed, so it is good to keep in contact with the physician.

I just found this website that defines enteropathic arthritis. http://www.spondylitis.org/about/ibd.aspx
It states that is it specifically related to IBD. I just searched it and didn't check for reliability of info. Just informative and interesting!
 
Currie, don't ever stop Prednisone cold turkey without consulting your doctor! Even when I've been on just 10 mg for a short period, I have to taper 2.5 mg / week.

Kit, thanks for the PT info. I will ask my doctor about it because I think it might help. I have a lot of pain in my right knee, and my left leg is much weaker than my right leg, so I suspect I am overcompensating with the right leg (especially on stairs), and overusing/tiring out my right knee. It feels to me like if I could strengthen my left leg through PT it might help cut the pain on my right knee.

Isabelle and Currie re: abdominal pain: Currie, I'm not sure if you are a woman but if you are, do you notice any association of pain with your menstrual cycles? I had excruciating abdominal pain when I was younger, and it turned out I had endometrial tissue adhered to my colon and wrapped all around it. (My gynecologist discovered this during a laparoscopy to remove fibroids.) Depending on where I was in my menstrual cycle, it would swell and squeeze my colon causing severe Crohns-like pain and diarrhea. I ended up having a complete hysterectomy when I was 35 and the pain went away completely. Now when I have abdominal pain and / or diarrhea, I know it's Crohns. Luckily I don't have it nearly as often. It was a hard decision to make to have a hysterectomy so young, but I am so glad I did it. It has made life with Crohns much more bearable. There is more discussion of this issue in the Women Only section of the Forum where menstrual cycles, pregnancy, hysterectomies, etc are discussed. (I guess these subjects skeeve men or something.)
 
Thanks Kiltubrid! i am a women and will check out the Women Only section. How did the remicade go today? How soon before you get some relief?
 
Thanks, Currie! The Remicade infusion went really well. I didn't have any kind of allergic reaction, and actually think I am feeling better. My knee still hurts a bit (I'm still on a Prednisone so it's been bearable) but overall I'd say I feel lighter and have a bit more energy. On the other hand, I pretty much sat around all day yesterday so that may be a contributing factor.

I go back in two weeks and the nurse said that's when most people feel a real difference.
 
Hi everyone! After a year of being sick off and on...I was finally diagnosed with Crohn's in July since then I have been taking Lialda and every other month or so Prednisone when I have a really bad flare up. My Doctor told me yesterday that he wants to me to start taking Cimzia because he feels that Lialda just isn't working the way it should. I have read multiple sites of people saying the Cimzia gave them no relief whatsoever and is horrible. I won't be starting Cimzia for probably another month or so once they can get it approved by my insurance. I am just getting over a flare up and am really feeling to defeated with this whole thing. I am ready to find a "miracle drug" so I can get back to normal and not be in pain and so tired all the time!!! Just looking for some hope that Cimzia isn't bad and could actually help!!! Thanks!!!:(:sign0085:
 
mrshebert11: i am on Cimzia and it is working great. it's taken a little while--about a month to really kick in, but, after being on 40 mgs of pred for 4 months (yes, 4 months!) i'm down to 25 mgs and still tapering and feeling better than i've felt in a long while. personally, i have no side effects from the cimzia. i used to be on remicade but became allergic to it. tried humira but it did really weird things to my body. the cimzia has been a whole other story. i'm very, very happy i'm on it. don't give up hope. a lot of people who have success with drugs don't post about it because they're feeling well and living their lives, not stuck in crohn's hell. don't give up hope!
 
Welcom Mrs. Hebert. I have been on Cimzia for about 3 years. I did have surgery in the middle, but since surgery Cimzia and Asacol has worked well. No flares since Feb 2012, but still deal with fatigue. No real side effects I can attribute to it.
 
Hi Kiltubrid
How are you feeling on the remicade? I hope you are feeling great and getting relief from the joint pain.
 
Hi folks. Currently on Cimzia,so so results. Now the Cimzia will used along with Imuran Currently taking Ultram for pain and Prednisone 40 mg. Not sure where this will conclude but remaining hopeful, after Pentasa, Humara and a host of other stuff was unsuccessful. Take care everyone.
 
Please keep us posted. I am almost at 3 months on Cimzia and I think I am feeling better. Finally got off of prednisone but still have joint knee pain. My C relative protein lab is normal now and the sed rate lab is almost normal. Does anybody know if Humira is better for joint pain? I also have read that LDN helps with joint pain too. Any comments?
 
Hi folks. Question on Humara and joint pain. I felt that my joint pain greatly improved when I was on Humara but since my flare ups continued on Humara , I switched to Cimzia and Imuran. Good luck with Humara and the joint pain.
 

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