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I've been having extreme joint pain while on Humira. Doctors first thought it was a Crohn's manifestation. Went to a rheumatologist and there is absolutely nothing wrong with my joints (yay!). Anyone else had this problem?

Pretty sure it is the Humira so I'm not going to be taking it again...
 
Luthien,

It is both the Crohn's and TNF blocker(s) that can cause severe joint pain. I have experienced both. You know your body best - if the joint pain subsides when your Humira trough is reduced….then you know it is the Humira. However, I would proceed cautiously, because once you give up the Humira it is highly unlikely you will ever be able to return to it based on your body building-up antibodies.

Great news that you have no permanent joint damage - nonetheless, not many realize just how debilitating severe joint pain can be.

How long have you been on Humira?
 
I've been on it about 4 months, they just upped my dose to once a week and after I took it a week apart I nearly couldn't walk.
I've never had the joint pain before this so I'm thinking it is likely the drugs rather than the Crohn's
 
That is great news. I personally encountered those issues when my body rejected Remicade (built up antibodies). Thus, my change to Humira. My doctor has advised me to look out for those same issues with Humira.

The good news is - you have never had the 'joint pain side effect' from Crohn's. For me, that outragous pain was the reason I deceided to move forward with using TNF blockers. I discovered when my Crohn's was flaring, my joint pain became excruciating. Unfortunately, it took me awhile to connect the two - I guess I was in denial even after my doctor said they msot likely were related. I was told... control the Crohn's and you'll control the severe joint pain. However, later, I was able to differentiate between the TNF caused joint pain…and my Crohn's caused joint pain. No one know's our bodies better than us….

Are you currently flaring? If yes, was that the reason for the Humira increase?
 
They thought I may have built up antibodies to the Humira, I told my doctor the blood test was going to be too expensive for me to do though so no official numbers on that.

I went straight to TNF blockers after my diagnosis, after surgery and a few months on prednisone. I wasn't diagnosed until after surgery, so I don't know what normal really feels like without drugs. The Humira dose was increased because around day 12 (of 14) I would start to get some Crohn's symptoms back, and I would just feel all around icky until my next injection.
 
my blood pressure is a bit low probably from the anemia tho. i had joint pain from the crohns and frankenscence extract pills have been keeping it under control, the joint damage to my feet has been done tho
 
I know what you mean…the Prometheus blood test can be expensive, however, they work with your insurance company and will appeal the claim with them as well. The cost for the test (they do not charge up front) is as little as $50… and worst case scenerio, (insurance denies the claim) no more than $250. Again, only if your insurance denies the claim. Many insurance companies are coming around and are accepting the claims. For those insurance companies that do not, after all apeals have been exhausted (they do all the work) Prometheus will never charge more than the $250 and considerably less based on your income level.

My Prometheus test revealed, I had built-up approximately 12.0 antibodies with a 0 trough.

I am sorry to hear about the surgery. Several years back, I had a blockage and was prepared for surgery and by the grace of God - the NG (tube down the nose into the stomach) helped relieve the blockage.

I appalud you for taking the bull by the horns and starting the TNF blockers right away…. It is a great feeling when you know the drug is working and you get relief.

Has your doctor suggetsed maybe starting you on a small dose of Imuran? This helps with keeping the antibodies at bay.
 
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Yeah I'm a college student so any extra money is pretty much non-existent right now. Otherwise I would be doing any/all tests right now to help.

My doctor had originally suggested Imuran along with the Humira, but he never followed through on that, I guess because I did okay on the Humira at first. I'm also very against medications in general, so getting me to take more drugs is quite difficult.
 
I am with you - I never wanted to pull the trigger on the TNF blockers or other drugs either. In fact, I just learned from my doctor that Imuran (small dose 50mg) helps keep the antibodies at bay.

I hope your next GI appointment goes well and that you can get a handle on the Humira/ joint pain.

You are obviously a fighter - a very smart fighter!
 
You can have joint pain develop later with crohn's.
DS had no joint pain for over a year but later started started with joint pain prior to humira.
After a year and half this progressed to juvenile spondyloarthritis .

Not saying this is happening in your case but often it takes time to show up despite pain.

https://www.rheumatology.org/Practi...itions/Spondylarthritis_(Spondylarthropathy)/


But something to be aware - it does present differently than regular RA.
 
I'll try again with a simpler question, my thoughts aren't coming as easy as normal...

Does anybody have experience with a Humira reaction, specifically the drug-induced lupus stuff? Is that something that happens only soon after starting, or is it something that can happen at any time (say after being on Humira for 2 years)?
 
I started my loading dose of Humira today. Can I join the Humira club!? I am also taking Budesinide, 6mp and Lyaldia. I am hoping to wean off meds and just be giving myself Humira shots every other week. I am looking forward to finally being controlled! From what I have read on the forum Humira seems to be mostly positive besides the needle poke! :) I can do this though :)
 
Luthien said:
I've been on it about 4 months, they just upped my dose to once a week and after I took it a week apart I nearly couldn't walk.
I've never had the joint pain before this so I'm thinking it is likely the drugs rather than the Crohn's
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I have had Crohn's for 20 years and never had any joint pain until I recently tried Azathioprine. It was one of the side effects that made me stop taking it. It took a few weeks, but now the joint pain is gone. I am supposed to try Humira now. I am holding off, I am really prone to side effects...
 
maggieil31 said:
Hi everyone,I've been on humara for 4 months and I'm losing hope,diagnosed with crohn's one year ago,humara took away the spasms but still have daily pain,thinking about surgery,any suggestions!
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What other medications are you on? I think taking something to control the inflammation generally reduces pain.
 
Hi,
Getting ready to start Humira next week. I am not good with needles.
Just wondering how painful the injections are? How did you do on load day?
Also, how many are having bad side effects.
Thank you
 
I don't find the injections to be painful. In my opinion, a yellow jacket sting hurts 50x more. Just let the pen sit out for about 30 minutes before doing the injection. If the medicine is too cold, it will definitely burn and sting. Good luck!
 
I just started on Humira on Friday. I took the loading dose with a nurse at my GI's doctor's office. He likes his patients that are starting on Humira to see his nurse who helps with the loading dose. She showed me how to use the injection pen, then gave me the first two injections in my left thigh. I then did the other two myself in my right thigh. Honestly, I was really nervous about how painful it would be, but it's really not so bad. Either I have a very high tolerance for pain, or most people who take Humira have a very low tolerance for pain, because everything I read said how painful it was, but to me, it felt like a slight stinging/burning sensation for about 10 seconds. I know it's only been a few days, but so far no adverse reactions or side effects that I've noticed. The nurse told me to take the pens out of the fridge and leave them out for my drive to the office, which is about 20 minutes from my house. She said that bringing it up to room temp. helps with how painful they are.
 
Hi everyone

Did my loading dose of 160mg two days ago using the pens which I injected myself after training by the nurse at my home. It hurt more on my thigh but only when the solution was going in (between 4 and 8 seconds). It didn't hurt on my tummy but maybe I have more fat there! On the whole it was really easy to do, much easier than injecting Methotrexate!

So far only side effects is a largish bruise on my tummy, mild headache a couple of times (but no need to take any meds to get rid of it), bit of a runny nose, some muscle pains mainly in my arms and I slept a lot 24 hours afterwards. Again, much easier than any other med I have taken for Crohn's so far. Here's hoping that it works!

The Healthcare at Home service is really good and the nurse was great - spent two hours with me answering all my questions and reassuring me. It really was a breeze.

I have tried to be honest here as I know some people can get really upset about taking these strong meds (I am one of them!) and sometimes it is easier to focus on the negatives rather than the positives.

Good luck to anyone starting soon.

Carol
 
maggieil31 said:
Hi everyone,I've been on humara for 4 months and I'm losing hope,diagnosed with crohn's one year ago,humara took away the spasms but still have daily pain,thinking about surgery,any suggestions!
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Oh be careful maggiel31, once you start down the surgery route its odds on that you will have more. Try & stick with it before you opt for surgery. 4mths isn't that long as such & there are other things that can be tried like a short burst of Budesonide or if its really bad Remicade.
Hope this helps & good luck
Rgds
Grant
 
i am on humira and 25mg of methotrexate weekly now. my feet are extremely swollen. i still need to gain 30lbs to be back at my healthy weight, my feet wont go down at least until then. its hard to walk, but i am actually finally starting to feel better. it took 6 months and i am still anemic.
 
4 years for me, had one surgery since but really that was because it took so long for the NHS to act after my suspicions were confirmed that I had another stricture. I went onto Humira after the stricture diagnosis.
I changed from the pens to syringes after about a year, found the pens rather painfull tbh. Syringes less so.
Rgds
Grant
 
2 years 7 months for me now :). I just did my *** last night. Still using pens and cold packs on area of ***. I'm still able to work full time, yay! But it's not easy. I rest heaps, basically if I'm not working I'm resting. Happy Holidays everyone :)
 
dreamintwilight said:
I have not yet started on Hmira. I'm still in the process of being diagnosed. But my GI doc mentioned starting on a biologic once it was diagnosed and Humira is the one that is covered by my insurance plan. I assume I'll start on that.

I've read a lot about people saying the loading doses are the worst. What's so bad about them as compared to the other times?

Also...does anyone know if the shots compare to allergy shots? I get those monthly and was curious if the pain was similar to those.

I am a very petite and thin person naturally and probably could be considered underweight right now since I lost about 7 pounds in the hospital. I worry I won't be able to find a "fatty" enough spot to inject the shots. The idea of injections in the arm sound more appealing than the leg or the stomach, perhaps because I am used to it already.

I know my worry is premature since I am not even slated to start Humira yet, but was just looking to gain more knowledge about it. Thanks :)
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Some people have problems tolerating the Humira shots because it feels like a bee sting. I know for a fact Abbvie is working on a way to ease that pain, but I dont know where they are in that process. When and if you do go on humira, I'd plan on having 2 days with no work or plans. The reason is ( in my case) your going to feel like you have no energy and tired. When I went on Humira 2 years ago I was weighing around 135. It was hard for me to pinch some fat. :)

I recently went to Chicago for a checkup and now I am overweight. lol
I was told to loose 10 pounds in 6 months. case in point is that Humira is worth it- if you can tolerate it.
 
I find that I have plenty of energy on injection days, even when I did the loading doses. I wonder if it's adrenaline? We all probably have somewhat screwed up adrenal systems thanks to auto immune disease and steroids so maybe it affects us all differently?
 
I know the humira shots are hard for some, but don't be afraid to give it a try, especially if your Crohn's is severe. They hurt, sure, but it's over quickly. It's nothing like the pain I was in when I was in the hospital, so for me, that perspective helps. I aim for a flabbier spot, away from stretch marks, and if I'm feeling sensitive, I ice it beforehand. The ice dulls almost all of the pain of it for me, but I usually don't bother because it's an extra step to deal with.
 
My doc did the loading dose different to what ive seen.... she had me do one shot each, on day 1, day 2, day 14, day 15, day 28, and day 29. I trust her judgment and shes been good all around for me, ive just never seen the loading done that way?

Will take the last 2 on 31 dec and 1 jan, then go to 1 shot every 2 weeks
 
Most loading doses in adults are done a certain way because that has been proven in most studies to work well.
That said my kiddo didn't not have a loading dose of Humira since he was switching from remicade.
This of course resulting in it taking much longer for Humira to become effective
 
Doc said she has seen good results in some patients with 2 shots on consecutive days once a month in adults, but since i felt like i was seeing some effects from the loading shots but only for about 2 weeks before that started to fade, she felt better with me doing 1 shot every other week, which seems to be more common.... *shrug* whatever, i will do the shots on whatever schedule works if they help! lol
 
Hello- looking for feedback. I've been on remicade for a while and doc switched me to humira. I did the starting 4 shots two days ago in the morning. Later in the day...almost midnight I developed hives on my elbows, wrists, knees, and some on my neck. No redness or hives near the injection sites. I have since taken benadryl and pepsid and all is pretty much well. Does anyone else have this problem? I had no other problems besides that.
 
Grant said:
Oh be careful maggiel31, once you start down the surgery route its odds on that you will have more. Try & stick with it before you opt for surgery. 4mths isn't that long as such & there are other things that can be tried like a short burst of Budesonide or if its really bad Remicade.
Hope this helps & good luck
Rgds
Grant
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I'm living proof once you start getting surgery, it just never stops. I'm at 19 now! They're so many biologics try another one, but don't give up cause it took me awhile to figure out what meds work best for me.
 
I'm getting Humira today and start injecting on Monday. I'm quite active at the moment, so will be interested to see how quickly it works. Has anyone had experiences of a (relatively) quick improvement?
 
My daughter had her loading doses 2 weeks ago and her second one this week. I saw immediate improvement (next day) and she has been doing very well ever since. By "very well" I mean formed bm's, good energy, and no noticeable side effects beyond being tired for about 1/2 day after injections.

I hope it works well paulphi.
 
Thanks Pilgrim. That sounds very positive, so I hope I will see an improvement soon.

I've tried all sorts of medication before, but this definitely has had the best reviews.

I can handle a little bit of tiredness if there is a marked improvement elsewhere.
 
Hey humi's
I'm new to the forum and I posted over in the "your story" section and was advised to post here.

I was first diagnosed with Crohn's in September 99. In October 99' I was then diagnosed with non Hodgkin's lymphoma. Thankfully I underwent successful chemotherapy and was in remission from the lymphoma in May 2000.
In June 2002 I had a bowel resection and my Crohn's has been fine since then. However I got a colonoscopy earlier this month and it showed the Crohn's is active again.

My GI reckons humira is best option going forward but obviously I'm not so keen with the past history of non Hodgkin's lymphoma. My question is has anybody who previously had lymphoma ever gone on humira and if so how did they get on? It sounds like a massive risk to me but my GI seems to think I'm out of options.
I currently take 4 grams of pentasa a day and one sachet of questran in the morning.

Any information is greatly appreciated.
Thanks Paul
 
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What a tough situation to be in Irishbucka! My heart goes out to you. I can't imagine having to make that decision, but I would definitely talk to your Oncologist, and get a better idea what your odds are. Please keep us posted!
 
Hi Paul,

I'm also sorry to hear of your situation. I've been on Pentasa after resection surgery and the inflammation came back within 7 months so my new GI put me on Humira. I've been reading a little about fecal transplants as a possible treatment for Crohn's. Since it doesn't have the side effects of Humira you might want to talk to your Dr. about trying it if it's available... can't hurt.

Good luck,
Alan
 
Cheers for the replies guys. I've got a meeting set up with them on the 27th of this month so hopefully get all the info I need then. My GI has over 300 patients on humira with no problems and a couple of them previously had lymphoma. I've got about a million questions before I make a decision.
Thanks again.

Paul
 
Thanks Alan,

I had a small bowel resection in 2002, but didn't really help. had Crohns for 20 years and tried every drug under the sun, so Humira is the last in a long line. Only on day 4, so no results yet,but need to give it time. Heard good things, so I'll give this a shot. Never heard of fecal transplants, but sound interesting. I'm from the UK, so not sure how well it is publicised over here.

Hope your Humira is working
Paul
 
Hi Paul,

I've been on Humira for over a year and I've gone from (moderate to severe) to what I consider mild. In the past I've suplimented the Humira with Budesonide and more recently Cipro with some bad effect. I am only using the Humira now. I guess it takes some time for it to kick in.

I read about the Fecal Transplants in an article in The New Yorker Magazine Dec. 1 2014 edition. The author is Emily Eakin. She mentioned a Sydney Australia gastro named Thomas Borody as one of the early proponents of this treatment. In the USA the FDA has not yet recommended this procedure but tests are being conducted. If my Crohn's takes a turn for the worse I think I will look into this treatment as it doesn't seem to have the risk that the biologics do. I hope Humira works for you...Good luck managing your Crohn's!

Regards,
Alan
 
It's my last day before to start the treatment (I'm starting methotrexate tomorrow and humira friday). I'm a little bit anxious, because I had very bad sides effects with Imuran and 6mp a few years ago. But with 3 surgeries in the last 15 years ... I've no other choice to try everything to stop the disease :-S

By the way, the first bill from the drugstore is impressive. 3276$ for the first 4 shots.
 
Does Quebec have a program that will help to offset the cost of your medication? Ontario has a program that you can enroll in which simply takes your income and then covers your medication costs at the cost of 5% of your income. You pay that 5% in quarterly amounts. With a med that costs tens of thousands per year, it is a big help for most middle income earners.

Maybe worth looking into if there is a similar program in your province.
 
Pilgrim said:
Does Quebec have a program that will help to offset the cost of your medication? Ontario has a program that you can enroll in which simply takes your income and then covers your medication costs at the cost of 5% of your income. You pay that 5% in quarterly amounts. With a med that costs tens of thousands per year, it is a big help for most middle income earners.

Maybe worth looking into if there is a similar program in your province.
Click to expand...

There is a public drug insurance in Quebec, if you don't have a private one.
The maximum annual contribution is ~1000$ (http://www.ramq.gouv.qc.ca/en/citiz...e/Pages/amount-to-pay-prescription-drugs.aspx)

But I'm on a private insurance, so I just have to pay 500$ max / year
 
Hello everyone! I'm new to the forums. I was diagnosed in April 2013 with Crohn's Disease and I have tried many medications that didn't seem to do much of anything. Anyways, I just took my loading dose of Humira last night... all 4 of those suckers! They hurt! I am a bit of a baby when it comes to needles, but I am looking for any help anyone can provide as far as tips to help with the pain. I tried icing the area and leaving the medicine out for at least 30 minutes to let it warm up to room temp. I even tried orajel. I think the burn of the medicine was what hurt the most. The needle didn't even really hurt. The one we did in my leg was HORRIBLE. I have to do the follow-up 2 pens in 2 weeks and I want to try and be prepared if I can. Not looking forward to that at all!
Thanks in advance!
 
Matrix said:
There is a public drug insurance in Quebec, if you don't have a private one.
The maximum annual contribution is ~1000$ (http://www.ramq.gouv.qc.ca/en/citiz...e/Pages/amount-to-pay-prescription-drugs.aspx)

But I'm on a private insurance, so I just have to pay 500$ max / year
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That's a good situation, in either instance! We have private insurance but were denied coverage for Humira based on her age (she is below the age of 13 which is where Health Canada gives it's approval). Obviously, you don't have that problem.:biggrin:

I find it interesting to learn about the differences in the health care systems between the provinces, and other provincial programs. Thank you for sharing that info.
 
emersotn said:
Hello everyone! I'm new to the forums. I was diagnosed in April 2013 with Crohn's Disease and I have tried many medications that didn't seem to do much of anything. Anyways, I just took my loading dose of Humira last night... all 4 of those suckers! They hurt! I am a bit of a baby when it comes to needles, but I am looking for any help anyone can provide as far as tips to help with the pain. I tried icing the area and leaving the medicine out for at least 30 minutes to let it warm up to room temp. I even tried orajel. I think the burn of the medicine was what hurt the most. The needle didn't even really hurt. The one we did in my leg was HORRIBLE. I have to do the follow-up 2 pens in 2 weeks and I want to try and be prepared if I can. Not looking forward to that at all!
Thanks in advance!
Click to expand...

I had a lot of people tell us two things: a. take your med out of the fridge overnight to warm up to room temp before injecting and b. 30 minutes of icing the area you will inject.

That said, the Humira nurse I spoke to said that really it is the serum that stings, not the needle. So, she didn't think there was going to be much that really helped the stinging. She agreed with not using the med cold.

We did our daughters 3rd injection this week. It was the best yet, because she was really anxious about it (all Humira users, I think, dread the sting) so I made her laugh for about 10 minutes before hand. We didn't spend a lot of time leading up to the shot. Just had some good laughs then got it over with.

I guess this is to say - I think that maybe anything to reduce the anxiety might help lessen the perception of the pain. It will feel even worse if you are stressed about it.
 
Hi All,

I've been using Humira for over a year and I find using it while watching something interesting on TV makes the 10 seconds go pretty fast. Sometimes it stings more than others but it's over pretty fast.

Best of luck,
Alan
 
Pilgrim said:
That's a good situation, in either instance! We have private insurance but were denied coverage for Humira based on her age (she is below the age of 13 which is where Health Canada gives it's approval). Obviously, you don't have that problem.:biggrin:

I find it interesting to learn about the differences in the health care systems between the provinces, and other provincial programs. Thank you for sharing that info.
Click to expand...

I didn't know about the "minimum" age,
So... you have to pay it yourself with the provincial program, until she reachs 13 ?
 
No, that was our private insurance that denied us on the basis of her age. At that point then we applied to our provincial (ON) program which will cover us after we put in 4% of our family income. It's a lot of money for us, but not nearly what the cost of the med really is, so we are grateful.

The provincial program simply has a list of meds they cover and so we are covered. Voila!
 
Matrix said:
It's my last day before to start the treatment (I'm starting methotrexate tomorrow and humira friday). I'm a little bit anxious, because I had very bad sides effects with Imuran and 6mp a few years ago. But with 3 surgeries in the last 15 years ... I've no other choice to try everything to stop the disease :-S

By the way, the first bill from the drugstore is impressive. 3276$ for the first 4 shots.
Click to expand...


everything is done... methotrexate no side effects for the first week.
Humira : 4 shots done today... so far so good

how long can it takes for any side effects to appear, at the start ?
 
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I just joined the Humira club taking my first four shots this past weekend. I was feeling great by the next day, I was skeptical it was the medicine as opposed to relief from the side effects of 6mp--but my doctor said it really can work quickly. So far so good. They sent me the pens even though I had requested the pre-filled syringe. I have already requested my doctor submit the maintenance prescription for syringes. Hoping I stay feeling good as I taper off the prednisone. Very thankful to this thread for tips on getting started!
 
My next injection is due tomorrow but I am feeling like crap since Friday. Its the first time I feel like this since I started Humira. Bleh bleh bleh. I just hope its a cold or something. cause I don't want to switch to Remicade.
 
Matrix said:
everything is done... methotrexate no side effects for the first week.
Humira : 4 shots done today... so far so good

how long can it takes for any side effects to appear, at the start ?
Click to expand...

I was told by the pharmacist that side effects usually show in the first 24-48 hours. The next possible time slot is about 2 weeks after. If you get through your second set of injections with no issues - things are usually pretty good to go.

Obviously, she was not referring to some of the less common, long term possible side effects.
 
Scifimom said:
My next injection is due tomorrow but I am feeling like crap since Friday. Its the first time I feel like this since I started Humira. Bleh bleh bleh. I just hope its a cold or something. cause I don't want to switch to Remicade.
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My daughter has a cold and it seems to affect her appetite and cause a little mini-flare for a day. Hopefully, that is all you are experiencing. She is only a month in to her Humira, so I was a little worried, too, but I think it's the cold.
 
Joining the club! As soon as I get meds from specialty pharmacy that is. Feel like poo currently. Lots and lots of extra intestinal manifestations. Back pain, hip pain, chest pain all the time. I can only sleep on my back and only on a heating pad. Energy levels In The toilet. Doc thinks the humira will help. Does it kick in fairly quickly? Everything I read says side effects are fairly low- what are y'all's experience in the side effect area? I e read to let the shots come to room temp before injecting and that helps. Any tips are greatly appreciated
 
I have been on Humira since the first of September, 2014, and feel the best I have in many, many, many years. I'm 54, if that tells you anything. My fatigue level has dropped to almost nil, I never feel nauseated like I used to, and my stools look the best they ever have. Humira has been a blessing. Hope it continues to work as well as it has so far.!:D
 
Blue Eyes, I noticed a difference around the 3rd month and while I've had a moment or two where I haven't felt well, I have to say the Humira is working, and working well. I take my pen out of the refrigerator about 30 minutes before I do the injection and haven't found the injections to be painful. They burn sometimes, but I think a yellow jacket sting is 100 times more painful. Before you do the injection, make sure you grab a significant amount of skin on your thigh because that will help minimize any pain. Good luck!
 
Actually, my pharmacy gave me the phone number to the Humira people, and I've already go that set up. Thank you! Still waiting on pharmacy. I'm resorting to calling them daily until they get their stuff figured out. They are gonna get sick of me, lol.
 
Hello everyone! I am new to this support group. I was on Remicade and started developing anti-bodies to it. Was supposed to start Cimzia, but my insurance won't approve it until I try Humira. I had my loading dose last weekend. I used the pens. I bruised very badly and also developed an itchy rash at each injection site. I have discovered that the tips of the pens have latex on them. I am allergic to latex. Has anyone else had this happen? Did you have to go to the syringe version, and did that help? I am awaiting a call back from my Dr. to see what next steps should be. Would appreciate any advice...thanks
 
Hi ttowntiger87,

Welcome to the site! Your meds and outcome are similar to mine. Thanks for the info on the tips….I too started to develop an itchy rash at the injection site after a few injections. I was told by my do that these are typically early signs of rejection, however, not in all cases. In addition, I was advised that the Azathioprine/Imuran helps in combating the antibodies/ the possible rejection.

Did you try taking 10MG of Loratadine and an Acetaminophen prior to the injection, and applying ice to the site post injection? This has helped me - however, I am switching to the syringes.

Again, thanks for the latex info - very helpful!
 
After almost 2 weeks on Humira (and 3 weeks on 10mg Mx) I'm starting to have muscles aches. In the last days, it was in both calf, now it moved to my left arm, close to the shoulder.

I don't know if it's from humira or mx,
is it something I should be worried about ?
 
Matrix,

I applaud you - you're quite a fighter taking on this disease head on. I would give the Humira a chance. It sounds like you're in the inoculation/loading phase (several injections in a short period of time)?

As you may know, muscle cramps are a rare side effect of Humira. I would log the time, location of cramping, injection times, food intake, etc. etc. (lots of detail) and get with your Dr. asap. He/She should do some SOP blood work-up which includes vitamin deficiencies and other key possible factors. If you can't get in with them…get on the phone with your them - have dialogue asap.

Hang in there - better days are coming!
 
Headaches are common in Ibd kids and adults
Any time there is inflammation it can aslo affect the head.
DS gets chronic headaches worse when flaring or allergy season
Allergies start to show up in most around age 4 btw.
 
Yeah, I'm wondering if she's starting a flare. Am kind of hoping the headache is just a Humira thing.

Never thought about allergies but will put it on the radar. Thanks, MLP.
 
Napali Coast said:
Matrix,

I applaud you - you're quite a fighter taking on this disease head on. I would give the Humira a chance. It sounds like you're in the inoculation/loading phase (several injections in a short period of time)?

As you may know, muscle cramps are a rare side effect of Humira. I would log the time, location of cramping, injection times, food intake, etc. etc. (lots of detail) and get with your Dr. asap. He/She should do some SOP blood work-up which includes vitamin deficiencies and other key possible factors. If you can't get in with them…get on the phone with your them - have dialogue asap.

Hang in there - better days are coming!
Click to expand...

Thanks for your answer.
Tomorrow is my second injection day for Humira... (2 injections)

It is not a big pain, but it is annoying and the pain is sporadic, this morning, nothing on my left shoulder but it started a little bit on my right, after a couple of hours, it's fine.
 
Just an update on me: I finally got my Humira from the pharmacy, boy was that an ordeal. I took my loading dose (4 injections) last night. No problems, it did sting at the end of each injection, but not intolerable. No rash, no bruising. For the last 2-3 months I have been dealing with a ridiculous amount of back pain and chest pain, to the point of not being able to sleep on my side at night or it would wake me up- this was in addition to my CD not being under control. Well, I don't know if it is in my head or not but some of the crushing fatigue, aches, and brain fog seems to have lifted a bit today. My general mood is better. My tummy still hurts (CD pain) and i still got awakened by chest pain at 4 am this morning, but I will take what I can get at this point. I choose to see this as an improvement. Heres to hoping it continues to get better.
 
Thatnsounds positive BlueEyes. I have had to miss my injection this week due to an infection and I am suffering badly already. My fatigue is ridiculously bad and a lot of discomfort too. I now know what people having meant when they said they can't wait to take their next injection.
 
Update on my muscles ache, I contacted the nurse, and my GI said that it's very possibly a side effect from the MX, and not from humira. I have to wait for 1 more week to see if it's a temporary effect, if it doesn't get better, they will lower the MX dose.
 
I have been on humira since October 2014. I am currently on 2 injections every 2 weeks. I started with 1 injection every 2 weeks and it was not enough. My bloodwork still not right so awaiting for my consultant to get back to me. She spoke about adding methotrexate and at a push humira 2 injections every 10 days. Is anyone else on 2 injections every 10 days?
 
Me too (I have UC not Crohn's, at least as best as anyone can tell) - one Humira shot every week and 100mg 6MP daily. I'm really tired of feeling this way (tired, run-down, chronic low-grade abdominal discomfort, still no reasonable notice when I have to go poo, even though the Humira & 6MP have stopped the diarrhoea and most of - but not 100% of - the bleeding), and want to have a serious and reasonable discussion with my GI about the realistic possibilities of having the ileostomy/J-pouch, but he refuses. Time for a new GI. He's a terrible communicator, and though I have hitherto trusted his medical expertise in spite of the communication issue, I will not countenance this stubbornness.

The sad thing is that one could reasonably argue that the weekly Humira is technically "working" for me....
 
Well I had my loading dose of 4 shots last Friday. I did 2 in the belly and 2 in the legs and boy did the legs hurt, never again! The ones in the belly hurt too but not nearly as much. Next time I will let them warm up a bit longer and perhaps try icing the area first.

However I do feel a lot better already. The arthritis is almost completely gone and the bowels seem calmer too.
As others have said, there was a lot of gurgling for a few hours after but so far I'm going less often and it looks to have firmed up a little.

I'm still on 25mg of MTX which I don't think was doing anything at all so have asked to stop it but I have to carry on for 4 more weeks to give the Humira a chance to work.
I can't wait to get of the mtx as the side effects were really getting me down. Terrible fatigue, sores in the corners of my mouth despite upping the Folic acid and cramping calves and feet mostly in the middle of the night. I would be able to cope with that if the D was better but it wasn't at all.:thumbdown:

Question for those of you that have used both pens and syringes; was there any difference in the pain?

I chose the Humira pens as I thought that would be easier but I could swap to the pre-filled syringes for my next script if they are less painful.
 
I've been on Humira since June of 2012 -- it's working pretty well although the nurse assured me I'd get used to the pain of the injections and no I find they still hurt. (Maybe I'm a wuss? That's totally possible. :p) I take an injection from a pen every other week -- in fact I just took one twenty minutes ago.)

I'm pretty much side-effect free, except that about 40 minutes after I take it I get like achy and stuffy, dizzy and foggy-headed, as if I had a cold. It lasts roughly six to ten hours... but that's why I take my doses at night. I just sleep through it. My doctor wasn't overly concerned so neither am I. :p
 
:DI've just done my first regular fortnightly shot yesterday and I'm happy to report that letting it warm up a bit more makes a huge difference! Still more painful than the MTX but a lot less than the first 4. I won't be trying my leg anytime soon though.:ytongue:

After the second loading dose of 2 shots the arthritis all but disappeared for 2 days just like the first time, sadly it has so far come back. But right now it's gone and better yet I have virtually no more D! There was a day last week I only went once and it was formed!
So happy to finally have a result and let's hope it continues!

Even when I do still have to go a few times a day the urgency is much less, I don't have to run out of meetings anymore which is great.
The fissure did rear it's painful head again though but I'm hoping it's just because it isn't used to having anything formed and I have been a bit windy which also doesn't help.

I may try questran or psylium to help with that but all in all I'm really happy with the Humira so far, I haven't felt this good in ages.

I was allowed to stop the MTX so I'm hopeful I'll be a little less tired with that gone.
I haven't noticed any side effects from the Humira either, the nurse said I'd still be fatigued due to the Humira but after the first 4 shots I actually felt more alive and less worn out than I have in ages, I've even got inspiration to start cooking again which is very important to me. Let's hope I don't cook so much that I'll be putting on more weight than I need!:D
 
I dont know if yall have heard or not, but they say the humira can stay out of the fridge for 14 days now. I pull mine out at 5am the morning of the shot and take mid day. Still hurts but for not as long.
 
Forgot to mention the (almost) most important thing; I can eat cheese again!
I'm lactose intolerant and it has been getting much worse to the point that I cut out all dairy but I snuck in a few bites of cheese last week and it didn't give me any issues!

Has anyone else noticed they've been able to eat things they were intolerant to before?
 
Yes. My humira nurse give me the news. Although she did suggest that if you do leave it out for a period of time, not to put it back in. I work offshore, "well I did before this last flare that has left me waiting on a surgery date", so she told me to just throw it in my bag and use it within the 14 days.
 
No problem. But I dont think there is anything that will take all the pain away. I have not tried I the belly yet. After feeling like a horse kicked me In the leg, I dont want that in my gut. I have enough pain there as is.
 
I find the belly hurts a LOT less than the thigh, worth a try I'd say. The pain also doesn't last as long as in the leg. The last one of the loading doses I couldn't even finish as it hurt so much.
I do have some lovely flab in the tummy and near the belly button hurts less than anywhere else.
I was scared of injecting anything near my resection scar but it doesn't make any difference, if anything it hurts less there:confused:
 
I guess I will have to put on my big boy pants and give it a shot. "Pun intended"
Being bloated and swelled up I got plenty of padding. IM waiting on CT SCAN results to schedule surgery/surgeries. Waiting to see if I got scar tissue, fistulas, partial blockage, etc. Also have fistula on the bum. So looking like im going to do a 2 for 1 surgery.
 
POTTYTIME! said:
I dont know if yall have heard or not, but they say the humira can stay out of the fridge for 14 days now. I pull mine out at 5am the morning of the shot and take mid day. Still hurts but for not as long.
Click to expand...

I did not know this! I am going to be traveling and the traveling kit I've received says it only last for 6 hours. By hanks for the info.
 
peluchde said:
I did not know this! I am going to be traveling and the traveling kit I've received says it only last for 6 hours. By hanks for the info.
Click to expand...

Keep in mind that once it's been out, you need to use it within those 14 days! Otherwise, a recommendation I got for travel was to actually keep it cold by surrounding it with frozen peas, since gel packs/ice packs are usually not allowed. (And make sure to check with all your airlines about traveling with Humira, if you haven't already!)
 
So the second delivery of my son's humira came in but the driver didn't deliver til late in the evening. It was packed surounded about 10 large and medium gel packs. My son found the package when he came in and the packs were still extremely cold as we're the packages. I'm assuming the shots were okay?
 
Clash said:
So the second delivery of my son's humira came in but the driver didn't deliver til late in the evening. It was packed surounded about 10 and medium gel packs. My son found the package when he came in and the packs were still extremely cold as we're the packages. I'm assuming the shots were okay?
Click to expand...

I would think so! I get my medication delivered as well, and as long as it's kept on ice it should be fine.
 
I thought so, even the next day, I had left the gel packs in the cooler and they were still extremely chilled. Thanks!
 
Clash said:
So the second delivery of my son's humira came in but the driver didn't deliver til late in the evening. It was packed surounded about 10 large and medium gel packs. My son found the package when he came in and the packs were still extremely cold as we're the packages. I'm assuming the shots were okay?
Click to expand...

Yeah -- they usually deliver while I'm at work and everything's still cold. Sometimes it's been out there for hours. I'm usually more careful about it in mid-summer (making sure someone's home for the delivery, I mean) but that's in like 90 degree weather. You should be absolutely fine. :)
 
Hi All,

I used to get my Humira delivered to the house but I'd have to be home for the 2 hour window. Now I get a 3 month supply from Caremark delivered to my local CVS. They call me when it's in and keep it in the fridge until I pick it up later that day. It has made receiving Humira a lot less of a worry (and it's cheaper too!).

Good luck,

Alan
 
Fellow Travelers on Humira,

I just returned from a month long trip to Australia. I flew with United Airlines and they would not keep the Humira in their fridge. I used the ice/refrigerator packs in a cooler bag which kept the Humira cool for the 24 hour trip. With my Dr.'s okay I took one dose the day I left (one day early) ...one dose 2 weeks later and one dose the night I got back (one day late). I only had to carry one pencil and it was pretty stress free. The security guards at the airport were great and I had no trouble getting the meds and gel packs through. Enjoy your travels!

Regards,

Alan
 
Alright, so I started off good with Humira, but after a few months my Crohn's flared up again, and the blood test showed my Humira levels were low, so I was put on one injection a week instead of every other week. It's been three weeks since then, but I haven't gotten any better. How long does it usually take when adjusting the dose to get the medicine working again?
 

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