Joint attacks!

[SunshineSmile]

About 3 days after my first injections of Humira I experienced joint attacks in my legs, shooting pains up and down my legs, swelling of ankles and knees so much where I have had to buy a wheel chair.

If I walk around now, I can only limp and not straighten my legs at all. NOT over exaggerrating over here...

Just woke up with another 'joint attack' at 3am this morning. can't use my legs again.

Just was wondering is this a bad reaction to Humira????
I called the Humira nurses and they said to see my doctor asap. so my doctor is seeing my today at 3pm. Not sure if I will be staying on Humira or what we are doing about this... all I know is I am in a wheel chair now and that just is not right... and the pain i'm in is so excruciating not even OxyCodine is helping me.

Just wondering if anyone else experienced this too? <3

 

[Dazzafarr]

I haven't been on any of the injections listed.
Although after researching some stuff on the steroids it did say that it can affect your bones.
In your case- injection.
The safest thing to always do -
If something goes wrong = stop the drug u are taking immediately. "you may have to wait this one out or a counter drug".
Go to your doctor ASAP and arrange another drug replacement.
Maybe organise an MRI or visit a rheumatologist if you haven't already.
A quick question, are you taking anti-imflamitorys?

 

[Dazzafarr]

Unfortunatley it may be an associated disease of crohns that you have developed or a conflict with medication.
An associated disease of crohns is AS "ankinlosing spondilitis".
Which can cause swelling in the ankles and joint pain and other symptoms.
Let us know how it goes

 

[Miss Underestimated]

Let us know what you find out!

 

[Biek]

I've had a few 'joint attacks' but not from Humira. Basically insane pain on my knees and I'm unable to get up or move at all. Probably a 9/10 or 10/10 on the pain scale. Dr's have told me arthritis is a common side effect of crohns and I only seem to have this attack when I'm sick or having a flare up. It has been a little over 7 months since I had debilitating pain in my joints though. I know it isn't caused by Humira because I only just started Humira last week. If something changes or I have an attack like the one you described I will definitely let you know.

I hope you feel better soon and you stop having these attacks.

 

[HeyJude]

I had the same thing happen to me after several Remicade infusions and also after several Humira injections. Unfortunately, this is a Lupus like side effect. It took me over a year to get back to normal. My heart goes out to you, this is so painful. My Rheumatologist that treats my Crohn's arthritis treated me with Prednisone. I hate taking Prednisone but had no choice. I contacted the drug companies and sent documentation and test results asking them to list this in their side effects. They now do list it as a side effect. Another person in my Crohn's support group had the same thing happen to him after taking these TNF-Factor drugs. I'm so sorry this happened to you. Please keep your chin up and realize it's going to take awhile to get better. It depends on how many infusions or injections you had taken before the reaction, the less the better, because it needs to get out of your system in order for the pain to be resolved.
These side effects happened to me back in 2001 from Remicade and in 2008 from Humira. I'm sure much more is known about this side effect now than when I developed them years ago.~Judy

 

[CrohnsCHES]

If you started taking Humira and you've had attacks like that since, report that as a side effect to the pharmacist and doctor and ask whether you should keep taking it! This is some text from the NIH/PubMed Health Site on injectable RA drugs like Humira (note the part about NEW pain!):

"Some side effects can be serious. If you experience any of the following symptoms or those listed in the IMPORTANT WARNING section, call your doctor immediately or get emergency care:

numbness or tingling

problems with vision

weakness in legs

chest pain

shortness of breath

rash, especially a rash on the cheeks or arms that is sensitive to sunlight

new joint pain

hives

itching

swelling of the face, feet, ankles, or lower legs

difficulty breathing or swallowing

fever, sore throat, chills, and other signs of infection

unusual bruising or bleeding

pale skin

dizziness

red, scaly patches or pus-filled bumps on the skin"

Just to be safe, make sure these new attacks aren't caused by the meds!

 

[Aura]

Hi, in addition you may want to get your uric acids checked in your bloods to see if it is crystalising in your joint as in gout. I'm on Humira - my joint pain before Humira and on Humira has always been in my sacrum and lower spin.

 

[SunshineSmile]

just wanted to let you all know... the "attacks" i was getting actually got so severe I was in the hospital for 2 weeks unable to walk and severely sick. I have Lupus from Humira AND Rheumatoid Arthritis now... all from the reaction it had with my body...
I am still learning how to walk again... it's a sad thing for a 21 year old to go through. Since the Humira I was on Methotrexate and that helped me be able to move my legs again but I demanded to be off of it since it made me awfully sick because it's so strong and it's chemo. my body is too sensitive to it.
Now, I'm only on Colchicine, prevacid, folic acid and vitamin D... you can see, I'm trying to be off of most of the drugs because they have basically all HURT me more than actually helping... :'(
Now, I'm ten times worse than I was and have more symptoms and illnesses than I had before and doctors still don't know how to treat me or know really what's going on with my body. All I know is I'm not doing well at all and can't live my life... :'(
My doctor said the reaction I got from Humira was VERY rare... when I was in the hospital, they couldn't believe that happened to me.
I have a lot of problems with every organ now... it's awful.
be careful on these drugs everyone... you never know what can happen. <3 *hugs

 

[tracycat79]

I am so sorry to hear this. It is horrible. You will be in my prayers. I hope you feel better soon.:heart:

 

[Miss Underestimated]

So sorry to hear it affected you that way. There are some others on this forum who have had the lupus syndrome with humira - it's a known side effect. It does go away, once all the Humira is out of your system.

Do you have confidence in your doctor? It sounds to me like not much experience with this - it's not that rare. I thought when you first posted that the doctor should have realized what it was, but I hesitate to say things like that to people.

 

[Aura]

Thank you so much for your update. I am real sorry that you are going through this and that you had to spend 2 weeks in hospital. I'm thinking of you and sending good vibes your way. I find hanging around on the forums a good way to help with my recovery. I hope to see you around :ybiggrin:

 

[SunshineSmile]

Thanks you guys for your support with this stuff. means alot to me.
Its been 2 months since Humira incident, and I'm still not doing well. my walking is getting better, but other than that still not feeling well

hope you are all doing well <3
thinking of you all!!

 

[Miss Underestimated]

hang in there!

 

[Keepingfaith]

I hope you are feeling better today! How did you get the Rhuematoid arthritis? You can't get it from Humira. Rhuematoid Arthritis is an autoimmune disease in its self. I've always had JRA before the Crohn's. You can get severe joint pains & DIL from Humira but not RA.

The same happened to me with Remicade & it was MISERABLE! My heart goes out to you! I never had the extreme leg pain but whenever I got up from sitting I would freeze, one side of my face drooped, I couldn't talk, I just stood there for a few minutes until I gradually gained control of my body. I'm glad your doctors are taking care of you & you have EVERY right to be frustrated!!! I hope you can get all your illnesses straightened out. My GI made me cover my body from head to toe for 4 months, to keep a stable body temp, when I had drug induced Lupus because my fingers and feet would turn purple from the cold while my arms were red from being hot. Raynaud's is the name. It helped tremendously! Maybe that can help?

Always praying!

 

[hlmurray99]

Wow, that's so scary. I do hope your're doing better. Please keep us posted.

 

[Dazzafarr]

Very upset to see what you guys have to go through.
It's a roll of the dice with the drugs because you don't know how it will react.
Meanwhile, your whole life is compromised and you're willing to do anything to resolve the pain.
What I don't understand is why they don't has a cure yet....
They have even cured people with crowns already by performing bone marrow transplants. Yet... They still treat the symptoms with steroids and injections.
The good news for undiagnosed crohnies is shortly they will be able to determine crohns via blood test rather than going around the world and back while getting told you are depressed.
I really hope they get you guys back on track. What you're going through must be hell.
I hope you are going through your CDD in your countries you reside.
I found that "centre of digestive diseases" really know their stuff.
Not to mention they use the common sense of bacteria being the cause and treat the cause rather than the symptoms.
Best of luck to you all and keep us updated

 

[SunshineSmile]

Thank you so much for all being so supportive to me. I can't thank you enough! There really are some of the nicest people on here! Wish I knew you all in person!

Right now, my doctors have told me to ease off all the drugs for now to get my body back to it's 'old' self... and then attack in a different way. My Rheumatologist and GI doctor are working together now to tackle this the right way. They ran a bunch of blood work and it all came back ABNORMAL. so, they are thinking it's an autoimmune disease causing all of the underlying diseases I have...but they are still looking into it and doing more research and such. still i feel like i'm undiagnosed yet again.. i hate this. they always say oh you have this, you have that, then they give you drugs that end up hurting you and bringing u 5 steps backward.. and then they finally start heading down the right path... ugh. it's frustrating... but hopefully they can figure out more of which type of autoimmune disease this is causing all of these problems for me. I need some relief! although I am walking better now, since i'm not on any drugs anymore except for Colchicine, Prevacid, Folic Acid, and vitamin D. and also on multivitamins and 1,000mg of vitamin C a day.
So as of now, just taking what I need to and trying to get healthy the old fashioned way lol... but all my symptoms are still there and still going to the bathroom 293848 times a day and just in general not feeling well, but I am feeling better being off Prednisone, so i'm happy about that at least. lol

Just frustrated about how doctors have always handled me I guess. But I have 2 great doctors working together now. so we'll see what happens.

Hope you are all doing well. <3

 

[Z_Ghost]

It's kind of like they say we only use 1/10 of 1% of our brains. It seems that that holds true to what doctors know about our body's and how they work.

I found that liquid vitamin/supplements or the jell caps seem to work better then hard pills.

I hope they find out what is wrong and figure out a way to treat you.

 

[PsychoJane]

Hi Sunshine,
It's a rough thing to go through... I've had a mild case similar to your's where they were tempted to diagnose me with potential RA too and what not. They were never really confident in the fact it was drug induced lupus either but there was something wrong and they recognized that part. Why it stopped, they don't know... All I can say, and I hope they read the same published paper that I'Ve read, is that there is a what so called TNF-alpha lupus like syndrome for us lucky TNF-a users. Why am I bringing that up? Because it causes blood anomaly that are different from the regular DIL or the DIL they were used too.

Also, I don't know if you are following any specific diet but I would highly suggest you to cut all dairies and gluten and anything chemical from your diet for a while if you feel you can do it. This is what brought me the greater relief when I had my reaction. I refused to take prednisone as I could handle the pain and I was not in a condition as severe as yours (I could still walk and all) I just had lot of pain and could not use my hands properly or walk properly either (it was as if I had balls under my feet). So pretty much I made that drastic change in my diet because I had documented myself on the hypotoxic diet(it's a near cousin to the paleo diet). It is documented in France and written by a rheumatologist who has seen lots of success when it comes to RA and this diet(and it also benefits Crohn). There is also a composure to it that states should almost eat raw (never cook with temperature higher than 100C or 212F). So when you cook thing, better steam them/boil and avoid oven cooking and fried stuff as the food gets modified in a way it creates improper chemical bound when overheated if I remember right.
Anyway, here is a link to a forum that explain some of the great line. Might not be the best but it's in english and all my usual reference are in french so not too useful there:
http://seignaletdiet.wordpress.com/diet-basis/
It might worth a try, I started feeling better after around 2 weeks of doing so and I've been ok since (joint-wise!)

Wish you the best luck with all that and hopefully you will be feeling well soon!