Riddled with arthritis

[JadeTinney]

Hello Everyone!

I am 23 years old, and have been struggling with what they think is arthritis - symptom from Crohn's disease.
Was diagnosed 4 years ago at the lovely young age of 19, had a couple of years with bowel problems, almost had it removed, thought i had cancer at one stage, and am now stuck with this horrid joint pain, every, single, day since May of this year.
I am currently on methotrexate, humira, and 15mg prednisone.
I cannot work atm, I was on morphine for nearly a month and endone which caused me to not function at all.
the pain is getting ridiculous - there is nothing worse than knowing how angry you have become and depressed by the constant physical pain.
I am at the prime of my youth and i feel i have been grieving for lost time for a long time now, Some days i really don't see any light at the end of the tunnel.

Has anyone else had something like this before?
the pred really ins't helping my mental state, but its the only thing thats keeping the pain lower than panadol or any pain killers.
Crohns sucks.

 

[Terry]

Hi Jade, sorry you are having a rough time with arthritis, I to have Crohns, I was diagnosed way back in 1988 at the age of 32. I am currently on waiting list for a bowel resection which will hopefully be done in the next month or so. I had a nasty flare earlier this year in July and was on preds with the dosage going up and down I ended up being on them for around 11 weeks. During that time I started getting a lot of severe joint pain in my hands wrists Knees, you name a joint I have had pain there, I have even had to remove my wedding ring which I have never taken off even in pregnancy. Yes the preds would have to be one of the most horrible drugs that we cronnies have to deal with, the 2 main side effects being sleep deprivation and depression, I know my last stint with them was my the worst ever, I can't recall ever feeling as angry or out of control before. you need to ask your doc to refer you to a rheumatologist if you are not already seeing one. Hopefully your doc is also tapering you down with the preds, and things will start to look a bit brighter once you come off them. I wish you all the best and hope you feel better soon. Theresa. XOXO

 

[KayleighMeek]

Hello sorry you are suffering joint pain can be unbearable. I am 24 and also suffer with joint pain in hips, knees, ankles and more recently in my back and shoulders. I have tried so many different things but nothing seems to work for mine has also been going on from the beginning of this year and I don't feel I am any better even though I have been on and off pred, had steroid injections into various joints and had a couple of medication changes. I am now being put forward for trials as I am running out of options. I always try and stay hopefull but like you say some days are a lot harder than others. One thing that always calms me down and helps a small amount with pain is a really warm bath I stay in there for hours at a time but I always make sure I am not alone so I can get in and out safely.
I would keep badgering your rheumatologist and see if they have any other suggestions I really hope they can find something that works for you. Sorry I waffled a bit in this post but I really feel your pain sending you hugs x

 

[ktburo]

So sorry you are having to deal with all the joint pain. I was 22 when i was diagnosed now 28 and with my first flair at the time i was diagnosed, severe joint pain was the biggest symptom I had...along with both of the skin conditions associated with CD, ulcers in my mouth and a dr who would ask me if i really thought all my symptoms were due to crohn's (yea he wasnt my dr for very long) I was put on Remicade and it helped so much. I ended up having to go to every 6 weeks for injections (normally 8) because at the 6 week mark my joint pain would come back. And I really think that is what put me in remission (along with pred) until now. Hope you can find some relief! I know how miserable it is to hurt everytime you move a muscle.

 

[PsychoJane]

Hi Jade,
Arthritis can definitively be an annoying manifestation to add on top of crohn itself...
Have you seen a rheumatologist regarding these symptoms? Are they fairly new for you or have been experiencing them for a long time? How long have you been taking humira for?

 

[JadeTinney]

Hi guys!

thankyou for all of the love and support! this forum is really great! :dance:

And yes to answer your questions, i am seeing a rhumatologist very frequently, been every 2 weeks of late. he's hoping the Methotrexate will start working within the next few weeks so i can get off prednisone.

I actually JUST started on 2 new pain medications which seem to be helping alot! they are Mobic and Lyrica. has anyone had any luck with them as well?
my Psychiatrist actually prescribed them to me, I have been to so many different specialists, privately and public system, I get quite frustrated when i spend so much time and some never seem to be able to prescribe anything new. makes me really question their profession to be honest.

I have had two trigger fingers from this arthritis. had to get another cortizone injection yesterday to straighten it back out. i cannot WAIT until all of this is over. being on prednisone and being paranoid of the horrid side effects drives me up the wall.

I havn't had moon face this time around or any weight gain, which I'm pretty lucky, but i still stress about it.

Once again thankyou for all of your kind words. its really lovely being on here:ghug:

 

[PsychoJane]

I was asking and wondering if your humira could be part of the culprit but in theory I am assuming your rheumatologist would have questioned that same matter. I say that because I dealt with an episode of arthritis induced (well theory was that it was drug induce lupus but it came with arthralgia). It think it generally worth considering the possibility.

 

[JadeTinney]

That's exactly right!:thumleft:

My rhumatologist actually thinks that the humira could have been the cause of this. but its not certain. I also had blood tests that came back positive for lupus at one point and now have acute symptoms of asthma (also side effects of humira)

the thing is, that Im not meant to stop it anytime soon because with the Methetrexate, the humira work together well.

I actually had stopped humira for a number of months before all of this happened, to just see if i felt any better, and i did. i was not fatigued, could work long hours and function normally, Humira is horrible, Im always tired, even though im active, eat very healthy and am in proactive with vitamins as well. My specialist didnt know that i stopped taking it, but sometimes I just don't care what they think, they have no idea what its like to be on so many drugs at such a young age, that in the long run, wreck your body. they just don't care.
The Mobic and Lyrica seem to have worked pretty well after one day of being on it though!

 

[PsychoJane]

Oh oh! Be careful with this.
The way I understand it is that stopping humira kinda allows your defense to react to it more intensely afterwards (antibodies --> lupus like manifestations). Keep in mind that many do resolve when the medication is stopped but sometimes it remains even after the treatment is stopped.

I am not saying you should switch therapy but it could be beneficial to do so. On the long run, I don't believe it is much better deal with DIL than dealing with crohn disease. I actually was more afraid by the DIL than I were of my crohn. Do you believe you could keep methotrexate as your maintenance agent? It keeps crohn at the bay for certain person. Just a thought. Crohn can be terrible on it's own so I can understand the will to keep it in remission but at the same time, arthritis and lupus (if they are induced by the drug) are also pathologies that you would normally want to treat promptly. Don't overdue the humira if it's the guilty one is my thought.

 

[JadeTinney]

I won't stop the Humira at the moment, Im seeing my IBD specialist next week ( I haven't seen him in about 6 months because he's booked up so long in advance - he was the one who put me on Humira as well) so I'm going to see what he says to do. But i would rather just be on the methotrexate by itself without the Humira, but we'll just have to see!
essentially i would like to be on nothing but I know with crohns that;s not always the case. I was not on medication for a bout 6 months and was doing really well and then BAM arthritis kicked in. I haven't gotten any side effects so far from methorexate yet which is good. I used to be on Purinethol for a year in the past, it was horrible, i was always tired, my skin was bad, although it made my hair and eyelashes grow really long! I hate immuno suppressants. I was already born with a suppressed immune system, which in turn is what possibly caused me to get crohns in the end. So i catch EVERYTHING. always have to make sure I'm not around sick people and make sure I get plenty of sleep every night. I wish I didn't feel so different t times.
I'm really lucky to be able to talk to all of you on here though, really brightens my day

 

[Wilder]

I had joint pain for years, even when in remission. What finally helped for me was imipramine. The relief was short lived however, because then I started having nerve pain in the same areas my joints used to hurt. After some trial and error, I too, was put on Lyrica. It is too soon to tell for sure, but so far it seems to be helping!