New member...Question about joint pain?

[Sparky]

Hi - I'm Sparky, 38 year old mum to a 9 year old, married for 15 years.

I was diagnosed with Chrohn's almost 5 years ago, after initially being told it was food poisoning (lost 2 stone with the first episode), and then had more tests after the second episode (6 weeks after the first). I was diagnosed very quickly, there was no doubt on colonoscopy what the problem was.

I spent 18 months trying mesalazine, sulfasalazine, and other things I can't even remember (my mind wasn't functioning as it should at the time, combination of pain/malnutrition/exhaustion I think). Prednisolone was a life saver until the last time I took it 3 years ago when I had a fairly unpleasant psychotic episode - didn't know it could do that, my dh describes it as 'PMT to the power of 1000'

I finally settled on Azathioprine, which took it's own sweet time to work but eventually did the trick, and that plus lots of codeine keeps it more or less under control. Still find it wakes me around 5am to go to the loo, still need to give some thought to when I eat if I plan to go out, but it's really not too restrictive these days.

My problem is that at the same time as the Chrohn's appeared, my pre-existing Rheumatoid Arthritis got markedly worse. I went from having an occasional twinge in my knees to severe pain which has progressively increased and spread to all my major joints. What's difficult is that anything I take to bring down the joint inflammation adversely affects chrohns, and I end up not knowing whether the pain I have is RA pain, or joint pain due to Chrohn's being triggered by NSAID's, etc.

I guess having lurked around these boards a little, I wondered if anyone else is in the same position, and what treatments you've found effective? The joint pain is now the worst of it - I feel like I'm drowning in it somedays, and it's getting worse very slowly all the time.

Does anyone have any ideas, advice, thoughts on how to manage chrohn's related joint pain? I feel if I could do that, it would be easier to determine which of the joints that cause me real problems are truly arthritic, if that makes sense.

Thanks in advance - hope it's ok just to dive in and ask a question?

 

[El_Guapo1976]

Welcome to the forum. Im a newbie too xx

I get a lot of joint pain too. Im 31 and already have osteoporosis as a result of the steriods I took early in life.

At the moment I (dare I say it?) smoke hashis to kill the pain. Ok, it may not be your remedy of choice necessarily, but it is very effective.

If nothing else works, I would consider it. If you don't like the idea of smoking Im pretty sure the Doc can prescribve it in tablet form.

 

[mrs. vr]

I have TERRIBLE joint pain. In fact, that was my first really noticeable, consistent symptom. That's why I have a rheumatologist sort of overseeing everything at the moment. HE is convinced i have Crohn's, and I do have the ASCA antibodies, but up until now, they haven't been able to say that's what I have with complete conviction. (I'm waiting on results from a new round of tests).

The new GI doc I saw told me that the meds I'm on right now for joint pain (which, btw, don't really do squat) will be contraindicated if the latest tests confirm CD.

My rheum just told me the other day that if it is confirmed, they'll probably want to start me on Remicade or Humira as they are supposed to help address the joint issues too. (not sure if this has been people's experience, just what he told me).

I really DO feel your pain. I'm so sorry you're going through all this.

 

[rosie]

Im no help im afraid but hello

 

[butt-eze]

I have joint paint but not due to rheumatoid arthritis. Mine came because of the Crohn's. It sounds like you are a perfect patient for Remicade or Humira. They also treat RA. I started on Humira a couple of months ago in hopes that it would decrease the joint pain I experience.

Give that a thought. Welcome!

 

[Chrismom]

My son is 16 he does have some joint pain, but mostly he has tingling in his hands and feet. Doctor says that is one of the symtoms of Crohns (who knew?)

By the way, welcome to the board it is hear that I get a lot of information about this condition and it is so helpful.

 

[Sparky]

thanks for your replies I know I need to go back to both my chrohn's and rheumatology consultants, I guess I was just hoping to be able to have some idea as to which disease was causing the problem? So difficult because as one flares, so does the other :yrolleyes:

Dope smoking not an option - not for moral reasons, but because I work full time (albeit from home), and the two really don't mix

Remicade/Humira - bit of an issue re: funding. NHS is a bit of a lottery really, and I know that it won't be that easy, maybe I need to push a bit harder. The idea behind Azathioprine was that it would target both, which it does - just not enough, you know?

I had an almost pain free day 2 weeks ago. I woke up with nothing more than a twinge in one elbow, and it was like a miracle. I spent that day (a Sunday) like a little ray of sunshine, bouncing round the house, getting things done, giggling with my dh/ds. It was a lovely day - reminded me of how I used to be - but that in itself gave me a low moment, if that makes sense?

Anyway - thanks again for replying, this has always looked like a very friendly, positive board when I've lurked - nice to have that confirmed

 

[butt-eze]

How could we not be friendly towards someone named sparky. I'm not trying to hijack your thread but I am curious about your healthcare system. I have watched sicko and that documentary made your system look smart.

As you know there are politicians here who are suggesting that we have a more universal healthcare system. I am undecided and not looking for a heated debate.

Keep in mind that we aren't able to just choose our course of treatment either. With most insurance companies we need to prove failure of less expensive treatments before we can move on to Remicade and Humira.

 

[Sparky]

hey butt-eze, Sparky is an abbreviation of my dad's nickname for me (sparkleplenty). I use it on various forums, and it becomes sparks, sparkplug, etc. Does it have a particular US connotation?

I wasn't knocking the national health service - I went from ill and in agony to diagnosed in less than 12 weeks, which is quite amazing in the UK. My Chrohn's consultant has become a friend (weirdly, I went to school with his daughter), and I have the utmost respect for the 'free' healthcare we receive. I have a child who had a number of health issues when he was tiny, and the set up is that any problem he had, no matter how minor, was dealt with the same day, very often within the hour.

The problem with specific meds is that there are finite amounts of money allocated to areas within the country, and that money is further split within those areas. Where I live, there is a reluctance to spend money on 'new' drugs, when there are older, cheaper drugs that are proven to work (to an extent).

I'm good at chasing, harassing, grovelling - whatever's required! I also have a clinical (NOT medical) background, which means my GP (general practicioner - doctor) is happy for me to dictate to some extent what I take. That doesn't mean I can easily get 'new' drugs - it just means it takes a little research on my part, and convincing on his. He trusts my judgement, having had me as a patient for 10+ years - he knows me, knows I don't abuse the high street-value pain killers he prescribes, etc.

 

[butt-eze]

Sparky is a name we would use for someone who is upbeat and full of energy. Sounds similar to why your dad used it.

The healthcare system over there sounds like it works pretty well. Ours here is fine but far too expensive. We pay around $400 a month to cover my husband and son. Not sure how that translates to pounds.

I think that most doctors appreciative someone who is well versed in their own disease. However, I have had times that they seem annoyed that I can talk Doc Talk with them (only when it comes to Crohn's).

 

[Kev]

hi sparky.. was your dad a fan of dick tracy? sparkle plenty was a character in the dick tracy comics

 

[RHOV]

Hi Sparky! I also have RA. It flares at the same time as my Crohn's, but it's pretty much always there in the background of my life. Right now my jaw is affected.

As for meds, I was on azathioprine for a while, but it stopped working for me, and now I'm on a high dose of Remicade, which has done the trick so far. Once I've been stable on Remicade for long enough, I'm going to try to get my docs to let me go on methotrexate, which is used for treating both conditions like azathioprine. My rheumatologist didn't prescribe any NSAIDs because of the effect it can have on IBD patients. The only pain relief I have found is a huge dose of tylenol or prescription oxycodone.

 

[jed]

Right now my jaw is affected.

he he, i had guided CT injections of steroids into my Jaw for that, now that was a bizzare procedure!

hiyo sparky! i had really chronic RA from my crohns, but at the cmoment i feel great. i'm on methotrexate 20mg per week, and a drug called plaquenil.

my biggest change in my RA was when i STOPPED taking glucausamine and fish oil tablets. i know so many people swear by them, so i took them and was never getting all that much better. a month ago, i got a bit broke and couldn't afford it for two weeks, almost immediately i started feeling better?????? my doctor dismissed it as just the timing that i've been on the methotrexate, but i dont believe her.


best luck!

 

[RHOV]

he he, i had guided CT injections of steroids into my Jaw for that, now that was a bizzare procedure!

i had a steroid injection in February, which helped a LOT, but not enough. i still can't open past 3 fingers!

 

[butt-eze]

As I mentioned earlier. I don't have RA but my jaw has been popping lately. I tried putting three fingers in my mouth. That's all I can fit too. I don't think I could ever open it furhter than that.

 

[RHOV]

my rheum told me we were supposed to be able to open past 4 cm. I'm in the high 20s/low 30s still.

it's weird that your jaw pops. like when your fingers pop? i didn't think jaws could do that.

 

[soupdragon69]

Hi Sparky,

Good to see you found us and felt able to post!

I have been told I probably have RA as there are erosions at the base of my toes on my right foot on MRI and I am in constant pain hands, feet, shoulders and knees with my tramadol not touching it at all some days.

I have been on Remicade since June 07 and Rheums in conjunction with my gastro cons are starting Methotrexate next wednesday with me. I am really hoping it works and I start to finally get some relief.

I cant have NSAID's because they impact on my Crohns and my Asthma. Although my asthma consultant last week said he could do some sort of test on me in relation to it impacting on my asthma I still dont think I would want to take them because of the potential problems with my gut.

Keep chipping at them until you get something sorted! Hang in there and keep on posting here too!

Thinking of you.

 

[Sparky]

I can't believe how friendly you guys are, I'm glad I took the plunge and posted Thanks for all the advice, and it's lovely to know I'm not on my own - some days it feels like it's just me, you know? DH is very supportive when he's here (he travels with work, away at least 3 nights each week), but it's tricky when I'm on my own - I don't want to be constantly moaning to my friends, but it's hard to be upbeat all the time too. I shall go and have a look round the board now I'm sure it's ok just to dive in and post

 

[jed]

post away! moan away! laugh away.

we all understand your ups and downs, and when your up at 3am because of a pred buzz!

we are the new santa claus in your life, we know when you've been naughty or nice.

 

[ladyB]

My hubby is 3rd shift (not the same< iknow) but it feels lonely at times too.
We have all been there about the moanig...glad to have another set of hands to help with the moaning...lol

 

[sandra66]

Hi There,
Although not diagnosed yet, joint pain is a major issue with me and is making my life a misery, especially my shoulders and neck. I have tried many painkillers and havent yet found one that works but aloe vera juice does help both crohns and joint inflammation and flaxseed oil tablets are great. This is obviously non prescribed and they do little research on interaction with other tablets but I have had no problems yet. I hope this helps. All the best.