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Crohn's Disease Forum » Extra Intestinal Manifestations » Arthritis » Arthritis starting up again what can I do about it?


 
05-06-2012, 11:58 AM   #1
Soybean
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Arthritis starting up again what can I do about it?

Hey guys,

So, before I was diagnosed and started any treatment for crohns I had 'sero negative inflammatory arthritis' my knees (mainly my right knee) and ankles were very swollen, painful and unable to bare much weight. My toes, foot arches and left wrist were painful, like someone had been jumping up and down on them, had restricted movement and again couldn't bare much weight. This went on for several months and although I was given lots of different treatments none were very successful. I tried paractamol, ibuprofen, diclofenac, paracetamol and codeine, fluid drainage and steroid injections (in that order). The thing that helped the most were the steroid injections, but they only lasted for 2 weeks max. The other treatments didn't help with the swelling or pain.

Fast forward to the present day and the arthritis has started manifesting in my small joints, wrists, left foot arch and ankle. The small joints have been happening for aboot three or four months, but I've mainly been able to ignore them as they are more of an annoyance, the small joints on my fingers get red and swollen, stopping me from being able to bend my fingers properly or grip heavy things. For the last month my left wrist has been painful, had restricted movement and been very weak, getting progressively worse as the weeks go on. Over the last few days my right wrist, left foot arch and ankle have started to join in

I, for the last two weeks have promised myself that I will get a warming wrist support, but haven't got to the shop to get it yet, I will deffo get it at some point this week, just have to convince my fiance that it is a neccessary expence haha! (but that's another story that I won't go into!)

Anyhow, I've managed to babble and not get to the point as usual lol I have been looking at celecoxib as a potential treatment, but need to get my GI's permission and then go to my GP to ask for it - haven't done it cos I've been in denial, telling myself that there are people worse off and I shouldn't bother my IBD nurses, that I'm sure it will get better in a couple of days, but that's not happening so I need to do something aboot it instead of ignoring it.

Does anyone know if this is a potential side effect of Remicade, or is it the crohns rearing its ugly head? Any other alternative treatments that you think will be effective?

I have been having some other crohns type symptoms like bms changing from C to D, but the frequency is still very low (max 3 daily, usually once daily), what I presume was a sort of UTI last week - increased frequency, but small output, dark, smelly, cloudy urine which after 5ish days started to cause pain after going but after treating it with cranberry juice and increased water intake it seems to have settled down. GERD symptoms and aboot 5 - 6 weeks ago some sort of partial blockage maybe? - was woken up because of pain in right lung which was stopping me from breathing properly, then I noticed pain in the lower part of my stomach, which got worse and worse, felt very sick and fainty, eventually projectile vomitted which relieved some of the pain, only for it to come back again, and after projectile vomiting again the pain settled to a level I could block out by sleeping. Felt in pain and bruised for a few days after and then it settled again.

Sorry for such a long post which could have been summarised in a couple of sentences lol - I'm rubbish at explaining things IRL but give me a keyboard and I'm away! haha!
05-07-2012, 04:28 PM   #2
persephone300
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I've been in infliximab for about 14 months now, and have recently - last couple of months, started getting random joint problems, in my fingers, ankles, knees, shoulders, not always in the same place, and they come and go but it gets worse during the day and can be painful.

They think it might be drug-induced lupus from the meds - but are referring me to a rheumatologist to find out. Apparently, it can be caused from the infliximab infusion.
05-08-2012, 10:45 AM   #3
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Aww man I hope it's not DIL persephone300. How long do you have to wait to see the rheumatologist? Are they holding off on your infliximab until you see the rheumy? xx
05-08-2012, 12:19 PM   #4
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I had the opposite reaction to Remicade that Persephone 300 had. I was diagnosed originally with Fibromyalgia about six years ago and have been taking cymbalta. Then, the rheumatoid arthritis pain started the same time my symptoms from Crohns/ colitis started. I have been diagnosed with all three. Crohn's, ulcerated colitis and rheumatoid arthritis. Since I have been taking the Remicade it dramatically reduces my arthritis pain. Towards the end of my infusions I can tell the pain is gradually coming back and my hands gets very stiff and painfull and I can barely move them. Once I get a new infusion the pain magically goes away. Remicade, Azathioprine and methyprednisone in combination have brought me into remission and it has literally saved my life.
05-09-2012, 02:52 AM   #5
persephone300
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Apparently there's a 12 week waiting list to see the rheum. I've never had any arthritis or anything like it before. I'm not sure what they're going to do about the infliximab, but this time it seems to be failing anyway. I am giving serious thought to having the surgery.

I assume that if I have that done, no infliximab = no nasty side effects, less colds, cellulitis, no DIL (if that is what it is). I've asked to go back to the surgeon to have another discussion, cos the last time I didn't want to know.

Chrona - wow that sounds like it helps a lot. Don't they treat rheumatoid arthiritis with things like azathiorprine etc anyway? My doc says that pred helps those kind of symptoms too
05-12-2012, 10:36 AM   #6
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I'm sorry you're having so much trouble The only thing that comes to mind for me is whether you've had your vitamin D levels tested and what they are. But count this more as a bump for additional advice from others

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05-12-2012, 12:56 PM   #7
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Oh, I can totally sympathize! I've been through the joint pain, and have also tried the same treatments you have. Remicade has helped me the most with this, but it isn't perfect. Have you been checked for RA?

Adding Methotrexate can help quite a bit, in addition to the Remicade. It's a once a week shot or pills that can be increased or decreased depending on the severity of your symptoms. It works well for me.

Also, on the supplement front, I use Bromelain which is derived from pineapples for inflammation. Vitamin D deficiencies which are common in Crohn's patients can also make for painful joints and muscles, so you might get checked for that, too.

So sorry you are suffering, I hope you find relief soon! Keep us posted on how you're feeling. Sending hugs!
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05-14-2012, 10:29 AM   #8
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Thanks guys,

So, I finally plucked up the courage to ring the IBD nurse. She listened and said oh and oh dear quite a lot. She says she'll let my GI know but doesn't think he'll do anything aboot it. She's a bit worried that it might be because of the Remicade due to the fact that the wrist pain (not the finger and toe pain) started 3-4 days after my last Remicade shot.

She asked me if I'd been on any Sulpha drugs (which I haven't), but didn't say any more aboot that. I asked her aboot pain relief suggestions, after telling her that the wrist support wasn't doing much, and she wasn't sure so I mentioned the celecoxib and she said 'hmmm are they the ones that are ok to take' I said 'they are cox 2 inhibitors' so she said yes she thought that would be ok to take. I said I'd go to my GP and ask for some, but she wasn't sure whether they would prescribe them for me?? She wants me to ring her next week to let her know how I'm getting on.

Gonna ring for an emergency appt tomorrow morning, hopefully I'll get to see a dr not a triage nurse. Any tests I should be asking for alongside asking for the celecoxib?

David, I asked for my vit D to be tested last novemberish when I was feeling shaky fainty and tired, but they said it was fine then (they didn't give me the figures) so should I ask for that again?

Should I mention testing for DIL? Is there even a test for it?

Mountaingem, back when I first had all the swelling and pain they tested for RA but it was negative, I think that's why they labelled me as sero-negative inflammatory arthritis' because it has the same symptoms etc as the RA just doesn't have the rheumatoid factor, or something like that I really don't wanna go on Methotraxate cos I want to start a family in the near future, and don't want something like that in my system at all before that happens if I can help it, but if they can't control the pain and weakness and it gets worse I guess I might have to reconsider. I've seen those bromelain supplements - might be a silly question, but I find pineapples cause my to have really bad reflux - which is annoying cos they taste sooo good!! lol. Would bromelain cause the same problem or is it nothing to do with that enzyme?

I also forgot to mention to the nurse that I'm pretty shaky still (it's got worse since november - where the IBD nurse took me off 6MP due to the sickness, shaking, fainting etc, it's mainly in my hands/arms). It doesn't seem to matter if I've eaten or had enough to drink etc it just happens - I have just been living with it and not mentioning it cos I don't see what they will be able to do for me. I kinda think maybe it's cos I'm not fit enough or strong enough iykwim (I'm going to start an aqua aerobics class next week as when I had physio she got me doing hydrotherapy which really helped). It's more of a nuisance than anything, and sometimes embarrassing like last week at my sewing class where my hand was sooo shaky I took ages to make each hem stitch lol


Thanks for your help guys
05-14-2012, 10:31 AM   #9
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Yes, ask for D again. And B12 and folate if you haven't had them lately.

And demand the actual numbers
05-15-2012, 05:35 AM   #10
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Aaaaaarrrrrgggghhh!! Bloody doctor's frickin useless! Rang up for an emergency appt and was told it was with Dr Jones (the Dr who originally treated me and continued to ignore my bowel problems, concentrating on my joints instead) so I thought oh great this will be a waste of time. The first thing he said to me was its funny it's your joints again cos it all started with your joints didn't it! To which I responded with a mumbled well ummm cos I get so tongue tied (and it didn't all start with my joints, my bowel problems have been going on for years, and when this lot of treatment started it started with stomach pain, but the joint problems were more pronounced). He also went on to kinda wash his hands of doing anything but prescribe me pain killers as infliximab is a hospital only drug and as they don't even have it as a shared care drug he doesn't know anything aboot it cos, you know, god forbid he actually picks up a book and reads aboot it!

After he suggested giving me tramadol I said aboot the celecoxib so he said we could give that a try but to come back for tramadol if it doesn't work. After that it became apparent that he wasn't gonna do anything else so I said would it be a good idea to test for vit d, b12 and folate. He said did the nurse suggest that too so I said no (should have lied but i can't) so he checked my records and said last time b12 and folate were done in october they were fine and they are usually done anually, then I said that my vit d was very low back when i was diagnosed and he saw that I'd previously had calcichew d3 forte so it looks like I'm only going to be tested for vit d.

Man I'm so angry right now, at my Dr for being a dick and just washing his hands of trying to find a cause other than the hypothesized Remicade side effect, and me for being such a bumbling fool who can't get her words out around drs etc

I asked the reception staff how I go aboot getting copies of my medical records and they looked at me gone off (I guess people only ask for them if they want to sue lol) and the lady said I have to put it in writing and pay £50 so I guess that's what I'll be doing later on. I'm deffo gonna change drs now, the only reason I've stayed with these for so long is that they are a richer surgery so seem to have more amenities etc

Thanks for letting me rant, any ideas of how I can increase my confidence so that when I speak to the drs I speak with confidence so they realise I'm not stupid and have researched my condition before I get there. Even when I write down my questions I still get shy and don't ask them it's so stupid.

Siobhán xx
05-15-2012, 08:43 AM   #11
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Do you know what your B12 was last time you were tested?
05-15-2012, 09:11 AM   #12
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He didn't tell me anything other than it was fine. I've got the phlebotomist tomorrow so I could ask her if she's able to check for me.
05-16-2012, 06:56 AM   #13
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I asked the phlebotomist for my b12 and folate results, but he wasn't allowed to access my records so the receptionist printed out all the blood tests I've had since 28/6/2011. I don't really understand them, but in the FBC and I think LFT where there is a range, all but one fit into the ranges although they are nearer the lower end of the range. I can put them up if needed.

My B12 and Folate were tested on 10/10/2011, again, although nearer the lower end of the range, they are still inside it.
Here they are:-
Folate blood level = 6.4ug/L Serum Folate (3.1 - 20.0)
Serum vitamin B12 = 236ng/L (130 - 900)

I was definitely only being tested for Vit D today, and will have those results by 3pm next Tuesday.

Took a celecoxib 100mg last night, took aboot 30 mins to start taking an effect. Didn't completely remove pain and restricted movement, but made it a hell of a lot more bearable. Today my stomach was in a lot of pain followed by D which has relieved the pain, not sure whether it is related to celecoxib or my time of the month so although I'm going to have to take a tablets before my sewing course tonight I think I won't take any more until my p has stopped so that I know for sure whether the celecoxib caused the pain and d or not.

xx

Last edited by Soybean; 05-18-2012 at 08:17 AM. Reason: put ng instead of ug on folate level
05-22-2012, 11:40 AM   #14
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Just rang for my vit d results and they're not ready yet apparently they can take over a week, so I'm gonna ring back on thurs pm. Arthritis has spread to both feet now and celecoxib isn't helping with the pain, but is doing a good job annoying my stomach lol. Will have to have a think aboot whether I ask the Dr to prescribe the tramadol that he mentioned. Not sure but I have one patch on my elbow that is poss that erythema nodosum thingy, will post a pic in a new thread. Maybe the warm weather will help make thinhs better hehe!

Soybean xx
05-22-2012, 11:54 AM   #15
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My B12 and Folate were tested on 10/10/2011, again, although nearer the lower end of the range, they are still inside it.
Here they are:-
Folate blood level = 6.4ug/L Serum Folate (3.1 - 20.0)
Serum vitamin B12 = 236ng/L (130 - 900)
Do you have a coin? If so, flip it. Heads you are deficient, tails you aren't. I say this because 50% of people with serum B12 levels between 200 and 400 pg/ml are actually deficient despite being "normal" according to reference ranges. You either need to have your methylmalonic acid and homocysteine levels tested to find out if you really are deficient, or supplement and get your levels above 500. Your numbers are in ng/L which is slightly different, but my statement still stands.

Can you describe the pain in your feet please?
05-22-2012, 12:02 PM   #16
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I know exactly how you feel about describing symptoms to the dr, they usually stop you mid sentence then go off at a tangent, and never get to hear the whole picture!

Ive now started to write a note of how things have panned out, so that they can see all the things i have had to deal with, and everything is in front of them - i find that helps a great deal, and i dont come across as a bumbling whinger!!

It also helps to keep copies and add to them when you get transferred from pillar to post, then every doctor you see is well informed. It gives me confidence as well that i havent forgot something, and want to kick myself when i get home!

Deb
05-22-2012, 12:18 PM   #17
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Ok, here goes (Sorry if this makes no clear sense, I'm rubbish at describing my pain) So the pain is there in the morning, but gets worse the more I do, and then once I've been sat down for a while and then get up again it's hard to walk for a while until I get used to it - I still limp though. Its mainly across the top of my feet (between my ankle and toes?). My feet feel achy, bruised, stiff and the pain kinda pulses. The more I do the worse it gets and the foot kinda locks iykwim (same with my wrists/hands) and then causes a sort of shooting or 'high pitched' pain when moved. My feet are also hot, which is unusual cos they are more often than not cold.

David, sorry to sound dumb, but for the B12 you mentioned pg/ml and my result is in ng/L I'm guessing ml = millilitre and L = Litre, but what do the ng and pg stand for?
05-22-2012, 12:21 PM   #18
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oops just re read your message and noticed that you have already answered aboot the pg & ng sorry my brains obviously gone walkabouts

Also I think I'll go with the supplementing myself option cos I doubt my dr is gonna want to do any more tests.
05-22-2012, 12:31 PM   #19
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With the feet involvement and the rash, I'm starting to wonder about drug-induced lupus erythematosus which Remicade can cause. I'd suggest discussing that possibility with your doctors to see what they think.

pg is picograms and ng is nanograms. pg is "convention" units and ng is "SI" units. Kinda like the whole yard and meter thing. It can get confusing and we have to be careful about it as it can throw things off.
05-22-2012, 12:48 PM   #20
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Thanks for explaining the pg & ng - I missed the majority of my high school years due to illness so I'm not so clued up on all of these things. I think mcg is as far as I've got to lol and that's only cos I needed it in my job

I'll give my ibd nurse a call tomorrow and talk to her aboot all the things suggested. I can feel myself getting scared aboot potentially coming off Remicade, which is totally stupid I know, seeing as it could be causing all these problems, but I don't want to be like I was before wih all these symptoms and more. I know if I come off they'll suggest something else instead, but even though my head tells me to think rationally my heart is kinda like this haha!

Right enough of me babbling I'm off to make 150 paper seed tags for the Cardiff Transition launch tomorrow wish me luck

Thanks for all the help, you guys are awesome
05-22-2012, 01:02 PM   #21
handle
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perhaps trivial info' only but:
1 nanogram = 1000 picograms
(ng/litre =pg/ml)
05-22-2012, 01:20 PM   #22
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Not trivial at all, thanks handle. I couldn't find the conversion between the two but figured that since the reference range was 130-900 it was a bit different. That they are calling 130 normal is... I don't know if the correct word is negligence, incompetence, or laughable.

05-22-2012, 02:24 PM   #23
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Yes. As you have correctly pointed out before, it's commonly noted that Europe and Japan have lifted the archaic standard 'low level' (calculated back in the 1950's) to over 500pg/ml.
[The S.I unit is picomol/litre, (multiply pg/ml by 0.74)]
05-22-2012, 02:28 PM   #24
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I'm familiar with pmol/L and pg/ml for B12 but ng/L was new to me for measuring B12 so figured it was SI. I'm starting to think I was wrong about ng/L being SI. Was I?
05-22-2012, 02:37 PM   #25
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I posted before you.....
picomoles are a 'Standard International' measure that compares the number of atoms of a substance to the number of carbon atoms in a similar weight!
05-22-2012, 04:02 PM   #26
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Yes. As you have correctly pointed out before, it's commonly noted that Europe and Japan have lifted the archaic standard 'low level' (calculated back in the 1950's) to over 500pg/ml.
I've seen that stated around the internet and repeated it a few times myself, but now don't know that it's true. Every lab report coming out of Europe doesn't have a reference range above 500 and I asked someone in Japan and they had the low reference range as well. Do you have any proof of the reference range increase? It'd be great because it would be correct, but I'm not sure that it's true they have done so.
05-22-2012, 08:25 PM   #27
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It seems the rhetoric about European and Japan levels of B12 being set above 500pg/ml is largely unfounded. There are numerous references to:
http://www.ncbi.nlm.nih.gov/pubmed/3398357 (including use by wikipedia where this higher range is noted) but no actual data directly linked from any medical laboratory database.
I would have to conclude that the higher reference range is 'recommended' (with sound reasoning behind it) but that there is no higher reference range currently in use.
06-01-2012, 10:55 AM   #28
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I went in to see my IBD nurse on Monday and she took bloods to test my inflammation markers and had a long chat with me. Typically my joints and the rash had got considerably better on the Sunday (although some of my finger joints had swollen again and she thought they kinda looked like gout) we both thought it was because of the glorious sunshine we had over the weekend. She's written all the info down and is going to discuss it in a MDT?? (I think they were the letters she said and I reckon they stand for multi diciplinary team) meeting next Wednesday. She didn't mention the prednisolone this time, but did say she doesn't think my GI will want to take me off the Remicade unless it's really necessary, so we're gonna see what happens after my next infusion (next Friday) before we make any decisions.

The rash is only slightly red still and the arthritis has got worse again, but this time has moved more to my knuckles and fingers aswell as my feet. I reckon it getting worse again deffo has something to do with less sun exposure this week, because over 2 weeks ago I asked my dr to test my vit d level on Davids suggestion (thanks David ) and have finally got the results today. I'm not sure if the receptionist said my levels were insufficient or deficient, but my dr has put me on fultium (a vit d capsule 20mcg http://www.mhra.gov.uk/home/groups/p.../con137942.pdf ) and has prescribed it for long term use. I asked for my vit d level and the lady read out '250h vit d3 10.3' and then read a note saying levels between 10 - 20 are deficient.

Thanks for your help guys xx
06-01-2012, 11:41 AM   #29
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· Stoma
Ok so, I have read your first and last post, so if ever that has already been mentioned if so, I'm sorry to be repeating infos.

To me, it seems like the reaction I had with humira. When I started the treatment I had all sort of skin issues at random places on my body. Later, during the summer, I would go out on sunny day and I would barely be able to walk at night as my toes would be all puffy (what they called sausage toe: swollen, red and hot from synovitis). I would have intense pain in my hand joints, fingers and wrists to the point opening a door was sometime close to impossible and forget about opening any type of bottles. Mainly my issues were all concentrated in feet and hand but I also had some pain in my knee and shoulders and elbow. It would last for a day a 2 and migrates to another location.

Everything in the blood test would point towards a drug induced lupus but, because I was not complaining that it was worst right after the injection (which is what they had seen so far in case of drug induced lupus), they were not able to confirm it but had nothing else to suggest. From my understanding, these symptoms are related to the anti-bodies anti-humira forming and my hypothesis was that it's also what explained the failure of my treatment after that. But hey, I'm no doctor, I just make the link that seems obvious to me.

That being said, if you have not met a rheumatologist yet for these manifestation, both your skin and joints issues, it would be a must to have that done. It seems quite possible that DIL is what is bothering you and it needs to be checked carefully if so!

Take care!
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06-01-2012, 10:58 PM   #30
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Soybean,
I am so sorry you are have such a time with the pain and the doctors. I will be following you because your posts almost mirror exactly what I am experiencing. Some days it will be in the right wrist, left knee, left hand pinkie then it will be right arch, left elbow. I have dry blisters and peeling palms and this all makes me feel like I am crazy. This all start at the end of April, almost a year after starting Remicade. The D and crohns pain has pretty much gone. So the doc says the Remicade is working and does not want me to stop. I also get total relief from the random joint pain after a Remicade treatment for about two weeks. Then it all comes back until the next treatment. My blood work did not include a Vit D level so I am also going to peruse that too. I have been reading about the elimination diet and may try that to see if maybe some foods maybe part of the problem. I typically can tolerate a lot of pain but only having two weeks each month without pain then a month of severe pain joint that moves around has been a challenge.
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