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


 
06-09-2012, 12:25 PM   #31
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DMSO works for me i am amazed. It took 2 days and its cheap
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1996 Crohns Colitus diagnosis 1996 small bowel resection. Osteonecrosis both hips replaced 1997 & 1998.Tried everything. Now on remicade
12-13-2012, 10:36 AM   #32
Soybean
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Hey guys!
It's been a while since I updated this thread, but the joint and skin problems have continued. I thought it would be a good idea to explain what has been happening so that if this is happening to anyone else they can go to their GI and ask about having an ANA test.

12 weeks ago my GP put me on a 6 wk reducing course of prednisolone cos I couldn't cope with the pain etc. The pred really helped with all the joint and skin problems. Within 12 hours of taking it, it had un-crippled my finger (in the album I've linked to there is a picture of how my finger had decided to set itself. This had happened a few times on various fingers, but this is the only picture I have), but as soon as I got down to 10mg joint problems started again.

At my last but one GI appt (6 weeks ago) after giving the GI a letter explaining all the joint and skin problems (plus some tummy problems - most notibly very painful GERD that happened all day regardless of if I'd eaten or drunk anything - which was relieved by the pred) he just said something along the lines of well your calprotectin test came back ok (taken 5 months previous to this appt!) and I don't think these symptoms are to do with Infliximab so we'll keep you on it for now. I was really upset that he could read about all the pain I was in and how s**t my quality of life was and then just basically say oh well! so I asked him if he thought it would be a good idea to do an ANA test just to make sure. He got a bit flustered, said hadn't the Rheumy dr done that already and said he'd go check the system (I have had quite a few GI appts since these symptoms have been happening, one Rheumy appt and a lot of Infliximab infusions - every time I have mentioned all the problems and although the IBD nurses originally mentioned DIL and I have quite a few times mentioned my worry that it is DIL no-one has ever ordered a test for it). When he came back in the room he gave me blood forms to have my RF, ANA and ANCA tested.

Fastforward to my Infliximab appt 2 wks ago. Before the nurse set me up with the infusion I asked if they'd had the results from the blood tests (cos I didn't want to have the infusion if it was causing all these problems). She couldn't get into the system so we went ahead with the infusion.

Two days ago I had another appt with the GI. He started off asking how I was - to which I told him that since the infusion (apart from a 48hr skin rash over my hands 2 days after the infusion - which I forgot to tell him about doh!) I have so far been well in my joints. He went on to say the ANA came back positive for DIL, but then seemed to start saying that as I was ok atm they were gonna keep me on infliximab! I had taken my fiance Sam into this appt with me because of what happened last time, and he just started bombarding the dr with questions and complaints about my treatment. The dr got really flustered and kept saying I'll just go and have a word with Dr Hawthorne (the GI who runs the clinic) but Sam just kept talking! I felt bad for the GI, but I'm glad Sam was there to actually keep on about my quality of life etc cos I would have probably have just gone along with what the GI suggested, cos I get too het up and therefore unable to stand up for myself. Eventually the GI went out to chat with Dr Hawthorne, and Dr Hawthorne came back in to speak to us. It was decided that I should come off Infliximab and retry Mercaptopurine at 25mg to start off with, increasing if my body copes with it (I was previously on Mercaptopurine, but had problems with my WBC and sickness/dizzyness, and because I had drug induced hepatitis from the Azathioprine they decided to air on the side of caution and take me off it). He did originally suggest Methotrexate but I said I don't want to go on that because we want to start a family once our weddings over next August (fingers crossed ) and he didn't want to try Humira just yet because of it being similar to Infliximab.

So that is where I'm at atm. I have put a link in to my picasa album so that if anyone else is experiencing anything similar they can have a look at the swellings and rashes and see if they are the same. I will also post a copy of the letter I wrote again so that if you are experiencing anything similar you can chat to your GI about the possibility of DIL.

Link to my album on picasa

Siobhan xx
12-13-2012, 10:38 AM   #33
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Bowel, joint and skin problems since August Infliximab infusion (31/8)
Two days after infliximab infusion knees swelled up (left more than right). This lasted 4 days. Wrists were really weak/cracking and feet felt stiff/tight across the top.
For about two weeks following this only real bother was tiredness – sleeping 12/13+ hours a day, and still feeling tired. Then the following two weeks skin rashes worsened.
Monday 3rd Sept – Wrists started feeling really painful and weak. Felt and sounded like they were crunching. Really painful to rotate – sharp shooting pain – felt like wrist would snap. Pain would make me gasp/shout in pain.
Felt sick most of the day – Whilst sitting down started feeling very sick – dry heaving – couldn’t move as I felt I would throw up. This passed after 5ish mins. Rest of evening stomach made loud swishy/gurgling noises – not like gas, more like liquid. After 2ish hours had to run to the toilet. Had small BM then once stood up had to sit straight back down and had very watery D. This happened 4 more times in the hour then went back to normal.
Throughout week wrists fluctuated between good and bad. Other joints joined in to incl:-
• Knees – felt like they would snap so had walk funny to compensate.
• Feet – very stiff. Sharp pain in arch upon walking.
• Elbow and shoulder – restricted movement. Felt very stiff – would click upon movement, making me gasp.
• Jaw – stiff and painful. Hurt to talk and eat. Pain mainly on LH side.
• Random lumps on head – Would appear overnight/through the day. Sometimes would stay for a couple of days, other times they would be gone in 24 hours. Felt like water/swelling under skin.
Over the 8th, 9th and 10th wrists/ hands very painful especially right hand. Fingers felt swollen and on the 9th right hand went into a claw shape which I couldn’t straighten. When I tried I could get to a certain point and then a lump would appear on little finger tendon – very painful.
During this time stomach has been having random pains. Some feel like a stitch/tightness (RH side of belly button) others feel like a pulsy/stabby pain (just inside hips both sides). Feeling sicky often and getting a lot of acid reflux? Bubbling which sometimes causes pressure/pain across chest.
Whole body has been feeling achy/bones felt bruised – almost as if I have the flu, but I haven’t.
W/c 10th Sept – Spent a lot of time sleeping due to general under the weather/flu like aching and joint problems making it difficult to move around. On the Friday was able to move around a bit better so decided to go to the Drs about skin and joint problems. Dr gave me steroid and antibiotic creams for rashes etc. and ordered blood tests. Didn’t do anything about joints as they seemed okay when I saw her. By late that afternoon after doing a bit of walking/sitting knee joints totally seized up causing immense pain.
Over weekend stomach pain got much worse – kinda like acid indigestion/reflux where I would burp or feel acid bubbling up my throat followed by a wave/bubble of pain going up and then back down, radiating across my stomach – Caused me a lot of pain and discomfort. This would happen regardless of if I’d eaten. The glands in my neck were swollen, plus more swollen lumps on my head. Had a pressure band over the top of my head.
w/c 17th Sept – Joints continued to worsen over the weekend, getting so bad that my fiancé had to wash me due to wrists locking/cracking/pinching. Finger joints painful. Some swelling, some had red lumps. Middle finger on left hand bent and couldn’t straighten. (see picture) It was very painful upon waking and for the first few hours. After showering it was slightly less painful unless trying to straighten.
Went to Dr and after speaking to Gati he prescribed Prednisolone Soluble 5mg tablets on a reducing course (40mg, 30mg, 20mg, 15mg, 10mg and 5mg each for a week)
Also throughout all of this had rashes/extreme dry flaky patches all over my body: - knee/calf, back of thigh, under and above eye (mainly L eye), chest and neck, hands corners of mouth, and ears. – see pictures.
Tuesday 18th Sept – Started pred sol 5mg t x 40mg. Was in considerable pain upon waking. Aching all over, cracking/pinching joints, LH middle finger still bent over. Throughout day aching started reducing, started being able to walk with less stiffness and pain. Stomach pain considerably lessened – no longer almost constant burping and acid followed by pain, just occasional and less painful. By next day LH middle finger almost completely straight.
Whilst on pred joint and stomach pain removed, but still very tired. Some skin rashes/infections gone, but when I got to 30mg fingers got extremely dry and flaky – even wearing cotton gloves with loads of Epaderm on did nothing to stop it, neither did hydrocortisone cream. This lasted about a week and then went away. At 30mg had three days where I had rusty red blood in mucus with every BM, but not much. At 10mg mild joint pain started up again. On the second day of 5mg dose red swellings on fingers appeared - see pictures. On the last day of 5mg dose (29th Oct) was woken 3 times in the night due to extreme pain in R had and upper arm (by elbow) and L knee. When I woke up in the morning I had a big red swelling on upper arm, bent over little finger with red lump on tendon and lump on left wrist. My throat felt very swollen and my whole body ached. Next day lumps were still there, still had swollen throat and joints, but didn’t feel as bad as the previous day.
12-14-2012, 12:03 PM   #34
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Soybean, I so sorry that you are experiencing so much pain. I posted a while ago that your problems were very similar to mine, the typical crohns stuff, with joint pain and rash. I know everyone is different and I won't say what has helped me will help you but after about 6 months of only getting about 10 days of relief a month I needed to have some control of the things I felt I could control. The Dr. said Remicade was working but I was building antibodies and needed to say on it for as long as I could tolerate it. She also added sulfa(something) for joint pain, I'll post the correct name later when I have it front of me.
But to get some control I have eliminated all white sugar, all processed food and preservatives. It sounds difficult but it really has not been too bad. I just eat mostly fresh foods. I still have to be careful with raw fruits and veggies so most of those are usually cooked or puréed into smoothies. The results for me have been good. The symptoms still come back but the time between has improved. The dr. said the diet makes no difference it's the medication but keep doing the diet if it makes me feel better because it will not hurt me. I am too scared the pain and rash will come back if I go back to my old ways.
01-01-2013, 10:26 PM   #35
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Thanks Mozart, happy new year to you! and well done for carrying on with the diet changes that have clearly helped even though the drs don't see the connection.

After two weeks of no joint pains the pains and immobility has come back with a vengeance, I'm counting down the days to when the remicade is out of my system lol. Over xmas we visited my fiances family, and his dad made me the most gorgeous fruit and vegetable juice using his new oscar juicer. I'm going to save up and buy one because I still want to eat fruits and nuts (it has a grinder that breaks them down into a paste consistency) to get all the vitamins and minerals but in a safe way that will not upset my stomach now that I will no longer have the remicade helping keep my stomach well.

I don't eat many processed foods in my regular diet - we tend to cook from scratch using organic veg from my fiances employers, organic grains from suma, fresh eggs from our chickens, and organic meat from a small company over in England. I do however have a sugar addiction! We try not to keep cakes/biscuits/chocolates etc in the house unless I've made it myself, because I will just eat them all if they're there. Unfortunately because of xmas we've been given far too many chocs and sweets - I've eaten a fair bit over the last few days, but the rest will hopefully make its way to the bin unopened.

I definitely want to make my diet a lot healthier in 2013 and what better inspiration than your post - cheers!!

Soybean xx
01-03-2013, 12:57 AM   #36
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Hi, I'm new to this thread. I am not on any of those meds for crohn's. Just cholestyramine for the diarrhea I get. Lately my rheumy had put me on neurontin for my arthritis and fibro pain. I swear it made me worse. I had plantar faciitis for the first time ever. My thumb/wrist pain was almost intolerable. I gained five lbs so fast and it caused my fingers and ankles and eyelids to swell very bad. I was like in a daze alot. My sight was affected too. hazey!Slept like a log at night.
I have itching all over. Have stopped the neurontin and lost the five lbs. almost within a few days. I cut back slowly off the drug. My hands actually feel a little bit better. Does anyone have arthritis that seems to hit one joint and stay for a week or two and then move to another. My left hip area was so bad in the mornings, I could barely get up. Once I moved for an hour, it loosened up. So many places of pain on my body! I take fishoil and 5000 mg. vit. D3 everyday and ginger capsules twice a day. Pain meds when I have them. My regular meds for depression and anxiety only take at night now. I just need some advice about the pain. I am seeing my rheumy again Jan 15th. I had kidney cancer in 2009 so I have to watch what I take that could be hard on kidneys and intestines. I do have mild psoriasis too. My scalp and legs mostly. Thanx for any type of treatments. Happy New Year to you all! Teresa
01-05-2013, 09:49 AM   #37
Soybean
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Hey Teresa, so sorry to hear you are in so much pain I'm not sure what to suggest as the only thing that has removed the pain for me is prednisolone and to reduce the pain - sleeping lots (between the pain waking me up). Hopefully the rheumy will have a better treatment plan for you - make sure you let them know exactly how bad it is, don't sugar coat it for them.
What about hot compresses, massages, baths with epsom salts? They might give a bit of temporary relief.

Sorry to hear about the neurontin, it's not a nice drug is it! I know others have used amitriptyline for pain relief with great success. It is used for neuropathic pain, as is neurontin. With it being a tricyclic anti-depressant it might interact with the anti-depressant you are already on. Maybe worth a mention to the rheumy?

Funny you mention the cholestyramine cos I was just yesterday reading my vitamin D3 PIL and it mentions not to take the vit D3 with cholestyramine due to it potentially reducing the absorbency of the vit D3 http://www.medicines.org.uk/emc/medi...C#INTERACTIONS so I wouldn't take them together, leaving at least a 2-4hr gap between them. You probably already know this, but thought it best to mention just incase

Really hope the rheumy dr can help you get out of pain.

Hugs xx
01-05-2013, 09:56 AM   #38
723crossroads
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Thankyou for your response. I am a little bit better since off the neurontin?? Don't know why though. The next step she mentioned was Cymbalta. Have you or anyone you know had success with it? I am hoping. They would take me off the Effexor and put me on that. Not sure what to do. I have essential tremor and they all seem to make me shake even worse. I also heard Cymbalta makes you sweat too. I don't like the sounds of that. I already went thru all the hotflashes,UGH!
Thanks and hope someone can answer my question about Cymbalta.
Blessings! Teresa
PS. I always take my Cholestyramine 4 hrs. after morning meds. It is such a blessing!
01-05-2013, 10:18 AM   #39
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So glad to hear you've had some relief since being off neurontin.

I haven't heard of anyone being on cymbalta for pain relief, but I'm sure someone else will have. It might be worth starting a new thread asking for opinions on cymbalta as a pain relief treatment so that more people see it and respond.

Just had a quick nosey in the bnf and both efexor and cymbalta have sweating as a potential side effect. Hopefully cymbalta will not cause that particular side effect for you

Fingers crossed the cymbalta does the job and doesn't exacerbate the essential tremor.

01-05-2013, 10:19 AM   #40
723crossroads
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Thanks Soybean!!! I appreciate your help and caring!!!!
01-20-2013, 04:35 PM   #41
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Hi i have crohns disease since 1999, iritis since 2010 and my hands have started to lock. Is this normal in crohns disease? Do i need to make an appointment with my gp? I am due to start humira soon for my crohns disease and iritis.

Thanks

Alison
01-20-2013, 05:02 PM   #42
Soybean
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Hey Alison, sorry to hear your hands are starting to lock. Arthritis can run alongside Crohns as a secondary symptom, like iritis and erythema nodosum. Great that you are shortly going to start on Humira as this medication was, afaik originally developed with rheumatoid arthritis in mind, so it should help with the joint problems you're having aswell as the crohns that being said I would still mention it to your gp and consultant so that they are aware of it and can possibly prescribe you something in the meantime to reduce the pain.

Soybean xx
01-20-2013, 05:39 PM   #43
723crossroads
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Hey Alison, sorry to hear your hands are starting to lock. Arthritis can run alongside Crohns as a secondary symptom, like iritis and erythema nodosum. Great that you are shortly going to start on Humira as this medication was, afaik originally developed with rheumatoid arthritis in mind, so it should help with the joint problems you're having aswell as the crohns that being said I would still mention it to your gp and consultant so that they are aware of it and can possibly prescribe you something in the meantime to reduce the pain.

Soybean xx
What is erythema nodosum???
01-20-2013, 06:02 PM   #44
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Hey Teresa
It's a type of inflammatory skin condition. I guess my post didn't link to the forum wiki because I didn't capitalise the words? Anyway, here's the link to the wiki that will explain it better than I can http://www.crohnsforum.com/wiki/Erythema-Nodosum

Soybean xx
01-20-2013, 11:33 PM   #45
723crossroads
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Hey Teresa
It's a type of inflammatory skin condition. I guess my post didn't link to the forum wiki because I didn't capitalise the words? Anyway, here's the link to the wiki that will explain it better than I can http://www.crohnsforum.com/wiki/Erythema-Nodosum

Soybean xx
Thanx Sweetie!! I appreciate it. I have skin problems they are patches of red that itch and drive me nuts for a few days!!!
01-21-2013, 03:20 AM   #46
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Hi thanks for the reply. I appreciate the feedback. I will let my consultant know what is happening.

Alison
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