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12-08-2015, 07:12 AM   #1
KayleighMeek
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Arthritis flare again

I'm starting to really struggle physically and mentally with the joint pain that I have I only have brief periods of it not being there and usually that's when I am on steroids. Has anyone been on any treatments that have really helped them with this? Also has anyone had surgery on their bowel and joint pain improved?

I'm on cimzia at the moment but it's not working, I was hospitalised in August this year from pain crohns and joints and I was told by doctors to give the cimzia more time. Well I think I have given it enough time and I have only been off steroids for about a month. I have a 7 month old and I feel like a rubbish mum because I'm sick.
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Current meds
Cimzia
Methotrexate

Previous meds
Pentasa, Aza, 6mp, Remicade, Humira and Sulfasalazine
12-09-2015, 06:10 PM   #2
Lady Organic
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Hi Kayleighmeek. Im am sorry you are feeling unwell. I suffer from arthritis too. I have only seriously tried methotrexate for it and it didnt help me. There is sulphasalazine which can also be used which I didnt have the chance to truly try. may be this could be added to your Cimza? I have just learned that Stelara, another biologics, is good for both CD and spondyloarthritis.

as for me, I am more into exploring natural avenues at this time and I am awaiting to try a medical cannabis treatment very shorthly. the clinic is preparing my oil right now and it will be CBD only, which mean no psychic (buzz) side effects.
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
12-09-2015, 10:42 PM   #3
my little penguin
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Ds takes mtx with humira for arthritis
Realize there are two types of arthritis with crohns
Some flare with crohns
Some without
And sometimes both flare within the same week but not same time

Mtx is for small joints
Biologics for the spine and big joints
Tagging maya142
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DS - -Crohn's -Stelara -mtx-IVIG
12-09-2015, 11:21 PM   #4
Maya142
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Did the other meds work for your arthritis - Humira and Remicade?

My daughters both have Ankylosing Spondylitis. My younger daughter also has Crohn's. In her case, the arthritis and IBD flare at different times. So fixing the IBD doesn't fix the arthritis.

We've found for both my girls that they need a biologic+ immunomodulator+NSAID to keep their AS under control.

The older one is on Humira, MTX and an NSAID. The younger one is Simponi, Arava and an NSAID (she is allowed to be on an NSAID by her GI because her arthritis is so much worse than the Crohn's).

Steroids do help both of them but we try to minimize them. We've done all kinds of steroids - oral, injections into the joint, IV, intramuscular injections. All work for them. If you have just one or two joints that are bothering you, then joint injections may be an option.

I don't know which drugs are allowed when you are breastfeeding (if you are breastfeeding, I mean), but I'd urge you to figure out what your options are. My girls have been on many combinations and only certain ones worked. For them, MTX works well with anti-TNFs while Sulfasalazine does nothing. Arava is another immunomodulator used for RA mostly, but because my younger one doesn't tolerate MTX, we tried it and it worked for her.

It also takes a long time for anti-TNFs to help their arthritis - Humira took 6 months for my daughter. How long have you been on Cimzia?

I'd definitely try and get in touch with your rheumatologist to talk about your options.

CCFA has a great summary about arthritis:
http://www.ccfa.org/resources/arthritis.html
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
12-18-2015, 02:44 PM   #5
KayleighMeek
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Thank you for all of the replies I have been really struggling lately and haven't had energy to do anything.
My arthritis flares without my crohns being active but can also be active at the same time as well. I feel like my crohns is getting worse as I'm having more bathroom trips and struggling with some food but still nothing as bad as what I have dealt with in the past.
I have seen my rheumatologist and GI this week and they have started me back on mtx and did my first injection today so hoping that this will do the trick in combo with the cimzia.
I have been taking ibuprofen but it has made little difference to the pain and has been making me feel sick so it doesn't seem worth it. I would try steroid injection again but when I have had them in the past within 1/2 weeks the pain is back the same as it was before.
When I took humira and remicade they both worked at first and then don't seem to work as well then I developed antibodies to both humira I developed vasculitis and remicade had an anaphylactic reaction. I think I started the cimzia again in July/August as I was hospitalised at the end of August and I had been on it a little while so 4 months. I was on it up until 28 weeks into my pregnancy and then stopped and then I would still have bad days with my joints but things just seem to be getting worse not better. I'm hoping with the mtx that things will get better, I don't know what the next step would be I think there is a new drug that has been licensed here that is good for crohns but not for arthritis.
Thank you all again for the support it really helps to speak to other I'm just so sorry that it's through either you or your children being so poorly.
06-12-2016, 02:35 PM   #6
John 470
 
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I've been suffering from enteropathic arthritis from Crohn's for about a year now. It took about 6 months to accurately diagnose. I was started on Humira about 3 months ago and have started to see some improvement; however, I still suffer from a great deal of discomfort in my feet, ankles, and knees (especially when walking up or down steps or inclines). My GI and Rheumy believed that I would have seen more improvement than what I have seen thus far, but have also stated that it can take up to six months for some patents to realize the full benefit from the biologic. After two months, my Rheumy offered to put me on MTX as well, but at the time we decided to wait a bit longer. Now that another month has gone by and because I'm still limited in my mobility, we decided it might be best to go forward with adding 15mg of injectable MTX once a week.

My question is open to all but I do feel like Maya142 and My Little Pinguin have similar experiences. How long after starting a biologic was it decided to start an immunomodulator? Should I wait another 3 months to see how much the Humira fully benefits me before potentially starting MTX? I'm missing a lot of work related meetings and events because of my Crohn's and arthritis. Appreciate any feedback.
06-12-2016, 04:15 PM   #7
my little penguin
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DS was on humira for 5 months before it started to work for his frogs
He was not dx with JSPA at the time
We added Mtx at dx of JSPA and with 4-6 weeks I had a new kid
He did try paraffin wax and swimming and pt and mobic ( caused bleeding)
First but that was prior to official dx
He still does all the other stuff but Mtx plus humira works well
He also uses volteran gel ( doesn't hurt his gut )
06-12-2016, 05:18 PM   #8
Maya142
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My kids were both on Humira for 3-4 months before we decided to add to MTX. Humira wasn't working well enough for both them -- their joints were still really bothering them, so we added MTX. Took 6 weeks for the older one and several months for the younger, but then they both felt great!!

Since then, they have both stayed on an immunomodulator with a biologic. Older one is still on MTX, the younger one is on Imuran.

Orthotics for your feet - a podiatrist can make custom ones and they REALLY help. My younger daughter loved hers so much that both my husband and older daughter got them too.

Even just soaking your feet in a bucket of hot water at night might give you some relief (of course, not something you can do all the time, but might help the pain a little).

My girls both need NSAIDs in addition to their other meds. My younger daughter is allowed to be on an NSAID because her Crohn's is a lot milder than her AS. If you can't try an NSAID, then Voltaren gel is a great alternative.

Good luck!
06-12-2016, 08:06 PM   #9
John 470
 
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Thanks so much for the feedback. Definitely going to go forward with starting MTX.

Although my Crohn's is milder than my arthritis, unfortunately NSAIDs are not an option for me since they upset my gut. I'll talk to my Rheumy about the Voltaren Gel after seeing what MTX does for me. Also going to see about getting custom orthotics. I do have generic ones but I'll take all the help I can get.

Thanks again!
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