02-17-2016, 12:09 PM   #1
afidz
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Another update

As I stated in my last update, I had an allergic reaction to remicade in November, and then an adverse reaction to Cimzia in December. I had a colonoscopy in December that showed mild inflammation, shallow ulcers and quite surprisingly, no signs of disease progression. In other words, I'm still in remission. But AS has taken over my body and my life. These last 3 months of not being medicated have been very tough. I can't even explain how terrible it has been.
Worth AS and Crohn's being in the same class of diseases, they can be treated simultaneously with the same drug. Unless that is, of course, that you have had reasons to all of the drugs approved for both diseases. I had to chose. Considering Crohn's is in remission I'm choosing to treat AS for right now. When I get my health back under control, I will figure out a maintenance dig for Crohn's. It's just tough because I have had some type of reaction for every class of drug. I'm out of options.
So, I'm in week 2 of orencia. I stopped taking prednisone about 5 days ago. I'm in a lot of pain with out it but it is getting better. MM has been my friend. I've heard and read a lot about it helping people achieve remission, I'm already in remission so maybe it will help me stay there.

I want to apologize from the bottom of my heart for not being around. If you think about Maslow's hierarchy of needs, I am at the bottom right now. I love helping people and supporting everyone through their illnesses, but I can't do that until I get through what I'm dealing with.

If anyone has advice on how to get AS into remission or manage inflammation, feel free. I am very sick right now and can use all of the help I can get
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Crohn's since 2007
15 Abdominal Surgeries since 2008
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Ankilosing Spondylitis
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Humira
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Cimzia
Methotrexate
02-17-2016, 12:15 PM   #2
ronroush7
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I am sorry for all you are going through. Sending support and prayers.

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02-17-2016, 12:27 PM   #3
Christi
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Sending support and prayers. Hope someone can help you and i hope you feel better soon
02-17-2016, 12:49 PM   #4
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Tagging Maya142 since she may have some different AS drug options and ideas for you

Take care of yourself
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02-17-2016, 01:38 PM   #5
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Feel better soon sweetheart.Sending hugs to you.
02-17-2016, 03:39 PM   #6
Maya142
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Hi Afidz. I can definitely sympathize - my daughter is in the same boat. We are choosing to treat the AS too. She is going to start a VERY new drug - Cosentyx (Secukinumab). It is a biologic that targets IL 17. It was just approved on January 15th for AS. It has done really well in trials for AS BUT actually made Crohn's worse in trials. Since M's AS is severe but her Crohn's is mild, we are going to try it anyway. We don't really have any choice because she's in so much pain and there is inflammation in basically all her joints. She already has a fair amount of damage in her SI joints and hips. We have added Imuran in the hope that it will prevent her Crohn's from flaring.

In trials, Orencia did not do well for AS, which is why it is not approved for AS. It's worth a shot, especially since you had such bad reactions to some of the anti-TNFs but if it doesn't work, I'd check out Cosentyx. There is also Stelara which has done really well in Crohn's trials and may work for AS (not approved for AS yet but it is approved for Psoriatic arthritis which is similar).

If you want to try another anti-TNF Simponi might work. My daughter is currently on Simponi. Works well for her Crohn's and her AS does respond to it, but not enough.

Good luck!
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Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
02-17-2016, 10:55 PM   #7
afidz
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I am actually responding to the orencia, not as fast as I did the other biologics, orencia took about a day to notice a difference. I'm definitely better off than before I started it. I'm hopeful ( if I don't have hope, what else do I have? )
Is your daughter on here? Where does she have the most pain? Does she struggle to breathe at all? My ribs and lungs get inflamed the worst. Sleeping is impossible. The back pain can get really bad too. I how the new drug goes well.
02-17-2016, 11:08 PM   #8
Maya142
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My daughter is not on the forum. She is 19 now - diagnosed with juvenile spondyloarthropathy at 12 and Crohn's at 16.

Ribs are a huge problem. I don't think she has lung involvement (that we know of) but it does hurt to take a deep breath. According to her rheumatologist, she has limited chest expansion. Her thoracic spine is not yet fused (thankfully) so she should be able to get it back when the AS is under control.

Her SI joints and hips are the worst joints for her. But lots of other joints bother her - knees, heels, elbows, lumbar spine, ribs, jaw, fingers, neck etc.

Sleeping is a huge problem and she is often up till very late in pain. She sleeps with a heating pad. She also has a heated mattress pad. She also uses ice a lot. She uses a TENS unit too, which helps somewhat, mostly with her lower back.

SO glad you are responding to Orencia already! That's promising! It did very well in RA trials, just not AS but of course, everyone is different. That's wonderful!

It always takes M forever to respond - usually a couple of months. We NEVER see an improvement in a day. She has been on Remicade, Humira, Simponi and Enbrel (before being diagnosed with IBD) so far. Also Methotrexate, Arava and Imuran. Plus many NSAIDs.

She is allowed to take an NSAID now even though she has Crohn's because her AS is so bad. It took a lot of trial and error to find one that she tolerated, but now she cannot manage without it. It helps a lot with stiffness.

If you are not allowed to take an NSAID, you may be allowed to use Voltaren gel instead since less of that is absorbed systemically and so it's easier on the gut.

The only other thing that helps her a lot is steroids.

My husband also has AS and has been on just NSAIDs - never any biologics. He has had many hip replacements and a partially fused spine but is doing well now - very little pain. My older daughter has it too and is doing well on Humira, MTX and an NSAID.

Weird how everyone responds differently, huh?!

I hope Orencia gives you more relief soon!
02-17-2016, 11:18 PM   #9
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I'm sorry to hear you're still having so much pain and are still battling all of this. Very thankful to see you here though. But, would rather you take care of yourself first. I'm still here for you. Lots of hugs are being sent your way.
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02-18-2016, 01:27 AM   #10
afidz
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With Humira, Remicade and the one dose of Cimzia, I noticed improvement within a few hours. I don't think that's common. And actually in 2009 I was very very sick with a bad Crohn's flare, was hospitalized for the better part of 5 weeks. I started Humira and went into complete remission in 30 days. My doctor could not believe it. I've been in remission for the most part ever since. My body just responds very well to biologics.
Although heat feels nice, I would imagine it would make the inflammation worse. Does it not? Jennifer suggested the TENS unit to me, need to look into it. Going to start going to pain management soon
02-18-2016, 02:40 AM   #11
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That's really incredible and so lucky! I wish my daughter responded so quickly - we always have to wait months to even figure out if it's working.

I definitely recommend pain management. Both my girls see pain management doctors. My younger daughter couldn't manage without pain medication. She started with Tramadol and is now on stronger meds. We absolutely hate having her on them, but she really really needs them and would not sleep at all without them.

They have both also tried many non-narcotic pain meds. Between both my girls, they've tried cymbalta, nortriptyline, Lyrica and Gabapentin. We haven't had any luck with any of them for pain, though Cymbalta definitely helped my daughter's mood (which makes sense since it's an antidepressant).

We have been told to use heat or ice, whichever feels better. I don't think a heating pad would increase inflammation. My daughter does prefer ice when her joints are swollen and warm and clearly inflamed. But if she has muscular pain, then she likes heating pad. We usually alternate - 15 minutes of each.

The other thing that helps is exercise. Stretching, physical therapy (weekly for my daughter), swimming and biking are all great for your joints. Even if you can't swim yet (because of pain, for example) my girls find that even just being in the water helps them.

Good luck!!
02-21-2016, 10:30 PM   #12
afidz
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Well, I am really starting to feel better. I am taking advil less frequently and I haven't taken steroids in about 2 weeks. I still have a long way to go but its a step forward. My rheumy wants to redo blood work in about 3 weeks to see if anything improves. They did blood work about 2 weeks ago and with out meds, it seemed like my body was trying to work itself out. Most of my counts were working their way down (or up, depending) so we will see how I am responding after a month of this new drug.
I am getting married in 3 and a half months, I really need things to start going well again. I need to lose all of my prednisone weight to fit in my dress, can't do that until I can stay off of pred!
02-21-2016, 10:55 PM   #13
Maya142
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So glad you're doing better afidz!!!
02-21-2016, 10:57 PM   #14
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Best to you.

02-21-2016, 10:58 PM   #15
tots
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If your AS is active, is that and indicator to CD starting to wind up?

I have been on Remicade since May- its helping but, just not enough if that makes sense.
I can only say this is the disease is one crazy ride, all we can do is hang on and hope to come out on the good end- remission!!

Good luck and feel better soon


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Currently on Humira 80 painful milligrams every other week.


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02-24-2016, 09:40 AM   #16
afidz
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Crohn's and AS are separate from each other, at least in my case. They make me miserable independently
02-24-2016, 02:17 PM   #17
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Have you seen this:

http://www.kickas.org/medical/15.shtml

Not sure if it would help, but their theory is that antibodies generated against intestinal klebsiella pneumonia bacteria cross react with HLA-B27 to cause AS. A low starch diet reduces the population of these (klebsiella) bacteria and can reduce symptoms. There is also ongoing research about how this may play a role in Crohn's disease.

For my GI problems (no AS), a strict low carb/low starch diet made a big difference and was helped even more when combined with a daily dose of saccharomyces boulardii yeast (eats carbs? and has been shown to help with multiple GI problems - see wikipedia link below)

https://en.wikipedia.org/wiki/Saccharomyces_boulardii

Obviously don't quit taking your medicines, but if you haven't already tried this, you could ask your Dr about it.
04-20-2016, 05:23 AM   #18
afidz
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Hey guys

Sorry its been so long. I have been struggling with my mental and physical health so much the last 6 months. I just can't get anything under control.

I went to the Cleveland Clinic in March for my hernia. The surgeon thinks he can fix it, but in order for that to happen, I need to lose a lot of weight. I have already lost about 15, but I still have about 65 to go before they will schedule it.

I am still taking Orencia. It does help, I am off of the steroids. But it simply doesn't work as well as Remicade or Humira. I am in an incredible amount of pain at night when my body starts to relax and my mornings are pretty rough. I have missed 12 days of work and I had to withdraw from school, at least until the fall.

As far as Crohn's goes, as long as I stay away from bacon...and apparently Indian food (there is a first and last time for everything) I am ok. I don't have much of an appetite these days, but I think that its still in remission.

Basically, I am always exhausted. AS is kicking my butt. It hurts my ribs and chest more than anything but my upper back hurts a lot too.

In other news, I am getting married in 7 weeks and 2 days. I can't believe how close its coming up. We are hoping that I will be surgery ready with in a year and then we will start pursuing surrogacy/family planning shortly after. If I could just get the arthritis under control, my life would be pretty peachy!

Hows everyone else doing? I have read a few posts here and there but I haven't really had time to catch up
04-20-2016, 05:48 AM   #19
Christi
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Im so sorry that you are still strugling , but im happy that you are getting somewhere. Best wishes and support
04-20-2016, 09:15 AM   #20
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Hey guys

Sorry its been so long. I have been struggling with my mental and physical health so much the last 6 months. I just can't get anything under control.

I went to the Cleveland Clinic in March for my hernia. The surgeon thinks he can fix it, but in order for that to happen, I need to lose a lot of weight. I have already lost about 15, but I still have about 65 to go before they will schedule it.

I am still taking Orencia. It does help, I am off of the steroids. But it simply doesn't work as well as Remicade or Humira. I am in an incredible amount of pain at night when my body starts to relax and my mornings are pretty rough. I have missed 12 days of work and I had to withdraw from school, at least until the fall.

As far as Crohn's goes, as long as I stay away from bacon...and apparently Indian food (there is a first and last time for everything) I am ok. I don't have much of an appetite these days, but I think that its still in remission.

Basically, I am always exhausted. AS is kicking my butt. It hurts my ribs and chest more than anything but my upper back hurts a lot too.

In other news, I am getting married in 7 weeks and 2 days. I can't believe how close its coming up. We are hoping that I will be surgery ready with in a year and then we will start pursuing surrogacy/family planning shortly after. If I could just get the arthritis under control, my life would be pretty peachy!

Hows everyone else doing? I have read a few posts here and there but I haven't really had time to catch up
Great to hear from you. I hope you are better soon.

04-20-2016, 04:39 PM   #21
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I'm glad some things are working, but sad to hear you're still suffering too. Thank you for the update, been wondering about you. Weddings are very exciting but are pretty stressful too. I hope the planning and everything for it goes smoothly and less stressful for you so you can enjoy it. Lots of hugs!
04-20-2016, 04:54 PM   #22
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Hey guys

Sorry its been so long. I have been struggling with my mental and physical health so much the last 6 months. I just can't get anything under control.

I went to the Cleveland Clinic in March for my hernia. The surgeon thinks he can fix it, but in order for that to happen, I need to lose a lot of weight. I have already lost about 15, but I still have about 65 to go before they will schedule it.

I am still taking Orencia. It does help, I am off of the steroids. But it simply doesn't work as well as Remicade or Humira. I am in an incredible amount of pain at night when my body starts to relax and my mornings are pretty rough. I have missed 12 days of work and I had to withdraw from school, at least until the fall.

As far as Crohn's goes, as long as I stay away from bacon...and apparently Indian food (there is a first and last time for everything) I am ok. I don't have much of an appetite these days, but I think that its still in remission.

Basically, I am always exhausted. AS is kicking my butt. It hurts my ribs and chest more than anything but my upper back hurts a lot too.

In other news, I am getting married in 7 weeks and 2 days. I can't believe how close its coming up. We are hoping that I will be surgery ready with in a year and then we will start pursuing surrogacy/family planning shortly after. If I could just get the arthritis under control, my life would be pretty peachy!

Hows everyone else doing? I have read a few posts here and there but I haven't really had time to catch up
Congratulations on the impending marriage. Regarding Indian food, I agree - they are spicy. I find it difficult, and I am an Indian
07-03-2016, 06:42 PM   #23
afidz
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I am officially married to my best friend. If I ever remember, when I get back on my computer I will upload a picture. Our wedding was pretty awesome. We hired a rock band and had a concert instead of a dj and dancing. I couldn't have had a better night if I tried.

My health sucks though. I'm still in remission from Crohn's, but the AS is kicking my butt these days. I'm seeing a pain management doctor and an ortho this week. Hoping to find some answers soon. I'm probably going to lose my job this week. Truth be told
07-03-2016, 06:46 PM   #24
my little penguin
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Congrats on your wedding
Sorry about the AS side of things
Going to tag Maya142
Her Dd is trying a new AS drug that is not an anti tnf
Gentle hugs your way
07-03-2016, 06:47 PM   #25
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Congratulations on your wedding. I am sorry about the AS.
07-03-2016, 07:01 PM   #26
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Congratulations on your wedding!!

My daughter is on Cosentyx. She's been on nearly every anti-TNF - Humira, Remicade, Simponi and Enbrel - and they all helped, but not enough. Her AS kept progressing and she was in horrible pain, up all night, swollen joints, couldn't walk much, MRIs looked worse etc. So we finally decided to try something else. Cosentyx is an IL 17 inhibitor and it's actually approved for AS now, so should be fairly easy to get. However, it does NOT work for Crohn's and in fact, may even make Crohn's worse (the jury is still out - it might just not treat it or it may actually even aggravate it).

It was a very hard decision for us, since her Crohn's had responded so well to anti-TNFs. Her scopes looked great and her FC was completely normal. But in the end, her AS was just so debilitating that we had to try something else.

Cosentyx has REALLY helped her joints. She has actually even regained some flexibility in her spine! She is in less pain and has decreased her pain meds drastically and gotten off Prednisone. That is not to say things are perfect -- far from it, but it's a huge improvement.

She is on Imuran for her Crohn's now. Her Crohn's did flare after several months on Cosentyx and we're still trying to figure out how to control it. She's on Entocort too and that has helped.

The other thing that has helped is steroid injections. She's had them in her SI joints twice (under sedation) and in her hip and heel recently. Her SI joint injections REALLY helped and lasted for 5 months, which is pretty good! Her pain management doctor was the one who did those.

For pain, she does take pain meds. We tried everything to avoid opioids since she is so young, but we didn't really have a choice. She is slowly getting off them now!! We also tried various anti-depressants and anti-convulsants which are supposed to help with pain (Lyrica, Gabapentin, Nortriptyline) but unfortunately, they didn't really work for her.

She also swims and bikes which help. And she does PT twice a week, which helps with flexibility and keeping her muscles strong so that they support her joints.

The other option would be Stelara. That should work for both your AS and Crohn's. However, it isn't yet approved for AS or Crohn's so it is much more difficult to get insurance to approve it.

Methotrexate or Sulfasalazine might help too, especially if you have a lot of peripheral joints involved (joints other than the spine).

Good luck!
07-03-2016, 09:05 PM   #27
afidz
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Wow thanks for the input!
I'm on Orencia now, it helps enough that I'm not on steroids but I'm worried permanent deformation had begun. I noticed a few weeks before my wedding that I'm leaning to one side. It's uncomfortable when I try to stand straight. I'm in so much pain, I go to work and come home and go to bed where I cry myself to sleep. And then when I wake up from a fitful night sleep, I start crying again. It's too much to handle. Really hoping to get some answers this week
07-03-2016, 09:12 PM   #28
afidz
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I'm going to look into that drug though
07-03-2016, 09:12 PM   #29
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There have been trials with Orencia in AS and actually, it didn't do well at all. We also considered trying it at one point (no harm in trying if you've failed everything else!) but now there are some more options that have more evidence supporting them.

It does sound like you need pain management SOON! I hope the pain management doctor is able to give you something to help until you can find a biologic that will help your AS.

For what it's worth, my husband has a partially fused spine, fully fused SI joints, a fused ankle and has five hip replacements (he has BAD AS) yet has lived a very full and normal life. Don't lose hope.

It also sounds like you could really benefit from physical therapy. If there is inflammation in your joints, often your muscles will spasm which can be VERY painful and uncomfortable. If you feel like you're leaning to one side, that's probably what's happening. A muscle relaxant may help with that.

Contractures (shortening of the muscles) can also occur and you want to fix those before they cause real problems.

Remember that in AS, damage tends to occur quite slowly - think years, not months. So try not to worry too much. But it is very important to get the inflammation under control, because of course, over time it will lead to damage.

All the rheumatologists we have ever seen have emphasized that in AS, you have to "move it or lose it!" -- exercise is VERY important. When you're flaring, very gentle exercise is best - even just being in the water might help, if you're in too much pain to swim.
07-03-2016, 09:18 PM   #30
Maya142
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Another option might be Arava. It is an immunomodulator that is mostly used for RA. My daughter was on it with Humira/Simponi. It really helped with her peripheral joint pain - especially her knees which cause a lot of pain!

The one thing about it is that if you are planning to have a baby any time soon, you can't be on it. In fact, you have to take a different drug to "wash it out" if you plan to conceive after getting off it. It has a long half life and takes a while to leave your body.

My daughter had no issues with it except some hair loss. Just wanted to mention it in case MTX and Sulfasalazine are not options.

We have found that for both my daughters, they need biologics + immunomodulators to control their AS.

Cosentyx is an option, but in the literature, it does say it is contraindicated for IBD. My daughter's rheumatologist and GI only agreed to it because she had run out of options. Her GI has been monitoring her very carefully and checked her FC at the first sign of abdominal pain.

Depending on how bad your Crohn's is, your rheumatologist/GI may not want you on it, so be sure to research Stelara too (since that should work for both conditions).
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