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afidz

afidz

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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
 
Tagging Maya142 since she may have some different AS drug options and ideas for you

Take care of yourself
 
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!
 
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.
 
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!
 
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.
 
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
 
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!!
 
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!
 
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


Lauren
 
Crohn's and AS are separate from each other, at least in my case. They make me miserable independently
 
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.
 
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
 
Im so sorry that you are still strugling , but im happy that you are getting somewhere. Best wishes and support
 
afidz said:
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
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Great to hear from you. I hope you are better soon.
 
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!
 
afidz said:
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
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Congratulations on the impending marriage. Regarding Indian food, I agree - they are spicy. I find it difficult, and I am an Indian :)
 
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
 
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
 
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!
 
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
 
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.
 
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).
 
afidz asked me to post some photos of her. One is on her wedding day (yay! Congrats!!!) and the other shows her during her wedding dress fitting but she wanted to show you all this one because it shows how much she's leaning over now from the AS I believe (I'm sorry afidz :( ).
 

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Congratulations, Afidz!!! Beautiful bride and knockout groom! So happy for you both!!!!!!!!!!!
 
Thank you :)
I swear once I start feeling better I will post more. I'm just not in a place to help other people at the moment, mentally or physically.
I've been in terrible terrible pain. To the point that I wake up screaming, my face soaked with tears. With the pain I'm describing my rheumy is worried about osteonecrosis in my hip. The end result to that is surgery to stop it or a hip replacement. I'm getting an MRI on Tuesday. I explained the same pain to my pain management doctor, he doesn't think it's osteonecrosi, the pain isn't in the right place for that. He thinks it's nerve damage (I'll take that one) but he too wants to wait for the MRI. He discovered that I have lost some feeling in my leg (makes the nerve damage make sense). For now I've been loaded up with pain killers, muscle relaxers and gabapentin until we figure out what's causing the pain.
My stomach gets upset off and on, nothing to really worry about. It's just the added stress I'm going through at the moment.
My husband made me cry the other day. We were on vacation, I was taking pred just so I could have a good time with him. We were sitting outside talking about what's next (I'm back to square one in finding a med) and he said that he promised he week always be there for me as long as I promised not to give up. I don't think he understands how much that meant to me.

Anyways, I got my wedding pictures back from the photographer, if y'all want to see a few of my favorites, let me know. I don't want to force them down anyone's throat lol
 
afidz said:
Thank you :)
I swear once I start feeling better I will post more. I'm just not in a place to help other people at the moment, mentally or physically.
I've been in terrible terrible pain. To the point that I wake up screaming, my face soaked with tears. With the pain I'm describing my rheumy is worried about osteonecrosis in my hip. The end result to that is surgery to stop it or a hip replacement. I'm getting an MRI on Tuesday. I explained the same pain to my pain management doctor, he doesn't think it's osteonecrosi, the pain isn't in the right place for that. He thinks it's nerve damage (I'll take that one) but he too wants to wait for the MRI. He discovered that I have lost some feeling in my leg (makes the nerve damage make sense). For now I've been loaded up with pain killers, muscle relaxers and gabapentin until we figure out what's causing the pain.
My stomach gets upset off and on, nothing to really worry about. It's just the added stress I'm going through at the moment.
My husband made me cry the other day. We were on vacation, I was taking pred just so I could have a good time with him. We were sitting outside talking about what's next (I'm back to square one in finding a med) and he said that he promised he week always be there for me as long as I promised not to give up. I don't think he understands how much that meant to me.

Anyways, I got my wedding pictures back from the photographer, if y'all want to see a few of my favorites, let me know. I don't want to force them down anyone's throat lol
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I hope you feel better real soon.
 
We just went through the whole osteonecrosis scare too. Fortunately, my daughter's MRI was clear.

I know it's not much of a consolation, but my husband has had 5 hip replacements for his AS (he started young!) and they REALLY helped with the pain. Once he recovered from the surgery, he did great!

Sending hugs - hang in there. Has there been any talk of trying a new biologic?
 
No, Rheumy wants to see how the MRI comes back and she is looking into other med options. I go back on Wednesday. I've been limiting my physical activity quite a bit, just trying to stay off if my left leg, the pain has significantly decreased. My husband is making me go for a walk in the morning, so we'll see how that goes.
I'm in the process of trying to lose weight so I can have the surgery I need on top of all of this. It's tough to not eat out of boredom or depression.
 
Have you tried walking with crutches? When my daughter's hip was acting up, that's what we did. For her it was only one hip though. We're not quite sure what is causing her pain currently - cartilage damage or inflammation or something else.

Once the MRI came back clear for osteonecrosis, she was given a steroid shot in the hip joint. It worked wonders!! It's been about 5 weeks and it's just wearing off, but it gave her the relief she really needed. It was not painful and is done under ultrasound guidance.

Walking in a pool may also help - that way you can exercise without hurting your hips.

My daughter is doing well on Cosentyx -- it's an IL 17 inhibitor and was just approved for AS in January. The only issue is that it doesn't treat Crohn's, so she is currently on Imuran for her Crohn's.
 
Update time
I still don't have an official diagnosis of AS. The pain has gotten horrid. I wake up screaming in the middle of the night. I feel like I'm being ripped apart most of the time. I started going to pain management a few weeks ago, I got an epidural pain block in my sciatic nerve. It's helped that pain, but I still have other pain. Still waiting for insurance to approve orrencia via iv. I don't want to but it's what my rheumy wants.
The biggest news though, after 5 years I finally won social security disability! It only happened yesterday, so it will be a while. But it's nice to know I will have ongoing insurance and some type of income regardless.
I've lost about 40 lbs. 40 more to go beforei can go back to Cleveland for my next consult.
That's pretty much it. I'm in incredible amounts of pain all the time, so I'm still not on here very much. Sorry
 
Afidz why don't you have a diagnosis? Have you had imaging - MRI or x-rays? You may have SpA and not AS, but that's still a disease that requires treatment! To have AS you need radiographic sacroiliitis -- sacroiliitis visible on x-rays.

It takes time for damage to develop -- it can be 8 to 10 years after the onset of symptoms. If your x-rays are negative, an MRI would be typically used to diagnose SpA.

There is very little evidence that Orencia works for AS. Would your rheumatologist consider Stelara or Cosentyx?

What else has your pain management doc done? It sounds like the pain has taken on a life of its own. Have you tried something like Lyrica or Cymbalta? I know you've tried Gabapentin but it sounds like it is not doing much. They might help, especially if you have nerve pain and it sounds like you definitely have some nerve pain.

Steroid injections into the joints that are affected can be very helpful for pain relief. We have done SI joints, hips, jaw, knee, heel and ankle shots between my girls and husband.

My daughter had had 3 hip shots -- two in the hip joint and one in the psoas tendon. She just had one in the hip joint yesterday. As long as osteonecrosis has been ruled out, it may really help.

You might also consider a pain rehab program. They focus on getting chronic pain under control through PT, OT, CBT among other things. They can be extremely helpful and aim to get you functional again. My daughter did a pediatric program and it made a huge difference.

Cleveland Clinic has a great pain rehab program for adults (she did the one for kids there).
 
afidz said:
Update time
I still don't have an official diagnosis of AS. The pain has gotten horrid. I wake up screaming in the middle of the night. I feel like I'm being ripped apart most of the time. I started going to pain management a few weeks ago, I got an epidural pain block in my sciatic nerve. It's helped that pain, but I still have other pain. Still waiting for insurance to approve orrencia via iv. I don't want to but it's what my rheumy wants.
The biggest news though, after 5 years I finally won social security disability! It only happened yesterday, so it will be a while. But it's nice to know I will have ongoing insurance and some type of income regardless.
I've lost about 40 lbs. 40 more to go beforei can go back to Cleveland for my next consult.
That's pretty much it. I'm in incredible amounts of pain all the time, so I'm still not on here very much. Sorry
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Sorry for all the pain
 
Maya12 I'm fed up with my rheumy. I told them I didn't feel like Orencia was really helping. It helped enough for me to function. I would feel ok for a day. She said that we should try the IV version first because she told my insurance that I have RA! so if we switched to consentyx, she would have to explain herself.
Nothing is showing up in imaging. The last MRI was blurry because I was in an incredible amount of pain and was moving uncontrollably. My rheumy hadn't done anything to diagnose me, for 2 years they have just been giving me meds without even trying to find the source. My last set of blood work showed my CRP was 7x higher than it normally is, but she insists it's just joint inflammation from having Crohn's. How can she even say that if she hasn't done any studies her self? Pain management is the one that has ordered all of the recent MRIs
My pain is indescribable. I'd rather be in a Crohn's flare, to be honest. I just want someone to figure out what's wrong and fix it. I can't live like this forever. I'm barely clinging to my sanity
 
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Afidz, I'm so sorry.

Is there any way you could get to a new rheumatologist? Yours sounds awful. It's much more likely that you have AS/SpA with the Crohn's -- they are strongly associated and share many genes.

Clearly, there is inflammation since your CRP is so high. The fact is, it doesn't matter if it's called Crohn's related SpA or AS or axial SpA, you need some treatment! But calling it RA is all wrong because the treatments are now very different.

RA is moving toward being treated with meds like Orencia and IL 6 inhibitors. AS is moving towards being treated with IL -23 (Stelara + other meds that are still in trials) and IL 17 inhibitors (Cosentyx is approved, Taltz is in trials). That's why it's very important to figure out which you have!

So here's what I'd say. Find a new rheumatologist. I know it's REALLY really hard to switch when you are flaring, but it looks like this one is not going to help you.

Have you had any MRIs that have shown anything? I know how hard it is to lie still - my kiddo had the same problem :(. We had the MRI tech give her lots of breaks. Yes, it takes longer that way, but it's better than getting a bad picture.

They don't like letting you taking breaks because they have to re-position you, but we insist. We also give her meds before - something for pain and anxiety so that she does not panic and is able to lie still despite being in pain.

Remind me which joints hurt besides your hips? I think the first thing would be to do hip x-rays and pelvic x-rays. If you have evidence of sacroiliitis on x-rays, then it's easy to come to an AS dx and you should be able to get different meds. Otherwise, unfortunately, you would need a pelvic MRI.

Being tested for HLA B27 is also a good idea. You can have SpA or even AS and be HLA B27-, but if you are positive, it is one more piece of the puzzle.

Hang in there. I think you absolutely need a good rheumatologist. We see one in Houston, but I'm guessing that is too far for you? If not, PM me.
 
I do apologize for the typos. I'm on my phone. I try to catch them all but sometimes they get by.
I am HLA B27 positive. My pain is in my hips, lumbar (specifically this week, my tailbone) my should blades get sore, and I've lost quite a bit of range of motion in my neck. The MRI really only showed scoliosis, which I was already aware of, but I think it has gotten worse. It showed that I'm not in danger of my spinal cord collapsing and causing paralysis, so that's good. There is some fluid in my right hip, but my left it's mostly the problem.
The problem with my rheumy is that I'm only seeing her p.a., and then she reviews the file notes later. She is a good doctor. I talked to my GI about it, he said that's who he would refer me to. So I think I'm going to give them another chance. I'm going to demand an appointment with her, insist that she work harder on helping me or I find someone. I'm not just a whiny pain the butt patient. I go days without getting out if bed because I'm either exhausted from being ripped awake by the most horrible pain I can even imagine or I'm in too much pain to walk and be productive. Thank god I just won disability. I can't even fathom looking for a job and actually working everyday.
 
Oh, I'm taking gabapentin for the nerve damage. It definitely helps. I'm also taking norco and flexiril.
I took prednisone tonight because I couldn't handle it anymore. I needed the inflammation down. I need a break from it.
 
Afidz, you sound like an absolutely typical AS patient. I have three in the family -- both my girls and my husband and they have very similar symptoms.

The good thing is that you can actually get the range of motion in your neck back with PT, a lot of the time. My younger daughter has been doing PT for months and has regained significant ROM in her right hip. She has also done PT for her neck, and while she has lost some range of motion, it's better than it was.

I'm sure you don't feel up to PT right now, but some time in the future, when the inflammation is under better control, it's a good option. It even helps with scoliosis!

If you haven't seen an orthopedist about the scoliosis, I'd do that. Or at least ask your rheumy about it. It can also cause back pain and it may be contributing to your pain and probably your posture.

I think you need to make it really clear that Orencia is not working and you do not want to try Orencia IV. Ask them why they think you have RA when you are HLA B27+ and have typical hip, lumbar and cervical spine pain.

It is actually good that your MRI did not show fusion yet -- that means it's inflammation right now and hopefully, with the right med, you will get that under control.

My younger daughter has been through absolutely everything -- Humira (twice), Remicade (3 times), Enbrel, Simponi, Methotrexate, Sulfasalazine, Plaquenil, Imuran and Arava in various combinations.

Cosentyx has really changed her life. We were worried about it because it doesn't treat Crohn's and I will admit that her Crohn's flared within months of getting off an anti-TNF, but her AS is SO much better. SO so much better. And her Crohn's is still mild and it was a risk we were willing to take.

She used to have inflammation in her heels, knees, hips, SI joints, lumbar spine, ribs, shoulders, elbows, hands, neck and jaw. Now it's mostly just her SI joints and hips that bother her (and her heels on and off). It is an incredible difference -- she was basically stuck in bed and on Prednisone and pain meds constantly.

Now she is off Prednisone completely (!!) and is weaning off her pain meds slowly (and has been able to reduce the dose significantly).

The other option we considered was Stelara because that treats both IBD and AS.

Can you get someone (like your husband) to help you advocate for yourself? It seems like you really need to see the rheumy and not just the PA.

Hang in there. There is hope, I promise.
 
Sounds like you are covered from a pain med perspective (short of going on a stronger pain med). My girls both use Flexeril when necessary too.

We have done long Prednisone tapers when my daughter's AS was completely out of control. This winter we started at 40 mg and slowly weaned down. It really helped. We have even done IV Solumedrol once -- 5 days in the hospital. That really got the pain under control - it was like magic.

I think you definitely need a different biologic to get the pain under control. Are you on anything else -- like Methotrexate or Sulfasalazine or Arava? Sounds like you need to treat it really aggressively.
 
No, my GI wants me on Imuran, but I'm not sure if that would help AS. Something needs to be done, my symptoms are running rampent right now
 
My kiddo is on Imuran too. I don't think it helps her AS at all, but it is the only thing keeping her Crohn's (sort of) under control.

Methotrexate would work for both AS and Crohn's. We would use that, except my daughter cannot tolerate it.
 
I was afraid of taking methotrexate because I read you can't be in the sun. I love swimming and being outside in the summer, but I've been too sick to actually go outside so I guess it doesn't matter anyways.I'll talk to my rheumy about it next appointment
 
Ds is on methotrexate and spends a week at the beach each year
Granted lots of sunscreen and long sleeve rash guard shirts but no sunburns
 
You can be in the sun, you just have to be careful. There is the same risk with Imuran -- In fact, the skin cancer risk is greater with imuran.
 

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