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okay, now what do I do?
#215745 08/25/11 12:03 PM
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I know you guys can't give medical advice and all, but I am really in need of what ever advice you can give me.

I have been on STD for my Crohn's. I had a major flare that was a stricture trying to form - no scar tissue evident so we are trying to manage with meds. I had taken Remicaid years ago and it was a miracle drug for me, but it made me have sinus infections so I had to stop. We put me on Humira.

During this flare, I started having a major flare of SI joint pain that I have always called hip pain. It began waking me at wee hours of the morning and I had to get up and walk around. That is okay when you are not working. You just take a nap later.

When I started on Humira, folks it was like a miracle. I about forgot about the pain. My Rheumy appt is not until December, but I wasn't really worried.

Yesterday was one week and one day out from my last Humira shot. It was also my first day back to work. All was pretty fine at first, but then I leaned over to pick up something and the burning started. I had to drive thirty miles to the office for the morning (I work from a home office) and by the time I got there, my back felt like glass. A coworker hugged me really tight and I felt like crying.

Last night, 2 am, awake from the pain in my hips (SI! I gotta remember that! It really is the SI but I didn't know it and got in the habit of saying hips). At my job, I spend some time at the computer which really hurts my upper back. I also drive to client homes, go in and visit and twice a month we have socializations where we prepare a dinner and activities for the families. Guess what we have tonight.

Yesterday I could barely get in and out of the car. I can type sitting in my recliner, but typing this morning is killing me. My personal computer is a tower at a desk. My work computer is a laptop, but it is only for work (and they check). We now take the computers in to the client homes to do the reports during the visits, rather than typing them at home. It will be a great time saver, but I don't know how I can position the darn thing so I won't be in a lot of pain.

Folks, I am worried here! December is a long time. My GI does not want to treat this. When I mentioned it to my GP, he said it was impossible for me to have this. Should I go back to him again and see if he will at least help manage my pain? I am not sure I can do this...

Next week I do my one shot Humira. If two shots aren't holding me, will one?? Or will the control get better as I stay on it? I am not diagnosed - but when I got such releaf from Humira, I was pretty sure I am dealing with some inflammatory response.

I know I am just panicking, but I will be working until about 8:00 pm (or later) tonight and on my feet, putting up and taking down tables and chairs, getting on the floor with kids, etc. I know nothing will break by moving, but it sure feels like it! LOL!! On good days I am exhausted and hurting from this and I always blamed it on my Fibromyalgia.

Does anyone put pain meds by the bedside and take them when they wake up in the middle of the night???

Thanks for your support.


DX with Crohn's colitis 1992, hypothyroid probable autoimmune 1999, Fibromyalgia 2003, DM II 2005, and Spondylitis 12/11 Started Humira 08/2011
Re: okay, now what do I do?
sunflower #215746 08/25/11 12:09 PM
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OK, lots of stuff there! I'm sorry you are struggling so much.

What is STD? Steroids? What is your GI's long term plan for your IBD?

Working at a computer can really exacerbate my upper back pain too. It's important to have your laptop and chair ergonomically positioned to discourage slouching etc.

If Humira gives you relief but wears off after a week, a common response is for your doc to have you do it weekly.

I can see why a GI would not want to treat this - that's a good call on his part! Your GP should have a REALLY good explanation why it is "impossible" for you to have this - if not, fire him!

You don't need pain management - well, you might, but first and foremost you obviously need inflammation management. This sounds urgent to me - a lot of pain really affecting your ability to function. Call the rheumy and say you need to be seen ASAP. If they can't fit you in until December, find a new rheumy.

So sorry you are suffering!


Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates
Re: okay, now what do I do?
JenInCincy #215750 08/25/11 12:19 PM
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STD - Short Term Disability from my job.

I don't know any plan other than to continue on Humira and taper off the steroid enemas when I can tolerate that. I still have too much inflammation to do that. We are avoiding oral prednisone because I have too many side effects from it.

I forgot to mention that I can't get in to see the rhemy early. I talked to her office, and she is off all the month of September which is really messing with their schedule. She travels to offices area wide and if you go to a different office, that is where you always have to go. The office I chose is the closest location to me.

Perhaps the GI office can recommend a different doctor. I chose her to save myself some time and miles. No more sick time or vacation time for me this year, and the 1 and a half hour drive to an appointment and 1 and a half back - not counting the wait - just seemed too much for me. It is so hard to take half a day or more off just for a doctor appointment, but there are none in my immediate area.

Thanks for the quick response!!! I didn't expect anyone to be up at this hour.

Doc said that it is impossible for me to have AS because my flares of pain did not correspond to my IBD flares. Personally, I don't see that this is necessary, since they are two seperate diseases but in his opinion one could not flare without the other. Also, we don't always know when my gut flares because my Sed Rate rarely relfects my inflammation any more. Guess maybe he will consider thinking a different way now since they did flare at the same time.


DX with Crohn's colitis 1992, hypothyroid probable autoimmune 1999, Fibromyalgia 2003, DM II 2005, and Spondylitis 12/11 Started Humira 08/2011
Re: okay, now what do I do?
sunflower #215752 08/25/11 12:28 PM
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Has your doctor tried Entocort? It's an oral steroid but it's enterically coated to release in a specific pH - would probably be more pleasant than enemas smile

http://www.drugs.com/cdi/entocort-ec-sustained-release-capsules.html

Your doc obviously doesn't understand IBD or spondylitis. There are certainly people with IBD who have a form of spondy that flares with IBD flares. But you can have both, independently.

My daughter's Crohn's is the same as yours - her ESR is elevated but "low grade" elevation and pretty consistent. Her doc started testing her fecal calprotectin to check inflammation once we figured out she had HUGE inflammation that did not correlate with symptoms.

I'm really sorry you're stuck re: getting to a rheumatologist. I understand your limits with work etc. but it does sound like to need to see a rheumy to get the help you need.

As for my quick response, I was here to post a panicky/urgent concern myself! smile Glad I can be here for you, if only so you don't feel alone, or crazy laugh


Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates
Re: okay, now what do I do?
JenInCincy #215773 08/25/11 04:48 PM
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GP is not a help. Will post more later. I accidentally posted my reply 2 times. Silly me!

Last edited by sunflower; 08/25/11 04:51 PM. Reason: accidentally posted twice

DX with Crohn's colitis 1992, hypothyroid probable autoimmune 1999, Fibromyalgia 2003, DM II 2005, and Spondylitis 12/11 Started Humira 08/2011
Re: okay, now what do I do?
sunflower #215775 08/25/11 04:58 PM
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Sunflower, you said that you bent over to pick something up and that started the pain. That could actually be a disc problem. Pretty classic to bend over to pick something up and set off bad pain. I would suggest maybe having an ortho look at you to see if that might be what the problem is. Just because you have spondy doesn't mean that you can't have other problems, too.

Also, I am not an expert on this, but if it is your SI joint, why can't you go to a pain doc? Many people here have their SI joints injected and ablated. I am told that the rheumy is a good one to give a pain doc referral. Hopefully others that know more about this than I do will chime in with their opinions.

Either way, I think you should see relief. You can't go on like this.

Last edited by poodlegirl; 08/25/11 05:03 PM. Reason: clarification

Brenda

undifferentiated spondyloarthropy, HLA-B27+, iritis, Vit D3: 6000 IU/day, trochanter bursitis, Joint Hypermobility Syndrome, migraines, SI joint dysfunction/hypermobility, DDD L4/L5 and L3/L4, straightening of cervical spine, impaired glucose tolerance, sleep apnea.
Re: okay, now what do I do?
sunflower #215778 08/25/11 05:22 PM
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You need to find another Rheumy ASAP. Your's is nuts.

"Doc said that it is impossible for me to have AS because my flares of pain did not correspond to my IBD flares. Personally, I don't see that this is necessary, since they are two seperate diseases but in his opinion one could not flare without the other. Also, we don't always know when my gut flares because my Sed Rate rarely relfects my inflammation any more. Guess maybe he will consider thinking a different way now since they did flare at the same time."

I have both UC and AS. My UC is under control and I rarely flare, but my AS does flare without any connection to my UC.

To get you through today, try to use ice packs whenever you can. It will help numb the pain and give you some relief for a while.

How long have you been taking Humira, has it been working for the full two weeks in the past? If you need to change the dose to one a week, can you call your Rheumy to get her to fax the script to your pharmacy and insurance co without you seeing her? If not, could you get your GI to do it, Humira is good for IBD and he can prescribe it and get OK from the insurance co. also.

To answer your question, yes, I keep my pain pills and a glass of water on my bedside table because I have to take a Norco at 2AM or I will wake up about 3-4 in agony. I find it helps to set my alarm clock. It is better to take your pain meds on a schedule then to "chase" your pain and try to catch up with the pain. Pain meds work better that way. Otherwise, I will be pacing the floor until the pain meds kick in, even then, they don't work as well as they would have if I had taken them at the right time.

I am so sorry that you have to keep working like this.

Last edited by avonldy; 08/25/11 05:24 PM.

Donna
Suffering since a teenager.Dx with AS Dec 2009. Dx with ulcerative colitis 1998, both knees replaced 2006. GP said I had "some kind of inflammatory arthritis" 25 years ago. It has taken 50 years to get a Dx.

Mobic, Nexium, Naproxin, Lipitor, 6-MP, Nexium, Miacalcam, MSContin and 2 Norco for break through pain
Re: okay, now what do I do?
avonldy #215810 08/25/11 08:45 PM
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I tried getting my GI office to help. No dice. They said if I wanted a different rheumy, I need to call around and find one. Then they would refer me. I might tomorrow. I don't know if I have time since I went back to work.

Talked to my GP nurse and she thought that my GP would send me to a Rheumy and probably up my Humira dose to every week. She was quite concerned. He was not. He said they don't have a reason to send me to a rheumy and it would take an act of congress to get me in to see one very fast. That part is probably true. It is hard to see any specialist around here.

He gave me some pain pills. He said he would be glad to manage my pain. And he wanted to do a rheumatoid factor. I said no, because we had just done one a few months ago, so he didn't want to do anything else. He is moody sometimes. Today was not his good mood.

I have only done my first two Humira doses. The first dose was the four shots, then the two was last week. I got some relief after the first set of shots. After the second set, I noticed a remarkable difference. I could turn my head for the first time in years - and I didn't even realize I didn't turn it much! You gradually adapt to that stuff, I guess. I had gotten used to turning my torso to look when changing lanes, and stuff like that.

The pain actually started yesterday, and then woke me at two this morning. And, I probably would agree with you, poodlegirl, about the disc, but I can put my fingers right on the pain, and it is exactly where my SI joints are. I do have a bulging disc in my back, but it is too far up to cause the pain I am having. This is not the first time I have been to doctors with this pain, also the pain in my arms and neck. But, no one can seem to find it.

I am so new to the Humira, I guess maybe part of it is that I didn't know I was in so much pain until I wasn't for a while! I don't know, but this is also the worst Crohn's flare I have ever had, and the worst flare of back pain I have ever had. I panicked this morning. December seems so far away.

Tomorrow I will call to see if I can find a different rheumy. Finding a different GP is even harder (I can hear some of you thinking that! LOL) They are picky about letting you change doctors at the clinic in our town. There is only one clinic. They don't normally like you to switch doctors. I switched to this one after my other doctor moved away.

Thank you all for your support!!!! I really lost this morning and needed to hear from you. The pain is better so I am a little more calm. Just wait until tonight after I move all those tables and chairs..... I will be putting a pill and a glass of water by my bed and setting my alarm for 1:00am. Since 2:00am is when I wake up usually, maybe I will beat it and not have to wake up.

Thanks!!


DX with Crohn's colitis 1992, hypothyroid probable autoimmune 1999, Fibromyalgia 2003, DM II 2005, and Spondylitis 12/11 Started Humira 08/2011
Re: okay, now what do I do?
sunflower #215811 08/25/11 09:02 PM
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I'm glad that your GP at least gave you some pain pills. And I hope you are able to find a new rheumy, too. It is hard to handle all this and have to keep your job, too.

I'm glad you are feeling a little better, and it sounds like you have a good plan with the pain med.


Brenda

undifferentiated spondyloarthropy, HLA-B27+, iritis, Vit D3: 6000 IU/day, trochanter bursitis, Joint Hypermobility Syndrome, migraines, SI joint dysfunction/hypermobility, DDD L4/L5 and L3/L4, straightening of cervical spine, impaired glucose tolerance, sleep apnea.
Re: okay, now what do I do?
poodlegirl #215814 08/25/11 09:27 PM
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Thanks Brenda!


DX with Crohn's colitis 1992, hypothyroid probable autoimmune 1999, Fibromyalgia 2003, DM II 2005, and Spondylitis 12/11 Started Humira 08/2011
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