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Severe joint pain; stopped remicade; so sad

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Posted 1/10/2015 7:00 AM (GMT 0)
Hey T - FINALLY! They are doing right by you! Please let me know what you hear on lab work.
Same thing happened to me at one point - dr advising to get treated for anxiety.... After I got over being very frustrated by that, I did agree to Xanax & it did take some of the edge off, so I coped better.
Hang in there with those pains. So sorry you are miserable.
I'm optimistic though. The lab work could be the key to turn this around for you!
Posted 1/10/2015 5:13 PM (GMT 0)
Hey Content :)

Yeah, I'm really happy to have the test ran. I just don't understand how it could be harmful to run it, and the results COULD really tell me what is going on.

Feeling decent today thank goodness. Set an alarm for the middle of the night and took the pain meds then, so I could get moving along this morning okay.

Let me know if you have any other testing ideas that I really should be looking into. I don't have the nerve issues related to sensory loss or anything as far as I can tell, so I'm assuming I'm looking more for inflammation at this point.

Thanks for the input!
Posted 1/12/2015 3:37 PM (GMT 0)
SED rate is high from the labs run on Friday. Waiting for ANA.

The high reading could be from UC since I'm not on treatment, but I am not experiencing much in the way of any issues and still consider myself in remission.
Posted 1/12/2015 5:05 PM (GMT 0)
Maybe the ANA will shed some light on the pains you've been experiencing. I know the anxiety stuff is frustrating but it really could be the cause of a lot of your discomfort. It's very real and it can cause a lot of physical discomfort. Have you been to the anxiety board here? it's helpful :) I am not saying it is anxiety, but it may be part of the problem.
Posted 1/12/2015 5:20 PM (GMT 0)
How high was Sed rate? Elevated WBC too- or normal?
The ANA should generate test for anti-dsdna, p-anca, etc.
Will be interested to hear negative or positive and the ratios.
Posted 1/12/2015 5:26 PM (GMT 0)
content, do you know much about this stuff:
www.healingwell.com/community/default.aspx?f=38&m=3294943

What do the results mean really?
Posted 1/12/2015 7:50 PM (GMT 0)
Okay...

-I do not have the SED rate number yet. It will show up online within a couple days.
-ANA is negative, so it doesn't indicate the drug induced lupus.

I am going to try another doctor that's been recommended by my in-laws. My current doctor lady (who is new to me) has not met my expectations; she only prescribed 1/6th of the pain meds I need, and in general I felt she is not listening to me and believing me... which puts me off majorly. I was going to keep trying her, but after speaking with someone close to me they pointed out that I'm extremely good at reading people, and if I felt she wasn't listening then she wasn't.

Now that I have these test results I will aim briefly again at my theory of mono causing these issues. I am going in to the infectious disease doctor in a couple weeks to discuss further.

If the 3rd opinion GP and infectious disease MD can't provide clear guidance on certain tests to look at, I am going to ask for a referral to Mayo and head up there as soon as I can get everything together and I can get an appointment.
Posted 1/13/2015 2:33 AM (GMT 0)
Well, that's great news about the ANA test. They use it to screen for lupus but not to diagnose it. If it's negative, they usually exclude lupus as a possibility and stop testing. Labs vary in the sensitivity of their techniques. So let's hope that yours was a good one!

The fact remains that you have a persistent constellation of symptoms, with severe pain, and you need treatment for it, whether it's an autoimmune disorder or connective tissue disease or who knows what at this point. I imagine you must be very frustrated at this point. I'm sorry that there are no answers for you yet, Thoreau.

Have you kept a log of your symptoms? what are the pains, where (joints, muscles, everywhere), what kind (ache, sharp, throbbing?), how severe, when, accompanied by other things (fever? headache? nausea?)? If no one is listening, at least you'd have a record you could show someone when you finally find the right person who will help. Just trying to think constructively....

Hang in there, T. I know a lot of us out here really care about you and are sending support.
Posted 1/13/2015 6:58 AM (GMT 0)
I haven't kept a log of my symptoms yet, Content, but I can start tomorrow. Tonight I listed out a basic description of it all in my journal just to get my head around the situation.

Believe it or not I'm not worried or frustrated tonight. Working with my dad for the past 12 years taught me one thing above all else, and that is that success comes from not giving up. My patience is built to outlast anything, including this booger of a disease/problem. ;-)

I'll put together a good description, and a way to chart it out per day tomorrow.

I still wonder sometimes about the period about 5 months after this all started. My body become insanely hungry... like get out of my way hungry! I gained 12-15 pounds in a month. That entire month I felt the best I had felt in memory. It was like my body was trying to overcome something. Then the next month I got the sick painful feelings again... :-/

That memory, and issues with my tonsils are all I have to look at empirically if we look at this as some sort of infection. My tonsils were swollen medium sized after starting Remicade (don't know exactly when it happened). I had them removed December 2013. Afterwards a lymph node on my lower right jaw got swollen, and then it was as if that swelling migrated up my face and then disappeared.

I think the doctors get upset when I go in with papers that have ideas of what could be wrong. However, if they would start asking the questions more then I could just be the patient. Looking forward to getting some answers from somewhere with the next few months.
Posted 1/13/2015 7:13 AM (GMT 0)
Gee, it does sound like some kind of systemic infection has been going on. (Which is why I asked abt your WBC)

On a positive note - neither one of us is flaring thanks to Remicade!
Posted 1/13/2015 7:17 AM (GMT 0)

Contentprof said...
Gee, it does sound like some kind of systemic infection has been going on. (Which is why I asked abt your WBC)

On a positive note - neither one of us is flaring thanks to Remicade!

Lol, true story... but we better knock on wood!

I had CBC's done every time I had an infusion and everything was always great. Every time.

Thanks for caring about me.
Posted 1/15/2015 3:38 AM (GMT 0)
SED rate was 22. Normal for my age and gender is 1-15. Still, it doesn't seem terribly high.
Posted 1/15/2015 8:41 AM (GMT 0)
Well that's a clue of something l suppose.
Mine never correlated W/flares so wasn't helpful.
But WBC and creatine levels usually were off so suggested something was awry. Whether infection / or inflammation - kidneys not working well. I guess we are all different....
Good that you are getting data.
Posted 1/16/2015 3:34 AM (GMT 0)
Hey again, I wanted to add an update. Hopefully someone else going through this in the future reads these and is inspired to keep trying...
--------------------

So, Today I saw what I would call my 3rd opinion GP. This was at the suggestion of relatives who told me that this doctor listens very well.

The doctor left me speechless... she was what I have always pictured a doctor would be: caring, listens like a friend or family member would, and sincerely wants to help.

I have so much I could say. I didn't know how much frustration had built up within me, but as soon as I got out of the clinic to the parking lot I began to cry... almost uncontrollably. I am not a cryer mind you, only on very rare occasions. But I did today... and they were the best tears I've ever experienced. The day felt so hopeful... a hope I haven't seen in what feels like forever. I know it sounds very weird, but the experience made me feel like today was one of the top ten days I've ever experienced. I was just so grateful for what had happened.

Her gut instinct tells her that this is Remicade related. We are starting me on prednisone now; I'll take my first dose tomorrow morning.

I'm in a very good place with this. She has a path for me to follow as she tries to help, and tells me that if we cannot figure it out that I would make a great candidate for Mayo and that she will do the referral if that time comes.

It just feels great to be cared about. I can't even describe it.
Posted 1/16/2015 5:12 AM (GMT 0)
Thoreau - I am SO VERY happy for you!
I know how relieved you feel. I had a similar experience when the rheumatologist took over.
The Pred really helped me. But it took some time. Please post updates. I hope it helps you as much as it did for me.
Are you starting at 40 mg?
Sending positive thoughts for you to be pain free!
Posted 1/16/2015 11:04 PM (GMT 0)
Yes, starting at 40 mg and going from there. She said we can just do a quick taper, where I do 40 mg for a week, then 20 mg for a week, then 10 mg for some amount of time and assess from there.

If you have sources or experience that I should be on a higher dose longer please share. :-)
Posted 1/16/2015 11:06 PM (GMT 0)
I am happy she has a plan and gave you a positive feeling. I hope you can get back to feeling good quickly. Did she do any labs?
Posted 1/16/2015 11:21 PM (GMT 0)
Thank you, NSSG. I'm really thankful for the situation. Like REALLY thankful, haha.

She did not need to do labs right now because essentially they've all been done. She had access to the records of the last physician I had gone to, for a second opinion. They work for the same provider, and have a connected computer network.
Posted 1/16/2015 11:27 PM (GMT 0)
Oh that's great. My GI had all my stuff today because she is on a system like that. I am sort of in the same boat though, just very tired all the time and I have a lot of shoulder/neck pain, and there is really no reason for it. She said it may just be inflammatory response from having UC but my UC isn't bad at all right now so I don't feel like I am inflamed. I guess we will see what my latest labs show. I am also goign to do a calprotectin to see how things look in that regard.
Posted 1/17/2015 4:28 AM (GMT 0)
Hey T-man, I can share my experience w/ Pred taper for this. Basically I did it super slowly so pains wouldn't return.
I didn't want to have to increase at any point. I also didn't want to be on it for long. However I tapered over a few months. Psychologically I accepted it because I was in dire straits & needed to hit it hard. We only reduced the dose when I had no pain for three days.
As I recall it went like this: I stayed at 40 for a few weeks, then reduced by 5mg every wk or so until I got to 20, and then reduced from 20 only 1 mg at a time every five to seven days - so long as I had no pain. It worked! Also one benefit was I had no side effects from such a slow taper....
Posted 1/17/2015 4:32 AM (GMT 0)
Thank you so much, Content. I will mention this to her just for ideas as she researches how best to help me.

You've been a great support to me, and I REALLY appreciate it. I had no idea how much the pains have affected me until yesterday when I had the tears well up.
Posted 1/17/2015 4:41 AM (GMT 0)
Our experience has been so similar, except you suffered longer.
I'm glad some good can come from what we've endured. And as you said, this thread may help others. So lets keep going!

Really hoping for some relief for you soon! I'm excited about the new dr and hopeful about the Pred. This is the turning point you've been waiting for!
Posted 1/19/2015 10:13 PM (GMT 0)
Today was day four of taking 40 mg prednisone. My mind feels kind of fragmented on it, and I am definitely not sleeping as much. Those were to be expected.

I woke up at 4 a.m. today to take my pain meds this morning and I didn't really hurt. Rarely that would occur before, if I'd taken meds late enough the night before... so I don't want to be too quick to judge yet.

I am at present 6.5 hours past my last pain medicine dose, and I do not hurt. Usually the pains have been coming about after 5 hours, and definitely noticeable before the 6 hour mark. So, this is a positive sign most definitely. Still, I will need to see days of repeated good news before I declare any true improvement.

The awesome doctor lady that is helping me now is recommending a brain MRI, and CT scans of my chest, abdomen and pelvis. She would also do a heavy metal screen and toxin screen. This is to just figure out what all is going on with me.

I'm comfortable waiting the prednisone thing out before I do other things, but maybe it's smart to rule out other things too... not sure!

She also said I could speak to hematology and oncology.

No matter what, it sure feels good to have this help!!
Posted 1/19/2015 10:55 PM (GMT 0)
Hey, I am happy you seem to be making some progress. It must be inflammatory if the pred is helping, no? I think it's great that you're doing well without the pain meds but the problem is just that the pred isn't a long term solution. It's the only thing that seems to help my UC too and unfortunately, i need off of it :(
Posted 1/20/2015 2:07 AM (GMT 0)
So, it's been 10+ hours since my last dose of pain meds... and I do not hurt at all. I'm trying not to let myself get excited yet...

I don't know how exactly the pred is helping, but a lot of the pains related to remicade that are documented were relieved with prednisone therapy. Contentprof took 3-4 months slowly tapering pred before she was able to be off. As far as I know it sounds like she registered as more severe in regards to her side effects from Remi.

Does Uceris help you, NSSG? Have you tried different supplements and diet modifications?
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