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Finally got an answer to my joint pain

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Ulcerative Colitis
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Posted 6/5/2011 9:51 PM (GMT 0)

I'm not on here much and I'm more of a lurker, but I thought everyone on Remicade needs to hear this.  I've been on remicade for close to 3 years now and it did help me get into remission, but about 1 1/2 to 2 years ago I started developing really bad joint and muscle aches in between infusions.  I was sent to a rheumatologist at the time who did testing (all were negative) and couldn't give me an answer.  He told my PCP that he didn't even feel it was a rheumatologic problem.  Well, the pain was progressively getting worse and my fingers and feet were swelling, so they upped my remicade does to every 4 weeks instead of 8 to help deal with the pain.  It got to the point about 6 or 7 months ago that even remicade wasn't helping with pain and i was having to go to a pain management doctor.  Two months ago, i became really short of breath and had a chest ct which showed a small pleural effusion and atelactasis in the left lung with the effusion.  Was put on antibiotics because doctor felt that it might be a bacterial infection.  I started to feel better and one month later in late april, i was visiting my grandparents and on the drive down developed chest pain with radiation into the left shoulder, jaw, etc.  I waited 2 days till leaving the grandparents (they're both in hospice and grandma was so ill she couldn't be left alone) and met my aunt at an er 2 hours west.  I was diagnosed at that time with a Pericardial Effusion.  At this point, my pcp busted his butt to get me into mayo since we couldn't find an answer.  I've just returned from mayo clinic and I was diagnosed with Inflammatory arthritis and Remicade induced lupus with shrinking lung syndrome.  At this point, they can't tell me if the arthritis will go away or not, because they're not sure if it's from the uc or lupus.  They also can't tell me if i'll regain the lung function that i've lost.  Currently my function is 42% for my age.  The pulmonologist said that there has never been a reported case of the shrinking lung syndrome in drug induced lupus so they can't give me any answers to how this is gonna progress.  I want everyone that develops joint pain with the remicade infusions to know to keep fighting for answers.  When i was tested this time, my ana and the anti-dsna were postive.  They were not when i was first tested.  If I had just set down and believed that it was all in my head or I would never have an answer, there's the possibility that i wouldn't even be alive a few years down the road.  Please pay attention when taking these drugs and if you feel that there is a problem demand answers.

Kelli

Posted 6/5/2011 10:50 PM (GMT 0)
kshoe1999,

So sorry to hear about your Remicade induced side effects.

Doctors are so quick to push these fancy, expensive drugs - but do they tell you about the potential side effects?

I'm sorry, but the only thing I can think of to suggest is: LDN. Low Dose Naltrexone, it works by boosting your immune system naturally. It has almost no side efffects - mostly vivid dreams, is really cheap, and it works for a whole host of diseases, including putting people with UC and Crohns, and in some cases even Cancer in remission.

It might just help you with your now compromised immune system?

I would recommend you do some research. If you need, I will be glad to post some information here, to make it easier for you. Let me know.


 

Posted 6/6/2011 12:16 AM (GMT 0)
InSoFla, I hereby nominate you the official champion of LDN on HW's UC forums :-) haha Amen to spreading the word.

I'd like to second InSoFLa's recommendation, kshoe, and also suggest that you change the title of this post to something like "Remicade warning" There's a LOT of people on remicade here that probably won't check this post because they think it's just a solution to the joint pains common to colitis. A title like "Remicade warning" will get a lot more attention, and I think a lot of people need to read this post.

Not sure how to do that. Maybe the forum mods can help??
Posted 6/6/2011 1:39 AM (GMT 0)
badslinke,

InSoFla, I hereby nominate you the official champion of LDN on HW's UC forums :-) haha Amen to spreading the word.

Thank you, I will take that as a compliment.  I read on another LDN forum, that Dr. McCandless says that in her opinion, there is no one who should NOT be on LDN - as everyone can benefit from it.

I think she's right. I'd like to help people see there is another alternative to the terrible Remicade, Humira, even 6mp side effects, and especially to those thinking of getting their colons removed... woa, talk about irreversible!

Will you, badslinke, help me spread the word?

kshoe1999,

I absolutely agree with badslinke. So glad you posted and people need to know. Give LDN a shot too.



 

Posted 6/6/2011 5:33 AM (GMT 0)
OMG Kelli....now what? Are you totally off the Remi now? How scary.

q
Posted 6/6/2011 1:30 PM (GMT 0)
Do you have to go off the remicade?  I have been on remicade since July 2009, it has helped my symptoms and healed my colon but since my first infusion I have gotten chest pain.  They did all these tests and they think it is just heart burn.  They upped my dose in Aug. 2010 to 7.5kg every eight weeks and this is when I started getting joint pain.  I also have a rash on my face and if I don't take zyrtec I get a rash on my arms and chest also.  They sent me to a RA and they said I didn't have lupus and my joint pain was from the remicade or UC.  How scary.  UC sucks and so do the drugs.  What is your next move.  I hate being on this drug but what do you do.  It has given me my life back but not a day goes by that I don't worry about it.  I have been getting a sore throat and alot of colds also since they upped my dose.  She wants to put me on Methotixate also with the remicade and I said no way.  I get sick enough with the remicade and I have to deal with all these side effects.  Ugh, good luck.
Posted 6/6/2011 8:09 PM (GMT 0)
I am so sorry Kelli, I hope everything is going ok for you now. Thank you for sharing, I will watch out for that.

I got kidney disease from the sulfsalazine and it took me 7 years to get diagnosed and even then I figured out it was the sulfasalazine that caused it. So any swollen ankles, people need to get a their proteins in their urine checked.

I hate all these drugs!!
Posted 6/7/2011 1:53 AM (GMT 0)
Yep, I'm officially off remicade, permanently, now. The rheumy was gonna call my gastro and see about switching me to Humira. I'll definitely talk to him about the LDN since a prescription is needed. I see him next week for a colonoscopy (get them every 2 years). Now i just have to wait and see if the symptoms go away or not. I've now been off remicade for slightly over 2 months with no improvement but i've heard it can take up to 6 months. I'm really, really hoping they go away. I think they would give me steroids to help improve symptoms, but the cardiologist said no way due to the fact that they can cause a recurrence of percarditis. So, until the heart inflammation goes down, I just have to deal with it.
Posted 6/8/2011 12:15 AM (GMT 0)
kshoe1999,

I'm really, really hoping they go away...So, until the heart inflammation goes down, I just have to deal with it.

I sure hope those terrible side effects start to subside now that you are off the Remicade.

Is there anything they can do for the heart inflammation?


 

Posted 6/8/2011 12:56 AM (GMT 0)
What a scary experience to go through! I took 1 infusion of Remicade to try to get out of the hospital while in a very severe flare and declining quickly. I was pretty sure I wanted surgery anyway instead of that drug long-term, but I didn't want an operation when I was so very ill. The Remicade worked like a charm and ended my flare in 5 days. However, a week later I developed the most intense joint pain imaginable. I couldn't walk and it made me cry out in pain with no relief from pain meds. Though my doctors did admit the pain could be from Remicade, they also suggested it was from Prednisone or that I had developed arthritis. I had been on and off Pred. many times before with no joint pain, and I thought it sounded unlikely that I would have suddenly developed arthritis with no previous symptoms. I knew in my gut that it was the Remicade and decided to put no more of it in my body. I wanted surgery and cancelled all my future infusions. In the meantime I prayed the pain would go away as I was so fearful that the damage from the drug might be permanent. In the next weeks, the pain came and went with longer and longer times between episodes and then finally disappeared in 6-8 weeks. It has not come back. In the middle of all of it, I also had a test for drug-induced lupus which came back negative. You have been on it a lot longer, but give yourself some time and hopefully it will eventually get out of your system. Joint pain is one of the known side effects of Remicade. Not sure about the lung issue, but the drug seems to effect everyone so differently.

I had a permanent ileo in November and am incredibly happy with the results. I feel better than I have in many years and am back to doing most things I love (and will be doing all of them soon once I heal even more). No more drugs or side effects. No more UC! LDN sounds like an interesting option to try too. I had never heard of that. I have absolutely no regrets about surgery though. Even if they came out with a miracle drug cure next year, I would be happy with my choice. It is impossible to regret something that has given me my life back 100% and has made me feel so well again.
Posted 6/9/2011 12:18 AM (GMT 0)
InSoFla,

The cardiologist put me on two medications for the inflammation. A high dose NSAID called Indomethacin (75mg 3 times daily) and a drug that has been shown to cause improvement, but it's only approved for gout not pericarditis called colchicine (0.6mg 2 times daily). I have to be on those for about 5 months, with the last couple of months me tapering off of them. Right now, the cardiologist is more worried about it becoming a constrictive pericarditis, so that's why he wants me on these two meds for quite a while. I'm sure my gi won't be happy about the nsaid, but it's something that has to be done right now.
Posted 6/9/2011 12:43 PM (GMT 0)
kshoe1999,

Yes, I'm sure your GI isn't going to be happy about the super NSAID. Be careful, and watch for increasing UC symptoms before they get really bad.

Have you given any thought to adding some supplements to help with the inflammation for the UC?

i.e. omega 3 or krill oil supplements, slippery elm bark powder I think might be very important in helping you prevent additional UC inflammation and irritation from the NSAID.

Also, I know I've suggested it before, but I still think you'd benefit from LDN.

Keep us apprised of your progress. We're all rooting for you.

Posted 6/11/2011 12:20 PM (GMT 0)
kshoe1999,

How are you doing? I've been worried about you...

Posted 6/12/2011 12:47 AM (GMT 0)
InSoFla,

I'm doing okay. Right now, the joint inflammation and pain is the most annoying, but i'm just taking it on a day by day basis. I see the GI this upcoming week, so we'll talk about options and I'll definitely mention the LDN. So, right now things are holding steady. :)
Posted 6/12/2011 12:34 PM (GMT 0)
kshoe1999,

Kelli, I hijacked your post the other day to let people know your situation. I hope that's ok, but I thought it was really important.

Here's the link for you so you can see it:  https://www.healingwell.com/community/default.aspx?f=38&p=1&m=2132130#m2133600

I'm doing okay. Right now, the joint inflammation and pain is the most annoying, but i'm just taking it on a day by day basis. I see the GI this upcoming week, so we'll talk about options and I'll definitely mention the LDN. So, right now things are holding steady. :)

Are you on any Omega 3 or krill oil supplements? I've read that being on 2 grams can  sometimes help with joint pain and inflammation - and it also has the added bonus of helping  your heart health as well. But you'd better check with your doctor first.

Also, read something about the powerful Oregano Oil Extract as being very effective in arthritis. I bought it for myself because I've had severe joint and bone pains, but have yet to try it.

How's the heart situation and pain related to it goin?

I send you my thoughts and prayers and a big hug.

Let us know how your GI visit goes and of course how you're feeling.

Posted 6/12/2011 1:34 PM (GMT 0)
What I don't get is that some doctors seem so unwilling to admit that Remicade causes joint pain for some people. It is listed right on the FDA website. So, they assume that the pain isn't from Remicade and that you have developed arthritis. Cure? More Remicade when what your body really needs it to get off that drug. Higher doses or more frequent infusions could just make the situation worse if the drug is what is causing the pain. Listen to your body and like Kelli said, demand answers before the problems get even worse.
Posted 6/14/2011 12:12 PM (GMT 0)
kshoe1999,

Kelli, how are you?  Been worried about you...

How are you feeling?

Posted 5/24/2017 7:51 PM (GMT 0)
How do you get LDN exactly, InSoFla? If it's not approved for UC, and you need a Rx, how do you go about finding a doctor to prescribe it?

I wonder that about a lot of the advice on this forum - people recommend asking for this or that medication all the time, but I find when I grill my mother's (it's my mother who has UC) doctors about different tests or drugs, they just get annoyed with me and dismiss my questions as ridiculous. My mother is of the generation that just does what the doctors tell her to, and ultimately she will do what she wants I guess (she's tried prednisone, Entyvio until she had an allergic reaction but it hasn't helped at all anyway, and now they want to start her on Remicade), but I'd love to know how people get their doctors to actually listen to them.

I'm about done with healthcare system at this point and it's only been a couple of months of trying to get better treatment for my mother. Maybe advocacy is a new thread, but as far as getting doctors to OK treatments like LDN and probiotics.....HOW???
Posted 5/24/2017 11:01 PM (GMT 0)
I'm just going to address the LDN question. InSoFla doesn't post here anymore, but this is a common issue where a doctor will not prescribe it. If I recall correctly, InSoFla contacted something called "Skip's Pharmacy" and Skip referred her to a doctor who would prescribe it and then Skip filled it. And that's what many of the LDN users did as well. I am hoping an actual LDN user will see this and post a better answer. Actually, I just looked at the title of this thread and think you may have better luck posting a new thread of your own titled something like "How can I get LDN".
Posted 5/25/2017 12:53 AM (GMT 0)
Thank you smile I realized it was very old too late.
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