Had a set back

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Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 2047
   Posted 1/2/2018 3:57 PM (GMT -7)   
Hi Folks,

I have UC but also Spondyloarthritis

I started taking Humira July 13th 2017

I stopped taking prednisone October 2nd 2017. After the first week of stopping, I felt like my limbs had been beaten with a stick. I had trouble walking, bending, everything really.

I put this down to Pred withdrawal. It is now three months since I stopped the Prednisone and I have not improved but in fact have taken a turn for the worse. about three days ago I started with severe joint pain in my hands, which has now spread to my knees and my jaw. It is clear that Humira is working for my UC but not the Spondyloarthritis, and that is why I am still struggling.

Fortunately, I have an appointment on the 8th of the month with a Rheumatologist. I am guessing he will want to give me some meds to go with the Humira.

What do you think is that best treatment plan for somebody like me. I am really now in a bad way, I can hardly walk, and my hands are bad.



Thanks.
Samantha
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Failed Pentasa, Azathioprine and finally Methotextrate due to allergies/intolerance. Taking Humira. Have finally come off Prednisone Yay!!!

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15678
   Posted 1/2/2018 4:09 PM (GMT -7)   
I hate seeing this right now. I think a rheumatologist is probably the best bet but I do not know what will be recommended. Is Humira generally used for treating Spondyloarthritis? I had terrible joint pain on remicade, but I had no positive improvement, so it's a quite different situation. I am happy you're having luck treating your UC. I really hope you receive some options that work quickly from the rheumotologist.
Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

countess18
Regular Member


Date Joined May 2016
Total Posts : 144
   Posted 1/2/2018 4:47 PM (GMT -7)   
Poppie

I am so sorry about the joint pain. My legs have been achy since starting humira and I have not had that before. I weaned of prednisone last week and now in my 7th week of Humira feel a flare coming on of my Crohns or UC - whatever I have. My thoughts are with you!!
Thanks

T
diagnosed proctitis April 2016 s/p a c diff infection age 53
Nov 2017- ?Crohns colitis to mid transverse - mild/moderate
remission March-Sept 2017 then flared again-failed prednisone wean
started Humira 11/17/17, off prednisone since 12/26, balsalazide 3/ 3x day cannot tolerate Lialda or probiotics
past meds- cortifoam, canasa, rowasa, plan is -will be off all meds except Humira

momto2boys
Veteran Member


Date Joined Jun 2013
Total Posts : 1890
   Posted 1/2/2018 5:32 PM (GMT -7)   
I'm sorry to hear your are in so much pain. Is there a chance that Humira is making your joints worse and your UC better? I know some folks have terrible joint pain from Remi, I sure hope this isn't what is causing your arthritis to get worse. Keep us posted on what the Rheumatologist suggests. I have a colleague who has RA as well as UC and treats both with sulfasalazine, but I suspect you can't take that given your response to pentasa.
42 yrs old diagnosed with proctosigmoiditis 6/13/13
meds- 2 Lialda + sfRowasa every other night- supplements: probiotics (1 VSL3 cap, 1 culturelle and 1 reuteri) 1 gram krill Oil, 1TBSP p. seed powder, 2 g curcumin. Allegra for seasonal allergies as needed. Allergic to sulfites. Currently gluten/dairy free (except yogurt) and eating lots of RS.

Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 2047
   Posted 1/3/2018 10:10 AM (GMT -7)   
Thanks everyone. I do have a suspicion that Humira is causing this joint pain..I just cant seem to catch a break. I can't remember the last time I was not struggling with Meds. My appointment is on Monday and I will let you know what he says. Humira is definitely used to treat arthritis and it is worrying that it is not working for me.
Samantha
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Failed Pentasa, Azathioprine and finally Methotextrate due to allergies/intolerance. Taking Humira. Have finally come off Prednisone Yay!!!

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4889
   Posted 1/3/2018 10:52 AM (GMT -7)   
Maybe going back on Aza or Methotrexate will help with the arthritis.

There is blood work to see if you have the correct Humira levels or antibodies which could be causing you joint pain. I had bad joint pain after I developed antibodies to Remicade, it all went away after I discontinued anti-tnfs biologicals.
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 11293
   Posted 1/3/2018 11:29 AM (GMT -7)   
Ditto a check for antibody levels. If you have in fact developed antibodies to humira, then side effects are A LOT more likely (antibodies mean your immune system is attacking humira as it flows throughout your veins, so it could manifest as joint pains, fatigue, headaches, rashes, and other like things). We've had some say biololgics caused their joint pains in the past. Joint pains can also be a secondary auto-immune condition (i.e., an RA etc.). Could also be an extra-intestinal manifestation of UC. www.crohnscolitisfoundation.org/assets/pdfs/arthritiscomplications.pdf
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

Does the 5-second-rule apply to soup?

Post Edited (iPoop) : 1/3/2018 11:33:24 AM (GMT-7)

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