Xeljanz ~ Has anyone tried it?

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auerica
New Member


Date Joined May 2012
Total Posts : 9
   Posted 6/25/2013 11:58 AM (GMT -7)   
I've been doing the RA battle for a little over a year now, between allergies and EXTREME fatigue, we can't find the perfect match. My Rheumy has just prescribed Xeljanz...yay, no shots!! I'm excited about trying it, but have my obvious reservations about moving up to a full-blown Biologic. (I've been on Sulfasalazyne, Plaquenil, Imuran, MTX, etc)

Has anyone else tried Xeljanz? I am waiting on some financial approvals and pharmacy availability, but wanted anyone else's opinion since it is so very new for RA treatment.

(I am fully aware of the side-effects of biologics...just curious about anything else anyone has experienced!) I'm praying to be a success story...I'd love to go into remission!

Thanks!!

pgro
New Member


Date Joined Jul 2013
Total Posts : 1
   Posted 7/25/2013 8:50 AM (GMT -7)   
While I agree the meds you listed do not work, I am surprised that vicodin and predisone is not on your list. They we the best for me till my a1c was getting high because of the predisone. Just what I think, if you have not tried daily predisone and the back-up vicodin for the flare ups. I recommend that but only good for a couple years till a1c climbs then gottta stop do not need to have diabetes too. If you are already diabetic then skip this recommendation.

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9657
   Posted 7/25/2013 10:14 AM (GMT -7)   
This is a fairly new medication in the USA for RA, so you can google it for more information, Not many on here have tried it yet...I do know it's a JAK inhibitor type medication...keep us posted and maybe just give this medication a try to see if it can be of help to you...
Many well wishes and hope your feeling better soon...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
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auerica
New Member


Date Joined May 2012
Total Posts : 9
   Posted 7/25/2013 11:07 AM (GMT -7)   
Sorry pgro...yes, I have done my rounds with Prednisone (I like to refer to myself as a PredHead...much like a Meth or Crack head...only Prednisone is my drug of choice! Haha) My rheumy limited my rounds of Prednisone because he did not want me to become completely dependant on it. I take Tramadol for my breakthrough pain, but I am extremely hard-headed, and work a physically demanding job (Cosmetologist). I wanted medicine that would slow the progression of the disease, and not just mask my symptoms.

As far as an update on the Xeljanz...I am 20 days in and am a TRUE believer! This is my miracle med! :-)
I take 5mg, twice daily; along with Plaquenil and Aleve twice a day. I have only taken a couple Tramadol (mainly at bedtime) since I've started the X. I am feeling so fantastic that there have been several days I forget to take my meds until around noon...where as a month ago, I was reaching for them as soon as I could pull my aching, stiff body out of bed.

I realize that RA is such a person-specific disease, and no two treatment plans are going to work the same on every person...I can vouch for my regimen this far!

Valeri508
New Member


Date Joined Jul 2013
Total Posts : 3
   Posted 7/28/2013 5:17 AM (GMT -7)   
I have RA and recently dx with fibro. I have such extreme fatigue. I just started in cymbalta. Are you saying the xeldjanz is helping with your fatigue? That's my biggest issue at the moment.

diznyfrk
Regular Member


Date Joined Aug 2013
Total Posts : 298
   Posted 8/29/2013 8:04 AM (GMT -7)   
Auerica, I know this is an older post so I hope you see this. I am fairly new and was searching the forums for any Xeljanz users. I saw your post and see that it is working for you. How long did it take to see any difference? I know everyone is different but I am hoping to get an idea. I just started taking it on Monday so I know it is probably too soon to tell a difference.

RDG1954
New Member


Date Joined Jul 2014
Total Posts : 4
   Posted 7/1/2016 8:46 AM (GMT -7)   
I was diagnosed with RA two years ago. I've tried Humira, Enbrel, Orencia and prednisone. Prednisone works the best, but as we all know, it's not good long term. I've been on Xeljanz now for a week. Quick observations: headache, some tiredness, leg cramps at night.

RA is a terrible disease, and it have affected my life in ridiculous ways. At this point, I've accepted the disease and would like some comfort, if possible. I don't expect miracles. Less pain, more mobility, a slowdown in joint damage is all I'm looking for. I realize that any of these drugs have trade-offs. I also know that at some point, any drugs that works will eventually not work.

It really sucks, but hey - trying to stay upbeat. Good days, bad days on that front. I'm only 62, and I do get angry that this has happened. I look at how I was three short years ago, and can't help but wonder where I'll be three years from now.

Don_D
Veteran Member


Date Joined May 2013
Total Posts : 548
   Posted 7/6/2016 3:47 PM (GMT -7)   
I was on it for a couple weeks but i had a severe reaction to it and my stomach swelled up very bad and was incredibly painfull. This started after about a week but it was helping noticeably to that point. I hope that it does the trick for you, i took enbrel for 12 years so i know how much it can help to find one that works. Take care!

stillwater
New Member


Date Joined Apr 2012
Total Posts : 13
   Posted 7/6/2016 5:38 PM (GMT -7)   
I'm 2 weeks into it no difference yet.Was on Enbrel for 18 months.I had numerous surgeries before I was diagnosed with RA.My fingers are getting worse I can't get on here often .I'll check back after 2 more weeks.

MarleneF
New Member


Date Joined Jul 2016
Total Posts : 12
   Posted 7/6/2016 8:37 PM (GMT -7)   
I was on it for 5 months last year and it did not work at all. So I moved onto another drug that only partially works. I have ultra severe RA, and my rheumatologist said my body destroys the drugs. So it is almost impossible to find something that works, these days.

I hope it works for the people who are just starting it. It would have been a nice way to go into remission

Bloody Red Baron
New Member


Date Joined Jul 2016
Total Posts : 3
   Posted 7/10/2016 5:55 PM (GMT -7)   
I took Xeljanz for 1 year and loved it. No side effects, worked quickly, and went into total remission. Then, it stopped working.

msOuchie
Regular Member


Date Joined Dec 2011
Total Posts : 453
   Posted 7/15/2016 1:45 AM (GMT -7)   
My Rheumy has been wanting me to start Xeljanz for over a year but other stuff just kept happening.
I finally was able to start it in April. Today, I was thinking that it hasn't been working yet and mentioned that to my Hubby. Granted, I had to go off of it for 2 weeks due to minor infections which are now gone. My Hubby did remind me that I was in a lot worse pain prior to going on Xeljanz. True, I couldn't get out of bed or off the couch or chair without his solid lift or to try to walk without tears. So soon, I forgot. But I also reminded him that I was tapering off the non-working Tramadol and put on Morphine at the same time as the Xeljanz. Then again I was off the X for those 2 weeks and was starting to feel worse again but that could have been due to the barometric pressure. I hope it is working!

As far as side effects, I had a slight throbbing pressure on the left side of my head for about 2 weeks. Now that you mention it RDG1954, I have had the occasional muscle tightening in my legs at night which I never had before. It's really annoying, so I have to get up and walk around for a half hour. I hadn't associated that with the Xeljanz. Interesting! I think my extra fatigue is from the Morphine.

Prior to the X, I was trying to get rid of mouth ulcers for a good amount of time. I even used 3 or 4 bottles of that Magic Mouthwash which moved the sores from the right side of my mouth to the left side. That's magical! After starting the Xeljanz the sores disappeared. Yay! That's a big plus since I need to be on it.


"RA is a terrible disease, and it have affected my life in ridiculous ways." We all feel that way. It has wrecked most of our lives.

I often look back at how I was before 34 years ago. :/

Stay upbeat as much as you can RDG1954. Good for you...That's key. I hope that you can get more than some comfort, as well as everyone else with this horrid disease.
Type 1 Diabetes - Severe Rheumatoid Arthritis(RA) - Asthma - Hypounawareness - secondary Raynauds - Osteoarthritis - other stuff

Coversyl - Pantoloc(as irritation preventative) - Levemir - Indomethacin - Morphine - Salbutamol - Prednisone - Humalog - Xeljanz - Refresh Ultra - Aspirin(81 mgs.) - Cod Liver Oil Caps - Vit D other OTC
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