Bringing information & encouragement to fight RA
I have been on Xeljanz since mid-January. At first it seemed to be having a positive impact on my RA. I felt better, seemed like the pain was better. But the last month or so the fatigue is awful. I sleep 9-10 hours a night, get up to take meds then more sleep. Even afternoons I am just beat. Anyone else have Xeljanz seem to work then exhaustion?
Preparing to try this new drug.will update when I start.
I will report my reaction
Best of luck to you Roxie!
I have ot work in a year.
Why is it so hard to get disability?
Ive had RA for 23 years. been on everything. longest on bilogics, which helped some but never remission; advil every night for years. Started having GI prblems that scared me. also been in low dose of prednisone for 23 years – have never been able to go below 2.5 milligrams without getting faint – my adrenals are shot and the brain just isn’t making any more prednisone. even with all that i still need a walker when i first get up, and after i sit off my feet for a while in the evening. I have deformities and limp plus other things, but thats from long term RA damage. Even on all those drugs, and some use of painkilers like tramadol and vicodin, I would still get flare ups like swollen elbow in locked bent position, knee, hands.
About a month ago i had a weird experience. Started xeljanz. Actually did notice a bit of relief within days. my Rhuematologist saw my hands after 16 days on it – and she was correct that they looked comparatively amazing since they’ve not been without swelling for probably the whole 2 decades. deformity remained but swelling gone. the only side effects were mild sniffly nose that was barely noticeable.
Then i got a flu – coughing was bad, I didn’t know if it was side effects gone rampant. Doc said – stop the xeljanz, and go on antibiotics. Anitbiotics did nothing for the cough, so it was apparently the same flu virus everyone around had gotten, but antibiotics had kept me from getting pneumonia or any infection. I figured when i got really totally better from the cough, i’d start back on the xeljanz. but a weird thing happened – the RA symptoms didn’t return. i didnt have pain, except some foot pain that is from damage, not active RA. Hands no swelling, elbows, knee, all fine…good energy level – im kinda started flipping out!
I had been working with a process called EFT – Emotional Freedom Technique, or “tapping”, for months. before the xeljanz, this EFT process had cleared a LOT – ive slept through the night consistently now for months, and had not done so for decades. better energy level, less pain, off a couple of painkillers. stopped aleve and saved my GI tract. i could even go barefoot in the house and out on the patio!! i was flipping out. Leary of trusting what was happening – but thrilled. Many reports exist that EFT changed all kinds of things including tumors, heart problems etc, shown with medical tests even.
its now been over 1 month since i was on ANY arthritis drug, for the first time in 23 years. Well except i’ve never gone off that 4 miligrams of prednisone. a few times i’ve taken some aleve. I was really flipping out.
Then about 3 days ago – yes don’t get TOO excited for me – i started noticing my elbow was tight and not completely straightening. MINOR swelling in the left hand, and its the left elbow. Foot pain worse – but my feet are already destroyed, so even if i never had RA again – i have a lot of skeleton damage. I have imagined a ton of times going to the rheumatologist, she sees my hands etc looking still good, but i get to say – guess what, im taking NO big drugs. sooooo want that day. im not sure im going to get it and its like having been diagnosed all over again. ive been seeing these symptoms appear, with dismay.
I don’t want to go back on “big drugs”. if i could take aleve a couple times a week, the occasional half a vicodin…wouldn’t that be awesome!!??? I was feeling so CLEAN inside, like it was just – MYSELF. just my body’s own clean functioning. Like i barely remember from over 20 years ago. My insides have had a real break, though. so im thankful for that but i LIKE not being on these big drugs! long ago this disease made me get on them – its simply not a bearable disease. I may be forced to again, but im not going to quite yet…
As of tonight, April 29 2013, my left elbow is still stuck and has some swelling…left hand has some swelling. Feet are killing me, probably worse…but thats not new. maybe…also lower energy level. so i don’t know if i am going to have to go back on xeljanz after all and obviously longer than 16 days…at least its new, and i did start to experience positive results. but why did the RA stop for weeks?? and why does it have to start again? does it???
I know the EFT had already calmed everything down. Medically measurable symptom decrease, some significantly. In the past i was very good about exercise which does truly help pain and function AND to preserve bone and muscle mass.Ive gotten worse about it in the last couple years but esp in recent months… im so sick to death of it, so bored with the few exercises i can do… i haven’t done a thing since i got the flu. So is that catching up with me, and a few symptoms are flaring? SOME things still look good! right hand used to be the worst but it still looks better. I don’t know if this is RA “coming back” or if some of this is swelling and pain from osteo arthritis which i also certainly have.
Im gong to try a cortisone injection in the elbow, AND make myself get back to the pool. I want to stay off ALEVE. Over the years, naprosyn has probably relieved more pain and swelling than anything i’ve been on, and i’ve been on it all. but of course NSAIDS are very dangerous with constant use. MAYBE i can keep off NSAIDS and the big drugs…or buy a little more time before accepting that i do have to go back on something – and it will be xeljanz.
thanks for listening.
Then i got a flu
I started Xeljanz in January and in about 3 weeks I woke up one day and my hands were not stiff or swollen. It was not gradual. I did get oral thrush which is a side effect. Then I had to stop taking it for 5 weeks to have neck fusion. When I started back I immediately got opportunistic infections oral thrush, uti, dehydration, and esophagistis (oral thrush spread to esophagus)and fever and severe appetite loss with nausea. Had sinuses running constantly and stuffiness which never happens. Two days later I had symptoms like s seizure (hands clawed up rigid and facial masking unable to respond and involuntary jerking like dystonia). GP reduced Xeljanz to half until I finished my opportunistic meds Flagyl, diflucan, nystatin suspension and Cipro. I am almost scared to increase my Xeljanz to the 10mg. I have constant low grade fevers now, stiffness is back, pain all seems worse and gait is worse…I have bumped my head several times and I usually don’t bump my head. Feel faint and dizzy EVERY time I stand up. Sweats and tremors. Keeping up with symptoms for RA doctor. I am allergic to methotrexate and tried leflunomide for a while which RA doctor says “failed”. Sigh. I was hoping Xeljanz was gonna be the one to give me my life back. Gonna keep trying it until RA says not to though.
I started xeljanz 2 days ago. I continue to take methotrexate and Plaquenil. Praying it gives more relief than Humira and Enbrel (both helped, but seemed to lose their effectiveness over time.)
Is anyone having odd rashes since starting Xeljanz? I have what looks like hives on my chest and what looks like some weird bleeding under the skin in the palm of one hand. The very red appearance in the palm is going away and now it looks and feels a little like poorly tanned leather.
Hi Darby, I haven’t heard of others having rashes with it but be sure to take a picture & let your doctors know what’s going on.
Thank you, Kelly. I see my Rheumy this Thursday, so I’ll see what he says. I had a much worse rash with Humira. It was really bad and looked like a burn more than a rash. I finally had to stop and waited until Xeljanz came on the market. I have only been on it for seven weeks. On the positive side, I think it has helped me be less tired. I have been in this battle for the last 30 years, and am thankful for the meds currently out there. When it hit me, I was 38 and had young sons. The treatment back then was aspirin or another NSAID. They were saving the “big” drugs until you get worse. Subsequently, I have seriously deformed hands and feet. Like everyone else, I find myself growling at the TV ads where the patient doesn’t show any of the symptoms we all live with every day. Kelly, I think what you are doing on your site is fantastic, but I worry that you aren’t taking care of yourself. I’m 68 and a grandma, so mothering is a big part of who I am, so I guess I’m thinking of you as a mom would. I promise no more nagging;)
I’d consider it an honor to be mothered by a veteran warrior such as yourself. My own mom would be touched at your concern. Happy Mother’s Day Darby.
I hope your rash goes away. I did have hives from Enbrel, so I know it’s possible. I hope that would be less likely with XJ since it’s not a biologic.
I have been on Xeljanz since April 6th, having had allergic reactions to both Humira and Enbrel. Enbrel was the only one that made me feel 100%, but lost efficacy fairly quickly. I have not had any side effects from the Xeljanz so far. I still take 6 2.5 tablets of Methotrexate once a week, but nothing else besides supplements and vitamins. I am 38 years old and was just diagnosed last October after having a synovitis in my right hand that required surgery. I don’t feel like 100%, as I still have some minor twinges in my hands and ankles from time to time, but nothing that’s not tolerable. My cholesterol went from 207 to 275 after taking Xeljanz for only 28 days!! I was shocked! Don’t know if it’s worth taking cholesterol medication or not, but jumping from Biologic to Biologic and injections every week, only to watch them stop working is worse, in my opinion. I just don’t understand how these drugs are considered to be “viable”, when they don’t continue to work. My rheumatologist told me that the Methotrexate would prevent my body from building up immunity to the bios, but that is obviously not the case. So frustrated and seems like I have such a long way to go being that I am fairly young. Any advice out there for combatting this disease over the long term?
This is an update to my earlier posts. The Xeljanz
has been working fairly well, but every time I am ready to declare “it’s a miracle!” I have a bad flare. Overall I have had about a 30% improvement in symptoms, which I guess is about as good as it is going to get.BTW: I am now taking enzymes instead of probiotics with the XJ medication to avoid stomach upset. I have been taking one capsule of Solaray “Super Digestaway” twice daily with the XJ. It seems to work even better for me than the probiotics.
P.S.: Yes, I too get pissed when I see the Humira commercial with the woman going off to play soccer with her young children. Ha! Yeah, right!
I have been taking Xeljanz since Feb 2,2012. It has been THE BEST DRUG EVER!!! Yes, I have had a few side effects…tingling feet and fingers every once in a while and now my liver enzymes are up. I am off of it for the next month to see if they go down but hope to to go back on. I have knuckles agains!! I haven’t seen my knuckles in over 16 yrs with all my swelling. Pain is something of the past! I haven’t touched a pain pill in 5 months..not even an aspirin. This drug is amazing! With the free sample and co-pay assistance card, I haven’t paid for it yet. I think everyone with severe RD should look into it. It has changes my life!
Iam from Bulgaria.I have RA.Can I pay Xeljanz?
Hi, thank you so much for this great blog article and the contributing comments from other RA patients.
I will be starting Xeljanz within the next several weeks after “failure” of four biologics within a one year time period(Remicade, Humira, Actemra, Orencia). I had my last Orencia infusion on May 16, to which I had a hypersensitivity reaction. My doctor and I would, in a perfect world, like to wait to begin Xeljanz until this reaction has subsided, which I am hoping that (1) it will and (2) it will within the 3.5 half-lives of Orencia which should expire next week. I am impatient, as I am really tired of being painful and tired and waiting with anxiety to find out if THIS will be the right drug to fit my body.
(1) Did any of you have a washout period longer than the time to the next biologic infusion/injection before beginning Xeljanz? If so, how long and why?
(2) Did any of you have a hypersensitivity reaction to a biologic before taking Xeljanz as the next treatment option?
FYI, my reaction is a burning/tingling/prickling sensation throughout the inside and outside of my entire body along with stomach cramps and a feeling like someone is sitting on my chest (which leads me to a sometimes uncontrollable coughing fit).
Thank you all in advance.
Good luck Katherine. My doctor made me have a 6 week washout period between new biologics. It seemed longer than some others.
I was allergic to Enbrel and had no reaction to Xj. Probably, a person can be allergic to any medicine, but Xj is not a biologic, so it might be less likely to cause that kind of reaction like you had with an infusion.
I have taken Xeljanz for the past two and a half months, and it’s working great! Very little pain, no side effects at all!
The pills are all samples from my rheumatologist. Today, I received a letter from my insurance company denying my doctor’s Xeljanz prescription. Even though the drug is working, and allows me to do almost all the things I did before RA, the insurance company insists that I try Enbrel, Humira, or Cimzia before they will approve the Xeljanz prescription. (I have not tried any of these biologics. I spent a year trying methotrexate, then leflunomide, then sulfasalazine, then doxycycline. I had adverse reactions to the first two, was allergic to sulfasalzine, doxycycline was ineffective after the first two weeks.)
The insurance company requires that I take a course of Enbrel, Humira, and/or Cimzia, in 3 month trials, before I can qualify for Xeljanz. I don’t know if I have to try each of these other drugs, for a total of as much as 9 months. (Maybe I’ll be lucky, and be allergic or have serious immediate adverse reactions to these drugs, as I have been to various DMARDS!)
This is very frustrating, to say the least. I don’t think Xeljanz is significantly more expensive than these other drugs.
And this denial was made by an insurance doctor who is a pediatrician in the field of infectious diseases! I doubt he knows as much about RA as I now do. How can I convince him that a proven drug is superior to something I’ve never tried?
There is an appeal process, which I will begin tomorrow, but I do not know if it will work. The process takes 2 to 3 months. Maybe I should just give up and try Enbrel for the 3 months. I hate the thought of going back to what I was dealing with before starting Xeljanz.
Please, if anyone has any suggestions, let me know!
I just began Xeljanz last night and hoping it works for me. I have been on Humira, Orencia and MTX. Humira worked well at first, then I went into almost a congestive heartfailure like episode. Then 3 months later started Orencia and was on it over a year with little improvement – but it did do something. When I was on the interim period waiting to start Xeljanz the pain was nearly unbearable. So – it seems odd that after only 2 tablets that I seem to have some improvement – mostly a burst of energy – so we shall see. I couldnt take MTX due to severe nausea, even on the injectable form. Any input appreciated.
Kataherine, re your hypersensitivity to Orencia, i too had this very exact (and weird) reaction of feeling prickly all over but mine was with Simponi. I too went through Enbrel, Humira, Orencia and Simponi, all in the span of a year with little to no RA response and varying levels of reaction. I’m now on Xeljanz, have been for almost 3 months with very few problems and pretty dramatic RA relief. Hopefully it will work for you!
Thanks, Jane and Kelly for your words of encouragement. Been on Xeljanzs for seven weeks and feel some improvement overall. Neurologist has had me start Lyrica for the burning/tingling, and I am crossing fingers that it will bring additional relief. Some stomach issues with Xeljanzs, I think….so hard to tell when they add and subtract meds constantly. Will keep all posted. Thanks again.
I started the xeljanz today, half dose for two weeks, then blood work! The other options were the infusions. I Don’t have insurance and called the local (40 miles) hospital to inquire the cost of getting the infusions? Still haven’t heard! Thank goodness the Dr. had sample. So I’m waiting to hear if I qualify with the foundation. I may have to get a second job! who wants to hire a tired cranky fat lady that can’t do most things??? Good luck to all of us, Thanks for listening!
I’ve been on Xeljanz for about a month and it was working great, when I’ve had three major migraines in the past week. I am sensitive to pharma migraine triggers and I’m certain that it is the Xeljanz. Not sure what I’m going to do, but I can’t have multiple episodes of migraines w/aura in a single week continuously.
I am in the process of finding out if Medicare will cover some of the cost. Also, if the by mail pharmacy they assigned me will even accept the prescription.
I wish you the best and know exactly what you have been going through. I was diagnosed in January of 2009. I was in such pain everywhere that at first it was assumed I had fibromyalgia. After lots of xrays, etc. my orthopedist ran the blood test for RA.
So I have tried all of the meds out there and the side effects were horrible. Humira caused med to develope radial nerve palsy in my left hand. had knee replaced also.
I hope this is going to help all of us, because this disease has been hidden & kept secret far too long.
Prayers and peace being sent your way.
Thanks for your blog, I have learned a lot from you!
Hello, I’ve been reading posts, I was diagnosed in 2009 with RA/Lupus/Fibromyalgia. Every days feels like I have the flu, night sweats, fevers, chills, been on methotrexate, plaquenil, Humira, Enbrel and Rheum. started me on Xeljanz 3 months ago, I started feeling so much better I was so excited. Then pharmacy informed me copay card wouldn’t pay any more till next year!!!! Dr. nor pharmacy had bothered to contact my insurance and get a PA, now I can’t afford to pay for it any longer and have been without it for almost 4 weeks now!! I am so disgusted. The pain everyday is awful, and I can’t do any activites of any kind any more, excercise? yeah right I can barely move. What do we do?????
Sounds like the docs need to call your insurance company and admit there mistake and get it approved. Also call Pfizer and talk to one of the nurses. Maybe they can help. So far insurance hasnt paid anything so they should approve especially since it worked! If all else fails, get your congressman/woman involved and take it to the media. Someone needs to step up. Thats why you have the insurance!
Living with Ra now almost 13 years. Been taking Enbrel/metho combo for 7 yrs now it stop working. Hoping that Xeljanz will work. Thanks for all the great info
Started Xeljanz Wednesday Oct 23,2013 after stopping Metho Enbrel combo for 3 weeks, I was 5 days into a real bad flair up. Prednisone pack I started 10/22/13. I do feel much better stiffness is nearly gone and just feel better all around, more myself have more energy too. I hoping that its the Xeljanz working.
I am new to this site and just happened on this thread when I was searching about Xeljanz. I just started Xeljanz on 10/31 and have not seen much improvement and now have thrush. I run fever constantly and I currently take Plaquinel and Methotrexate injections along with gabapentin and a whole cocktail of other stuff. My main complaint at this time is around 6 or 7 every evening I will get so red and flushed and have fever and my brain will be fuzzy and foggy and I just feel awful. Heat just radiates off my body. Bad thing… I work until 9pm and I just struggle. When I saw the thrush I rushed to the doctor today and spent the day at home hoping for relief. How long will all this take? I’ve got to be able to work. I hope this is the wonder drug I’m hearing about. I’ve had symptoms and problems for about 10 years and was misdiagnosed until June when my wonderful Rhuematologist figured it all out.
After 10 years of unceasing pain, I started Xeljanz 3 weeks ago and so far, it has been a miracle drug for me. Almost immediately I woke with no pain, no stiffness and was able to jump out of bed as I did before PsA struck. I have had NO pain for 3 weeks. I have NO fatigue. I have had NO side effects. I continue with my weekly dose of methotrexate. Before Xeljanz, I had tried Humira with no positive results, Remicade with mild improvement, and every other pill available. I pray that this drug continues to be effective because I’m not sure I could deal with the effects of PsA again. My life has totally changed and I feel whole and healthy again. I wish it could work as well for all of you out there suffering. It does give me hope that research will continue and new, effective, safe treatments will become available for every type of rheumatic condition.
I have been on Xeljanz a 2 weeks and 2 days feel much better with more energy finally able to do stuff after a days work. I felt better after the third day. prior I was on Enbrel/metho combo for 8 years. Stopped Enbrel/metho for 3 weeks before starting Xeljanz
Xeljanz does not work for me. I’ve been on Xeljanz for RA for a little over 4 months now. During the first couple of weeks, I thought it was working quite well. But in hindsight, that may have been because I still had some Orencia left in my system. I’m on 5mg of Xeljanz twice a day plus 20mg of MTX once a week and I’ve been about as miserable as I was before being treated at all. Orencia infusions worked well for me but my copay for them was $265 per month, so we thought we’ve give Xeljanz a try. Now, we’re going back to Remicade.
I started Xeljanz on October 26, 2013. Prior to that I was on Orencia (Nov 2012 to Aug 2013) with Methotrexate and a DMARD; prior to that an oral combination; Cimzia (May 2010 -June 2011; Remicade ( second time – bad reaction 2012); oral DMARDS; Remicade (2003-2010). The first time I was on Remicde was great – could do anything, but then a change in insurance and I had to stop it. So far, so good with the Xeljanz in week 3. Only side effect is a bit of indigestion which I can deal with by taking an (OTC)acid reducer pill. Between insurance and the Xeljanz co-pay card, my costs for the drug is zero. Hoping that this will work well. I will post again in a few weeks after labs and visit with my rheumatologist. Good luck to all trying it.
I am 52 and have been through most of the biologics without much help. I like methotrexate but liver enzymes are rising. How many of you are on daily prednisone? It sure makes me feel better.
Started Xeljanz last Sunday at 5mg once daily. Headache started yesterday am and I still have it today. Stiffness in neck worse., nauseated, I feel pretty bad but have to work.
Also have my heart racing a bit, and upper respiratory congestion even though I had gotten over my rare cold. Loose stool today as well though my last dose was nigh before last.
Doctor said stop till headache resolves then restart.
Don’t think I will restart it.
I have been on about everything there is forRA, started the EXLJANZ almost a year ago, it worked at first, still had flares, but now I am in constant pain. I am wondering if there is anything that really helps anymore. I have had RA for many years and it doesn’t get any easier.
I also don’t like the commercials where they show someone acting like they don’t have RA, I get so frustrated with some people that remark you look really good and you are in pain all over, I have an appt with my doctor wednsday, guess it’s back to the drawing board.
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