Biologics (Orencia) and side effects

So recently I was changed from Orencia to Xeljanz. When I was taking Orencia I had steady weight gain as well as nagging stomach problems in my upper stomach. A constant state of bloatedness to the point of being completely uncomfortable most all of the time.

I have been off of Orencia for 2 weeks now and taking Xeljanz for less than a week. In that time I have lost 12 lbs while changing absolutely nothing about my diet or exercise. In fact, I have been feeling pretty poorly and I have been much less active than I normally am due to this. it just doesn't make any sense.

I am no longer bloated feeling and my family has noticed that my face is looking much slimmer.

Has anyone else had this experience? I am wondering because I have never seen these side effects listed with the Orencia fact sheet but I definitely think that they were related to this medication.

I hope that everyone is doing well. -Don

Hi Don,
Are you bragging or complaining? :) Good to hear that the bloat has gone away. Not good to hear you're feeling poorly. Is that an SE, or a bug going around?
I am also bloated a lot and have gained weight. We have so many things in common! I think mine comes from menopause and hormonal changes. I guess our commonality ends on that note.
Hope the new meds give you prolonged (like for years and years) relief from pain and damage.
Beth

You're not a whiner Don. We all know the frustration you feel, concerning side effects of medications that are supposed to get rid of some of the symptoms of our initial condition(s).

I did not gain weight or have stomach pains while on Orencia. I did have more fatigue however and I was easily irritated. Patients do differ sometimes with side effects.

Stomach pain and weight loss is supposedly not a common side effect of Xeljanz. Headaches and cold symptoms are. Flatulance is not mentioned as a side effect either but possibly changes in bowel movements could cause gas.

It might be a good idea to phone your Dr. and he will give you a requistion for tests to make sure that the stomach pain is not something serious like an infection, tear or a liver problem. Some Drs. just dismiss a patiient's concern about symptoms, as a waste of time and money when confronted with listed side effects.

I've spoken to several People about Xeljanz. Triggered migraines and stomach pain were some problems. They stopped using Xeljanz because they couldn't stand the pain.

I had my Rheumy appointment this week and he gave me a bottle of Xeljanz but he doesn't want me to use it until my infection is gone which should be a week. If I have bad luck with it, I won't be on it long.

Here are a couple links about the side effect:

http://ra.xeljanz.com/about-xeljanz/what-is-xeljanz

http://www.rxlist.com/xeljanz-drug/patient-images-side-effects.htm

Most of us take these toxic drugs to get rid of severe/unbearable pain. What choice do we have?

Good wishes to you. I hope that you soon feel better.

Post Edited (msOuchie) : 1/29/2016 11:15:09 AM (GMT-7)

Well, its been a while since I posted guys and I apologize for that. Thank you for all the kind words regarding this roller coaster ride. It means a lot to me.

I am doing better with the insomnia now. It lasted about a week or so and then finally dissipated and I am sleeping a lot better now. Thank God! :) I am also feeling better and I got a ton of stuff done at work that had been plaguing me. I have a technical job and I have had really bad brain fog that is making me so unproductive at work I feel guilty for collecting a paycheck. :( Anyway, that started to lift about the same time that the insomnia went away. It lasted most of last week until Friday when it was back in full force and I was totally exhausted.

I really think that some of the issues I have are related to these biologic class of medicines. After a week or so of feeling much better I started having stomach pain again and lots of bloat and gas :( Along with the brain fog and I can't seem to think or remember words or have any attention to detail. It is so frustrating and totally not like me to be like this.

The reason I think that it is related is in part because I seem to continually deal with infections of one form or another on biologics. Last year it was my gall bladder and a slew of sinus infections. An infection that they couldn't figure out why I had and finally decided to remove it because it had become so acute. Once they removed it I felt better for a time then developed an infection in a root canal I had done 2 year prior. I had that tooth removed and felt absolutely awesome for a week and then my stomach started to bother me once again and the brain fog was back in full effect. I am now dealing with stomach issues again along with a sinus infection but not as severe as they were.

In short, I am going to schedule to get back in to see my Doctor and talk to her about all this. I think that the biologics are helping in some ways yet making me sick in other ways. I started back on the sinus meds (inhaler type) and skipped my dose of Xeljanz yesterday.

Hopefully, this will pass. I am trying my hardest just to stick out the side effects and give them a chance to go away. MTX was like this for me and now I hardly notice any side effects at all from it. Its only been 10 days now since I began taking it so it is too early to tell.

I hope you all are well and have relief. Take care. -Don

Oh Don,
I am so sorry that you are having such a rough go of it. I don't know about you, but I have felt that February is the shortest month, because you couldn't stand to have one more day of it!
I hope that the Dr will find something for you that works with less side effects.
Let us know what you find out from Pfeizer. Honestly, these drugs are so new that I think we are still being the lab rats in many cases.
I am going to have to make a return trip to the rheumy soon myself, as I wake up every day now feeling like I lost whatever fight I was in. And that's if I get any sleep to speak of. I'm thinking about asking to retry humira.
Wishing you better days with the coming of Spring
Beth

Hi Don,
Thank you for you words of inspiration. I tried to click on your email, but it doesn't open. You might need to re enter it in your profile.
The last time I saw my rheumy was 4 years ago when Humira quit working. He visits our little town infrequently from San Francisco, and is always booked months out. We don't have one local, and my GP said that the rheumy has decided not to continue coming here. So now I have to decide to change Rheumys to one where travel is two and half hours away, or go see him 4 hours away. I will probably travel to him. I like him a lot and he is very good. He's a big shot doc in Bay Area, so I've been fortunate to have him.
I'm going to start a thread about when biologics quit working. I increased my prednisone tonight and I have been back on the mtx for three weeks, but now my knee and hands, feet wrists and ankles are flaring. I have never had a remission, just been able to keep the RA controlled with as minimal amount of additional drugs as possible, apart from biologic.
I can see why you don't want to give up on them. The alternative may be way worse than the side effects.
I couldn't even walk until I got on Humira after contracting RA. Couldn't work and constant extreme pain and joint damage.
I do admire your outlook, though: Pray, make the most of each day, and hold your loved ones close.
Regards,
Beth

Thanks Sofi329,

Hang in there! I KNOW that the Orencia and afterward Xeljanz were causing the stomach problems. I stopped taking it and after 2 weeks I am feeling so much better. I would say that 90% of my stomach pain is gone and my bathroom issues like diarrhea, very soft stool all the time etc are gone as well. I am really doing much better. Also, I had incredibly bad bloating and gas ALL the time and that as well has dissipated substantially. Not gone but much much better.

My Rheumy wants me to see a Gastro so I have an appt to see him. I have seen him twice now in the past for issues with my stomach and I am hoping that this time he will scope my gut finally. I have had stool samples done, he looked up the other end and all that was fine. I do have constant pain though so I know something is not right.

I think that the biologics have caused infection first in my gall bladder which I had to have removed last year and now in my stomach. Doctors know very little about these drugs even though they prescribe them all the time. I say this because twice now I have had to show my Doctor that the side effects I am having are listed on the fact sheet when they have said that they were not in fact side effects for these drugs. Very frustrating.

So don't give up and hang in there. I hope that you find some relief soon. I have been reading up on dietary changes again in the hope that maybe I can find relief some other way. I am running out of medications at this point.

Take care

Hi constantpain,

I am glad to hear that the sulfa has helped you. I hope that it gets even better, it did for me over about the course of a year or so until it reached its peak.

Yes, I too have been reading and keep hearing about leaky gut as well. I have been reading a book about diet and food sensitivities that talks a lot about it. I have been on elimination diets twice and found that corn and sugar both cause inflammation for me. I avoid them as much as possible as a result but both are very hard to avoid. Corn is in everything it seems, even in our tooth paste. I am still reading my current book but I will probably be fasting soon and I hope that it helps.

Thanks for the heads up on the Neprinol. I will read up on it and see what it is all about. Years ago I tried doing a low dose tetracycline treatment but around the third month my stomach would not tolerate it at all and I had to stop it.

I am sorry to hear that your Doctor will not prescribe you pain meds :( I think personally that it is cruel to do this especially for someone with a known painful chronic illness like RA. Anything that increases your quality of life is a good thing in my book. I hope that he reconsiders and that you can get the relief you deserve. Hang in there.