Anyone else constantly sick with biologics?

[CLoVee]

I started biologics about 4 months ago but have been sick the entire time and havent been able to take them regularly. Seems like every time I inject I get sick within a few days of my next one. Its frustrating bc i was hoping id start feeling better (I have AS) Has anyone else had the same problem?

[Blackberrywine]

Unfortunately yes. Very disappointing isn't it. I've given up with them now. You may well find one that works. 4 months is a long time to persevere. Can your rheumatologist suggest anything?

[CLoVee in reply to Blackberrywine]

yes so originally I did not want to be on any medication but i also have a lot of chest pain as well. I take colchicine for that. I started a biologic and got covid a week later then after that a sinus infection. I finally started to inject again and now I have a bad cold. I usually never get sick so maybe I’m just being a baby about it but it is frustrating. My rheum had previously told me to give it a try for 6 months to a year and I am going to try its just hard to stay on it consistently when I keep getting sick. I will say the fatigue i had is gone when I do inject and i greatly appreciate that. I am definitely open to other options though. What do you do now without the biologics? Any other meds you recommend or just doing it the natural way? I am open to all suggestions!

[Blackberrywine in reply to CLoVee]

Great the exhaustion has gone! That, alongside other problems only exhilarated for me, so maybe things will improve with a bit more time for you. For me they just didn't. Like you, I never usually get sick (apart from autoimmune issue). I was sick all the time on rheumatic drugs. I think I'm just highly sensitive to drugs. Even paracetamol can give me horrendous migraines. I'm OK with steroid shots, but they don't last long sadly.

I'm not quite as bad when everything started ten years ago. I could barely move, and life was hellish. I'm still a bit stiff, and do get flare ups, so I just stick with the odd steroid IM. Mind you, it's getting tricky to get them atm. The NHS is a mess. Not perfect, and definately not great for everyone, but it's the best I've got.

[CLoVee in reply to Blackberrywine]

yes so far nothing else has gotten worse but i do worry about long term stuff. A big part of me doesn’t want to take meds at all. I cannot do nsaids due to a stomach infection awhile back it has never been the same and cannot tolerate them. I did the steroid shots as well but they stopped working. My first one was life changing though. I think if they are working for you than keep with it its hard to find something that works

[JenniferW in reply to CLoVee]

Hi Clovee

I know that biologics can make you prone to picking up infections, especially in the first three months or so, but I think you should take into account that you caught covid too. Covid really monkeys around with your immune system and can take several months to get over, so do take that into account.

Having said that, there are a lot of biologics, so another may suit you much better.

Good luck

Jenny

[CLoVee in reply to JenniferW]

Ya know what you are right I didnt really think about the lasting effects of covid (idk why ??) it almost sounds silly to not think of that aspect now that you say it. I know with biologics it takes a bit longer to feel the benefits anyway as well. I am going to give this one 6 months - a year like the rheum said but she said she has no problem trying me on another if it doesn’t work out. The people in my everyday life dont really understand the frustrations so I figured Id complain on here lol you wait so long for a diagnosis and then for the medication and then its like you jump through hoops to have a stable body for once

[Lolabridge]

Yes you will be more vulnerable to picking up infections on the biologic drugs as they do suppress your immune system. But many of us find we need the biologic drugs to get our our inflammatory arthritises under control and to function.

We are warned to do our best to avoid picking up infections for that reason, but it can be hard.

[CLoVee in reply to Lolabridge]

yes thats what my rheum told me. I think starting it in early fall also didnt help bc it was right at the beginning of “flu season” or i guess when everyone gets sick. I have a 7 year old in school too. I just figured id be able to get started consistently before getting sick but guess not. I still have hope that they will work.

[Neonkittie17]

Speak-to-your-rheumy-or-nurse-ASAP.You-May-be-much-different-on-other-biologic-meds-so-don’t give-up-yet.You-haven’t-said-which-biologic-med(s)-you’ve-tried.Sometimes-it-can-take-a-while-to-find-a-biologic-that-works-well-enough.Don’t-give-up-as-uncontrolled-RA-isn’t-a-good-thing.Joint-damage-is-likely-without-protective-RA-medication.Good-luck-and-my-apols-for-the-typing-problem-issues. Also-4-months-isn’t-a-long-time-usually-when-trying-to-see-if-some-biologics-work-for-us.Seems-like-eternity-waiting-for-them-to-work.Quite-different-though-if-you-react-so-badly-to-them-but-in-terms-of-trying-biologics,rheumatologists-won’t -think-4-months-is-a-long-time-to-be-waiting.😑

[CLoVee in reply to Neonkittie17]

yes I have an appt in 2 weeks. They said give it a shot for 6 months to a year so I am going to do that. Like i said i started during flu season so i should have maybe expected a rough start. I havent had any bad reactions with it (cimzia) and my fatigue is gone thank god and I know thats from the cimzia bc it got better within the week I started it. I actually have AS but i do get other joint pain other than my spine and SI joints. My pain sctually started in my hands, feet and chest. I think i more or less am just frustrating bc its hard to stay on it consistently to have more good effects. Ive had to go off of it 3 times due to covid, sinus infection and then a bad cold. But I do have hope itll get better.

[Neonkittie17 in reply to CLoVee]

Sounds-like-it’s-needing-an-uninterrupted-run-I-agree.Very-frustrating-I-know.💗

[CLoVee in reply to Neonkittie17]

yes for sure. I knew people on here would understand lol

[wishbone]

I've had umpteen infections since starting biologics around 10 years ago, including 3 stays in hospital. It certainly doesn't help matters taking powerful immune suppressants on top of having a chronic health condition that makes me prone to infections. I was discharged from hospital just a week ago after another infection and according to doctors am down to last-line antibiotics thanks to resistance issues. Finally had enough and told rheumy nurse that I won't be taking my current med (Rinvoq) until I see my rheumatologist. I've just emailed my GP to ask for NSAIDs to help get me through the next 6 weeks when I have an appointment with my rheumatologist. I also take strong pain kilers.

[CLoVee in reply to wishbone]

That sounds awful! I can’t even imagine. Its a lot to deal with on top of everything else! Nsaids ruin my stomach i havent taken pain killers but if they are working for you i can totally see why you do.

[wishbone in reply to CLoVee]

They work but I also need to be careful with my stomach and only use a smallish dose when I really need to. I'm stuck firmly between a rock and a hard place regarding meds and health conditions. I'll see what my rheumatologist has to say but I definitely won't take Rinvoq anymore.

[CLoVee in reply to wishbone]

That is completely understandable I can’t imagine putting up with it for 10 years. In between being sick with infections did the medication work for what you have? I originally did not want biologics but I couldn’t seem to get out of pain any other way. Im still willing to continue trying bc i have only tried this one for a very short time. I hope your rheum has something that will work for you! Let me know what they say I’m very curious and hopeful for you

[wishbone in reply to CLoVee]

My first biologic worked great...I was like a new man for approx 9 months then ended up in hospital with a nasty infection. The orthopaedic consultant at the time advised me to stop taking that particular biologic because it made it easier for an infection to access my bloodstream. A second biologic, (Baricitinib) though not as effective as the first, thanks possibly to taking a low dose, was still pretty good at controlling my RA and did keep me infection free for the 3+ years I was taking it. Unfortunately it started to lose effect so I was put on Rinvoq approx 7 montha ago during which time I developed 2 infections and ended up in hospital with the second. I'll see how I go over the next 6 weeks. If I can get by on NSAIDs and pain relief all well and good, but from a past experience I have my doubts , so plan B is to ask my rheumatologist if I can try going back on Baricitinib, which though becoming less effective, was not far behind the Rinvoq in keeping my pain under control. Besides, I'd prefer putting up with a bit more pain if it lowers the risk of another infection. So it will be interesting to hear what my rheumatologist has to say.....

I must emphasise what I said about another chronic health condition making me prone to these infections. If it wasn't for that then I may very well not get an infection while taking biologics and not end up in this leaky boat I find myself in!

PS....it was probably more like 8 years rather than 10 that I was on and off taking biologics.

[CLoVee in reply to wishbone]

Ok so the other chronic condition really did make a difference but still thats tough. The fact you’re willing to keep trying though is good. I wonder if they will maybe try you on a completely different biologic.

[wishbone in reply to CLoVee]

They might, I'll have to wait and see.....

Good luck finding a med to suit you.

[CLoVee in reply to wishbone]

thank you! I hope you figure things out as well and can find something that works for you too!

[hatshepsut in reply to wishbone]

Sorry to hear this, Wishbone. Hope your consultant can come up with something

[wishbone in reply to hatshepsut]

Thanks hatsheput, at least the infection seems to have cleared ok. The naproxen my GP has prescribed is pretty effective. Just hope it continues and my stomach holds out.........

[nomoreheels]

Hiya CLoVee, welcome. Can I ask, by sick do you mean nauseaous or ill? If it's nausea maybe one option would be eating ginger, or seeing if your doctor would prescribe an anti emetic. If it's ill or poorly then if it was me I’d be asking if your Rheumy would consider prescribing an alternate anti-TNF. The only problem is all reduce your immunity, they suppress your immune system so your natural defences against illness & infection will be low. Also, some side effects are similar to having a cold (runny nose etc). Children are also illness carriers with schools being the ideal places to multiply them especially in winter. If you've not had your flu jab then it might be worth considering having it even though it's late in the season it will still give you protection. It's not all doom & gloom though, as you’re only on your first you may well find another anti-TNF which suits your system better.

I'm not in the US but I do know because of your health system medical insurance is often used differently to the way the NHS does with more expensive meds, here they most frequently try the least expensive first. You don't say which you're on but either way the anti-TNF's used for AS include adalimumab, certolizumab pegol, etanercept, infliximab & golimumab. Here in the UK we're assessed 12 weeks after starting treatment to see how we're responding, & you've tried your current one that long already. If we're not tolerating whichever we're on then an alternative can be offered. Secukinumab (a biologic) may be considered if anti-TNF’s haven't been successful or tolerated only if the company provides it with the discount agreed in the patient access scheme.

You may have already referred to the ACR guidelines but if not you’ll find them here rheumatology.org/I-Am-A/Pat...

Hopefully we've been of some help. 😊

[CLoVee in reply to nomoreheels]

yes I realized I didnt put the biologic in the post only in the response. I am on cimzia. So after my third loading doses i did feel a bit nauseous which wS wierd bc i didnt with the first or second but i just mean overall getting bouts of being sick. I got covid right away and then sinus infections (i heard those can be common with cimzia) now i have a cold but they told me i can still inject if its mild cold symptoms. Also bc i had these happen my loading doses were really separated and I couldn’t redo my loading doses. My rheum thought adalimumab would be good but some people build a resistance to it in the 1st 6 weeks. I will say luckily my insurance covers a huge portion of the cost and i only pay a small copay. I am definitely willing to try others. I guess my post overall just meant like do others get sick frequently and how to deal with the in between of being on and off the meds and any suggestions. I know there are also supplements to help the immune system but having an autoimmune disease that actually could set off a flare. Idk I’m new to this ive only been diagnosed for about a year and I’m still figuring it all out. Thank you for the guidelines I’m definitely going to check it out!!

[Shresworld]

Oh yes I definitely understand I have been on many biological medication in the last 6 years and the last one was the big guns as they call it Rituxan it worked great I have felt like a don't even have Ra but I have had nothing but infections, COVID and flu's I'm done my appointment in tomorrow and not sure but I can't even enjoy life if I'm sick all the time I hope you get it figured out as well ❤️‍🩹

[CLoVee in reply to Shresworld]

its so frustrating. I remember before being diagnosed being frustrated with that aspect and i felt so much relief getting diagnosed and knowing medicine will help but it feels like an annoyingly rough start. I havent had an serious infections so I really shouldnt complain but its like come on already i just want to feel better. So are you done entirely with medication or just biologics??

[Shresworld in reply to CLoVee]

Im not sure I go to my appointment in a out 7 hours and I should be asleep but I'm not but I don't think I can I can't handle being sick all the time the biological medicine is great for pain but a person can't be sick all the time I'll see what my tummy says today and let you know enjoy your day

[CLoVee in reply to Shresworld]

yes let me know! Good luck!

[Luludean]

yes Clovee, I have!!!!

I was on Humira , constant uti s. Months later Benapali, stomach pain , reflux at night, scary , because I have Persistent AF.

I do have problems even getting listened to in the rheumatologu dept. I wish you well.

[CLoVee in reply to Luludean]

thats awful I cant imagine constant uti’s. This is why i feel like i shouldn’t xomplain bc i was sick w covid and sinus infections and I keep getting colds but it gets so annoying. And w the uti’s then you need antibiotics so you’re off the med for even longer. I will say I am very lucky my rheum is absolutely amazing and I’m grateful for that. Are you on different meds now?

[Luludean]

Not at moment because I am pathetically afraid of the side effects of methotrexate. I am

On heart drugs too and ,was brave enough to ask for a multidisciplinary consultation . This was refused . Upsetting !

[CLoVee in reply to Luludean]

What is a multidisciplinary consultation? I am in the US and it is unfamiliar to me. I’m assuming some type of other opinion with other doctors regarding all conditions? I really dont like taking medication bc of all the side effects or long term effects and I changed my whole diet and everything but nothing has given me much relief. I also take colchicine for pericarditis

[Shresworld]

I went to my appointment my Reumy said he will discontinue the Rituxan because I get too many infection and I will start embrel which he was surprised I had been on that one because I tried several and he said that way if I get an infection or become sick I can skip a week because it doesn't stay in your system for longer then a week that sounded like a smart move so anybody have advice on embrel?

[CLoVee in reply to Shresworld]

I unfortunately do not have any advice on enbrel. Im on my first biologic. But my rheum did suggest enbrel first before she settled on cimzia. I think weekly meds would work well in that instance bc i have been sick a bunch since starting mine and going off really throws a wrench in things since i only take it twice a month. I hope enbrel works for you!

[Shresworld]

Thank you for the reply he mentioned that one to me but because I'm a smoker that one wasn't the best choice

[JuliaTheRAYogi]

Hi CLoVee I am having the same experience. It’s really tough. I am trying to navigate what I personally want to do. I have been sick every single month with infections or viruses that lead to infection. I’m really tired of feeling like crap. How are you feeling these days? @the.ra.yogi - Julia