Biologics

Hi I’ve been accepted for biologic drugs to treat my RA - any advice? What sort of side effects are common and best ways to deal with them? Also does the fatigue also improve? Thanks

[Mandalou]

Hi Jenny

Well depending on what Biologic you are given would determine what side effects if any.

Also your expectation of what a side effect entails.

If you are asking about your immune system being dampened and your white blood cell count being lower than your average man on the street then yes this is what you would call a side effect but one that is indicating that the drug is foing exactly what it was prescribed for.

As for unwanted side effects I would say IMHO less than with the traditional DMARDS such as Methotrexate and Sulfasalazine to name but two.

Hydroxychloroquine can affect your eye sight for example after long term use.

I cant speak for people who have infusions but my experience on Enbrel and Benepali is that I have zero side effects and my bloods are as expected with low CRP and normal ALT .

I wish you amazing results and good luck. I thank my stars I was eligible for Biologics.

All the very best

Mx

[Hidden in reply to Mandalou]

Thank you I’m very hopeful too 🤞

[Moomin8]

Morning Jenny

I have a biologic called Cimzia; I was given a choice of 4 about 18 months ago- a daunting task at the time. Anyhoo, I went for the bi-weekly choice as I felt that as I already inject mtx once a week, it would be a more practical solution. For me, apart from an initial few months of getting used to things and having a slight reaction to it: throat slightly swelling which was counteracted by antihistamine tablet, all is good. My crp and esr are reasonably stable and my joints are much better. I still get tired -but not nearly as much- and my hips are sore but apart from that- not too shabby😉My wbc is low along with my neutrophils atm but nobody seems to be worried so why should I; I have a life to lead 😊Also, I am now able to walk further and exercise which is allowing me to lose weight😇

[Hidden in reply to Moomin8]

Thank you - hoping to be able to walk more and also lose weight too

[Fra22-57]

I have tried 3 ..Enbrel, HumIra and rituximab and none even started to help but do enormous benefit to others.Whatever you try good luck with.they all have side effects...what drug doesn't. Depends on what other conditions you have.I avoided one that can effect stomach bleeds as I have diverticulitis. Some can cause cancer but to try and be better managed with pain you can give them a go.HumIra and Enbrel were by pen injection...not easy to do when you have bad hands but you soon get hang of it.your immune system is even less with them and you have to avoid anyone with illness as could make you very poorly. To be honest if you read all side effects on all medication you would scare yourself not to take any but we do as majority of time you don't get any of them

[Hidden in reply to Fra22-57]

Yes - I’ve started to look at the short term impact rather than long term - sorry they didn’t work for you. I’m very hopeful they make a difference for me

[ATBr]

Have been on Humira for six months and it has made a great difference to energy levels. Most days I feel back to normal in terms of what I can do. For first two injections I had bad headaches following but nothing since. Also initially white blood cells became dangerously low but I was also on sulfasalazine and methotrexate. Stopped the sulfa and bloods o.k. again. All inflammatory markers normal now. Still have problems with hands in particular but overall humira has made a remarkable difference and almost feel I have got my life back. I hope whatever you are given works well for you !

[Hidden in reply to ATBr]

Thank you - I have I get a similar impact 🤞

[Scottishlad]

The only side effect I have had from Cimzia is a slight injection site reaction. This was a slight swelling and tenderness when I used my thigh for the injections. I cycle a bit and there is little fat on my thighs so injection was going into the muscle rather than subcutaneous as intended. There is a slight blanching around the injection site for few days when I use the belly and I find the Cimzia is more effective when I use the belly.

Overall my condition is much better on Cimzia and fatigue is reduced. Apart from the odd flare I am generally in remission.

[nymima01 in reply to Scottishlad]

My daughter has the same problem with Humira around her mid-section. The doctor told her to get benedryl cream and apply every few hours for a few days if necessary until the site calms down and to make sure she takes the Humira out of the fridge at least an hour and a half before she injects. I hope this helps.

[Scottishlad in reply to nymima01]

I take my Cimzia out of the fridge while I have my breakfast then my shower, means it is out of the fridge for a good 30-40 mins. For Cimzia if the air bubbles in the syringe move freely it is warm enough. The biologics nurse said that if you were clean from the shower there was no need to use the wipes and that they could cause problems. If you use the wipes you need to wipe for 10 seconds then allow 30 seconds for the alcohol to evaporate before injecting.

[Richshere2005]

Morning IV been on humara for 3 yrs now it's helped me greatly with joint pain from my neck hips and hands little head ache morning after the dose but it goes away but you can get sick easily although I didn't start catching flu or fevers from any one till 2.5 yrs in. Always remember everyone is different so you can read these all day and may not apply to you at all.

[summer32]

I would like the chance of a biological treatment

[dbestdeb]

I take Enbrel by injector pen once a week and just about everything has improved since I started. Pain and fatigue are not totally gone, but are much less. I am very grateful for my Enbrel. My doctor warned me that I may get sick more often and to never inject if I’m ill. Quite the opposite has happened. When I was taking just azathioprine, I caught every little bug that floated by. Now that I’ve added the Enbrel to it, I’m sick less often than in years. My only reaction was an itchy welt at injection site, but now on my 4th month, that has stopped. When I questioned the doc about the danger of side effects, she said all of these RA drugs carry risk as does letting the RA go untreated. Looking at it that way helped me to choose what is best.

I hope you have a wonderful experience with your biologic. Remember, it takes about 3 months for the full effect, so don’t worry if you don’t feel better right away.

[Pulfs]

I'm retuximab every 6 6ths. Before the infusion starts I am given paracetamol and an antihistamine infusion to help with any itching. During the infusion drink plenty of water to stay hydrated. Rest of that day and the next I'm very tired and rest up. Gradually over a few weeks I feel good and this lasts till about I'm due for next round. The infusion is put through slowly so any side effects such as sore throat can be spotted.

Hope you get on ok x

[karenpenn]

Hi as i mentioned the other day i am due to see the rheumatology nurse on thursday to start Biologics my specialist Rheumatologist said that i would be having Secukinmab Injections but today i recieved a copy of the clinic in May 18 and she is saying it is going to be possibly Benepali has anyone had this one before and what are the side effects. I hope Jenny-H you get to find out which one you are having and get relieve from them. not looking forward to doing them myself but in so much pain i'll do anything.