Biologics worry......!!

[Ms-D]

Hi, I am starting Benepali on Monday during this horrid time. I wanted to ask if anyone who is taking it or has taken it how they have been during this covid-19 period and if they have been ill? Thanking you all in advance x

[helixhelix]

I’ve been on the same original drug for 18months+ now, and not so much as a sniffle. I did get a bit of allergic rhinitis at the start (ie a runny nose) bit that wore off.

It has been great for me, really made a positive difference.

[Ms-D in reply to helixhelix]

Hi how are you? You mentioned this before which is why i was happy to start benepali. Just concerned starting it now due to covid 19

[helixhelix in reply to Ms-D]

Truly fine. Bloods rock solid, no side effects, less fatigue, and rarely need a painkiller. I garden a lot and often get cuts and scrapes that heal normally. And there’s no shielding in France, so I’m still going out. Carefully of course in places where there are other people, but so far so good. Fingers crossed.

[medway-lady]

I had it its been suspended as it really affected my sinuses. Vile taste and it took 2 lots of antibiotics and the nasal steroid spray which I am still using . Because of the fact its 3rd infection in 3 months it was suspended until I can see an ENT chap. As it might be polyps and they can be removed and then I could retake. To be honest it did'nt do much so still on Azathyoprine which is now in short supply too. I have no idea what happens next month if unable to find AZA might have to take the Benapli and suffer I suppose. But I'm reluctant to take without blood tests anyway as have low kidney function. I'm nt that impressed with it really but there are more and in many years only had 3 meds. so am prepared to wait till the crisis is over.

[Ms-D in reply to medway-lady]

Hope ur feeling better. Thank you for the heads up x

[Barrister]

I’ve been on Benepali for over 2 years, no infections in that time and barely even a cold.

[Ms-D in reply to Barrister]

Thank you. Just wary esoecially with the pandemic x

[KittyJ]

I’ve been on benepali for almost two years now and it made a big difference to my inflammation and my life. I’ve not had a cold or flu since starting on it. I hope it works as well for you as it has for me x

[Ms-D in reply to KittyJ]

I appreciate knowing that. The other dmards caused alot of sickness so this is my last resort really. Just wary with the covid 19 and immune being weak. Glad to hear you are better. Makes me reassured as i dont have much swellinh but pain in knees and elbows is horrendous especially as im sero negative. Oh well. X

[KittyJ in reply to Ms-D]

🤞🏻 for you x

[Ms-D]

Thank you for the amazing advice. Im just scared starting it due to the covid 19 and risk factor x

[Soundofmusic52]

I v been on benepali for 10 months no colds it has changed my life for the better stay safe 👏👏

[Ms-D in reply to Soundofmusic52]

Thats reassuring. Well i guess i will have to bite the bulley and take it x

[Brikel]

Hi been on Benepali for nearly three years without any side affects. it really does make a difference. Stay safe and well

[Ms-D in reply to Brikel]

Thank you. Just concerned about taking it during this time x

[Mandalou]

Hi Ms-D

I was started on the Biologic Enbrel right at the end of 2015, after taking that successfully I was switched to the Biosimilar Benepali and have used it ever since , injecting once a week.

It seems to work for me with no ill effects but I do flare in fingers and feet if under stress.

I have had colds and chest infections but I put that down to the huge amounts of people I meet in close proximity with my job in aviation .

I believe I probably had Covid in mid March but will never know due to no tests.

My teeth became Uber sensitive , I was more lethargic and uninterested in anything , I developed shortness of breath, then an uncontrollable cough,that was awful when lying on my back, rattles in my throat.

This went on for about ten days and I had a period where I thought I was better but got worse a day later.

I then felt as if I had little drops of rain over random parts of my body. Like little electric shocks which was a horrid sensation but lasted a couple of days. I’m better now but still feel my chest has taken a battering.

I told my Rheumy Consiltant, he was very interested and we talked about Hydroxychloroquine and how who knows but being on 400mg of that might have helped. I told him I had stopped the Benepali for a week.

I lost my sense of smell and taste in 2018 after a bad respiratory infection so that wasn’t a factor this time.

Anyway, sorry to go on, but what Im saying is go for it with Benepali I think the benefits outweigh the risk.

Good luck whatever you decide.

All the best

Mx

[Ms-D in reply to Mandalou]

I really appreciate your advice. I work in a school so concerned about starting it especially with covid 19 and if school open again in may i will not be able to work due to infections or bugs from 5-6 year olds x

[Mandalou in reply to Ms-D]

So appreciate your dilemma, Ms-D

Just your every day ordinary bugs will shoot round like wildfire especially after the little darlings have been kept apart for so long.

The way I rationalise things to myself is that my immune system is of super strength which is why it kicked into overdrive, Ive always been a strong healthy type.

So even though the Benepali dampens down that immune response, I still have an immune system.

A good chat with your Rheumy nurses would be valuable. Can you leave them a message?

Mx

[Ms-D in reply to Mandalou]

Thank you for the love and support. I guess my partners freaking out incase i get coronavirus and if my immume is compromised i will be really sick.

[Mandalou in reply to Ms-D]

My pleasure to be even the tiniest bit of help.

Very natural and very normal under the circumstances for loved ones to worry. Everything is heightened and compounded by other factors. Job security, sense of helplessness , lack of ability to plan when some people thrive on the regular so lack of structure can have really detrimental effects.

Sending virtual hugs.

Mx

[Ms-D]

Just had my first benepali injectapen in Monday and wanted to say than you to the advice and love you all gave me. It hurt initially but that wore off but had a metalic taste in mouth for two days.

Ive now got my wisdom tooth deciding to cut through so wanted to know if its safe to go dentist whilst taking a biologic?

[Hidden in reply to Ms-D]

Need to chat to your dentist. Do you really need to have treatment done? You will probably need to come of it for a short time for treatment if you can let the Biologic work first. Glad things are going well

[Ms-D in reply to Hidden]

Im trying to delay the visit but since yday the aches getting worse and my glands are swollen so im worried about next treatment.