Well we got back from our Canadian visit a few weeks ago. We had such a great time with my son and his family, so hard to leave although the pull of home is always strong with me. His eldest daughter is doing well with her cancer treatment, she’s a brave wee girl with a great spirit.
So, had my first amgevita injection just over 2 weeks ago and have been feeling crap for the past few days. Blocked ears, sinuses, headache and a slight rash on my arms. I’m thinking these are side effects? Has anyone experienced the same problems and more importantly do they subside? Feeling not a little fed up after my high hopes.
Thanks
Sarah
Written by
Sjhoney
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Hi Sjhoney, so pleased to hear that you did go on your trip and particularly that your granddaughter is making good progress with her cancer treatment, so unfair when still so young.
I’m on etanercept not amgevita so can’t answer your query directly, but I remember having congestion and headache for first month or so of my injections which then subsided, no rash though. Might be worth a quick call to your Rheumy nurse if you can reach them tomorrow, just for some reassurance? Xx
Hi SjhoneyI started Humira in mid July. I do have various other issues which complicate things somewhat so, unfortunately, I end up with a knock-on effect at times. However, I can identify with the sinus issue and headaches. In the end I have realised that the headaches are at their worst when my nose is really stuffy. I do find it cycles between the injections every other week and am probably at my worst days 4 - 11 as it builds and then ebbs away. I also have a very dry mouth (tongue literally stuck to the roof of my mouth on waking) days 7 - 10 and very dry eyes, to the extent that I'm having little bleeds (not the big bright red sub-conjunctival ones, just little irritated ones).
I had my 8th injection on Friday evening and will see what the next two weeks bring. I'm meeting with my consultant f2f in mid-November and hope things will have settled by then as the RA is certainly improving. After no meds since I came off MTX in mid August 2020 (it was doing nothing and I felt grim all of the time), this is great. Not a complete fix . . . yet, but on the way . . .
I can't relate to the blocked ears or the rash. The rash is probably worth checking out with your team, the ears just fall in with the sinus issue unfortunately.
My GP has suggested nasal douching (I'm using the Neil-Med sinus rinse bottle once a day) and continuing with my nasal spray - I usually stop it for the Winter. The nasal rinse is helping but you would need to run it past a GP due to the blocked ears.
Perhaps keep a diary and see if there is a pattern? I am getting far fewer headaches/dizziness with the sinuses as the weeks go on so I'm not throwing the towel in yet!! It hasn't been very pleasant over the last few months here but a walk in the park compared to MTX days
I had all those symptoms bar the rash when I first started my biologic but it did ease the longer I took them, I think it was about a month before they had disappeared completely. Keep an eye on the rash and speak to your doctors if it doesn’t improve,
It is good to hear that your granddaughter is doing well.I've taken a few biologics and JAK inhibitors, the side effects do tend to diminish after a few weeks (tocilizumab excepted), I still get the occassional sinus issue, but it tends to be very mild now and easily managed with using 'sterimar' nasal spray each morning and evening.
A wee bit expensive, but as it is just sterile salt water, there are no contraindications with meds.
I hope things settle for you and you feel the benefits of your meds soon.
Thank you! It’s been very reassuring to hear all the comments on here. It’s hard to think straight when you’re in the thick of these horrible side effects. 😊
Hello Sjhoney, glad you had a good trip to Canada. I started taking Amgevita earlier in the year and don’t seem to have side effects (it has also really helped my RA). I wondered if maybe you had a bug? Maybe nothing to do with the amgevita? Hope you’re much better soon.
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