First dose of Adalimumab tried, wondering if the symptoms I got are common or not??

[Jj01994]

Upon taking the first dose, on May 26th, I used an auto injector to inject into the thigh, injection was not that bad. After about an hourish I started to get a headache, that just continued to get worse through the day, until it was pretty bad. The headache lasted pretty bad for 2 days and then mild on the 3rd before going away. After a few hours later I started to have problems with my equilibrium, where I felt like I was on a ship being hit by powerful waves and trying to get up and walk or move places I was falling down or needed to hold on to things to stay up, this also made me shaky so it was really hard to hold a glass or cup to try and take my pills. I have chronic dizziness but this was above and beyond what I am used to feeling since I'm pretty used to being my normal level of dizziness, since it is 24/7. The equilibrium problem lasted more than 24 hours and then abated. The headache and the equilibrium problem also increased my nausea I think, unless it was just the medication that increased by nausea, I have chronic nausea that is 24/7, but it got worse so not sure if it was just the medication or if it was the other side effects causing it to get worse. Also after a day or two from the injection, have been getting ear aches lasting 2 to 4 hours and in both ears. There has been no redness, swelling, or heat during these earaches just pain, the tricks I typically use if I have an earache, such as a hot pack or hot shower have not worked to make them feel better, painkillers have been mildly effective but not much, I just seemed to have to wait them out. My Rumy is currently away on holiday so I have not been able to talk to her and it is also the first dose so my body could take a while to get used to it, but I am curious if other people have had these symptoms or if they are unusual. Any information, tips, tricks or advice are very welcome.

[Blackberrywine]

Hi

Yes I got awful headaches at the start, but I suffer badly with migraines also. Interesting you mention ear ache. I got this too. Was like someone had shoved a poker down there. Don't think there was infection, just weird stabbing pain. Unfortunately I also got a horrendous out break of colds sores. I didn't get dizziness, but complete wipe out. This went on for about a week. The ear problem and cold sores resolved itself.

Side effects not so bad now, but I'm not sure how affective the drug is. I'm giving it a bit longer.

[Jj01994 in reply to Blackberrywine]

I also get bad migraines, I take medication daily to help manage my migraines and headaches. Exactly how it feels, but yes I do not think it is an infection as the other signs are absent and I have had ear infections before and this feels different. I have never had a cold sore before so hopefully I will not get them now. I was definitely wiped out as well but I kind of put it as being because all the other symptoms. Hopefully that means my ear issue will also resolve itself. That is good to know, hopefully my symptoms will also lessen. I hope it is affective for you, and thank you for helping me feel a bit better about my symptoms with this medication.

[oldtimer2]

Nose, sinus and ear increase in mucus, blockage and pain seem to be quite common and that might account for your symptoms. Steam inhalations and salt water nasal spray might help?

[Jj01994 in reply to oldtimer2]

I have not tried those, I will need to give them a try. Thank you.

[Barrister]

When I started it I got a headache - the first jab it lasted 5 days then over the next few jabs, the days of headache reduced until they stopped altogether.

[Jj01994 in reply to Barrister]

That is good to hear, thank you.

[pineapple_head]

I must very lucky because I have never suffered any side effects from the beginning and I have been in adalimumab for over 3 years. Good luck and hope your side effects disappear.

[Jj01994 in reply to pineapple_head]

Thank you, I hope so too. I like your name, it is kind of funny to me as I am anaphylactically allergic to pineapples.

[john140]

I am very sensitive to many drugs and have had bad side effects to Methorexate and some anti-biotics. My side effects are mostly migraines. However I have been on adalimumab for about a year now, and the main side effect I get is stuffy blocked sinuses at night and slight tiredness on injection day. I do find slight differences in the batches of Adalimumab but nothing like you describe, so I'm sorry I can only say stop taking and speak to Rheumy ASAP.

[Jj01994 in reply to john140]

Unfortunately my Rheumy is away on holiday at the moment, so I can not talk with her and my GP has just said to wait and talk to my Rheumy.

[Blodynhaul]

Hi Jj, Very sorry you're having such trouble.

I was in my very worst state with the RA last year and when starting on Adalimumab in early July last year. Unfortunately it didn't work for me at all after 3 months was in a terrible state and blood test showed I was making antibodies against it. I can't honestly say I had bad effects from it as I was in such agony and debilitation all over when starting it and finishing it! But sounds like you urgently need to tell your Rheumy to see if it's normal or you need to stop it. Does not sound normal, so get hold of them quickly in case you get worse.

Sorry can't help more, but wish you well

C xxx

[Jj01994 in reply to Blodynhaul]

I am sorry that happened to you, hopefully they can get things under control and sorted out for you. Unfortunately my Rheumy is away on holiday at the moment, so I can not talk with her and my GP has just said to wait and talk to my Rheumy. Thank you and wish you well as well.

[Blodynhaul in reply to Jj01994]

Thanks Jj, fortunately I started on a Jak-inhibitor in december and slowly it has helped with the inflammation and agony side a lot, thank goodness (though still the other issues). Really hope you can get the Rheumy's input asap. Good Luck!

[Jj01994 in reply to Blodynhaul]

That is good, I can not get an actual appointment until August but I phoned her nurse and she said she will try and get a message to her while she is away but if that does not work then she will talk with her once she gets back in July. Nurse also said if the symptoms seem too bad I could go to the ER and get a doctor there to give me a red light to stop or a green light to just wait it out till I can see my Rheumy. Thanks.

[Hannah-NRAS]

Hi Jj01994,

It's unfortunate your rheumatologist is away at present but you can always ring to chat with a rheumatology specialist nurse for more tailored advice. Similarly, your local pharmacist may be able to discuss these issues with you and offer some support. But as others have said, it's important to chat with your rheumatologist at the earliest opportunity.

With your established other health issues as well it may be tricky to unearth the root cause as it may be something separate to the medication such as vertigo, or linked to the adalimumab itself. What you can do in the meantime is report your suspected side effects to the medicines and health regulatory agency (MHRA). Find out more here: nras.org.uk/resource/report....

I hope your condition improves soon.

Wishing you all the best,

Hannah - NRAS

[Jj01994 in reply to Hannah-NRAS]

I can not get an actual appointment until August but I phoned her nurse and she said she will try and get a message to her while she is away but if that does not work then she will talk with her once she gets back in July. Nurse also said if the symptoms seem too bad I could go to the ER and get a doctor there to give me a red light to stop or a green light to just wait it out till I can see my Rheumy. I did not know there was a thing you could report symptoms too, good to know. Thank you, all the best to you too.