Differing info from humira pack and rheumy nurse

[maywing]

thanks for your replies about humira side effects. I spoke to the rheumy nurse about the nausea and stomach discomfort. She said it was unusual to get these with humira because it is an injection, and she didn't know of people getting these side effects normally. The thing is in my Humira starter pack lists these symptoms under very common side effects. So now i am confused. Has any one got any answers?

Thanks, maywing

[hatshepsut]

I have been on humira for 6+ months. I get nausea and extreme fatigue after my injection....plus stomach pain. They are all listed in the patient leaflet as common side effects. I also get diarrhoea a couple of days after,which isn't listed, but I have kept records for the last 4 moths.

I suggest you take the patient information leaflet on your next visit, and underline the relevant sections.

The problem is that nurses don't know everything. She should have checked. When I told my consultant, she looked it up online. Professionals should be ready to believe their patients , and at least do some research before dismissing their problems and anxieties.

It's bad enough dealing with family and friends who don't understand this disease, without professionals failing to appreciate our problems. M x

[Damaged in reply to hatshepsut]

I had problems with the nurse in my Arthritis clinic. I refer to her as nurse Ratchet lol early in treatment, and diagnosis she advised me to stop reading.. I flipped, it is a good thing I can read or I would still be waiting for that diagnoses. I confronted her, gave her an article written by Dr Franklin re Crisis in name for RA. Great article as he camp uterus the experience from a patients perspective. I also have nine years University with multiple undergrad and a Masters. So I undoubtedly have far more education then she has. Besides in today's day and age internet is readily available. It is an era of Empowered and knowledgeable patients. I also copied several articles for my GP. He filled out documents for disability stating prognosis unknown grrrr so I clarified it for him. I also filled a formal complaint with the health minister. I have drug plans but needed MSP approval to start Biologics. The goal is to make public and doctors aware of the wide range of affectivity. My Cyclic Cittrulinated Peptide Antibodies are at 300. 3 is considered high. This also means a far more aggressive , erosive condition. I am so exhausted from all these drugs, doctors and tests. But still hoping to find that magic bullet he he.. Hang in there gang.

[allanah]

Good advice from shrph, just to say hang on in there and that the initial side effects wear off soon xx

[earthwitch]

Can you keep a diary showing when you get the nausea and stomach discomfort, so that you can show clearly that it is related to the timing of the injection. Then as hatshepsut says, take the leaflet along to the nurse or rheumatologist with the relevant bits highlighted and show your diary to prove that it isn't just random stomach effects.