Anifolumab for SLE
Anifrolumab
I was diagnosed with lupus in 2023 but my first flare (which was ignored at the time) was in 2000.
I recently found a new rheumatologist and almost didn’t go to see him because I had been to so many doctors who had dismissed my symptoms as menopausal, stress or in my head.
My new rheumatologist listened to me and diagnosed me with SLE straight away. I burst into tears. I don’t want to be sick but to have someone know what I have and to understand that it isn’t attention seeking was amazing.
My SLE symptoms are nodules on the lungs which restrict my breathing, hair falling out, inflammation of the arms and legs, they can be really tight and cause odema when you push on them, severe fatigue, episodes of very high blood pressure, arthritis symptoms and pain, feeling very cold or feverish and headaches (migraines).
Since I was diagnosed I have been on hydroxycholorquine (still on it), prednisolone (on and off), Methotrexate (horrible reaction and was in bed sick for 4 days out of 7) and finally Rinvoq (really good for arthritis and psoriasis). The Rinvoq was good for me but I still had breathlessness and some fatigue but no where near as bad as when I was first diagnosed. I didn’t have any side effects with Rivoq except that my hair continued to fall out.
When Anifrolumab became available in Australia at the end of last year my rheumatologist suggested I try it. It took a bit of organizing to get a local hospital to administer it as it requires an infusion every 4 week. This takes about 1.5 hrs for the whole process. We are very lucky in Australia in that the government pays for this drug and its administration.
I have been having an infusion of this drug for 6 months now. For me it has been great.
The nodules on my lungs have gone away and I am not breathless anymore. But, if I get a cold/flu (Anifolumab is an immunosuppressant so I am more likely to get respiratory diseases) and have to stay in bed I get hit hard and I do get breathless when I start walking again. A year ago I started going to the gym 3 times a week and I walk at least 50,000 fast moving steps a week (unless I’m sick). Inflammation in my legs and arms had gone away, my blood pressure is back to normal, I still have some arthritis pain and I still feel feverish (similar to hot flushes) sometimes. I do get tired after I’ve had a busy day (but not the crippling fatigue I had before I had this drug). I always go to bed early and try to get good sleep (to the point of taking valerian to ensure I get sleep). I find exercise makes a difference to the quality of my sleep. I still have some brain fog but I’m 67 so maybe some is due to age?
I do still get headaches and dizziness every so often and have the horrible feeling that these and some fatigue are related to chocolate or sugar. I find it really, really difficult to be strong and avoid sugar. I am trying to stick to 2 chocolate chip cookies a day and avoid other sugar but it is tough for me. I am gluten free but I love bread, rice and pasta which are high in carbs which is the same as sugar. I am allergic to salicylates so food is a big problem for me. Most anti-inflammatory foods are high in salicylates.
So, I am still perfecting my diet and my life.
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Thanks you for sharing your inspiring story.
I'm so glad you found something that is (finally) making a difference for you.
It's great to hear how well you are doing and how active you have become.
For most of us, perfecting our diet is (almost) always a work in progress.
I wish you all the best, Doreen (Team Member)Thank you. I found it difficult to find any reviews of Anifrolumab on the internet except "it cured my lupus". Lupus, as we all know, is so very different for everyone that no drug is going to work for everyone's symptoms. That's why I've listed my symptoms and hopefully this will help others making medication decisions. I also waited until I'd been on it for 7 months before I posted this.
It is great that the scientists are coming up with drugs that potentially work for lupus. For those of you in the US I don't know how expensive it is or if the drug company supplies it to some people for free.
I know that, in Australia, I had to have unsuccessfully tried a few drugs (some for at least 9 months) before I was allowed to try Anifrolumab.,
We appreciate you sharing your experience (and expertise).
It's great that you've done your research and given it a fair amount of time to make an accurate assessment.
Most importantly, it's exciting to hear you've found something that is making a difference for you!
Stay well, Doreen (Team Member)
One of the negatives about having immunosuppressants (anifrolumab is one) is that you are more likely to get a cold, the flu, covid etc (even though I am vaccinated against them) and they last a lot longer than in a normal person. I wait to see if a flu is going to go to my lungs and persist and then I get antibiotics to get rid of it. Illness sets me back and reminds me of all lupus symptoms. I don't want to live in isolation and don't want to wear a mask everywhere. I do sterilise the shopping trolley and wash my hands all the time. I guess the next step is eating more healthily. But chocolate chip biscuits keep me sane.
, hey, what's life without some good chocolate chip biscuits? I mean, really. We all have to have some creature comforts in this life!
But, you bring up a great and important point about the downside of immunosuppressants -- they, well, suppress the immune system. Quite well. And yes, it makes one much more susceptible to viruses and illnesses and it can make it harder to shake those illnesses.
It's a tough balancing act to still live life and not isolate and protecting oneself from serious colds/flu/covid.
I hope you stay as healthy as possible (and please keep enjoying those biscuits) this year and flu free, too!
Best, Erin, Team Member.
