As most know, I have GCA. About six weeks ago, I had a slight infection on my face, and my rheumy had me stop Actemra. I resumed on Friday the 28th of May. On June 3, I noticed a small pink spot on my lower right leg. About 2 PM that day, it went from intermittent pain to 'off the charts.' I'm the gal that danced on a cracked femur at my son's wedding...so I have good pain tolerance. The ER doc dismissed me with some antibiotic tablets even though my leg was the color of eggplant. On the 4th, I called my rheumy, who said to come right over, called an infectious disease specialist, and had me admitted to the hospital. I told the ER (A&E) doc I was autoimmune blessed and had hardware in that leg...but the rheumy got the picture.
I was discharged on the 9th but go daily to the hospital to infusion two different antibiotics. My leg is better, but the infection remains, though not as angry. Even though I had taken the Actemra the Friday before, my CRP was elevated, it is now within normal range, but like we keep hearing, that is not a guarantee of anything. My leg is still red and hot..but not purple~!! I have been taken off the Actemra temporarily until they get this under control. One of my bones had been cut because of a bad ankle break in 1992, and my tibia is strong only because it has a rod in it. My options aren't great if this isn't cured, but you are reminded of how much tougher things could be when going to an infusion center.
I wanted to share this so all of you will take your bodies and self seriously. In my specific chain of events, not only did the ER doc drop the ball, but I called my GP the next morning when it was worse, and his nurse told me to take the course of antibiotics and then come in. Had I not listened to my body, I would be minus part of a limb...unnecessarily. If that is what happened, at least everyone tried.
Three cheers for this wonderful forum which taught me~!! xo 💖💖
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Grammy80
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Morning Grammy, BH what a horrendous sequence of events, and brilliant that your own strength and knowledge of your body has enabled you to counter the failings, in this case, of some members of the medical profession and well done the Rheumy. Also, as you say, we wouldn't be in the situation of knowing what we sometimes need to do without the knowhow and help that we gain from this forum. Hope things continue to improve and you are up dancing again soon!!
Thank you for the reminder, Grammy, that we must be our own advocates, particularly during the current times. You have shown strength and perseverance in what has been a stressful and worrying time and you know your own body for sure. I have huge admiration for you and hope there will better times ahead.
If I may, I would advise people to keep their notes together in a file- blood test results, appointments and follow-up letters. I'm sure the vast majority do this.
I also have a diary where I record details of dates of telephone calls and conversations, requests for a call back and whether that occurred, etc. Belt and braces!
Oh Grammy! What a terrifying episode to go through. It is times like these that make us feel so alone! Thank goodness you persisted and finally got on the right path! Sending you love and hugs and a speedy, full recovery. Salutary warning indeed! 💖
Is this the second or third time, something has occurred since you went on Actemra?
If so, do keep a record and if the USA has a Yellow Card Scheme then make sure you register these episodes.
Actemra (Tocilizumab originally) is a recently licensed medication for GCA and although used for Rheumatoid Arthritis for around 9-10 years GCA & PMR are not the same as RA. RA is not classed as an auto-immune illness. I have read the list but as there are over 800 orphan illnesses I might be wrong.
The TCZ trials were not extensive and it was given a quick 'thumbs up' in the States - the UK followed later on. So reporting incidents is essential. That is how the knowledge of side effects is accumulated and eventually all are listed and the most common are then in the paper that comes with your prescription and should always be read by you before you embark on usage.
Take care MP please and I am so happy to know you have lived and learned just like me and others and take action.
Actually my wise one, this is the third infection since last September. The doctor has taken me off completely now. I'm not exactly sure how Actemra Works in our bodies but it seems to give an infection a shot in the arm in this lady's body. My case has been rather atypical right from the beginning. I'm making a list and I'm checking it twice.
I wanted to address the 'yellow card scheme' you mentioned. We have nothing like that in the states. I think if I reported this to the manufacturer, it would fall on deaf ears. Sadly and cynically, I think many of these meds get swift approval in the states because lobbyists for drug companies are interested in pushing for a fat profit!
Another example of the system here... is one of the antibiotic infusions I receive each day is $1499.00! I was able to receive it because my insurance approved it. Otherwise, I would have infusions for at least three weeks long with a less effective med requiring a longer course of treatment. It is also obvious to me that the NIH in the UK spends more on research. So...three cheers to the UK~!💖
In the case of Actemra/tocilizumab the question is less about the fundamental safety of TCZ but more whether it is different when used in GCA as opposed to RA. It's been used for RA since 2009 (EU)/2020(US) so there is a lot of experience with that.
In RA it isn't the only biologic used and is frequently used along with a DMARD, particularly methotrexate as opposed to pred, both of which will alter the dynamics.
Well done you for holding out for the right treatment. You proving to be most resilient against the odds. Such a catalogue in the past year or so. Wishing you well.
For me, it is not the steroid...but the biologic which suppresses my out-of-control immune system....Actemra has been my friend for over a year....just not right now. Truly explaining how these biological drugs work, is something I'm not qualified to do. When it is good, it is very, very good!! As my doctor said, right now I'm a delicate flower....I love that considering my weight!
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