I didn't write about my GCA journey for a while as the whole process was rather confusing and difficult to understand. But now it's time to share my story because it seems to be very different and I know it's important to learn about the whole spectrum of a disease.
Diagnosed with GCA in January 2017, 67 years old, living in Canada I rather quickly got in touch with a rheumatologist and had a biopsy done. My symptoms were never typical: chronic cough for two years, nausea, temple ache, headache, stiff jaw. The headache and temple ache were never unbearable, but new.
ESR normal, CRP 56, biopsy left negative, 50 mg Prednisone, second worst time in my life, taper in April to 40 mg strong temple ache and CRP went up, 60 mg. Later Methotrexate was added, but the CRP didn't go down. Doctor told me he really doesn't know what is going on in my body because he never had a patient who's CRP didn't go down with the medication I took. In September he decided to take me off the medication 10 mg per week to have a second biopsy done. I followed his advice. No headache, no GCA-symptoms at all, but the cough came back and I suffered from fatigue. CRP 80. Biopsy negative, fatigue to the extreme with laying down resting and sleeping all day long. I didn't even cook anymore, no energy. The fatigue was the worst part in my life and the cough was killing me. Then I had problems with my right eye. The eyelid drooped, moving it was extremly painful and the pupil size differed from the other eye. This lasted for five days and disappeared. The eye specialist suspected Horner syndrome.
I received all kinds of vaccinations- tetanus, flu, pneumonia and shingles- before injection the first Tocilizumab syringe on December 21. It costs us Can$940 for four syringes= two month treatment as Pharmacare denied cost coverage and my private insurance covers only Can$300 per month. So, one month (2 syringes) cost Can$800. Pricy Christmas present. Is it worth it?
My doctor told me patients can have GCA even when two biopsies were negative. My diagnosis is still very atypical.
Back to the question is it worth it?
I injected my first Actemra medication on December 21 at 3.30 pm. No allergic reactions, no side effects that day.
Next morning I felt so much more energy in my whole body, like every single cell got life again. It lasted half a day, I crashed in the afternoon.
December 23 and ever since I'm so much better. The cough seems to get less and my energy level is so much higher. I cook again and do things. I still have to learn to take it slow, but I'm extremely happy I got my life back. It's a miracle and I hoped for a miracle. CRP was 78 the day before injection. Next month will tell.
I know my story goes against all the rules, I sometimes felt like a fake because of this. I still can't be sure about GCA or not, and I hope it's not a placebo effect! And I hope it'll continue to work. Right now I'm just so very grateful. We also applied for financial support from Roche and hope we'll get some.
There is actually not much more to tell, one story of many. But every single word is true, I've lived it
All the best to all of you, Monika
And by the way, my moon face disappeared and I lost already eight pounds because some days my appetite is lacking what seems to help.
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Akino
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I'm very very pleased to hear it has worked for you - and very heartened to hear something that maybe will become a model for atypical patients in the future, I would dispute though that you have really had a "Monotherapy with Actemra for GCA". You inititally had a high dose therapy with corticosteroids for long enough to have taken away any severe inflammation that might have threatened your sight. If you read this
you will see there is increasing agreement that there are 3 potential versions of PMR/GCA and it seems reasonable to suggest that you probably fall into the area in the centre of Fig 1 where they all overlap. That could account for the mix of symptoms and the lack of a positive biopsy. I, too, fall in that area, but although I had cough, jaw claudication and scalp soreness I never had headache I could identify as possibly GCA or temporal tenderness and the lead author agrees on the basis of the history where I fit in the pattern although I have never had an ESR reading that would be classified as out of range and my CRP has never been raised in the context of PMR/GCA. My symptoms were improved on 15mg pred - but I was never able to reduce far without a return of symptoms. The best period I had in that respect was after a very short high-dose taper and since then I have reduced to 5mg before symptoms return.
The overwhelming fatigue you experienced in September was very likely to be at least partly due to adrenal insufficiency after several months on high dose steroids followed by a fast reduction but equally obviously some was due to the on-going activity of the autoimmune disorder and the Actemra has had a dramatic effect on that.
I really do hope it continues to work - and that Roche may help with the cost. Is your rheumy intending publishing a report? Even an anecdotal report in the form of a letter to a journal would be useful in bringing the concept to the light of day.
Thank you PMRpro! You might be right and honestly I always felt like I'm cheating and are not really ill. It's so good to learn and know now that this is not true. I could cry thinking of it. And I'm just so grateful to have some energy again. I also hope it's not a placebo and that it'll last. Fingers crossed.
For now thanks again for your insights and professional help, Merry Christmas, Monika
The term Monotherapy came from an information about how Tocilizumab works and how it was used in combination with Methotrexate and alone. They called it monotherapy.
Oh I don't think there is any question you are ill - whether doctors recognise the fact is another matter. But I know what you mean - I have had a theory for about 8 years - it was confirmed as being very likely the other day...
I understand the bit about feeling like you are cheating or not really ill. It is very difficult when tests don't necessarily reveal a recognised illness. Once diagnosed you can stop feeling like you ate going crazy!
I am so pleased you seem to have found a treatment that is helping. At the moment that is all that matters. And yes. You may have to learn to pace yourself. 🌻
My Rheumy doesn't know yet about the unexpected good reaction to the Actemra injection. I'll try to phone him on Wednesday, maybe he is in the office, he works on Sundays some times although he is already far into retirement age.
Hi PMRpro Thanks for that link it understood the picture but not a lot else as it was too 'medical' speak for me. However from the picture I think that I too fit in the middle. Do you know of a layman's version of the text?
Thanks anyway, hope you don't mind me asking. I wonder if I ask my rheumy what it means if I have time at my next appointment. I did start with a positive biopsy so he is open about the what next. x
Since you have a positive biopsy you are never going to have to fight your corner and the management shouldn't be a matter for dispute. Which however you look at it is a good thing!
Mind you - show it your rheumy because the more who are aware of the overlaps the better. It does come from a very influential set of doctors - but the question remains how many others have seen it!
Amino, I so glad to hear your story. And also, as others mention, grateful that your brought your story here. Please keep us posted. Wish you continued improvement.
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