I have TAK and am waiting to start on Tocilizumab.
I've been taking prednisolone 55mg for 2 months. I was also on methotrexate but since a chest infection took hold, I've come off. The antibiotics are beginning to work but I'm still coughing.
I'm struggling to come to terms with what's taken over my life when, until March 2019, I was fit and healthy. Had a stroke in March, followed by a heart attack in August. Now I struggle to use my arms due to the blocked brachial arteries and feel anxious for the future.
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MrsChips
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Welcome - I do hope we can help you, you are the first officially diagnosed TAK (I'm assuming you mean Takayasu's arteritis?) patient to join the community. Many of your problems will be familiar to us though.
I find it very interesting - one lady on a forum had had a diagnosis of Takayasu's for some years and at some time noticed her notes now said GCA. When she asked she was informed that at under 50 the dx would be Takayasu's, after 50 it was GCA!!! The main difference seems to be that if you have Takayasu's you automatically get Actemra, if you have GCA you have to "qualify".
Do tell us a bit more about yourself on your profile page. And what the doctors say - that will be very interesting (for me at least).
So sorry to hear of your diagnosis and complications. You must be a young woman. If you give me a couple of days, I can find the title and author of a book written by a woman with TÀK. She discussed her trials, family responses, and how she coped. It is very inspiring.
And as a forum moderator and a medical researcher, PMR Pro is a great resource of knowledge. Tell us more about your early symptoms, diagnosis, treatments, and support system.
We can learn from you too. You are our first TAK member so a warm welcome. You may want to visit the Vasculitis section of Health Unlocked if you haven't already.
Most of us are PMR/GCA people. We are PEOPLE, not patients. Only we need patience waiting for appointments and in waiting rooms.
Please stay with us Mrs. Chips. We will be eager to hear what you can share.
Suppose it depends what you call young - MrsC's profile says she is 65 which I call young and is a normal age for GCA - but quite a bit older than the usual age range for TAK. But there is another lady who, as I wrote, had a TAK diagnosis first!
It would be really interesting to be able to read about someone else's experience. Thank you.
I'm actually 65yrs which makes me older than than the under 40 for other TAK patients. I have no Asian connections either. Where all this arose I have absolutely no idea.
Still searching for book; it is out of print unfortunately; not available as ebook; I found its existence online but had to buy in paperback form. I remember that the woman was American from Pennsylvania and had a hard time getting a diagnosis; her first name is Amy. She had recently had a baby. Eventually treated at Johns Hopkins U. Vasculitis Clinic in Baltimore MD. I'll keep searching; could be I donated it to library.
But Poopadoop's link below should be able to help you share experiences.
I feel a bit of a pioneer if I am the first TAK member.
I began this journey in January 2019, when I began having severe headaches in my right temple area. The GP did mention vasculitis but the inflammatory markers in my blood weren't considered high enough to warrant investigation.
I had a stroke in March followed by many tests to find out the reason. A check up with the stroke consultant showed the lack of pulse in my left arm and a PET/CT scan diagnosed vasculitis. I then had a heart attack a few weeks later.
Due to the lack of pulse/ claudication in both arms, I have been labelled as having Takayasu Arteritis. I have been given funding for Tocilizumab and am currently waiting to start this. My current CPR levels are 23 which is too high.
I found the memoir of a woman with Takayasu's. "Vasculitis: "Sick and Tired of Being Sick and Tired" by Sheri Lyn Schwar; it can be purchased through Amazon in paperback form.
However, it will come from awesomebooksusa. $14.61 +$3.99 shipping.
There are other third party sellers: one selling at 9.99+ shipping. It gets very good reviews from all readers. It is not dry or technical, but very human as well as inspiring. I hope you do buy it, and read it. It is written by an extraordinary, but downhome young woman.
Hi must have missed this post before I have LVV seen in all main arteries down as far as groin on ct pet scan , had horrendous experience with steroids, all the side with little benefit,crp back up to 39 on 30 pred and 20 methotrexate, should be starting tocilizumab next week so would be pleased to hear if you have started it
Will be starting TOC in abt a week's time. Looking forward to it as I feel so bad. Am on 50 mg Pred and have just had 3 IV pulses of 500mg, with no improvement. This really is a shit disease.
Not good to hear how awful you are feeling but good to have some one to compare experience,I also have found the vasculitis or the treatment horrendous, have all the side effects from steroids but they have never seemed to fully control the inflammation, mobility or lack of it, is my biggest problem, fatigue not tiredness,just seems to prevent me from moving forward
Hello MrsChips
Welcome to Our Forum, Sorry l wasn’t around today to say Hi, l wear my other Hat on a Saturday, Volunteering at the Hospice. l’ve not heard of TAK so l will look it up as it’s good to be be familiar with other conditions also.
I’m a Moderator on the Forum & have PMR but am collecting other Medical Conditions with 3 Letter Acronym’s which give me many letters after my name!
Hello Mrs Chips, I’m normally on the Vasculitis site, but chanced on your post. I’m in the same position as you....originally diagnosed with TAK in January 2012, but then told that I was too ‘old’ for that and became GCA. At clinic visits some doctors used to TAK and others GCA!! Now I notice that I’m referred to as having large vessel Vasculitis (LVV) which I’m quite happy with. Probably best if I private message you?
I'd love to hear about your experiences. I've said for a long time they are missing a lot with GCA/PMR and their age limits in both directions. I have PMR - I don't think it is "just" PMR but no way of proving anything.
I would love to be able to discuss our TAK issues with you. I’m very happy to private message you. I am currently having 500mg IV steroids for 3 pulses, and have had 2, but with no differences to how I feel. Yesterday the hospital nurse struggled to get a blood pressure from either arm and when she did it was 83 /54, so a wonder I was walking.
Do you have any blood presssure or pulse issues? What TAK issues do you suffer with?
Not so much TAK but almost certainly LVV (large vessel vasculitis) and possibly even cranial GCA for a time as I had jaw claudication and scalp pain.
It's a shame there isn't a way to maintain small group interests on HU - we could on another forum which was really useful. TAK patients really don't have anywhere to go - most are younger than most of us but lots of us do share concerns and problems with you.
I think you are absolutely right though it does seem to me that they are finding more out every time I go to clinic...and I’ve been there a lot recently. Should know more after a meeting that I’ve volunteered for later this year.
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