New vasculitis diagnosis

shez61

I have recently been diagnosed with vasculitis having been previously been treated for spondyloarthropathy (SAPHO/CROMO) for a number of years. It came to a head in February when I had a TIA and had a CT scan which showed the problem with vasculitis in my neck. I have been started on a new treatment plan of Prednisolone 20mg daily, Methotrexate 15mg weekly, and Infliximab infusions. Just really looking to touch base with anyone in a similar position as it’s all a bit scary. Last night I had a weird off balance feeling in my head whilst sitting, it stopped when I closed my eyes and only lasted a minute or so. Thanks in advance for any advice 😊

Ellen

Hi @shez61 welcome to the online community.

You do have a lot going on particularly now with the addition of vasculitis.

I have done a quick search for threads containing the condition:

https://community.versusarthritis.org/search?domain=all_content&query=vasculitis&scope=site&source=community

I'm pretty sure that @Charlestown has a form of vasculitis and she is a regular poster.

I presume you are still in touch with someone about your TIA and getting support with that? I am aware that the Stroke Association also have an online community:

https://www.stroke.org.uk/

I hope you find something of use to you in amongst the threads in the above search and very much hope you'll decide to continue to post here.

Best wishes

Ellen.

stickywicket

Hi @shez61 . You don't say what your symptoms were when you had the TIA but, when I had mine, several years ago, 'off-balance' would perfectly describe the initial bit when I staggered drunkenly (No, no! First thing in the morning😉) into the bedroom where Mr SW grabbed me and sat me on the bed where I mumbled quite incoherently for a while.

In your shoes, I'd contact my GP asap just as a precaution. With my TIA, my GP had the paramedics round in 20 mins. By then I was more coherent and well able to appreciate the delectable young, tall, dark and handsome one!

Do let us know how you get on and good luck.

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shez61

@Charlestown @Ellen @stickywicket Thank you all for your very helpful information and advice. I am my own worst enemy in that I tend to put symptoms down to something else and I know I should be reporting any issues sooner than I have been. I lost power in my right arm in February which only lasted a few minutes and since I had been having neck pain and arm pains particularly when trying to hold my arms up or lifting anything heavy for some considerable time I did nothing at the time. I had appointment with GP a few days after the loss of power episode and she arranged for me to be seen at Stroke Clinic. She did tell me I should go to A & E if anything like this should occur again. However with starting loads of new meds I thought the feeling of inbalance in my head was due to that. I did speak with a Rheumatology Nurse who did not seem unduly concerned though. I think I will take your advice and make a GP appointment just to touch base and get their view. My Rheumatologist did go over my diagnosis during a phone consultation and then followed up with a letter with my treatment plan and did say to contact if any questions. I don’t think I took everything on board during phone consultation as I really didn’t understand what vasculitis actually was. I have found a couple of websites Vasculitis UK and Vasculitis Scotland which are also helpful. Sending my good wishes to you all and will let you how things progress xx

shez61

just to update, I unfortunately had a heart attack straight after my first Infliximab infusion on 19 April. It has taken a few weeks to get my head around this but it seems that the rare type of vasculitis I have, Takayasu artteritis, has most likely been the cause of both the TIA I had in February and the heart attack in April. The vasculitis causes my blood vessels to become inflamed which in turn narrows the arteries. My Rheumatologist thinks I may have had the vasculitis for over 10 years and it has probably been missed due to treatments I was taking for my other diagnoses. I struggle with arm pains, exhaustion after doing very little which makes cardio rehab an issue though I suppose it’s early days and hopefully things will improve with the ongoing treatments.

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shez61

@Charlestown thanks for your comments. I am slowly improving though not able to do a lot before tiredness sets in. I am currently on Methotrexate, Infliximab infusions and Prednisone. I find it difficult to know if some of my symptoms now are from the vasculitis, recovery from heart attack or medication side effects. Glad you’ve managed to get off the Prednisone and cross fingers you are over the worst. Wishing you all the best for your continued recovery. Take care xx

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Gillyb

Hi I’ve had problems since Jan 24 I’ve got osteoarthritis in many places and lower disc problems.
I’m just being investigated for vasculitis as I have a blockage in my main veins in the arms consultant put me on anti platlets and a statin which my GP disagreed with and wouldn’t provide the statin I’ve had every blood test going and my protein electrophoresis was borderline line my inflammation level is 95.
I’ve been referred urgently to a Rheumatologist and another CT scan I too have had that feeling in my head you described a few times now

Consultant says I’m to be on my statins and anti platelets for life but gp won’t give me the statin so consultant has issued another letter to him requesting he does

So waiting for these appointments I’m getting a little scared and so fed up with not getting diagnosed sooner ( 3 GP’s gave different diagnosis)

I hope your doing ok