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Addenbrooke’s Vasculitis Clinic

Hi everyone,

I was just wondering if anyone has been to the Vasculitis Clinic at Addenbrooke’s Hospital?

I’ve been referred by my GP after the advice I got from here (thank you!) after a really bad appointment with a rheumatologist at my local hospital.

I’m trying to get as organised as I can as my appointment is this Tuesday coming up, but it feels exhausting having to go through everything again. I just hope they can help me this time!

Unfortunately I have to go alone as it’s too short notice for any friends or family to come and I’m planning on driving to Trumpington park and ride. Because it’s a journey I’ve not made before I feel very anxious about making the journey alone.

Still searching for answers, let’s hope this is start of getting somewhere!

Sophie x

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Hi Makimon,

I'm sure you'll get some very helpful comments on here because I know a few people are patients of this clinic - Barnclown comes to mind first.

Good luck with the appointment. Let us know how you get on. If you need any extra tips on preparing for the appointment, you may be interested in our blog article here - lupusuk.org.uk/getting-the-...

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Hi Paul,

Thank you so much, after your advice I was able to ask my doctor to refer me there. I will have a look at the link and hopefully get some tips on how to prepare myself! I was also able to get my pharmacy to change my Hydroxychloroquine to Zentiva, so thanks again for all of your help.

Sophie

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Hi Makimon I am a frequent patient of this department at Addenbrookes, and my experience and impression of them is outstanding. Do you have a clinic number? If it is clinic 5, head for the outpatient dept, when you enter on your left you will see a desk for patient transport, and there is always a Volunteer around to guide you, you are on the right level for Clinic 5 at Outpatients, and ahead is the lovely cafe, and to the left of that, Clinic 5.

A top tip, I would avoid the Trumpington Park and Ride, traffic is so heavy, so my experience of the bus is one word, slow. If you can get to Babraham Park and Ride, it is literally only 10 mins from the hospital, less traffic. £2.50 to Addenbrookes, the bus station is literally only 2 min walk to Outpatients.

On the return, go back to the bus station, and look for bus stop C, it will list times of next bus to Babraham Road Park and Ride, usually every 10 minutes, traffic permitting.

google.co.uk/maps/place/Bab...

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Hi Karen, thank you for your reply. I just had a look on my letter and I’m Clinic 12, would that still mean it’s the same team who will see me? Also thanks for the reassurance, I’m really hoping that I’ll get some answers as this team sound really good. I’m driving up from Essex so I’m expecting to hit the traffic on the M11, my appointment is at 11.15am but I aim to be there much earlier incase of traffic and so I can get my bearings. I will check out Babraham Road Park and Ride. Xx

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I can’t offer any advice on your journey

But wanted to wish you all the best on your appointment. It’s so frustrating not getting the answers you need , but fingers crossed this will be the right place for you.

Please let us know how you get on

Xx

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Thank you so much for your reply! I am really hoping they are as good as they sound! I will update you all on my experience there next week :o)

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Hello Makimon

I see some reference to vasculitis. Would you mind explaining some of your symptoms for me? I’ve no diagnosis at this time and am very open to posible illnesses. I’ve read abit about vasculitis on this site. I generally get a burning rash which just affected my face, but has now spread to my hands, feet & legs. I get extremely fatigued before the rash appears. My hands become quite stiff to move. There are many other symptoms but I would be here all day listing them.

Lisa xx

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Hi Lisa,

I’m not too sure what is wrong with me as I don’t have a diagnosis either. The Vasculitis team at Addenbrooke’s from what I understand look at many autoimmune diseases. It has been suggested that I have possible lupus but no solid diagnosis yet. I get the malar face rash, headaches/migraines, flu like symptoms, joint and muscle pain, nausea, IBS type symptoms plus many more. I have been diagnosed with Fibromyalgia and ME in the past but because of some of my blood work they are now thinking I have something else autoimmune. I hope you find some answers soon and always here for a chat if you need it! X

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I wish you all the very best Makimon. I am sorry that I have no knowledge of the travelling aspect but I do understand your journey in "searching for answers". LupusKaren has great advice for you. I hope things go as well as possible & I will be hoping to hear how you managed. I certainly hope you get some answers X Pixiewixie

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Thank you so much, I hope so too. We all seem to be on the same searching for answers journey! I will let you all know how it goes :o) x

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Hello, I had an appointment with them a few weeks ago and it was amazing, the rheumatologist was so kind and approachable and exceptionally thorough. I ended up being there over an hour and a half and she went through every organ system and every problem I’d ever had related to the lupus. I’ve had lupus a long time and have quite a deep knowledge but she explained things using really clear analogies that I could then use to explain to friends and families who hadn’t understood before. My favourite was about dying cell/ germ clearance by using analogies of rubbish collection trucks and binmen and that I’d been born without the truck so my binmen struggled to clear all my rubbish so were understandably exhausted and sometimes my body would be overwhelmed by the rubbish building up with no efficient rubbish collection system!

Do you know who you’re seeing? I think they don’t specify on the letter - my letter just said ‘a member of the vasculitis/ rheumatology team.

In preparation I’d write down all your symptoms in date order. She wanted to go back to my childhood and every illness I’d had (even things like measles) every lupus flare up and what part it had effected. It was very thorough but I hadn’t written it down and got in a bit of a muddle with dates and kept jumping around with past and present and she had to keep reminding me to stay on track so writing it down would definitely help. Also any positive blood tests or any other tests you’ve had a GPs etc.

I work at Addenbrookes and will be there that day so I’ll message you my number in case you need help/ get stuck at trumpington (you shouldn’t get stuck bus wise as it’s a very efficient system and not too busy if you’re not arriving at rush hour).

Good luck! I’m sure this department will have some answers for you.

X

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Thank you so much for your reply and support!

I don’t know who I’m seeing, you’re right it just says a member of the Vasculitis/Rheumatology team! I do hope they are as helpful to me as they were with you! Sounds like they really helped you and went through things thoroughly with you.

I’ve got some notes I’ve used from previous appointments with my local rheumatologist but I will make sure they are more detailed and I’ll try to describe things a bit more. Got my fingers crossed I get some answers.

That is so kind of you! That really is such a nice thing for you to offer, and puts my mind at ease! I will reply to your inbox message.

Thanks again! X

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Hi everyone, sorry for replying so late. I’ve had a really busy week trying to organise my wedding reception which is on the 5th May! We got back 2 weeks today from our wedding and honeymoon so it’s been a shock to the system going back into wedding mode!

My appointment on Tuesday went really well. I was very early for my appointment which is good, but in total I probably waited for 2 hours to be seen which was quite uncomfortable. I’m glad I brought a book with me!

I saw a really nice doctor who was respectful, listened to me and asked lots of questions. Unfortunately because I’m usually seen at my local hospital, they didn’t have any of my blood work results or previous rheumatology letters. I had copies of the letters on me but not of my blood work. She said because it was my initial appointment it would be hard to come to any conclusions especially without the back up of blood results so she ordered a whole lot to be done after I saw her and also an X-ray on my knee as it’s been really painful. She said at this stage it looks like I have an autoimmune disease that responds to steroids. Which I knew already but was happy she was kind and didn’t dismiss me. I told her that even if I didn’t have a label, all I wanted was a clear treatment plan for my GP to follow when I have flare ups and some other options of treatments and she was in agreement. She did mention 2 other drugs I could try which I think is probably a step up from the Hydroxychloroquine I’ve been taking since October of last year. One was called Mycophenolate and the other Methotrexate.

After my appointment I went off and had all my bloods done, I think they took about 6 tubes! And then went to have my knee X-ray then met up with my friend for lunch.

All in all it was a very positive experience. I have another appointment in June so I don’t have to wait too long to be see again.

Thanks for all of your advice and help.

Have a good weekend,

Sophie x

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