newly diagnosed and seeking support

[ToeToe3]

Hey,

I got diagnosed last week with vasculitis and I have started meds and I am feeling super overwhelmed and don’t know what to do or how to deal with it.

I’m only 20 years old

[RedPoppy2]

Hello,

I'm so sorry to hear about your diagnosis and that you're struggling with it.

Can I ask what type of vasculitis you have and what your diagnosis journey was like, please? My 21-year-old daughter was diagnosed with IgA vasculitis 7 months ago, but has now tested positive for ANCA. She has been referred to Rheumatology but the waiting list is 6 months and I'm worried that's too long and don't know what to do about it.

I do hope somebody else on here can help you and provide you with the support you need.

Wishing you well!

[ToeToe3 in reply to RedPoppy2]

When I was 18 years old I was meant to go to camp America and needed to have a medical to see that I was fit to work and the results left me in hospital for a week showed I have high blood pressure so I have been on medication since then.

I’m not sure where you are from but I live in London so I have had access to lots of amazing doctors and specialists especially as I am so young.

I have Takayasu vasculitis (TA)

I completely understand it can is very frustrating to feel so helpless and some days I just sit in the dark and try to stay calm and other days I’m bouncy and love spending time with my friends and family.

[RedPoppy2 in reply to ToeToe3]

Thank you for replying.

I'm so sorry to hear that - I really hope your good days enjoying life will outnumber the days when you're feeling anxious and low. I think you have a completely different form of vasculitis to my daughter - hers affects her small blood vessels (mainly stomach and skin problems).

We live close to London (near Croydon), so would have access to the London hospitals. Can I ask if you're under Imperial College (from research that seems to be a good centre)? I would like my daughter to be referred to somewhere that has specialism in vasculitis, as her current medical team don't really seem to know much about it. She is studying in Cardiff, so is under the hospital there, but is reluctant to attend appointments here, as she's in her final year at uni and is worried it will disrupt her studies.

I wish you well and will think of you. xx

[ToeToe3 in reply to RedPoppy2]

Yes I am under imperial college I highly recommend trying to go my specialtist is at Hammersmith hospital and although I don’t live to near it is definitely worth going to see them. Yes me and your daughter have different things but before I spoke to my specialist for big blood vessels I spoke to the small blood vessel specialist.

I completely understand that your daughter doesn’t want to go to see the doctor it is very frustrating having to constantly go to the doctors especially as most people our age get to go out and not have to worry about medication.

I recommend your daughter goes but also if she is final year at university I feel like a few months won’t make too much of a difference but obviously I’m not a doctor

[RedPoppy2 in reply to ToeToe3]

Thanks so much for your reply. It's reassuring to hear from somebody who has experience at Hammersmith, as that's where I think she'd be better being seen. It's hard getting my daughter to take this seriously, as, between flares, she feels well - she takes colchicine, which seems to keep things in check. However, she was actually diagnosed in France (whilst on her year abroad) and the GP here is reluctant to carry on prescribing - it's a worry. Will see how she gets on and, as you say, hopefully she can finish her final year before anything needs to be done.

Wishing you all the best!

[ToeToe3 in reply to RedPoppy2]

It’s easy when you feel fine and is hard to remember that what we deal with is quite serious so I understand both yours and your daughter’s frustration but this is a long term diagnosis and you have to trust that your daughter knows her own body but can also know when to ask for help

[RedPoppy2 in reply to ToeToe3]

Thanks - I feel like my daughter has very much a "head in the sand" mentality at the moment - of course, she doesn't want to accept that she may potentially be quite ill. I am still hopeful that she might still just have IgA Vasculitis, which is supposed to be less serious/self-limiting, but the new presence of ANCA is worrying. She also doesn't like to push/make a nuisance of herself - we've had years' of GPs not taking her seriously - saying the tiredness/exhaustion is just anaemia; the aching legs is just growing pains; the stomach ache is just constipation; the strange fevers are nothing to be worried about etc, without ever looking at the bigger picture - so she feels embarrassed saying she doesn't feel well now

[ToeToe3 in reply to RedPoppy2]

As her mother you sometimes need to force her to do stuff such as go to the doctor and get the help she needs and you need to explain to her that it’s okay to not feel okay all the time as although she may of not found the right doctors there are still people who can help

[RedPoppy2 in reply to ToeToe3]

Yes - my daughter is stubborn as a mule, though. This is a constant battle between us - there is almost daily nagging at the moment (trying to get her to get a copy of her health record from the GP, so we can see exactly what's been said!) Although she is an adult, she will always be my "little girl" and I will always push for what I think is best for her (and now I sound like an overbearing nightmare! ).

[ToeToe3 in reply to RedPoppy2]

Well then maybe it’s time for a different approach maybe trying sitting down with her discuss or help her right an email to the doctor

[RedPoppy2 in reply to ToeToe3]

That's a good suggestion, thank you! Thanks for taking the time to chat with me today. I realise you posted seeking help for yourself and all you've achieved is helping me, so I hope somebody that's better placed to support you will reply/get in touch. Best wishes.

[ToeToe3 in reply to RedPoppy2]

I actually feel better just discussing with someone if you need anything then please feel free to ask and I hope your daughter gets the help she needs

[RedPoppy2 in reply to ToeToe3]

Thanks so much - I'll definitely be in touch, if I have any more questions because you've been really helpful (it's been good to hear things from the perspective of another young person, to hopefully better understand my daughter). Likewise, you can contact me anytime - although I'm not much help and always happy to listen/have somebody vent!

[PreetyK]

Hi ToeToe3,

Sorry to hear that you have been diagnosed with Vasculitis at a very young age. From my experience keep a diary of symptoms on daily basis and a date wise tab on the medicines you took in the day. Lots of the medicines in Vasculitis are adjusted to the required doses and you may need to add or reduce some medicines depending on your symptoms as you move forward. Do read up on all the medical pamphlet they send you for deciding on medicine option - learn their side effects. Once you get specialised medicine it takes a while to kick in about 2-3 months. Rest, healthy food whenever possible, medicines and positivity are best healers for any vasculitis patient. Don't feel guilty if you cant do certain chores. But don't get scared of trying things and learning the new boundaries that your immune system has created for you. If the body hurts, stop and rest. Ask for help if you need. Wishing you well.

[ToeToe3 in reply to PreetyK]

Thank you so much much I will definitely look into it. The doctor has basically just put me onto a massive dosage of medication added on top of all my medications that I was already taking for high blood pressure so it’s a lot so I’m just trying to get my footing but it has help hearing from you thank you

[PreetyK in reply to ToeToe3]

I understand. Sometimes all the aggressive approach of the medicines can be scary. I had lots of issues at the same time which resulted in a list of medicines, different times of day and change of dosages after certain number of days. So keeping a tab on my medicine intake with diary worked fine for me. It also helped me when different consultants would query me on the combination of medicines I took and when a certain symptom started first and when it recurred. Hope this helps you in some way. Stay positive....

[ToeToe3 in reply to PreetyK]

I definitely need to start keeping better tabs so this is very helpful thank you so much

Also how do you organise all of the different meds as I currently have the pill holder but this is not necessarily the best option

[May7 in reply to ToeToe3]

Hello ToeToe3,I use an app called Pill Reminder & Tablet Tracker, downloaded from Google play.

You list all your regular medications, together with the doses and an image and then fill in details about how often and what times to take them. They then appear as a daily list, and you tick them off when you take them, being able to put the actual time in if late and you need to. You can also list other meds that you occasionally take, and then record them As Needed. There are facilities for putting which doctor prescribed them, and other information if you want to. I have been using this app for several years and find it very useful to keep track of my ever increasing number of medications, whether pills, capsules, inhalers, drops etc. At the last count I have to take something twenty four times a day, these wretched things dominate my life, so the app is very useful.

There are, of course, several such apps to try out before you choose. I do hope you find something that helps you.

[Mooka]

I’m so sorry to hear your diagnosis. Have you look at the vasculitis U.K. website? It’s a mine of information and you will find numbers for their helpline and details of any support meetings near you. Treatment for vasculitis is improving all the time and hopefully you will have the full benefit of that. In the meantime be kind to yourself. Take plenty of rest and pace yourself. Do let us know how you’re getting on and ask any questions you think someone may be able to help with.

[ToeToe3 in reply to Mooka]

I have looked at the vasculitis website and it has definitely been somewhat useful however personally I have definitely benefited from reading others struggles on hear to know that all my side effects are normal on these meds and that I’m not the only person with this condition

[Mooka in reply to ToeToe3]

I read a book years ago called sick and tired of being sick and tired. I think the young lady who wrote it had TA. I think she was in USA so the meds and health system are different and things have moved on since then. It’s by Sheri Lyn Schwar. It maybe of interest to you. You have a good attitude knowledge is power of this disease.

[ToeToe3 in reply to Mooka]

I have heard of this book I will definitely need to give it a read thank you

[emmachamberlain]

I’m 34 years old. It’s really scary and little information given. What type do you have? If you know? Also have you spoke with Vasculitis UK they are very helpful. Sorry to hear you’re going through this!! It’s been a hard journey for me x

[ToeToe3 in reply to emmachamberlain]

Speaking to them is the way that I found this forum and honestly really helps when reading through others experiences makes me feel more “normal”

[RiviS7]

Hi ToeToeMy journey is different from yours as I am at a later stage of life but I have recently been diagnosed with Takayasus arteritis. I have high blood pressure too and have had that since mid 20"s. I'm very sorry you are dealing with this disease at such a young age and I hope things will get better and easier for you down the road. I find such good support on here and that is so important as people who do not have vasculitis have a hard time understanding how life altering this condition is. You need people you can open up to and share your fears and questions with. If you put Takayasus arteritis in the search box on the sight you will find posts from people who have TAK. That has helped me too.

[ToeToe3 in reply to RiviS7]

That’s really good to know that thank you. It is so frustrating trying to explain to people how this feels especially as you can’t see what is happening to the body