New to vasculitis

[Twin7]

Hi there from Canada looking for advice as newly diagnosed with systemic anca vasculitis at 52 yrs young. Lonely journey with little to no direction from doctors as rare. Start 1st cyclophosphamide Iv therapy in 2 days and on prednisone 60 mg daily. Advice? Tips?

[Grizzly-bear]

I’m on a different treatment plan though I did have one cyclophosphamide infusion. Made me a bit queezy but it passed quite quickly.

I’m relatively new to it (diagnosed in August last year) but I’d say to monitor your symptoms and make sure they’re monitoring your bloods. Cyclophosphamide works well for most but if it doesn’t then there are lots of other treatment options available.

I’m still learning myself. Currently having joint pain and wondering whether it’s due to being sat at my desk for too long or whether I’m having a relapse! Hoping it’ll get easier to work out. Getting bloods done in a week so hoping they’ll show anything out of the ordinary.

This group is really great if you have any specific questions along the way of feel unsure about anything. Lots of different experiences and people able to offer advice.

Good luck with your treatment! Pretty unpleasant thing to have but treatment seems to keep most people in check!

[Twin7 in reply to Grizzly-bear]

Thanks for your kind support. This has been life changing for me and it’s good to know I’m not alone. Hard to know what are symptoms and what are med side effects.

[Grizzly-bear in reply to Twin7]

It is life changing, but you do adapt and find a way of living, even if a bit differently to before. Take care as you’ll be immune suppressed. If you can get Evusheld after you’ve had your treatment then it’s worth doing so. We can’t get it in the U.K. but going to get in queue if I can.

[nicholson27]

Hello, I was diagnosed with systemic ANCA associated vasculitis (specifically Wegeners granulomatosis or GPA) in 2017 aged 47. It is now 5 years later and I am in remission thanks to the excellent team at Addenbrookes hospital in Cambridge, England.My initial treatments included cyclophosphamide infusions over about a year or so along with high doses of prednisolone same as you are on. The cyclophosphamide is an aggressive drug that it used to get the condition under control and while it’s not very nice, they generally use lower doses that for cancer patients so I found it not too bad. They will usually give you an anti sickness drug and make sure to drink gallons of water as it’s very important flush the drug through your system. In total I had 16 of these infusions.

Prednisolone is also not a nice drug but as vasculitis is inflammation of the blood vessels and prednisolone in a steroid that treats inflammation, it is very necessary. The problem with the drug is the wide range of side effects associated with prolonged high doses such as Cushing syndrome. It can also cause cataracts as it did with me. Your doctors should put you on a tapering down program to get you off the drug as soon as the condition allows so be sure to follow this and although it is hard, try to get off the steroids as soon as you safely can.

The other and very important drug that they use to treat my condition is Rituximab. This is also an IV infusion and it was started early on in combination with the cyclophosphamide and continued on after cyclophosphamide had done it’s work and is now the main treatment drug. I still have an annual treatment with Rituximab as it keeps the disease at bay. It works by limiting your bodies ability to produce the blood cells that cause inflammation thus limiting the extent of the disease. An unfortunate side effect of all of these drugs is that they cause immunosuppression which is not good especially these days with covid around. My immune system got so low that I now have to give myself 3 subcutaneous infusions of human immunoglobulin per week and will have to do so for life to counteract the effect of the Rituximab which is necessary to keep the disease at bay.

As you can probably see, the treatments are all a balance act between treating the disease and limiting the negative effects of the drugs used.

I know it’s very scary and it will be a long journey but the trick is to just deal with it a day at a time. In my case the disease was very difficult get under control and did a lot of damage which I haven’t mentioned. Others don’t have it as bad and are able to get into remission earlier with less long term effects so keep your fingers crossed.

The other thing that I quickly found is that most medical people (other than those at Addenbrookes Hospital) had not heard of my disease so don’t rely on their advice. Doctors seem to suffer from the affliction that they can’t say the words “I don’t know” and will try to give advice even though they don’t know much about the condition which could have negative consequences. The best thing you can do is read every piece of information you can find about your disease, the drugs they are using to treat it and the side effects. Forewarned is very much forearmed as they say.

I hope my post has been of some use to you and feel free to ask if you think I can answer anything you are unsure about but above all stay positive and be prepared to dig in and fight. With the right treatment life goes on and you will have many years of enjoyment ahead of you once this present set back is under control.

Good luck to you.

[Twin7 in reply to nicholson27]

Thank you for your kind words . They are very helpful. Off to have 2nd cataract surgery today with iv treatment tomorrow. Fingers crossed all goes well.

[Mooka]

I can see you are in Canada but this is a great source of information about vasculitis, blood tests and treatments. I’m sure some of the names will be different but you will get the drift. vasculitis.org.uk/

Other than that come back her and ask your questions. You aren’t alone although most people around you won’t have heard of vasculitis and won’t understand what you are going through. Looking back I wish someone had told me to pace myself especially while going through treatment. Stick with it there is light at the end of the tunnel. Best wishes.

[Twin7 in reply to Mooka]

Thank you. It is hard trying to sort out what is happening. Symptoms versus side effects of the meds. Prednisone 60 mg and cyclophosmamide (on pills switching to infusion 1x per month)

[Mooka in reply to Twin7]

It is difficult to know. The prednisone dose will be reduced as you go along. Sadly it has a lot of side effects but is great at what it does. I'm sure you will be reducing your dose soon.

[Twin7 in reply to Mooka]

Thanks. It’s a hard life changing road to be on and even harder with no answers or direction. This is my only link to anyone with this disease.

[Mooka in reply to Twin7]

It is tough but you will get through it and life will be almost normal again. I’m sorry you don’t have much info there but we’ve all been where you and so understand how your feeling. You may have to get your elbows out on route and be a bit proactive getting your appointments but you even get used to that.

[Twin7 in reply to Mooka]

Hard was fairly healthy before this and now can’t work or enjoy hobbies. Meds expensive here too. Staying positive is hard but knowing others have this helps. Systemic anca.

[Investigator1]

Hi Twin7, same as you kiddo, welcome to your new life. I like you had rising ANCA levels, off the scale as my consultant put it which was 177+ now it’s 6.1. I had 4 blasts of Cyclophosphomide, it is aggressive but not too much trouble really. Then of course come the steroids, they did affect me a little but after making some minor adjustments like cutting the Carbs right down and trying to exercise when I could (motivation was an issue) my life was a lot nearer to normal than I expected. Journey has begun,but of course you will be a lot better person when you come out of it ANCA lot more knowledgable too. Don’t fight it, try and accept it. It makes your life a lot easier. Take care. Nick

[Twin7 in reply to Investigator1]

Guess I’m lucky to know what my fight is. Hard to come to terms with though as I was healthier before diagnosis and life has now changed. This forum is my only link to any information on vasculitis I can find.

[Investigator1]

Don’t worry! You will find your life will be the norm. I can honestly say and it’s a personal view of course that apart from a few bumps in the road I feel as healthy as I did before taking into account I am 3 years older and that is from age 58-61 which can make a difference.

[GPAC]

Hello Twin 7,

Sorry to hear of your GPA diagnosis, but it sounds like you are on first leg of your journey to recovery. You are probably a bit overwhelmed which is normal, and you are searching for support and answers which is again all normal.

In Canada, there is very helpful patient information and patient tools online at vasculitis.ca. For GPA you should absolutely read the content located here: vasculitis.ca/wp-content/up... This will give you a wealth of information to help you understand GPA, the treatment, side effects and even a lab tracking sheet as a PDF, and in Excel, so you can track your progress.

In addition, you can read a general info brochure located here: vasculitis.ca/wp-content/up... In this brochure is a list of Canadian vasculitis centres and you should consider getting a referral to Dr. Natasha Dehghan at the Vancouver centre if you are not already seeing her.

Also in Canada, there is a GPA/MPA ZOOM-in meeting with other patients and the next one will be Saturday, August 6th at noon ET and you can email [e-mail] to get on the zoom list. The ZOOM host (myself), is a GPA patient for 27 years.

Good luck and keep in touch.

[GPAC]

One other thing Twin 7, in a long list! Someone else mentioned getting Evusheld and yes you should ask your Doc about this asap as you are on high does prednisone, and Cyc, which makes you at high risk should you get COVID, and in BC that should make you eligible for Evusheld. In the meantime take extra precaution, i.e. N95 masking indoors etc., and avoid any infections especially COVID.

[eh66]

I am 55 and I was diagnosed Jan 2020. I am currently in remission. I can relate to a lot of what nicholson27 says and have a pretty similar journey. I would say Preds are good at helping you get back on track but I found they gave me a massive hunger craving and was glad to get off them. Not all people can. I hope you don't have any organ damage.I currently try to boost my supressed immune system to fight off Covid and other nasties. I do this by trying to keep as fit as my body will allow, and eating plenty of fresh fruit, vegetables (I still love steak)and roughage daily plus fermented food like natural yogurt, saurkraut etc. I try to aim for about 30 different things per week. Take a look at the writings of people like Prof Tim Spector and Dr William Li. Good luck

[Twin7 in reply to eh66]

Thanks I appreciate the advice. And will do my homework. Any tips for hospital trip would be lovely as infusion is in morning.

[eh66]

Take a couple of good books, and your phone and charger if you're allowed them. I usually take some sweets/candies too. It usually last about 6-8 hours. I also take my slippers for bathroom visits - easier than taking shoes on and off.

[Twin7 in reply to eh66]

Thanks much appreciated.