Coping with a vasculitis relapse: I wanted to... - Vasculitis UK

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Coping with a vasculitis relapse


I wanted to write a bit about coping with a vasculitis disease relapse. This is prompted by a post earlier today in the CNS/cerebral vasculitis Facebook group. I’ve dealt with this myself. Fell ill in 1994 aged 22, diagnosed with cerebral vasculitis in 1997. Stabilised with initial treatment. Then relapsed badly in 2004. I’m still here, 14 years after that relapse :)

Relapse is common in vasculitis patients, particularly certain kinds of the disease, including the 1 in a million form I have. It’s something patients don’t often talk about though, something taboo. It’s understandable. It can be such a struggle to deal with the initial onset of the disease, and stabilise it, hopefully going into remission. Who wants to think it might come back? But it can and often does, and I think it helps if we can be at least prepared for that.

If it relapses in a big way - and here I mean more than a short temporary flare or limited increase in symptoms - normally the relapse symptom pattern is like the first onset of your disease. In my case in 2004 I went from relatively well to suddenly losing control of my legs and arms, agonising headaches, and weakness on one side that I’d fall over to. Very stroke-like, very sudden, very dramatic, and no it didn’t resolve in a few days.

Obviously you should go to the doctors fast, and your vasculitis consultant should be involved quickly. My GP phoned my consultant, to ask what initial treatment changes to make, while they investigated through more brain scans etc. We raised the steroids considerably, and I was booked in to see my consultant in hospital quickly.

But what I want to say is there are lots of treatment options at this point. They can include repeating Cyclophsphamide (Cytoxan in US) chemotherapy, or Ritxumab (Rituxan in US). Or using other immunosuppressive agents at increased doses, like steroids, Methotrexate, Mycophenolate Mofetil (=Cellcept) and Azathioprine. Basically yes, there are lots the medics can do. And there is no obvious reason why this treatment shouldn’t be successful.

Coping with a relapse can be much harder emotionally than physically. It’s a horrible shock, even if you’d considered it might happen. But your prognosis can be good. So don’t be scared.

I wish this was an aspect of vasculitis that patients talked about more. Again I feel it’s rather taboo. But having gone through it myself, I know that it can be dealt with, and treated successfully. So if it happens to you, please have hope. Yes be rational and calm, and realistic, but don’t automatically think the worst. Just take it one step at a time.

15 Replies

Thanks for posting this. I have GPA (PR3 ANCA) and I'm only beginning to understand the relapse/remission cycle, as there has been so much difficulty getting my disease under control since I was diagnosed in January 2017. They haven't managed it yet, but I'm beginning to see how things slowly settle as the rituximab starts to work, and then build up again as the rituximab wears off. In the midst of this I try to understand what's happening: are my symptoms side effects or indications of the disease? It makes me feel very anxious.

I have lost all hope of remission, but the people treating me hold onto hope for me: they repeatedly tell me it's going to happen. I am grateful for that. I can imagine how the fear of relapse lurks in good times: I have such vivid memories of what happened before I was diagnosed, but I tell myself that will never happen again because they know what they're dealing with now.

It would be interesting and very helpful to know how other people manage the fears and worries associated with the relapse/remission cycle.

Yes, we thank you for speaking out. It is important to address the emotional aspects of our conditions as well as the pure medical and that is what you are doing. Wonderful.

I am still struggling with getting my GCV under control but right now I’d settle for a low dose of steroids. Funny how our bench mark changes. After losing most of my hearing and sight on one side...and yes, most has returned...I am grateful and patient. This is a long road and looking back I see I’ve struggled with GCV long before I was diagnosed. We are lucky to have the options that are available to us today I suppose our part is to give them a chance to take effect.

Good luck to you all.

Very interesting topic. My son - only 13 now - has MPA diagnosted in march 2017 (I have already written several times here and so I think you can recognize me). After a year and a half of treatments and complications, etc., today he is good (even if he takes MMF, Ramipril and very few cortisone - 2.5 daily). The prospect is also remove the immunosuppressant. During the last meeting the doctor said many things, but the phrases that struck me the most are "we sail to sight" "enjoy this period" "a girl has been in remission for 12 years and a boy for 8 months" " there is no prevention "

I realized that sooner or later something will happen again and live with this thought makes me feel sometimes sad and worried. I can not be fully happy even if the treatments have been successful and things are going well now.

I think you understand me more than the doctors who are enthusiastic and tell me that I should be enthusiastic too about the results, (even if my son has a kidney failure on the second level - sigh!!)

I wonder: has anyone lived with vasculitis and without relapses?

How many years will pass before having a cure?

I'm afraid also for the effects of the treatment.

But when I call him after school and I hear his voice happy and energic I think we are also lucky because there are tretaments for vasculitis.

I am grateful for this site and the opportunity to talk about this disease

Sorry for my english: we live in Italy.

have a good day

cinzia and lorenzo

Hi, thanks for this. It would also be really helpful if others posted experiences of relapse.

Thanks Viv...I just read your article today in Vasculitis UK. I am meant to have large vessel vasculitis (5 years ago) but not sure quite what....probably GCA but not affecting the temporal arteries...just aorta and carotids. (Ive been off steroids for 2 1/2 years)However, I had confusion and lack of concentration at the beginning and new "migraine" symptoms. The rheumatologist suggested getting a cerebral MRI and I just had it repeated this year. There has been a significant increase in abnormal white areas.. described as microangiopathy. Gone in 4 years from a few spots to "moderate" affecting deep in the brain tissue. I was started on hydroxychloroquine...which clearly hasnt stopped the progression but nothing else has been suggested and I dont know what to do. I am not as bad as many.. I havent had strokes or incontinence but dont want this to get worse and worse. I'd be grateful for anyones opinion.

in reply to roshough

I've just replied to your post :)

Totally agree with you i have ANCA Vasculitis which left me with Stage 3/4 CKD and i had a relapse some 18 months ago and its hard to deal with in respect in my case i had a Plasma Exchange then 5 months of Cyclo.and then Azothioprine but then a relapse which does knock the stuffing out of you but they gave me Rituximab and managed to get me back into remission and been ok so far.But i do think it needs to be talked about more.

I’m still under observation for a firm diagnosis, I’ve been put on colchicine for now... please see my other posts for how it all began as it’s a lot of writing.. (sorry but today is not a good day I seem to be in a “having symptoms of a flare that’s starting the 3rd week).

Has any of you been put on colchicine as a first line of trial medication for vasculitis?

I’m seeing some changes for the good. For instance I used to have itchy skin (like a all up into my legs) as I walked for long distances (No longer there) I use to Ache during cold weather and rainy weather (no longer) I use to ache and feel tight in my joints in the morning (getting better) I had the follicles nodules on my face and in my hair (getting better) mouth ulcers (getting better).

I’ve also made some dietary changes (no dairy, sugar, gluten) yes I have some cheat moments but I get back on it.

I have these flare in my “head and tummy” ( neurologist has mentioned “cranial nerves flare”) The gastrointestinal Doctor is little stumped as he can’t do the CT enterograpphy as I’m allergic to iodine. Next option is a MRI with contrast and I’ve had a reaction to that contrast.

I’m just trying to understand what doctors have mentioned I could have.

It’s also been mentioned Bechet’s.

Any input would be much appreciated.

Everyone has been so kind and supportive on here.

Thank you!

in reply to Frustrated2

I started on colchicine while being investigated. It was amazing, I had just had a really bad attack vomiting a few times a day so much pain . I have not had a bad attack since that was a year ago . I still feel unwell but l can manage this amount of pain . I have since been diagnosed with MUCS which was a shock . I have had medication added to the colchicine since then , but l think the colchicine has been my life saver .

Very reassuring and optimistic post; You are right; subconsciously we think if we don't talk about the chances of relapse and prepare for it, we think it will not happen again. ...the head in sand of denial.

Thank you for that answer, that put a few things at rest as it not me how struggles with relapes, can deal with it but as you say emotionally it very hard wearing

I have GPA- initial flare October 2016. Leg ulcers & some on my arms & butt. I was diagnosed January 2017 while in hospital for infection. All my labs were normal - biopsies of my leg ulcers showed HSV- whenever I tapered to below 40 mg of prednisone I got more lesions. A piece of cartilage fell out out of my nose, I have a perforated septum & that’s how they concluded what I had. I had chronic sinus & ear infections & bronchitis for many years prior. I have flared several times in the last year & don’t consider myself in remission. My Rheumatatologist increases my prednisone then tapers but it is so aggravating! I am on 100 mg aziothropine & 15 mg methotrexate weekly.

It’s now been 20 yrs since being diagnosed with Cerebral Vasculitis and after not working due to the disease and medications and then coming down with another problem cancer, which has nothing to do with the Vasculitis but I feel I’m on my way to having a relapse. I’ve recently had a few seizures and I’m having that aura feeling more often where you feel like another one’s on the way, but I just sit down and take it easy and it eventually disappears. So after few more seizures and aura’s I’ll be on my way back to the Neurologist to see what can be done, so please let it be just an MRI and back to a few and not all the meds and all will be OK.

in reply to phil3

Good luck with the appointment

Ok, so I am probably having a mild flare, perhaps in response to dropping prednisone too far too quick and/or just not having my EGPA under control as we thought. Since the first 4 rounds of rituximab, I was improving slowly. I began feeling very very fatigued about 7-8 months later, rheumy decides one more round of maintenance rituximab, then immediately drops my prednisone from15mg to 10mg. I also take azathioprine. But rather quickly after this I notice more symptoms creeping back, more pain zaps in my left leg and foot, which is the weaker one, more swelling and peripheral numbness in feet and legs, more fatigue, more weakness. Last set of labs backed up feeling like crap by showing my eosinophils and platelets climbing back up. Rheumy thinks this is just a reaction to spring pollen, which used to affect me terribly in the past, but since they put me on fluticasone nasal spray (steroid) daily- and I'm on constant prednisone - I never have problems with upper respiratory in spring anymore. But- maybe my eosinophils rise each spring season, I relapsed last spring too-- that one prompted the 4 rounds of rituximab in the first place.

Prednisone is BACK up to 15mg, azathioprine increased to 125mg, gabapentin reduced to 200mg ( to mitigate dizziness side effects). Talk about 2 steps forward and one step back, or is it 2 steps back?

So now I'm supposed to see her again in 6 weeks and get another set of labs run the week before that. I know I should be patient, but I still feel like crap and I seem to spend 18 hours a day asleep or running on a bizarre 30 hour wake/sleep schedule.

I just feel like I'm stuck in the Groundhog Day effect and repeating fruitless actions to try and change something, anything... is this a relapse, or is this just Spring ?

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