Vasculitis UK

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Coping Strategies for Waiting to be Seen

Hi all,

I was diagnosed with granulomatosis with polyangiitis (GPA) last month after 6 months of testing / vasculitis being suspected and am waiting to be seen by rheumatology to start immunosuppressive treatment.

Those of you who were not in hospital when you were treated by rheumatology for vasculitis, how long did you wait and how did you cope in the meantime?

I understand that in its current state the GPA is not life threatening for me but it is now 7 months on (and 2 years after I was very ill and in hospital with what they now think was actually a vasculitis flare) and I am finding all of the waiting a bit frustrating. I was planning on changing jobs and moving this year but that has all had to been put on hold until I start treatment). I also keep developing flu like illnesses every couple of months which completely knock me out. Is this normal / a common experience before treatment?

I'm 24 and work full time.

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32 Replies

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Are you being seen at a specialist centre. Call the helpline and check. The sooner you are treated the less likely are long term complications. I would go to a specialist centre asap.

Hi Amy, I'm waiting to be a seen at the specialist centre at Guy's in London but the waiting time for an appointment (for new patients) is 6 - 8 weeks

Phone and ask to be put on the waiting list for a cancellation.

I did and the earliest they can fit me in is the 29th of November, but at least I have an appointment date now at this point I guess another month and a half doesn't make a lot of difference

Hi Amy...I was diagnosed last year with GPA too after having episodes of infections and joint pain and general fatigue for quite a while, however once my Doctor realised what the blood spots on my hands were, I was referred quickly to Rhuematology at hospital ( same day ) and then diagnosed and treated quickly.

However, I have learnt that you need to keep asking the questions and pushing to get seen or have treatment.

I think I am lucky, I have a specialist centre in Manchester and a VERY good Consultant locally, but you need to keep pushing the Doctors to help especially at GP level......if you are having symptoms, you need to be seen quickly and get treatment to suppress......

Call the helpline too- they have experience of our disease and lots of information to give you...

Good luck......!

Hi- Sorry to bother you but you mention blood spots on your hand- could you please describe in more detail how they look. I ask because I have them most of the time and am always told its thin skin and made worse by steroids I am taking. I think its vasculitis- the veins under the skin burst and then the blood is dispersed underneath. I don't think my GP or consultant really know. I am on methotrexate only as they class my vasculitis as low level. My symptons however continue. Thank you.

They started like small red spots and then grew in size and then raised - not painful - I would say they looked a bit like you would imagine a witches (😁!) hands would look - a bit like a big blood blister - hope this helps you to get treatment soon....

I'm glad your GPA was picked up quickly How are things for you now? It sounds like you have a good team of specialists working with you.

I think I've just had a lot of bad luck. My first ANCA and ANA tests were run as a bit of an afterthought, to be honest, and I don't think any of the doctors expected them both to come back positive. After reviewing my medical history they called me in immediately for some CT scans and it's all gone from there, really.

In the meantime, I have gone "full Monica" (from Friends) and filed and categorised all of my medical records with notes on which questions I asked and what the responses were, any follow up actions etc. I think for multidisciplinary conditions like vasculitis, unfortunately, you have to become your own medical secretary which can be draining but is worth it in the end as you're the one with the condition.

Yep, I have found some GPs to be more helpful than others but I understand for most of them vasculitis was a lecture or two in medical school or in their clinical training so I appreciate it's difficult for them too. I saw the Lauren Currie Twilight Foundation is working with the RCGP (Royal College of General Practitioners) to develop some vasculitis training modules for GPs so hopefully, that will help in the future. (FYI: thelaurencurrietwilightfoun...)

I called the helpline and spoke to John before - he was very helpful.

Thanks Mainly it's just nice to know that I'm not the only one!

That’s great to hear you are doing exactly the same as me - keeping records, responses , noting symptoms etc - !!! Well done and yes, it’s good to know we are not alone and it’s good to share and talk to others - stay positive - it helps ...! 👍😁

I wasn't in hospital when I got diagnosed with GPA but I did have organ damage, so treatment happened quickly. It is very frustrating waiting: in an emergency the NHS is amazing. Otherwise I've found it's important to find out who can give you useful info and get things moving. The secretaries/admin and specialist nurses are great for this. I haven't been able to plan anything much for some time because of my GPA so I've put all big plans on hold but enjoy doing very spontaneous things. This has helped my friends and family understand what I'm dealing with and support me in very practical ways. Good luck and I hope you get seen soon.

Hi ZiggyDiego,

Thank you for your reply.

I'm glad that they sorted your treatment quickly. I totally agree, the NHS is brilliant when you get to see someone but the waiting times can seem torturous sometimes if you don't have a life threatening condition. Yep, definitely! I hope things have improved for you since you started treatment I'm glad your friends and family are understanding... I'm working on mine lol. Thank you, I'm hopeful that when I'm finally seen in November, they'll sort me out.

I was diagnosed in late January this year after suffering the usual symptoms of GPA since June 2017.

Once I’d gone through all the tests, biopsies etc and was diagnosed at the QMC in Nottingham i started treatment the next week.

I have been really lucky to have such a specialist team so close and I am now back to how I was before I got ill.

Where are you being treated?

Hi Wengle82,

That's good - glad they sorted you out quite quickly once they diagnosed you. How are you finding things now?

I'm been seen at Guy's hospital in London and (hopefully also) starting treatment there in November. I also have a sinus biopsy that I'm waiting for a date for as well, they think my GPA is 'contained' to my sinuses at the moment.

Hi CityGirl.

They were on it straight away which was great with everything i'd been through. It was nice to know i was being looked after.

I'm back in on Monday to have my 6monthly review after the first lot of Rituximab. i feel fine now. Have a little nasal trickle when i wake up in the morning sometimes but other than that i'm back to 'normal'.

Everything willl be fine for you i'm sure. It sounds like you have had the same expereince to me. Just stay positive and try not to worry. I kept fit and tried not to let it get me down and i honestly think its what made me get through it all. THe guys team will sort you out and get you well!

I was diagnosed with GPA 16 months ago. I have been on prednisone and Imuran. I have been off the prednisone for six months. I seem to be in remission. The past year was difficult as i had no energy. i feel so much better now. I hope you get into treatment soon. Take care,

and hang in there,

Bonnie

Hi Bonnie,

I'm glad to hear you're doing well but I know it's a long journey to the light at the end of the tunnel! I have heard prednisolone can make you feel really knackered although it's hard to tell what's vasculitis and what're the side effects. I hope things stay this way for you

Thank you for your lovely message.

Josie

Hi Amy~ I am so sorry you are waiting so long for treatment!! This disease is dangerous and the inflammation of your blood vessels is causing damage to your organs and systems every day. Speak to your general doctor about beginning treatment at least with prednisone ASAP (today!) to immediately lower your inflammation. My general doctor ‘cornered’ 3 Rheumatologists at lunchtime to discuss my case when I couldn’t get an appointment with anyone for three weeks. I am so thankful to him and know that the damage to my body and my prognosis are so much better because of his care.

I am currently on 60mg of prednisone after I was in full flare with what they first thought was GPA and later diagnosed as EGPA, Churg-Strauss. My primary doctor absolutely saved me from continued lung damage, kidney issues and major nerve damage by starting prednisone as soon as they knew what was wrong and that there wasn’t a secondary infection (lung biopsy & bronchoscopy were needed for this). I have a right numb foot and partial numbness to that leg and the other foot because of this disease. The right side was numb for 7 days before treatment and the left went completely numb the day before the prednisone. I am certain, like many Churg Strauss patients, that I could have lost my ability to walk/Drive/etc without my doctor moving so quickly. Gpa and EGPAare very similar and the damage is happening every day that you are not immunosuppressed (prednisone, rituxan, etc). Please urge your doctor to start you on prednisone. He can easily consult with a rheumatologist to start you on a simple little pill while you wait for your doctor.

Best of luck to you💗

And I’m so sorry to scare you. You are not in a flare, but mine came on SO suddenly after 10 months of fatigue, lung & sinus issues that lingered on. I do not want you to have to get to such a desperate point and I know that the prednisone, easy to take & prescribe, will keep your disease under control while you wait for next steps in treatment. Love to you & your body🤗

Hi KimmyRocks3,

Thank you for your message I'm glad things were picked up so quickly for you but sorry that you had to go through that. Your general doctor sounds brilliant, I'm glad he intervened for you. I hope things are going better now. For a while, my doctors couldn't decide whether they thought it was EPGA or GPA so I'm quite familiar with both. Don't worry, you haven't scared me, I've been thinking the exact same thing! I have spoken to my GP about pred and they're happy to give me some if I get another virus / lurgy but would otherwise rather wait for the specialist in Nov. I'm in a relatively healthy lull at the moment and hoping to stay that way until I start immunosuppressants. I'm quite fortunate that the only damage I have from GPA at the moment is in my sinuses (respiratory had a thorough look too but for now my chest is fine) and am seeing my ENT soon for Functional Endoscopic Sinus Surgery (FESS) with a biopsy. I'm sure he will give me some prednisolone if he thinks I need them as he is experienced with vasculitis. My inflammatory markers (CRP, ESR) are fine at the moment which is why I think the doctors are relatively relaxed and are happy to leave it till Nov. My manager and immediate family are aware of my diagnosis so I'm sure they'll cart me off to A&E if I keel over!

Hi Citygirl,

I live in the US, and was diagnosed (without positive biopsy) this past July. I’m considered “atypical.” I tested positive in June 2017 for multiple things, but most eye catching was my positive c-ANCA and ANA. I’ve been feeling unwell for a few years. I’m getting my first Rituxan infusion tomorrow (Sept. 21, 2018). I hope you get treatment soon.

All the best,

Claire

Hi Claire,

Thanks for your message I hope your Rituxan infusion went well I hope you're not too knackered after the infusion. Fingers crossed that it kicks your vasculitis into touch!

All the best,

Josie

Hi Josie,

My first Rituxan infusion caused a reaction (itchy ears, throat, and scalp), which was remedied by additional Benadryl and an hour wait, before restarting without incident. It wiped me out and made my knee and hand joints achy. Last Friday (9/28/18), I had my second infusion, which went without incident (probably due to doubling the Benadryl from the start). I'm still feeling run down, almost like I'm coming down with a cold— lost my voice yesterday, but now it's back.

Anyway, thanks for the kind words, and hoping all is well with you.

Best,

Claire

I have had 4 years of GPA , high dose steroids ( side effects weight zoomed to 15 st. , hump on back , swollen moon face). Cyclophosphamide, rituximab, lobe of lung removed, kidneys not working properly, lost sight in one eye, other eye blurred by cataracts caused by steroids, bedbound for 2 years, over 100 consultant appointments. No improvement. Drugs causing spinal fractures.

I found myself a functional practitioner, followed her advice . Now at 11 1/2 stone and still losing, I can now recognise myself in the mirror. I am reducing the steroids, now at 12 from 40.

I have sorted out my sleep.

Filter my water, cut chemicals out of your personal and cleaning products.

I have been on an elimination diet, and found out what foods cause my symptoms.

I’ve had hormones tested and corrected my old meds

I take supplements, eat clean

Now do Pilates, yoga, Thai Chi, ballroom dancing

Feeling better every day.

So If I was waiting like you I would get to the root cause of your problem.

I believe your body will heal itself if you stop poisoning it and give it the correct food, rest and exercise.

Hi Lois49,

Wow, that's quite a journey! I'm glad things are going well for you Certainly, I'm working on the diet and exercise but like all things it's a bit of a work in progress!

I was diagnosed with MPA four years ago. Before I was diagnosed, I spent eight months at six different hospitals with dozens of doctors who were looking for a diagnosis. I actually had a rheumatologist tell me that I should see a psychiatrist for imaginary pain before my diagnosis. As an afterthought, this same doctor wanted to check my urine, which showed sever kidney damage. I was transferred hospitals and admitted for a kidney biopsy within only a few days.

The waiting period to see a new doctor always sucks, but you really should be starting prednisone right now. Just so you know, prednisone is a awful drug that will make you crazy, but it saved my life. Just prepare for the battle everyday of swallowing that poison.

Just so you know, I was thirteen when I was diagnosed, seventeen now, so I understand how hard it is to change your views on your future so young.

You asked how we cope, and truth is, I still don’t think I have come to terms with my vasculitis. For years, I have spent hours every single day researching treatments and life expectancies and clinical trials. I don’t think I know how to cope with it all, which is part of the reason that I made an account on this website.

Hi MakennaMarie,

That sounds really awful, thank goodness that they ran the dipstick test! I hope he / she apologised after they got the urine test results.

I've had prednisone before for allergy treatment which is one of the reasons I'm not exactly biting the GP's hand off to get some. I know it's quite effective but I'd rather do without the side effects if I can. (As my GP said fat, spotty and knackered > not alive, but my inflammatory markers were OK last time they were checked (Aug) so the rheumatologist said I should be fine to go without until ENT has organised a biopsy. I think that's the main reason they haven't drugged me up yet, as they don't want to distort the biopsy results. As you can tell, I'm absolutely thrilled by the prospect of being knocked out so ENT can poke things up my nose, but I don't doubt that you've had worse.

That's really sh*t, but I'm glad that you've made it through that and are still here. A GP that I saw four days after diagnosis told me that lots of people go through the 7 stages of grief when they are diagnosed. (She then proceeded to ask me "How I thought having ANCA vasculitis would change my life"). Needless to say I changed GPs as I did not find that question helpful! I have also spent a lot of time researching treatment and trials too.

If you ever want to talk, feel free to DM me. I'm not saying vasculitis doesn't suck at any age (it always sucks) but I feel like it's particularly difficult when you're diagnosed at a younger age as it makes you review your whole life. I'm not convinced I'm handling it that well at 24, so I probably would have been a total mess at 13. I admire you a lot for making it through the last 4 years.

I think that I have been struggling more in the last few months to cope than I have in the last three years combined. I spent two and a half years on prednisone which put me in remission, got off of all medication, and relapsed within three weeks. I went back on prednisone and had a few more rituximab infusions, and I am now on a maintenance dose of rituximab (one infusion every four months). I think that because I just moved to a maintenance phase, it’s becoming so much more long term in my head.

I had a rheumatologist just last week talking to me about future treatments, and she mentioned continuing every four months with chemo for the next five years before considering stopping them.

I feel so scared because this medicine was only FDA a proved for vasculitis in I think 2014, so there cannot be a significant amount of long term research about it. Prednisone has already screwed up my bone density. My adrenal glands, and my weight, and now I feel like I need to worry about my serious issues like fertility and cancer.

Just last month I was referred to an neuro ophthalmologist (eye/neuro surgeon) who was concerned about me having a brain tumor. I still am waiting for MRI results from that.

I just feel exhausted after these last four years, like my list of health problems continues to multiply, and I just don’t know how long it will last.

Sorry for being so not optimistic, I’m just struggling with the possible brain tumor thing, while also trying to schedule more chemo appointments around my exams. I hope that after your biopsy, you find out your vasculitis hasn’t done too much damage! (At my kidney biopsy in 2014, my kidneys were 25-30% dead)

I can totally understand that. I find it gets more difficult when I am less busy and have more time to think about it. 5 years of maintenance treatment was also mentioned to me, which seems like an awfully long time but is apparently very standard practice for vasculitis.

Rituximab is quite new for vasculitis but has been approved by NICE / the NHS for quite a long time for other autoimmune conditions. NICE approved Rituximab for rheumatoid arthritis in 2007 (which is treated using very similar doses but the doses are closer together for RA) so I hope that reassures you a bit. There are not any known side effects of Rituximab on fertility, but you do need to make sure you are using contraception while taking it and for 12 months afterwards as it could potentially harm an unborn baby. It can be a very effective drug for some people but most people find it totally wipes them out when they first have an infusion. I hope it is working for you.

I also worry about my fertility further down the line, as well as becoming fat, spotty, bald and my nose caving in but I've just had to accept that if that happens I'll just have to get a lot of cats and a good wig haha.

It must feel like you can't catch a break at the moment! I really hope your MRI results come back OK.

Don't apologise! You're allowed to be a bit pessimistic when you have this much going on! I hope your school / college is understanding about you taking the time off. It must be hard trying to fit everything in and not let the vasculitis take over. Do you have a lot of exams to fit around it?

I find making a lot of jokes helps, and my friends / people who know me well can tell how unwell I'm feeling by how dark the jokes get.

I'm not too worried about the vasculitis damage, I'm more concerned that my nose doesn't cave in (I feel shallow saying it but it's true) and my ENT assures me it shouldn't as long as I'm treated. I'm going to do my best to hold him to that haha. My Mum is a GP so keeps brandishing urine dipstick test papers at me every time I go home so she's watching my kidney function even if my GP isn't haha.

Gosh, I hope it's recovered now.

I don’t even have GPA, but I am constantly worrying about my nose caving in as well! The septum part of my nose is always raw and bleeding, and it makes me worried. My rheumatologist is lent sure what it is, and my allergist thinks it’s allergies.

About rituximab, I’ve had 12 infusions so far in the last two years and I am starting to think that it’s not the best option of me. I get infusions consistently every four months, and at month three and on, my joint pain is very bad every day. It gets to the point where I need help getting dressed and walking about stairs. I have never seen my rheumatologist during this time frame, so I don’t think she gets how bad it is. I feel almost like I did before I was diagnosed.

Another scary thing would be finding another long term treatment. Before rituximab, I was on cellcept and azathioprine, both were ineffective for me. The only other option, to my knowledge, is methotrexate and cytoxin-both medicines that I am terrified of. I almost don’t want to talk to my doctor about my joint pain because of fear of what she might say.

Just so you know, the hair loss thing will probably happen. I was on prednisone for 2.5 years, weaning down slowly from 60mg. About a year into treatment, my hair started falling out. My doctors believed it to be from the prednisone, but regardless, I lost amount a half of my total hair volume. I didn’t have to shave it or anything, but it looked very bad for some months.

As for school, I give in the states and am still in high school, but my school offers college classes at school, so I am unrolled in a bunch of those. I struggle with attendance because of infusions and what feels like billions of appointments, and in one of my classes, if you miss five days you fail the class.

I'm glad I'm not the only one! Yeah, I have the same. Sinusitis (often with an allergic component) seems to be fairly common with ANCA vasculitis. If I were you I would make friends with your ENT (Ear, Nose and Throat) doctor if you have one or see if you can see ENT as well if you don't already have one. There're some things they can do for you / give you to help stop the vasculitis from getting to your sinuses if you're worried and your sinuses are a problem for you. I have allergies and my ENT and immunologist work together and have me on a "triple therapy" plan of immunotherapy (allergy desensitisation treatment), intranasal steroid spray and antihistamines. I also have a couple of inhalers too which altogether has made an enormous difference to my grass allergy. If you had opened a window or door even if only for 10 seconds in 2016 I would have had a small asthma attack accompanied by about half an hour of coughing and sneezing but I can now actually sit outside for 10 minutes before I start to wheeze after 1 year of the new regime.

That sounds really rough - maybe you could film a little video diary for her next time you're having a bad phase if you can't manage to schedule an appointment with her then, so you can show her what it's really like for you and she can get how you're feeling? Ideally with a comparison so she can see the difference between you on a good day? Hopefully that will help her understand how big a contrast there is for you.

That sucks that azathioprine and cellcept (mycophenolate mofetil) didn't do anything for you. I hope you find something that works for you. I heard that they are trialling a couple of other drugs over here in the UK that have been used in other inflammatory autoimmune diseases - there might be some trials going on near you in the States that you could get involved with? I can understand that, but I would tell her now before it gets it worse and you don't have any options. I guess you have to compare it to having toothache and putting off going to the dentist - if you go early then they might be able to sort it with a filling, whereas if you leave it you could end up with a root canal or the tooth being pulled out. She might be able to offer you something else or give you rituximab infusions more often, I think it's worth having a chat with her about it. At least so you're on the same page.

Methotrexate is what has been suggested for me, and I will hopefully start treatment at the end of November so I'll let you know how it goes. I'm hoping I can just have the tablets and won't need to inject it. I'm not super thrilled but as long as you're monitored closely it's supposed to be quite effective. I guess with all of these drugs it's weighing up the pros and the cons (or the risks of side effects and the benefits of treatment as the doctors tend to say).

Cytoxin (cyclophosphamide) is the real big guns and has some really nasty side effects (which I'm sure you know) but it is very effective and I'm sure they wouldn't give you cytoxin unless absolutely necessary.

I had the same drug / side effect worries and sitting down with my rheumatologist and actually asking all of my questions (e.g. Do I need to have cyclophosphamide? When would you give me cyclophosphamide? Why have you recommended this drug over that one? Etc). It also helps that one of my best friends is a clinical pharmacist so I can just bug her with drug questions if I have any. (I definitely recommend making friends making friends with a pharmacist)

Good to know, I'll invest in some good hats! Yeah, I heard that pred can also do that. It's a real barrel of laughs, vasculitis. I hope things are better now.

That's cool. That 5 days rule seems a bit harsh, even if you didn't have vasculitis. Yeah, I can imagine it must be really tough to fit everything in but kudos to you for sticking with it all.

An update in case anyone was interested:

I had a particularly nasty mini flare about a month ago and ended up asking the GP for a short course of steroids (and she gave me 5 days of 40 mg). They were quite effective but effectively a bit of a bit of a sticking plaster but definitely helped to tide me over.

I finally saw Prof D'Cruz today who was very thorough! There was some waiting around but I don't mind waiting if it means clinical staff aren't rushing. I also have some more tests to do - he would like another set of lung function tests and has also requested an EMG test as apparently the nerves in my hands and feet are not quite as awake as I thought they were and of course, ENT still needs to do their thing. However, he's decided to put me on some low dose (7.5 mg) prednisone in the meantime, rather than my current regime of grin and bear it until you get desperate for a short course (not recommended), so hopefully that will stop the 8 week mini flare cycle I am stuck in. I have a review in two months anyway so I feel a lot better about things

Very happy that you have a treatment plan now! Great news and reassuring to have another good report about Prof D'Cruz.

I'm waiting for a nasal and sinus biopsy and wonder what these will show, if GPA is already diagnosed? (My ENT thinks SLE has caused my nose cartilage damage) xxx

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