Symptoms worsening, waiting for appointment-advice please!

[FeelingGreatNot]

I’m waiting for a specialist appointment for ?EGPA diagnosis in 16 days time. Since I got the appointment back in August I’ve developed joint pain (hands and feet mainly, muscle pain (calves hamstrings mainly), tingling/buzzing, and now flickering muscles and involuntary toe movements. The pain is a burning ache with another more severe lancing pain intermittently. All these are getting worse and I’m struggling to sleep. Generally I feel extremely tired, bad sinus pain. I saw my chest physician late last week (rural DGH) who did some bloods (ESR, CRP, redo of ANCA, CK). She said unless they’re very high to hold off treatment as they may upset any biopsy result. I hope I can get those results this week. GP tried phoning the specialist centre twice and wrote a letter to try to bring appointment forward-no response. Can anyone tell me if I’m likely to get a biopsy at the first Rheumatology appointment? Or scans? A secretary said the appointment would be ‘an hour but it varies’ when I asked so I don’t see how it would all fit in. Also when would diagnosis happen or treatment? We live 3.5 hours’ drive from the hospital. I do want a proper definitive diagnosis but also don’t want to get any irreversible damage.

[FeelingGreatNot]

Sorry that was long :). It’s the Kellgren in Manchester by the way.

[zoe69 Administrator Volunteer Vasculitis UK]

I am sorry you are suffering so much. I wouldn't think that they would do a biopsy ( skin biopsy?) , they will refer you to make a biopsy.

They would take your history and maybe give you a primary diagnosis ( pending biopsy results) and make a treatment plan.

The most possible scenario is that there will be shared care with your local hospital and your GP. Monitoring will be essential and it seems your GP is good and caring so if I was you I would prefer them to monitor ( not the local hospital) .

Write down everything you want to ask and a timeline of your symptoms. If you have a rash that has developed over the time and have pictures, make an album of them. Explain your worries. If you can have somebody with you, 2 pairs of ears are always better.

Don't forget to get contact details ( I almost forgot) for the team and the specialist nurses.

Good luck!

[FeelingGreatNot]

Thanks for replying-very helpful! I hope you are as well as you can be. I did mean a skin biopsy for small fibre damage. I’m just anxious about the waiting time as it seems crazy to know you have a neuropathy but not be treating it because of the way the system works! But that is the reality. I have polyps but I gather it’s not easy to prove diagnosis with biopsy from the nose.

[AmyS1]

Just for your information. You don't need a biopsy for a definite diagnosis. Indeed there are risks with biopsy. The most important thing is to be sure that you are seeing someone who specialises in vasculitis. It might be worth phoning uk vasculitis helpline to find details of the specialist nurse to see if she can bring your appointment forward.

[FeelingGreatNot]

Thanks Amy. Yes, I would rather not have a biopsy. Was just thinking if they want one would it delay treatment even further. Good idea about the helpline-I had great advice already from VUK about the referral. This forum is brilliant.

[Chipper03]

I was diagnosed with EGPA 11 years ago, without a biopsy. I had nasal polyps but there was no mention of biopsy of them. Diagnostic criteria may have changed over the years, of course, but they focused on the eosinophil count in my blood, and still do in the monitoring of it. I recall the type of pain you describe, many sympathies to you. Once treatment started things really improved, and I’ve never had another flare up. Loads of good luck with diagnosis and treatment.

[Rhonda57]

I had an appointment with my Rheumatologist and he arranged for a PET scan within 24 hours and a biopsy 1 week later - I started taking steroids directly after my PET scan (before I left the hospital) and had a biopsy 1 week later - The scan confirmed my Vasculitus, and the biopsy showed “sketchy” temporal Arteritis consistent with taking steroids for a week - hope you get what you need in order to start your treatment at the earliest opportunity xx

[FeelingGreatNot]

Thanks everyone for all answers. I have more idea what to expect from the appointment now.

[Churg]

It is indefensible that anyone should have to wait as long as you for a consultation. You have significant symptoms and if you have vasculitis it will not improve unless treatment is instigated. Unfortunately you are one of many. Generally we are not fond of complaining but the service must be improved. There are too few efficient centres of excellence and not much in the form of searchable databases. Descriptions of diseases are patchy. There is little in the way of consensus of treatment and in my experience rheumatologists have little knowledge of the disease. I always ask the ever changing myriad of doctors I have seen how many cases of egpa they have seen. It has always been less than five until I saw a Sri Lankan consultant who had seen ten! It is apparently much more prevalent in Sri Lanka.

So go for the very best centre you can find (it is usually dependent on a particularly knowledgeable individual). Read up anything about vasculitis that you can and ask searching questions. If you do not think that replies match your reading and your increasing knowledge of the subject then move on. This is difficult (I changed consultant five times but by doing this I am now in remission.)Normally I am the mildest of people but I was fighting for my life and the welfare of my family. Sorry about the rant!!

This is why vasculitis UK is so important and we must encourage them to lobby the medical profession and government for research funding and facilities. Proper medicine in fact.

[FeelingGreatNot]

Thanks to all for replying. It is good to feel supported. The service is obviously completely overstretched. I feel that I have tried hard to be seen more quickly via both GP and hospital respiratory consultant both of whom know I am developing a neuropathy in the context of other longer standing symptoms (lung infiltrates, asthma, eosinophilia as high as 5.4 this year, and florid paranasal polyps, fatigue, sweats...).Its now two weeks until the appointment and I’m just going to stick it out. Im going to the Kellgren in Manchester and have prepared a timeline of symptoms and test results with highlighter pen on the most relevant bits.

[FeelingGreatNot]

I have read up a lot (including just about every published paper:))as I’m medically trained so I should be ok from that point of view.

[Mal06]

Hi looking at replies think you’ve got in hand, it’s unfortunate about the wait but unless you were admitted as an emergency to a hospital with the right specialist, you’re in the queue! I was diagnosed 11 years ago, but at what used to be called stage 3 - heart attack, lungs etc all under serious attack. So I was waiting for treatment (had a preliminary diagnosis by chance a Dr in the a&e hospital had seen someone 3 months before with churg - lucky he started me on steroids BUT considered himself an expert, which scared me! John mills (before vasUK even started properly) helped find a specialist for me. But a long wait, 3 months minimum, so I researched him & went to see him privately - (worked one day a week at a private hosp not far from Nhs one I was going to attend), I took all my test results, list of meds etc. He was very thorough - read everything, full exam, history etc....but said YES defo got, this is plan which I’ll send to your GP to get underway on meds - I won’t do tests today (costs for you) but will when I see you in 6 weeks at Nhs appt hospital. I felt relieved to at least know and have a plan short term to keep me going through my GP, he also discussed which tests he would order when he saw me again and having cyclo as a possible treatment (nothing else avail in those days). He would also start ball rolling for me to see ENT specialist, have a scan/bloods/breathing tests, etc as necessary. Once at my NHS appt I then saw him monthly, then quarterly in that first year. As outlined - take all your results to date, will save time, list of any meds you take or have had recently. Take a list of questions you want answers to -there used to be one on the CSS web page to help. Take someone with you - to take a note.... it can be overwhelming even if you have medical knowledge, because it’s the 1st time for answers - can be emotional!! Also can be a long day.... so quite draining someone to help ho off for a coffee etc. Especially if you’re in pain. You may get some tests done then or be arranging them etc. Personally know it’s a trip...I had all that to my specialist (still do) but having been to local hospital when I was critical, they were great on the heart attack etc, but they are not specialists in this field - although things I know have improved over the years....I’d stick to travelling for a while until treatment plan well in hand and you’re more stable. Just a thought. I see around 8 diff teams now all at that hospital - so that the dots connect!!

You should get onto appropriate pain meds ASAP - sounds like neuropathy (will take a while to get nerve conduction testing) your GP could put you on gabapentin now to help, as it’ll take while to work out the right dosage for you. No one should be in pain - although we often are, best to get what help you can.

Good luck hope appt goes well. Let us know.

[FeelingGreatNot]

That is very helpful, thanks for your detailed reply. I think you’re right that although it involves travel it’s best to get the experts input whilst things are being sorted. I hope you are doing well yourself! I will report back.

[Louizadavis]

Hi

I was diagnosed Jan 2016, like you I went through months of symptoms, pain and hell, thankfully my GP was amazing and although wasn’t sure what, he knew there was something going on, my weight dropped at ridiculous rate being just 7st not only was I struggling I looked incredibly ill. The rash appeared on 30th Dec and my GP was fantastic arranged the bloods the same day and even rang me on 1st Jan(happy new year!) to say he finally had some answers and was referring me for an urgent rheumatology appointment which came quick 7th Jan, at the appointment they did my skin biopsy and arranged all the other tests, ct scan, ent, cardiologist, mri(I had huge heart involvement) by 21st jan I was ordered to attend cardiac immediately as an inpatient and that’s when they started cyclo infusions, I would only assume that being such a wait for your appointment your markers aren’t at worrying levels. At your appointment be prepared I was in the clinic for several hours and was sent away with initial treatment of high doses of steroids until result were back. There is light at the end of the tunnel and pretty instantly of starting the steroids symptoms eased, I wish you lots of luck at least your on the road to getting some answers. Take care.

[FeelingGreatNot]

Hi Louiza-thanks for answering. It does help to hear other people’s experiences. It sounds like the rash was the thing which helped everything speed up. Your referral was very quick too and they got a lot done straight away. We live quite rurally in terms of healthcare and I think this is part of the problem as they struggle to recruit people. Do you mean inflammatory markers/ANCA? I had them done for the first time in months a fortnight ago and I haven’t had results from respiratory consultant so I’m presuming they’re ok. I’m ANCA negative. Am I right that high levels of ESR/CRP corresponds to active disease but low levels don’t prove much? My eos have been very high at times-around 5 but I have seen that people can be way higher when they’re really sick. I know I’m lucky I’m not sicker but it’s a worry that things can get worse quickly at any time.