My husband was diagnosed in 2019 with EGPA. He's on a variety of meds and currently trying to reduce prednisone managing to reduce from 15mg to 11mg before chest pains x breathlessness started. Consultant advised this pain was consistent with withdrawal effects of the drug so he persevered. On Wednesday evening his pain Hot unbearable x after 8 hours in A&E he was informed he had suffered a heart attack x currently awaiting an angioplasty. I know EGPA can affect the heart but until now it's been ok. I'm also worried how this procedure of having a stent will affect his EGPA, could it cause further complications or aggregate his condition. Sorry for lots of questions, I am staying positive but also need to be realistic. Any advice would be appreciated
EGPA x Heart: My husband was diagnosed in 201... - Vasculitis UK
EGPA x Heart
It is very likely the heart problems are connected to his EGPA (see link below). That means your husband's treatment will take the pre-existing vasculitis and medication into account. Suppressing further inflammation while the surgery heals will be a top priority, not tapering the steroids. Best wishes.
frontiersin.org/journals/me...
Thankyou so much, very helpful advice
EGPA is still quite rare and it can be complicated so it is essential that your husband is under the care of doctors with good vasculitis knowledge.Putting a stent is a small procedure, but they will have to monitor for blood clots .
The question to the doctor is : did EGPA cause the narrowing of the blood vessel? If so does it mean that his vasculitis is not under control?
Thanks so much for your reply. His bloods were taken in AxE which showed a slight raise in the enzyme found when a heart attack has occurred. They repeated the blood tests x informed him that if the level of enzyme was consistent the likely cause of chest pain would be to do with the EGPA, if it started to rise it would be a heart attack. Further tests identified a significant rise, hence him being treated for heart attack. Since his diagnosis he has had ECGs, chest xrays etc; one test showed a slight enlarged heart x the other some calcification but his consultant has always maintained this is not a major issue as his geart is doing what it needs to. However we have always questioned this as he is extremely tired, breathless x has swollen ankles x abdomen which I associate with the heart. I know the stent procedure is pretty straightforward but it's the EGPA side that concerns me and I am hoping they will be able to see from the angiogram how much damage has been caused to his heart. I really appreciate your support on this matter, EGPA is an awful disease x little is known about it which doesn't help.
I will also be asking the question if this has been caused by EGPA, hoping they can answer this.
"... chest pains x breathlessness started. Consultant advised this pain was consistent with withdrawal effects of the drug"
What consultant was that? As someone who has a lot of experience of people tapering off pred in GCA and PMR where pred is pretty much our only medication and we spend our lives tapering - I have no idea at all where he got that idea from. Done properly there would never be chest pain due to withdrawal of the drug and although pred CAN lead to breathlessness it is worse at higher doses and pretty rare. Chest pain must always be suspected as cardiac in origin until proven otherwise. I think the consultant's advice was poor, to say the least.
I do hope the angioplasty goes well.
Yes I'm afraid I have to agree with you there. I'm not medically trained but even questioned this x will definitely be challenging the consultant on this one! Sometimes I feel there needs to be more emphasis on how you know your own body x what works x what doesn't......people suffering with this awful disease are often experts in their own right. Thanks again for your support
Oh yes - couldn't agree more! Someone on our forum said the other day that she had seen a young rheumy at a support group who emphasised exactly that. Years ago I had a friend in Germany who had trained as a paediatrician and the first thing they were told at medical school was "listen to the parent - they know their child better than you ever can",
Hi Beaniebabe,
So sorry to hear what your husband is going through. It doesn’t sound like you have peace of mind in your consultant. Is your husband seen by a Vasculitus consultant? With my sister as soon as we got her referred to a Vasculitus clinic we felt she was in safe hands instantly. It’s well worth the travel. My sister is under Addenbrooks Vasculitus Clinic.
Hope you get your answers soon and your husband gets the care he needs and stabilises soon too.
Take care and all the best.
Thanks Cloe, he's under sheffield hallamshire rheumatologist x northern general for respiratory. I have no problem travelling but any idea how I could request a referral. Consultant has mentioned she would refer to Doncaster but tbh I doubt there will be any specialists there. I would even consider paying for a private consultation.
Ask on here for the nearest Vasculitus specialist clinic to your area. I called Addenbrooks, asked if they’d take my sister on if she was referred, then we needed her GP or Rheumatologist to refer, in her case her rheumatologist referred her. I can 100% vouch for Addenbrooks which is in Cambridge. We met someone who travelled from Ireland to be treated there. Good luck 🙏🏻🥰
Hi Beanie. Odd comment re tapering pred. He needs to be on a maintenance drug even to begin tapering, typically the nhs will try cheaper drugs first (mycophenolate/azathioprine/methotrexate) before the biologics come out. Unfortunately no biologic is cleared in the Uk for use to treat EGPA and he will really need to be on Mepolizimab or Benralizimab. You can only get these drugs from a referal from the asthma clinic as treatment for severe or eosinophylic asthma since we pretty much all have this. Within my small whatsapp EGPA group rituximab has also proved effective. Withdrawal symptoms of tapering long term pred on high levels typically occur when you get below 5mg/day because at this stage your body has to start to produce its own cortisol again. I have had an angiogram to check heart activity..personaly I doubt his heart issues are EGPA relaed but its really important to get an expert view as EGPA activity in the heart is very serious - was the andiogram prompted by a heart mri? I am on Statins, antiplatelet and blood pressure as preventative measures agsinst heart/stroke related issues - EGPA makes your blood "sticky" . We are all different but I will echo comments that he must get to a specialist. All the symptons you described (breathlessness/tiredness etc) are consistent with EGPA but could, like myself, be lung related. I would focus efforts to get infront of a vasculitus specialist ideally EGPA. I dont know any in your area but perhaps this group could advise. If you could get referred to Addenbrookes in Cambridge that would be ideal. St Thomas's in London also has expertise. He needs CT scan and a specialist to interpret the granulamatosis seen in EGPA. Try to get a referral from your GP to Clinic 12 at Addenbrookes..Prof Jayne. Its your right to request this. Cant see how a diagnosis of EGPA could have been reached without specialist knowledge and interpretation of radiology. My local hospital told me I had lung cancer! None of us are doctors but I too agree with the tapering comments being dubious. I am on benralizimab and have been tapering for 12+ months from 5mg/day and have got to 1 mg/day with checks to ensure my body has started to produce cortisol again. My withdrawal symptons are entirely different. I wish you best of luck on your journey and happy to share my experiences in more detail if you would find helpful. Best Lev
Thanks everyone for your advice x support. The medication he's on is pred, mepolizumab, mycophenolate, various inhalers etc. He has always managed to get pred down to 15mg anything below that he starts to experience congestion with nasal polyps, joint chest pain x asthma. Consultant advised he needed to taper steroids down to as low as possible, ideally 5mg but he's only managed to get to 11mg before things start to flare resulting in little quality of life.Following heart attack last week Dr increased steroids to 22mg plus blood thinners x prescribed meds for fluid, he lost 10kg in 2 days whilst in hospital due to fluid retention which must have put pressure on his heart. He had angioplasty yesterday where one stent was inserted. He asked cardiologist if his heart issues were related to egpa x advised there was some minor heart damage so this was a possibility as longvterm steroid use x steroid induced diabetes could have contributed to this. Cardiologist advised he would be writing to rheumatologist x respiratory to ask if other alternative meds can be used but I'm not sure what??
He's now on additional meds for his heart along with meds for egpa. Must say he's really been through it recently x feels so low in mood which is understandable.I will request a referral to addenbrooks at our next appointment in November and sharing your experiences with him when he's home may help, thankyou
Wow - you have both really been through it. When I was on Mycophenalate (3g/day) I experienced permanent chest pains increased breathlessness and tiredness which went away when I stopped - I had a toxic reaction to it. With Mepo I only managed to taper pred to 7.5 a day. With Benra I am hopefully of stopping completely. Nasal polyps/sinus issues are all part of a new normal for me. Really feel for you both and hope you make some progress to see a specilaist.
Thankyou, they have previously mentioned changing him over to benra which I think is worth pursuing. Its a tough journey but we will get through it
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