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Hi all.
Just a fairly brief update. It's been a week since I re-started treatment for a relapse (40mg pred, 200mg AZA being the main meds) and things haven't been too good.
Sunday was that the start of a 5 night vacation in Scotland and it was expected to have come at an ideal time, i.e. a relaxing break to help kick start my recovery from relapse - it didn't quite work out that way.
As most of you may recall, I have had previous heart problems (left ventricular dysfunction), my old cardiologist never really had answers to the cause of the heart failure, but would blame either my haemochromatosis or WG. He eventually discharged me when my echo results seemed to show improvements. Most of my heart symptoms didn't improve, except for the irregular heartbeats and general chest pain/tightness, which both became less frequent and severe.
Well since I re-started my WG treatment, last Thursday, the irregular heartbeats and chest pain came back with vengeance. On Monday, our 2nd day in Scotland, we got a call telling us that our son had been attacked the previous night (nothing too serious, thankfully) and our dogs were unwell (pooing blood). By the afternoon I returned to the hotel as I was absolutely exhausted. At this point the irregular, painful heartbeats were causing my body to jolt around like I was having severe hicups. I ended up in A&E where my heart returned to normal rhythm. After a lot of consideration they let me out of hospital that evening. This was partly down to the fact that there were no individual rooms available and the Drs admitted being immuno-suppressed and on a regular ward was not ideal. The "head" Dr said I must return immediately if my heart began to beat out of sync again.
The Dr also contacted my local hospital and it was considered that my meds were not the cause of the heart problem.
Obviously the news I'd received about my son and dogs, plus I'd over-exerted myself in Scotland could have had a lot to do with it. BUT I returned home yesterday and today I had an attack that lasted for 2 hours. I now don't know if the stress is causing the heart problems as today has been relatively stress free.
My wife picked more meds up for me from the pharmacist. He spent a long time double checking that he meds were not the cause of the heart problems, so I'll have to accept that it's just a coincidence that the symptoms started at the same time as pred and aza.
I have just emailed my specialist who deals with my WG to ask if he thinks I should be re-referred to a cardiologist. I don't want to appear like a hypochondriac, but I worry I might look like that as when I eventually allow myself to go to hospital my symptoms subside and results are almost normal (sometimes). I have a pulse that is quite visible on my wrist and I am certainly not imagining that my heart briefly stops. The feeling of my heart stopping (plus pain) matches the pause in the visible pulse in my wrist.
As for my general health relating to my WG relapse, the treatment hasn't began to help yet, except for less pain in my left foot that has rheumatism. I also had 1 morning without lots of blood from my nose, but the bloods back again.
I am hoping that now I'm home I will force myself to relax. If I still feel I am slipping deeper into a more serious relapse I'll ask my specialist if it might be time to add some chemo (hopefully RTX) to the pred and aza.
Although I wasn't very well on my trip we still had a great time. The highlights being Loch Ness, spending the night and dinner in a church and visiting my favourite whisky distillery. I got to fill my own bottle of whisky at the distillery, label it and there will forever be a record of it at the distillery. For those interested, it was cask strength, 18 year old and finished in a bourbon cask, rather than a sherry cask (i.e. it's a whisky that can not be bought elsewhere). Sorry if I've just bored you all to death.
I guess that wasn't as brief as I meant.
Thanks for your concern.
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Originally Posted by Titus3:2
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