I'm sure we're all now well versed in the effects of chemo and steroids on our immune system. My little tale should help serve as a reminder...
I have just returned from 2 glorious weeks on the Algarve, which my consultants let me fit in between chemo cycles. I was a little worried about travelling with active Vasculitis but I really couldn't let my kids down and I really needed the holiday too. So 6 days in, I find there's a pea sized lump growing between my legs (stop sniggering at the back, PAN does involve the testicles you know). Day 7 and I noticed I was sweating more than normal. Day 8 and the lump was the size of a golf ball. I was running a temperature and feeling really sick. The nearest hospital was in Faro, 50 miles away and I really didn't want to have to explain PAN and my treatment to a foreign doctor. So my partner bought me some needles which I sterilised in a flame and used to lance the big lump. I pushed them an inch deep into the cyst, but nothing came out. I was by now in agony; the cyst was infected and the spreading round my groin. I had an area the size of a hanky now hot, red and inflamed. Walking was dreadful, sitting much worse.
That night I slept fitfully, and shivered through the night despite the heat. The following day my temperature was raging, so I resigned myself to a hospital trip and possible septicemia. Then the cyst bust. I won't go into anymore detail than to say it was utterly disgusting, and you will really know a staphylococcal infection if you ever get one . I cleaned the wound up as best I could, and the pain subsided as the cyst drained itself over the next 4 days. I was then able to enjoy the rest of my holiday worry free. Tomorrow I'm back for chemo provided my white cell count is OK; my CRP and ESR levels will be high as I can feel PAN gnawing away.
Moral of the story; check your holiday insurance. It was only when I ready the policy did I see that my bank had specifically excluded vasculitis. I was very lucky the infection in my bloodstream didn't take root in my organs. Self surgery is not to recommended, and always seek the advice of a qualified medical professional. And I have been told stubborness is not one of my bet qualities
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Wellsie
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Im on the chemo second one in too mate and we have had to cancel a carribean cruise,as treatment still ongoing,They recommended not to travel coz risk of infection,youve been thru the mill pal,by the sounds of it ,im surprised they didn't deter you from going,i know what you mean about letting family down tho.I feel like crap and wouldn't want to be on holiday to be honest with you.Ive polyglanduar autoimmune failure ,type 1 diabetes ,addisons disease,vitiligo,Now gca vasculitis with pmr.Had esophagus prob accalasia last yr which required surgery down to autoimmune failure.Hope your feeling a bit better after your ordeal,your a braver man than me I tell you.
I bet you were like a bear with a sore **** when all that was going on (literally). I had to cancel my holiday when my initial treatment started. When I say had to, the consultant strongly recommended it. The holiday was 10 weeks into my treatment. The rest of the family went while I stayed at home, feeling quite well as it turned out. Law of Sod says if I had decided not to cancel I would have been unwell.
Hi Chris .Im only 50 ,and am on 3rd infusion cyclo and methylprednisone.Still on high doses which will be reduced ,hoping for no flares my vasculitis is attacking my eyes gca.I see your 56 yr old,do you manage work?,im under occ hth at moment worried about tiredness ,mind early days for treatment ive been off for 15 weeks now.I do a manual job and need to drive hence concerns .Sorry to hear you missed your holiday but health more important.
Sorry to hear that you have been off work for so long. Once I had commenced treatment I started to recover quite quickly and returned to work after about fours weeks. I am mainly office based with some driving as well, so it wasn't particularly physically demanding work. I started on shortened days and gradually increased. Fatigue was always there, with some weeks/days better/worse than others. The chemo infusions also made me feel a bit rough for a few days. I was somewhat lucky with my vasculitis in that I was diagnosed fairly quickly and it was mainly my kidneys that were badly effected. There are enormous variances as to how this disease effects people (as you are no doubt starting to find out). I see you also have a few other illnesses going on which can't be helping matters and I note from the Route Map that GCA can cause significant weakness in the muscles. If you are on your third infusion I suppose it is still early days (I needed nine to put me in remission). I do I hope you start to feel the benefits soon.
Thanks Chris for reply.Good that you made a quick recovery and are back at work ,im hoping for the same outcome.Its a strange old thing, its the way ive seemed to have slowed down and the fatigue which I understand is part of the illness,even when in remission was fatigue there? im hoping not .We are all made different ways and react to things different ways to ilnessses as you say.I hope you continue to feel well and fit ,,,,as can be anyhow.All the best Mick.
Remind me NOT to pick a fight, with you, I'd lose!!!!! I think that you are incredibly brave (and possibly rather stupid to boot) -I don't mean that offensively, by the way, I'm just rather 'taken aback' at your courage! I'm glad that all worked out well, in the end, please do keep me, us all, posted will you?
I'm 6'4" and 18 stone so try and avoid fights if I can these days. I used to play rugby so you become acclimatised to pain tolerance and stupidity in equal measures.
I went for my chemo today; so they did some more blood tests and there were no signs of infection. So chemo done and dusted. I'm 44 so I'm a spring chicken
Keep well guys and manage your doctors; don't let them manage you.
Good Heavens !!!! I have only just read this, John has been speaking in Wales and Manchester since we returned from away so not looked at HU much this last few days. I am so please there is not infection remaining and you have continued with the treatment. it must have been very scary for you and your family. I hope you are feeling ok too and the treatment is going ok too?
I can relate to stubbornness Wellsie, I am married to one just like you but quite a bit older. When we were away in France in 2008, a certain someone scared me to death as he was weeing blood!!! We spent ages talking to his consultant at Chesterfield from France, as soon as we arrived home this certain someone was admitted to hospital and a carcinoma of the bladder was removed. (Very successfully I might add!!! )
Going to France does not seem such a problem with Vasculitis, the French seem very clued up. John had to visit a local village doctor once because he needed blood tests for monitoring his INR levels, this village doctor not only spoke a little English, but knew all about WG and told John he was eating too much French food and drinking too much French Wine!! As he thought he was a 'little over weight' I also agree with you, if you have Vasculitis you need to educate yourself about your type of Vasculitis and then you can work with your doctors, instead of just being told by a doctor what to do.
I am pleased you enjoyed your holiday! despite everything.
Stubborn? You? Surely not Wellsie !! thank you for the cautionary tale. It is always better to go through an insurer or broker that specialises in pre existing conditions then you know you are covered even though it may cost a bit more.
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Do other vasculitis people get nausea, not from the meds?
