Hi all, if I share my experience I'm hoping that others out there have been through similar and can explain what the likely next steps will be.
In early March I went away on holiday and on arrival at the hotel I changed into shorts and noticed a few spots on my legs. Not thinking it was serious I continued withy my day and went out that evening. On return to the hotel late at night I noticed my upper thighs to feet were covered in red blotches/spots. They were not itchy and had I not looked I wouldn't even know they were there. Went to the hospital who completed blood tests and couldn't find anything and wanted to transfer me to another hospital at a cost of 3000 euros. As I felt fine within myself, and that they stated they would not work with my insurance company I discharged myself and a few days later went home - the spots had started to clear up. A week later they returned both on my legs and a few on my chest. So, having been to the GP and referred to a dermatologist 7 weeks later I am still none the wiser other than noticing the dermatologist had written vasculitis with a question mark on some of the sample paperwork. He mentioned referring me for a renal exam and I am awaiting results of the blood test/appointment for the exam.
In this period approx every week I get flare up's which seem to happen in sync i.e. both feet, or both ankles, or both knees along with joint ache and swelling. Strangely the last one affected both my palms with huge bumps in the centre. I have noticed feeling tired and seem to be more ill than before especially with jont/muscle pain.
Just through trawling websites there is so much info out there that I am struggling to come to terms with it - seeing headlines like 'There is no cause - there is no cure' is worrying. Anyway I have to be positive and simply would be interested in other people's experience of the early days of possibly being diagnosed with Vasculitis.
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italy321
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it does sound like it could be vasculitis, Italy321. I, too had some of your symptoms, especially the bumps on the palms of the hands (I also had them on the soles of my feet and on my scalp!). Feeling tired, for no particular reason, is also a sign. I hope you get a definite diagnosis soon. It sounds like, if indeed you have vasculitis, that you have caught things in good time and are being seen by the relevant specialists.
I would recommend going to the Vasculitis UK website and downloading, or reading on line, the Vasculitis Route Map available there (sorry, haven't got the hyperlink in my head to give to you here!). That will give you comprehensive and positive information and start you on the road to becoming your own vasculitis expert.
Do not worry about the negative statements. Most of us achieve a good life, even with the disease, once the docs have given us the medication! It is non curable, at the moment, but it is treatable so it is positive news that you are being taken seriously (so many of us in the early stages were labelled hypochondriac, attention seeking or 'of a certain age'! Good luck, and keep on asking the questions - there are bound to be many as you move towards diagnosis!
As Ayla has said, ignore the hysterical nonsense that you find elsewhere on the internet.
There are various types of vasculitis, some can be due to an allergic reaction and it tends to resolve once the cause has been removed - so in your case, maybe think about tanning products or sunscreen. So this is basically a dermatology problem.
However there are other types of vasculitis that are "systemic" - ie they involve the whole body and can affect various organs, including the kidneys, hence the need for tests. It does sound as though you are being affected more widely, so maybe you need to see someone who takes a broader view than most dermatologists do. If there is no evidence of kidney involvement, then probably a rheumatologist is best. The most important consideration is to get a prompt diagnosis and any necessary treatment started as soon as possible. Treatment for vasculitis has come a long way in the past 40 years. Many of the gloomy statistics you see quoted on the internet are old ones. The situation today is infinitely better.
The Vasculitis UK website is a useful mine of information and you will get a great deal of sound helpful advice and information in this discussion group.
Thanks Ayla I will download that and have a good read. I may have to do a few pages at a time as for some reason all my life whenever I watch/read/listen to anything slightly medical (especially detailed) I get very nauseous/sweaty/faint and tend to avoid it!
Thanks John, my dermatologist suggested renal exam so hopefully he is on the right track to providing a diagnosis. I had a few issues last year following blood tests for my epilepsy where creatinine levels were out but that seemed to resolve itself over time. It's certainly helpful having forum's like this to obtain information and hear from others with similar experiences!
Your symptoms sound like mine before I knew what was wrong with me. I have Churg Strauss Syndrome (CSS). Especially the "spots" on my legs, joint pain, tiredness.
I didn't have bumps on my palms but had burning hot & itchy palms and they also looked red raw. I could only get relief by placing my palms on the walls of a freezer! Both the spots on the legs and the itchy palms happened at the same time and although alarming (I now know it is called "purpura") went after a couple of days.
I felt generally dreadful too but I was staying away from home (my mother was seriously ill) so couldn't see my own GP. It took a few more months to eventually be diagnosed.
As Ayla & John have said, don't be disheartened by the negative statements on the web about Vasculitis, it's not all "doom & gloom". As John said, the help for those of us with Vasculitis is infinitely better than it was and is improving all the time. Additionally this site is a godsend for help and advice, beforehand there wasn't anything like it on the web.
Sorry to hear you are having trouble. Hope this might help. All the notes above I do also believe are correct you just never know what is causing what. I am diabetic and they wanted to put me in the hospital to start a lot of the medicines because it would include prednisone and my sugars will go sky high. Everyone knew this was caused from all my animals and this then would be a good time to see if the animals were causing the problem. After two weeks in the hospital I went home worse, a lot worse than when I went in.
After working my way through all the skin doctors in town and all the rheumatologist in town I finally went to Houston, Austin, San Antonio, Dallas and ended up at the Mayo Clinic in Rochester Minn.,USA. It is a teaching hospital. Sitting in this classroom with nothing on but underwear 15 students approached me with slides that you would use in a microscope, But anything clear will work.
Do you know that when you push on a finger nail it turns white and then as soon as you let go it turns pink again. Well the way the doctors explained it to me at the Mayo clinic was that if you take something clear and press down on one of your spots it will stay pink, it will not blanch, because of the vasculitis and the scar tissue it leaves every where, the blood can not get out of the vessels and sometimes back in to the vessels like normal people.
Just wanted to share something I had learned though out all my trials and tribulations. If it does not blanch when you push on the spot with something clear so you can see if the blood leaves the area then according to the Mayo Clinic it is vasculitis. What kind I do not know.
In some ways I think the UK is ahead of the US. I have never heard of so many different types of vasculitis as I have heard on this website. I am going to ask my doctor about this when I go back.
I hope this helps in peace of mind. I have had a lot of trouble with low Hbg but I get iron infusions every other week. That has really helped and I have more energy.
I wish you well. And God's speed on your recovery.
This is how my symptoms started too, I started getting the purpura rash on my feet and lower legs years ago and baffled my doctor at the time, I would get it if I stood for much of the day or exercised, it was also accompanied by joint pain, stiffness and tiredness. I have systemic vasculitis which is secondary in my case to sjogrens syndrome.
The sun is a big factor for me and I have to avoid it at all costs now, I noticed you said you were on holiday when it started, my rheumatologist told me to keep out of the sun when I was first diagnosed which I didn't listen to well enough and while I was on holiday a couple of years ago had my worst flare, I now never go out in the summer months without factor 50.
Don't worry about much of what is on the internet, most of it paints it very negatively, I remember my specialist saying to me the good news is that it is all treatable and being really positive about my outlook. I had frightened myself silly with the doom and gloom I had read beforehand and now wish I had never looked.
If it is vasculitis don't worry, many people manage to lead a full life, its just a matter of learning about your symptoms and managing them.
Thanks for your responses, great information for me!
I have yet to find a pattern for when the rashes appear, but I have recently stopped smoking and drinking - it was only social to start with (although allow myself the odd vodka/coke or two), as understandably these vices don't go well with any blood disease. This hasn't stopped them however I am now amending my diet so will see how that goes.
I have always exercised regularly 5 times a week but my joints/muscle pain are beginning to really impact this, I haven't been able to go to the gym for the last 7 days because of the pain around my abdonimal/kidney and back/shoulder. It's getting a bit ridiculous frankly and depressing.
I've booked in to see the doctors again to obtain strong painkillers, I just find the whole thing quite surreal how your body can just lose it in a matter of weeks/months.
Jenny, I can live without smoking and drinking but a life without sun, I'm not sure I could do that
i have this kind of situation as well where i get red spots in my feet and legs and in my arms too,after seven months of staying in Dubai. something similar to this photo -> bit.ly/1o1Y875
then the doctor said it is vasculitis or purpura and i dnt have any info what that is.
no treatment had helped and doctor said i have pretty ok bloodcount and so on. i kept getting it and now i just want it to end.
when i went for vacation on June, i didn't have any of those red spots at all. when i came back to dubai, i started getting them again until now.
i dont want to go to a doctor as i always get the same response
Hi I think it could be a form of Vasculitis....I have 3 types Polymyalgia which is painful in the arms and legs and neck, Giant cell artritis which effects the eyes, and large Vessel Vasculitis which effects the heart muscles . I wonder if you have the Polymyalgia which is very painful, I was given a P.E.T scan with a dye which did show it all up......I was put on 40mg of steroids, and Methatrexate which did not agree with me, I am now on a new drug Tocillizumab , I have only had 5 injections so far, the consultant has told me it could take up to 12 weeks to kick in......but my main thing is pain in arms and legs , and exhaustion . I do get rashes on my arms only. Hope this helps , and goodluck ….
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