So....having spent the past 3wks trying to keep my Urticaria rash under control with steroids and prescription antihistamines, I'd managed to convince myself that I was experiencing an episode of vascular urticaria.... a more serious and 'longer-term' form that would require a higher dose of steroids and be yet one more thing to add on alongside my PMR.
I'd looked it up and I seemingly had all of the corresponding symptoms....hives all over arms, chest, legs etc that were slow to respond to treatment, some skin discolouration whilst they were healing and what I perceived to be little blood spots under skin (petichiae) Self diagnosis! What a wonderful thing!
This morning I had my rheumatology appointment with Prof Dasgupta, who was extremely thorough in his questioning and examination, and listened to everything I had to say (for once 😄) answered all my questions (for once 😄) and offered me explanations that I could make sense of (for once 😄)
He reassured me that I most definitely did not have vascular urticaria and that the 'blemishes' are often part of the healing process after a bad episode. He went on to say that it can take several weeks for it to settle right down and that the blemishes will probably 'fade & return' for some time to come. He examined my skin and then looked at me and said; "Hundred percent that's not vascular"..... well he is the man who should know???
I'm reducing down from 25mg pred every 5dys by 5mg till I get to 10mg and then a slightly slower taper down to what had been my previous current dose of 6mg. From there it'll be back to DSNS tapering regime. If the rash begins to re-emerge then I've to ask my GP to increase antihistamine dose rather than steroid dose.
Most of the time it's a much better thing to 'research' and be clued up so we're in full possession of as many facts as possible......this enables us to make better choices and safer judgements, but occasionally it can unfortunately do the opposite and needlessly make us fearful and anxious. What seemingly looks so obvious and real may in fact be completely incorrect, as in my case! I'd worried and stressed over something that I was sure was the problem when in fact there really was no problem.
Yes!.... it's true that all those symptoms could have been pointing towards a diagnosis of vascular urticaria but other warning signs would have needed to be evident too. In my heightened state of anxiety, I'd failed to absorb any of that.
Sometimes this situation can happen in reverse..... where we convince ourselves that everything is really ok but in actual fact we are experiencing some kind of health emergency that actually does indeed require attention.
The Internet can be an amazing tool for research and discovery but it's sometimes not always that helpful, accurate or reliable. It can't process an answer to match each individuals own set of circumstances and it's 'one size fits all' approach to answering questions can at times mislead us.
This is why we must always seek professional medical help when something new or different emerges. Just have whatever it is checked out and only rely on sources of information that can respond with your own individual circumstances in mind. (Eg. our forum.)
I'm so pleased I faced my fear and arranged to see the Prof. I'm once again feeling much more reassured and settled......... until the next 'bridge' to be crossed emerges! 😄
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Kendrew
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I saw your other post briefly while l was away but WiFi was spasmodic to say the least….
My allergic son suffers from Urticaria & l saw one heck of an episode before Christmas where baby formula had run down his arm! (it took me back to when he was little l can tell you)
He used to have good old fashioned Piriton as in those days there weren't many other options (he’ll be 40 this year) but we always put on a thin layer of hydrocortisone where the rash was & that would clear it up…..
Sorry you’ve been through so much with it - any thoughts to the cause or did you explore that in your other post?
It’s hard to catch up & get back in the swing when you’ve away……
Hi Angela. So good to see you back. Have you managed to stay reasonably well?I've absolutely no idea what caused my Urticaria. I've racked my brains and the only thing I could think of was some prawns I had the day before it all erupted. I eat lots of prawns though and never been an issue previously. The Prof said I'd probably never know.
Thankyou. It's definitely a huge relief but I'm still fully aware that I always need to be vigilant and that this condition is unpredictable and can change in an instant. For now though....all is good. 👍
So pleased this has all turned out well for you.😀When I changed my GP practice shortly before PMR hit and I was well and on no medication whatsoever-sounds familiar?-the nurse carrying out my full health check said, "DON'T Google!" 😂😂 During the past 4years I have spent more time googling than cooking, plus, of course, reading and finding out so much from this forum.
However, your advice is sound and thank you.
PS. I'm fairly sure that I have had my last appointment with the Prof. I often wonder what the outcome would have been for me had he not diagnosed my asymptomatic LVV and I fervently hope his successor will be equally diligent.
The nurse is right about not using Dr Google!!!!! Dr. Google can cause people to get preoccupied with their bodies. It has its place but is like an addiction.... difficult to stop!
I would imagine that Dr. G has been used more frequently during the pandemic when patients have found it difficult to access health care services. Most online advice ends in something like, "If you are concerned seek medical advice." 🤦🏻♀️
I was glad to see from your post that you have done the same thing I do almost every day. You’re right I had to join this group because I knew so little about GCA and I feel the 2 rheumatologists I saw sugar coated everything. From them it sounded like I would be fine after 6 months and then be done with it. Nothing was ever said about relapses or prednisone withdrawal. But when I felt so awful all the time I started researching and realized I had to find out more info. I’m glad I did but at the same time I too think the worse of every symptom. I read about people here who have osteoporosis, heart attacks, high cholesterol, diabetes etc and I think I have them all even though every test I take comes out ok. I worry myself sick.I know part of it is I have too much time on my hands. Because of Covid I stay pretty isolated so it gives me too much time to think.
I’m glad you don’t have vascular urticaria and once again thank you for thoughtful and informative posts
It's very easy to panic about everything and usually I'm fairly calm and grounded about my condition, but this new setback did alarm me somewhat. However, although I will continue to be vigilant and cautious, I'm also going to try not to worry about things that haven't yet happened!Thankyou for your kind comments.
Evening Kendrew and really good news regarding the rash. Let's hope it gets sorted soon. I guess the Prof retiring will leave a fairly big hole for someone to fill.
Thankyou. Yes.....he's going to be sorely missed and definitely a big loss for PMR/GCA patients who've benefited from his expertise and interest in the condition over the years.
Glad you were reassured it wasn't vascular. I've had problems with rashes and 'allergies' and two different rheumatologists have told me they see such things 'often' (I don't know how often is often) with rheumatology patients but don't know why. They have a joint rheumatology and immunology clinic, and the consultant there diagnosed spontaneous urticaria. I also got referred to dermatology and the consultant told me the rash on my legs is just venous eczema, together with keratosis pilaris, nothing autoimmune at all, although he had never heard of RS3PE which was a possibility mooted by rheumatology. 100% confident he said. Of course, with the aid of Dr Google meanwhile I convinced myself that it wasn't just a rash it was folliculitis or follicular cancer. All pictures of spots look the same to me, which is why I need to trust the experts and like you say, never assume the worst!
It’s wonderful you are reassured and you’re so right, we can research online and find a potential diagnosis but without professional (good) advice, it’s easy to be barking up the wrong tree! I hope you keep well - I had horrendous urticaria in my twenties and was admitted to A&E, it eventually went and I’ve never had it again, so I’m hoping you’ll be the same x
I had been following your original post with the picture and thought at the time ooh that looks just like my rash did. I say did as it was back in 2004. I had an angiogram the previous 3 days before with contrast. At the time the operator asked me if I was allergic to shellfish? I said no which I’m not, I had and do love and eat prawns! So to get the rash a few days later was at that point a mystery. I was admitted to Hospital stayed overnight and given a quick IV of steroids and sent home with them plus anti histamine cream. They said the , hives/rash/ itch were caused by iodine from the contrast dye and yes prawns contain iodine though in small amounts. I now refuse scans with contrast as I don’t want the same reaction ? I actually still eat prawns and all good, though I am a bit wary of things like a boulliabaise. Aren’t our bodies strange? The way they react?I guess you will never know what caused it. but you will probably be wary as I am. So pleased you are feeling better and that your skin is looking better too.
Thankyou for sharing your experience. It made very interesting reading. I'll always be wondering what caused it but guess I'll never be completely sure.
Well that is good news, glad you have been reassured. I agree that Dr Google is not the best way to go. Even my teenage grandson has fallen down that rabbit hole to self diagnose 🙄 Sorry to hear Prof Dasgupta is retiring. He will be sorely missed I'm sure but good you got to see him one last time for good and informed advice.
Yes , by matching my symptoms to a know cause I concluded that I had adrenal insufficiency. I paid via private insurance for the test , only to find my adrenal function is normal , great news .
I’m glad your rash has subsided, Kendrew. Isn’t the skin an odd thing?
I’ve always had a really sensitive skin and still don’t know where my recent bout of uratica came from. The only thing that I’d had that was different was that I’d had some non-alcoholic wine the night it erupted, so the moral of the story is.....stick to the alcoholic stuff🤣
Having been on the fexofenadine the rash has completely subsided, although I’m still having terrible itching around my bra fastening area. I’m going to invest in some pure cotton underwear to see if that helps.
Good luck with yours and hope it soon subsides even more.
I am so happy you got a proper diagnosis to ease your mind.I think having PMR makes it hard to distinguish what's our disease or something entirely different.Glad you re on the mend💕
So true Kendrew!! In the 5+ months it took to find a Dr. and get diagnosed with PMR, which included two visits to the local emergency dept of our hospital, I did loads of internet research. As things were being ruled out, in the end, when I was in the most pain and at my worst, I resigned myself to the fact I likely had MS. This of course further worsened my state of mental health, ramping up fear based on no conclusive test results/evidence.
With diagnosis comes huges relief.....especially if you've been struggling pre-diagnosis for an extended time.
Glad to hear it is not the vascular version you were dreading. Wishing you healing as it continues to settle down.
Thankyou for your kind words. ....and I'm so pleased you don't have MS. Hopefully you're beginning to feel a bit better and that'll help you feel more positive too. Take care.
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Is PMR always bilateral?
