Thoughts please

[lou1972]

Hello all

It has been a while since I have posted on here. I dont want to say too much for the minute but to show you some pictures and ask for your opinion. As you can clearly see I am not in a good way at the minute and have been like this since January. That is when it started mildly and from March got much worse. I have been having some issues with my consultant and also asked my GP for a referral to Addenbrooks but they wont see me at present as only taking on urgent patients while COVID is happening.

I dred to think how bad I need to be to become urgent. I am looking for another persons take on this . I have this happening on both legs from the knee down. I am aware of what I was diagnosed in 2015 but myself and my consultant seem to arguing as to what this episode is.

Thank you

[Paprika60]

I have hypocomplementaemic Urticarial Vasculitis (HUV) and when I had a nasty inflammation attack like your on both legs below knee, I had to get on very high dosage of prednisolone (40mg for a week and then slowly down). Prescribed at A&E at Charing Cross. I am not suggesting that you do. Only doctors can do that. But I am sharing my experience with you. I also ended up with neuropathy on both legs and feet and it took me about 5 years to get it down to just mainly toes and half the feet now. I no longer have hives but I had the blistering, burning hives for about 14 years and all the pain and anxiety that come with it. And swelling (I had three different sized shoes!). I would suggest that you go to A&E and get help asap. Unless you get your inflammation down, you will continue and get worse.

You have my full sympathy. Hope you get help very soon and get better!

[lou1972 in reply to Paprika60]

Thank you for your message

I feel I am fighting with my consultant dermatologist at the minute as this started in January and gradually got worse from March

My consultant was insistent this was dermatitis and not a Vasculitis flare up. I was the one with the problem so I knew what was going on

They have put me on Colchicine to 3 tablets a day but I think I need Prednisolone. They did give me a weeks worth last month but I dont think this gave it time to do anything. I hate looking at myself and getting very depressed.

[Paprika60 in reply to lou1972]

I used to be on Colchicine for a few years after I managed to discontinue prednisolone (took 7 years to do this) so I absolutely felt defeated when I had to get back on steroids but that was the only thing that helped with bringing inflammation down. But colchicine didn't do much as I had all the symptoms still. I have been on hydroxycholoroquine (yes, that antimalarial drug that Trump keeps going on about!) twice a day for 6 years and am completely hive and swelling free. However, this medication has its own side effect which isn't good either. So there is no winning in this matter. One swops one problem with the other. It is matter of choosing which one is more tolerable, it seems to me. I have noticed quite a few times with vasculitis patients having problem with very unhelpful and stubborn specialists on this site. In every case, my suggestion is to change the consultant. Clearly you have already done that as you are going to Addenbrooks (I have heard wonderful things about Dr. David Jayne). So please be patient and don't beat yourself down. Be patient as you will get there. Meanwhile, be kind to yourself. Don't let yourself hate how you look. Always remember that this is temporary and you will get better!!!

If you get the right help, you will be much much better. It took me 15 years to find a right doctor (moved from three different hospitals and its specialists in London, an exhaustingly long process and took lots of patience and agony) but sadly he has now retired after taking good care of me for 5 years.

Good luck to you!

[lou1972 in reply to Paprika60]

Thank you x