That's what I've got. It started about 2 years ago, with itchy forearms and very occasional sharp twinges in my ankles going up stairs, but I suspect I may have has an episode of it a few years before. I was probably the fittest I've ever been at the time. However, the itching only got worse and worse, despite all the antihistamines, steroid creams and other treatments the doctors gave me. It got to the point where I would wake at night with the most intense itching I've ever experienced, which felt like I was being bitten by ants all over my arms, chest, back, neck and thighs. I would scratch myself raw, and the only relieve was an extremely hot shower. This would calm the itching, giving me about 15 minutes to get to sleep before the itching would start again. After a while, all my bedding and clothing was covered in blood stains.
Six months after the itching began, I eventually went to my gp and insisted they referred me to a specialist. About a week later, the itching stopped almost overnight and I put it down to an allergy to dust mites. However, a month later it was back, but this time I also had tender bumps around the nail beds of my fingers, plus mild joint pain in my fingers and knees.
For about the next 9 months, while I waited for my appointment to see a consultant, I had cycles of 2-3 weeks itch free, followed by 3-4 weeks of intense itching. During this time, I went to Brazil for a month, during which time I was almost disease-free, with only a few twinges in my one knee. When I came back home, things got much worse tho.
By this time, despite cycling 13 miles to work, when I got there I could barely get up and down the stairs, and if I squatted down on the floor, I would need help to get up again, the pain in my knees being so intense. Additionally, the soft tender bumps on my fingers had hardened, but were still tender, and had spread up my arms to cover by shoulders and the back of my neck. I also had strings of them on my face and ears, particularly where I had old scars. One day I had to spend pretty much the whole day at work on my feet, which resulted in my knees swelling up like a balloon and the next few days off.
Around this time I finally got to see a dermatologist, who took a biopsy and sent me for a bunch of scans and tests and diagnosed me with MRH. He put me on steroid tablets, along with some other things (dmards), and referred me to a rheumatologist.
That was last September, and since then I've pretty much been on steroids the whole time. Each time the dose tapers off, the symptoms start to return. On the plus side, there had been very little itching, and what there had been I can relieve by taking a piriton tablet. Additionally, the boils on my face, ears, neck have completely disappeared, and the ones on my fingers are almost gone too. The joint pain is minimal now, although I still get twinges.
However, last month, while in Brazil again, I managed to get zika virus. Guess what the main symptoms are? Intense itching and joint pain... aaaarrgghh!!! That has finally subsided, but now I'm off my medication, as they believe it can make the virus resurface.
I'm still on a low dose of steroids, and I'm doiing ok for the moment, although I can feel the zika and mrh waiting in the background for a chance to come back. It's been a hell of a two years, and I can't help wondering about the similarities between the zika and mrh symptoms, and whether I may have picked something up on a previous trip to Brazil? The thing I have is so rare there is very little known about it or what causes it... I have offered to undergo more testing to see if they can get to the bottom of it, but they don't really seem interested, although the rheumatologist has been fantastic at treating my symptoms.
Sorry for the long post. This is the first time I've really written down an account of my experiences over the last 2 years. There is very little information available online about my condition, and the only website dedicated to it informs me that I now have a 75% chance of getting cancer in the next few years, although I think that's just bs.
Six months after the itching began, I eventually went to my gp and insisted they referred me to a specialist. About a week later, the itching stopped almost overnight and I put it down to an allergy to dust mites. However, a month later it was back, but this time I also had tender bumps around the nail beds of my fingers, plus mild joint pain in my fingers and knees.
For about the next 9 months, while I waited for my appointment to see a consultant, I had cycles of 2-3 weeks itch free, followed by 3-4 weeks of intense itching. During this time, I went to Brazil for a month, during which time I was almost disease-free, with only a few twinges in my one knee. When I came back home, things got much worse tho.
By this time, despite cycling 13 miles to work, when I got there I could barely get up and down the stairs, and if I squatted down on the floor, I would need help to get up again, the pain in my knees being so intense. Additionally, the soft tender bumps on my fingers had hardened, but were still tender, and had spread up my arms to cover by shoulders and the back of my neck. I also had strings of them on my face and ears, particularly where I had old scars. One day I had to spend pretty much the whole day at work on my feet, which resulted in my knees swelling up like a balloon and the next few days off.
Around this time I finally got to see a dermatologist, who took a biopsy and sent me for a bunch of scans and tests and diagnosed me with MRH. He put me on steroid tablets, along with some other things (dmards), and referred me to a rheumatologist.
That was last September, and since then I've pretty much been on steroids the whole time. Each time the dose tapers off, the symptoms start to return. On the plus side, there had been very little itching, and what there had been I can relieve by taking a piriton tablet. Additionally, the boils on my face, ears, neck have completely disappeared, and the ones on my fingers are almost gone too. The joint pain is minimal now, although I still get twinges.
However, last month, while in Brazil again, I managed to get zika virus. Guess what the main symptoms are? Intense itching and joint pain... aaaarrgghh!!! That has finally subsided, but now I'm off my medication, as they believe it can make the virus resurface.
I'm still on a low dose of steroids, and I'm doiing ok for the moment, although I can feel the zika and mrh waiting in the background for a chance to come back. It's been a hell of a two years, and I can't help wondering about the similarities between the zika and mrh symptoms, and whether I may have picked something up on a previous trip to Brazil? The thing I have is so rare there is very little known about it or what causes it... I have offered to undergo more testing to see if they can get to the bottom of it, but they don't really seem interested, although the rheumatologist has been fantastic at treating my symptoms.
Sorry for the long post. This is the first time I've really written down an account of my experiences over the last 2 years. There is very little information available online about my condition, and the only website dedicated to it informs me that I now have a 75% chance of getting cancer in the next few years, although I think that's just bs.
...i'm sure our thoughts are with you. 
