Has anyone experienced loss of collagen to the face muscles? Photo included

Another example of what has happened to my face during the past four years. It was the time I started taking Hydrea but it correlates with the time I became very ill with pneumonia. Ironically the worse I feel the more the eyes drop. At first it was the left eye, now it’s the whole face. My GP has done tests, and I have also under gone research to no avail. I thought you might find it interesting.

Regards

Anna

[hunter5582]

In the absence of any other finding, I would consider an unusual reaction to HU as a possibility. Dermatomyositis is one of the known serious adverse effects.

Does any of this look similar to you?

google.com/search?q=dermato...

I do hope you get to the bottom of this soon. Pehaps consultation with a MPN Specialist would help as well. Many docs use HU so rarely, that they just do not have the experience to evaluate its side effects.

All the best to you.

[Hidden in reply to hunter5582]

Oh my God. When I was 28 I got a dreadful flu but I kept working through it because there was no one else to do what I needed to do. I was a Marketing Manager in a regional shopping centre in the country near an oil rig. An oil company ESSO paid for me to bring large dinosaurs, curators, palaeontologists for a two week period. In that two week period I themed the stores to coincide with the dinosaur theme. I invited over 7,000 school students to have lessons with the curators and palaeontologists. During the evenings I hosted functions for owners who worked for the petrol stations. The exhibition stopped on the second Saturday and on the following Monday I was still ill but I went and played indoor cricket. I was diagnosed with a condition called polymyositis. It effected all my muscles and fell short of affecting my heart. That would have killed me. I was off work for three months and for a workaholic that was a big thing. I knew that I got the ET from that condition and I mentioned it over and over. My GP said he looked for it but the results came back negative. This condition comes in two forms, I never got the skin kind. But now having viewed some of the photos online some are identical. I was on a cruise early this year and I never got off the ship. The ships Doctor took nearly 40 photos of my eyes to send to a haematologist in Florida. My polymyositis is indolent. I had five years of vertigo where even my eyes rolled around in circle while I was having an episode. I have suffered from migraines as long as I can recall. When I was in the Army we had a parade at 7am every morning and it was freezing. I suffered from postural hypotension and I passed out religiously although that was years before the diagnosis of polymyositis. The pain was horrific especially in my thighs. I remained in hospital for a while and then I never gave it another thought until It occurred to me that the virus was so severe it was more than probable the cause of my MPN. I can't tell you how many times I have mentioned the polymyositis as being the cause and having it dismissed, but I knew.

Are you a Doctor? If I am able to help you with anything please ask. I think you are remarkable. I will make an appointment with my GP. My GP is a tick and flick guy. The Doctor I had in Brisbane when I first moved to Queensland was a genius. He was 68 then but was so thorough and the Doctor I met who finally diagnosed my pneumonia I though was exceptional. I now live over one hour north of Brisbane on the Sunshine Coast so that's why I had to change Doctors but my GP simply fills my scripts he is a bright man but I think that he may have been sued in the past because he is overly cautious. The photo of the red eyes is exactly what my eyes looked like on that shop. I had every COVID symptom except that it occurred in January I think.

Thanks so much you are a genius. Please tell me what your career is? Love Anna

[hunter5582 in reply to Hidden]

Thanks for the kind words. My degree (MA) is in Clinical Psychology. I have worked for 40+ years in the Mental Health and Substance Abuse treatment world. I have always had an interest in the physiology of behavior and had intended to specialize in clinical neuro-psychology, but never had the opportunity to finish with my PhD. So not a doctor, but I was trained to do research in getting my degree and in my career. I was also trained to do differential diagnosis for mental health/substance abuse disorders. These have proven invaluable skills as I have been on this health journey with a MPN, NF1, an arrhythmia, and other unique health-learning opportunities.

I am not really familiar with polymyositis, but I did just see that there is an overlap syndrome that can include dermatomyositis. understandingmyositis.org/m...

This is outside of the knowledge base I have; however, from a layman's perspective I am thinking that a medication that can cause dermatomyositis is contraindicated in someone with a history of polymyositis. Please do know that my own history of HU-intolerance likely colors my perception. For me, HU permanently altered the surface of my tongue and may have caused some long-term damage to my intestinal endothelium. Many people have a better experience with HU than what I had. I am not trying to say the HU is definitely the cause of what you are experiencing, just that it should be considered.

I can see where you have a similar situation to mine in having to sort a complex array of conditions. Sorting out what is what can be very difficult. I hope you will continue to post about what you are experiencing. Please share what you learn. Your experience and learning can benefit us all as we try to learn about MPNs and all the different ways the conditions can impact us. We truly are stronger together.

All the best to you.

[Hidden in reply to hunter5582]

When my tears dry I will write again. Doctorate or not you are truly gifted.

Always in my heart. I have a daughter born in 1982 I figured a while ago she may be your age hence name chosen for this forum. I was rambling last night I thought you may have felt I was manic.

Love Anna

[Hidden in reply to Hidden]

I forget your christian name, for some reason I think it is Charles. What is NF1. This is in part from a recent post. These have proven invaluable skills as I have been on this health journey with a MPN, NF1, an arrhythmia, and other unique health-learning opportunities. Viral hugs and kisses Anna

[hunter5582 in reply to Hidden]

I just happened on our exchange from several years ago. How are you doing? Did you ever get the issues sorted out?

BTW the 5582 is a combination of my birth year 1955 and my son's 1982.

We both have Neurofibromatosis Type 1, a genetic condition that can manifest in a range of ways. It is what caused the brain tumor I had removed in 2019. It caused heart issues for my son.

I hope you did get the issues you were having sorted out.

All the best

Steve