Spotty face

[Skye333]

Has anyone noticed red splotches on their faces. Mine are getting worse now it looks like I have measles. I have MF and I wondered if it's due to that!

Janet x

[Aime]

Hi Janet, I get the blotches too - they do come and go a bit depending on how warm I am. They are also worse when I need a venesection. I have PV. Kind regards Aime xx😺😺

[Inca]

I do Janet,and on my chest,sometimes down side of breasts,come and go,like Aime ,I find they are worse if I am warm or stressed.Do take care tho ,as Ihad a carcinoma that started like a red blotch,it didn't disappear ,stayed and became worse...just about to have another checked out...P V and Hydrea I am. Best Wishes ,Sally

[Skye333 in reply to Inca]

Thank you Sally I am going to see Professor Harrison in a couple of weeks so I will definitely ask her about it.

Janet x

[socrates_8]

Hey Janet...

Thanks for asking this question, as I wonder if it might not be related to a question that I have been asking my Med' team for some time now, and without a reasonable response to date...?

I have been experiencing blemishes (bumps) all over my cranium over the past few months. I do occasionally have them on my face and neck as well. I am tempted to make the connection here that it is a combination of the Ruxolitinib + Acclovir+ my MF symptoms... however, I am speculating at this point.

Do any of you also have these blemishes on your heads... Is it uncomfortable to comb/brush your hair etc?

I shall also be interested to learn what Dr Clare has to say about the matter...

Thanks Janet

Steve

(Sydney)

[Hidden in reply to socrates_8]

Hi Steve, yes I get spots, sometimes really painful ones, on my scalp and behind my ears, very painful if I catch with my brush! I think it's to do with the Ruxolitinib, my haem at Kings College, Donal McLornan, asked me whether my skin was ok when I saw him last. Luckily the acne-type spots on my face had cleared up, after over 20 years of acne rosacea I wasn't too happy to see them back! I use a natural breakout cream from the chucklinggoat.co.uk and that certainly helps stop them hanging about too long, it has tea tree oil in it so it's antiseptic and drying but gentle on the skin. I know you're in Australia so maybe find a natural product store that can offer a tea tree shampoo/cream that isn't too strong? Good luck with it Steve, best wishes, Christine

[socrates_8 in reply to Hidden]

Thanks Christine...

Much appreciated. At the present I keep touching and scratching them, and then I apply detol to them, which of course makes me smell like antiseptic for a few hours...

I will take your very wise advice, and find some Tea-tree oil (shampoo), and see how that helps.

Thank you so much for your prompt response Christine...

Best wishes

Steve

[Skye333 in reply to socrates_8]

Hi Steve mine aren't really bumps they are like measles and just on my face.

Janet x

[socrates_8 in reply to Skye333]

Hey Janet...

The ones on my head are more like bumps & blemishes. However, the oes that come and go on my face are more like small welts... if that makes any sense...?

In any event, thank you for your reply also...

Steve

[linds]

Yes Steve I get the bumps on my head and they are quite sore to touch. I also have MF and take Rux but I never connected the two things with the bumps. They come and go and fortunately they are under my hair not on my face! I will mention it on my next visit to Prof's clinic.

Linda

[socrates_8 in reply to linds]

Hey Linda...

In an odd way, I suppose it is somehow kind of comforting to hear that others are also suffering from a similar type of affliction.

My Haem' suggested having a biopsy undertaken on some of my very small bumps, just to be safe...

However, I do not really know if I would want to know, that I have a further issue to add to my already much challenged existence...

Not feeling very courageous at the present...

I have decided to let it all go for a while longer and see what if anything augments...

My last bloods (May 10), showed a further significant fall, and came down to 754 from 862. My Hb has also fallen sharply of late. A downward trend seems to be developing...

Hence, after a somewhat stubborn commencement to Ruxolitinib, it finally appears to be functioning...

I have also just changed the type, and dosage, of Aciclovir 800mg bd, to Valaciclovir 500mg sd.

Maybe these changes might have some sort of latent effect...? Who knows, maybe my bumps will even dissipate with time...?

It was actually Janet that started this thread, and hopefully some of the messages received will also help her with her situation...

Thanks Janet, Linda and everyone once more...

Steve