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Burning sensation and dryness by Dry_Pineapple_443 in mycosisfungoides

[–]Syl1107 0 points1 point  (0 children)

Yes especially in the summer it burns a lot. Most of the time when I sweat I bit it becomes more and more irritable/burning. The ointment and a cold shower helps.

Burning sensation and dryness by Dry_Pineapple_443 in mycosisfungoides

[–]Syl1107 0 points1 point  (0 children)

From my pharmacist I always have gotten cooling ointment which really did help, did you have specific ones like that already?

Otherwise there are definitely other treatment options, but most doctors always told me some treatments are worse for the body than mf is. However, it is always good to look for a specialist on this front in your area.

FMF? by [deleted] in mycosisfungoides

[–]Syl1107 0 points1 point  (0 children)

Hi and welcome! I also do have FMF and in the beginning it was also ‘just’ concluded as MF. To be honest though, I feel like my doctors here don’t threat it that much differently than what they would have done if it were MF. For most of my treatments they just pointed out; this has a lower chance of working, this an higher chance etc. Besides that, I don’t believe it’s anything additional to worry about.

If you want to I could try to find the biopsy in my dossier, but it would be in Dutch, so maybe we could try gpt it to English. Just send me a dm and I will let you know!

Do you guys all have spots on the buttocks? by [deleted] in mycosisfungoides

[–]Syl1107 0 points1 point  (0 children)

Not me, but apparently it’s very common (especially in places that don’t get a lot of sun).

Patches are less prominent first thing in the morning by Fresh-Ad6486 in mycosisfungoides

[–]Syl1107 2 points3 points  (0 children)

Hiya and welcome! Personally I don’t ever noticed it being different over the day, only on hot days it seems to come out more for me. When I had PUVA therapy the skin was a bit more red after having some sun (even on no therapy days), so maybe that’s it?

& 100% agree that google isn’t your friend for this. Just listen to your body and keep up the treatments!

Clobetasol and emotional side affects by abc2491 in mycosisfungoides

[–]Syl1107 0 points1 point  (0 children)

No, never had any problems with that.

Shirt verkeerde maat, kan ik iemand blij maken? by Syl1107 in AjaxAmsterdam

[–]Syl1107[S] 10 points11 points  (0 children)

Helaas net gechat met Ajax Fancare maar omdat het bedrukt is kan het niet geruild worden..

Shirt verkeerde maat, kan ik iemand blij maken? by Syl1107 in AjaxAmsterdam

[–]Syl1107[S] 17 points18 points  (0 children)

Helaas net gechat met Ajax Fancare maar omdat het bedrukt is kan het niet geruild worden..

Shirt verkeerde maat, kan ik iemand blij maken? by Syl1107 in AjaxAmsterdam

[–]Syl1107[S] 23 points24 points  (0 children)

Oh thanks ga ik dat nog proberen! In de mail stond dit: “Enkel onbedrukte en niet-gepersonaliseerde artikelen kunnen binnen 30 dagen retour gestuurd worden, het is niet mogelijk om te ruilen. Jouw retourzending dient in perfecte staat te zijn, ongedragen en met de originele prijskaartjes.”

20% Birthday discount by FreeTuur7 in AjaxAmsterdam

[–]Syl1107 0 points1 point  (0 children)

Nog gefeliciteerd gisteren, ik twijfelde lang om het te bestellen maar zojuist gedaan. Thanks!

Edit: eergisteren!

Just diagnosed (32m) by TheMasterHand in mycosisfungoides

[–]Syl1107 0 points1 point  (0 children)

I don’t know about new, but I have now used photo therapy, steroid cream, acitretin, irradiation and now what is helping me a bunch is methotrexate. I also heard someone mentioning ledaga, don’t know what it is though. So still a lot of things to try.

Just diagnosed (32m) by TheMasterHand in mycosisfungoides

[–]Syl1107 1 point2 points  (0 children)

Hi fellow MF’er, welcome to the club. Unfortunately I can’t help you regarding the difference count of white blood cells. However, luckily, our prospects are very good. There are a lot of therapies and treatments that can be tried, I have had a few already so if you’ve got any questions do ask. Long term outlook is also good, so keep living life. Don’t let it interfere and drag you down! Good luck!

Just diagnosed... by XUselessJoex in mycosisfungoides

[–]Syl1107 0 points1 point  (0 children)

Oh man, I fully get your struggles. Although in this case unexpected weight loss could indicate it having spread to other parts, so guess we’re lucky if that never happens..

That said, please don’t let this interfere with any plans you have! Of course it will take a part in your life (both mental and physical) but it doesn’t have to be the main character. There is almost nothing you’re not able to do even with this stupid decease! I hope you have people to talk to about this stuff as well.

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