Now have spider veins on chest and face. What's going on ?

[Lainy1]

Has anyone experienced this since starting antiplatele therapy ? I've been trying to find out why I ha e these unsightly little veins now. Never had any issues with my skin before starting clopidogrel and hydroxy.

Best wishes lainy 🤗

[skipperL]

Dear Lainy - horrid things happen on Hydroxy - or maybe it's all just coincidence. I have developed nasty facial spots and dry flaky skin on my arms ( despite smothering myself with creams). I reckon we just have to put up with it - assuming the medication is an essential part of our treatment. All the best...

[Bridie123]

Hi lainy, you have only just recently started on your meds haven't you. I found I had alsorts of disturbing reactions to start with, but they do subside, then to be replaced by something else. In a strange kind of way you get used to it.,and when someone screeches arrh what's That! You just calmly say, oh it's probably my meds. At the moment I only visibly have dry almost scaly skin. Much better than the huge black bruises that had people tentivley asking if my husband did that! Ha ha 😮

[Lainy1 in reply to Bridie123]

Hi Bridie, yeah I think I'm on day 19 of meds and not too bad. Staying well hydrated helps. Trying to eat more fruit and veg too and cut out sugar. Takeaway foods is a no no now for me. Dry skin must be really frustrating for you, I take it you moisturize? It's so not fair for us MPN sufferers. My heart goes out to everyone struggling with this disease, it's mentally draining also.

Best wishes lainy 😙

[skipperL in reply to Lainy1]

Hi Lainy - I am using Clinique Body Butter at the moment but it's not doing much good as my arms are still flaking - quite horrid. Would like to wear short sleeves but its not a pretty sight. Going to try to find something stronger today if it's at all possible. Hope my consultant doesn't increase my Hydroxy on Monday.... Best wishes Skipper

[Bridie123]

Mentally draining is a simplistic way of putting it don't you think? I don't know about you lainy but my mental health has been on a rollercoaster.

I can't believe that I have a legitimate, proven disease and still no one believes my symptoms! It makes you want to scream 😲 it is only this site that has kept me together 😙 I hope your symptoms settle down, but be prepared for it to take a few months xxx

[Lainy1 in reply to Bridie123]

I could not agree more. I'm actually off work the now but getting myself geared up for going back. I don't know how to deal with the "but you look well" comments. Wonder if I've done the right thing taking time off the now if you say it takes a few months 🤔 oh well if i need to go back off again then so be it. My health comes first.

Have a good day Bridie 😙

[Bridie123 in reply to Lainy1]

Hi lainy, we're all different remember, I am 56 and known to be chemical sensitive. So it often takes a while to adjust. Having said that, I have been off work sick since December! I want to go back but keep feeling ill. To be truthful I can't see it happening, my job involves working in the heat and as you know that doesn't agree with blood disease. Xxx

[jeaniej1x]

Hey Lainy

Im just 4 weeks in on Hydroxy (1 every day) I took the first 2 weeks off work just to discover how they affected me in private. Because i had been having "strange" episodes of visual disturbance and disorientation before starting them, my G.P referred me to a Neurologist who then sent me for an M.R.I to check i havent had any T.I.A's. After speaking to my manager at work, i took a further 2 weeks off.

I should have been going back on Monday, but i have been getting more side effects lately. As well as the random bouts of fatigue which come on out of the blue, and backache, i have been getting breathless walking short distances. The heat has made it even worse. I have got the spider veins on my chest as well, some in sort of clusters, others just thready.

Spoke to manager again yesterday (who has been very supportive) and because i havent got results from M.R.I. yet, as well as the ongoing side effects, she suggested i have another 2 weeks off sick. Im so glad she did because i was struggling to admit to myself how these side effects have really impacted on me physically as well as mentally.

I dont feel "me" anymore. I used to march rather than walk, and i used to be able to go out all day, stay up late etc etc, and now i cant. But now im feeling guilty about being off. Guilty about the patients and even my colleagues ( most of them not being supportive and giving me the "but you dont look ill" routine)

My emotions are all over the place today, one minute "I need to be off and look after my health" and feeling very strongly about that, to "I need to go back to work im a fraud"

Before i started the meds, i didnt think about my illness, pretended to myself that nothing was wrong. Always said i was fine if anyone asked. Never took a day off work in 16 years. Now its right in my face that i am in fact ill and i cant ignore it anymore. Its sent me into a bit of a tailspin.

Im sorry to hijack your post with such a rambling reply, but i really did have to get my feelings out somewhere.

Good Wishes

Jeanie

[Bridie123 in reply to jeaniej1x]

Hi jeanie, just wanted to say, you sound like a mirror image of me.I certainly don't want anyone to suffer for as long as I have. So I am telling you now,you're not a fraud, what's happening is real, even feeling worse on the meds while your counts are getting better! Crazy but true. You believe you, we believe you.As for others... On bad days, you are going to have to get used to saying it's good I look great but today is a bad day. Xxx 😙

[jeaniej1x in reply to Bridie123]

Hey Bridie

Horrible circumstances that we feel this way, but it's good to know I'm not going mad with these mood swings! And trying to convince ourselves we are " better" when we are not. I can get up feeling better than the day before and think Hooray things are back to normal, then a couple of hours later fall asleep or have to slow right down while walking from the shops.

I am 56 also and worked full time until a month ago. By the time I took sick leave, the combination of shift work with early starts and late finishes and my illness, I was exhausted anyway. I felt like a very un sprightly 90 year old.

I think we owe it to our family and friends, not just ourselves to look after our health. I keep telling myself that, not to be a martyr so we are well thought about at work, but to think how my grown up kids and grandchildren would feel if anything happened to me.

As everyone keeps saying, so good to have the support of people on this site.

Take Care

Jeanie. XxX

[Bridie123 in reply to jeaniej1x]

You take good care too. Oh by the way I had mri as well for the same reason, mine came back all clear, I hope yours does too ☺xxx