ILL AGAIN.

[stevenjust]

I am just getting over a another 2 day illness that has just wiped me out. Ulcerated mouth, aching joints/bones, skin rash, itching and extreme fatigue. I am now getting these bouts more often this is the 3rd time this year. Is this due to me having ET or is it the drugs, I've just had my Hydroxy increased to 10000mg per week. Most of the time I'm fine and you wouldn't know I'm on chemo drugs. I am 41 and been on Hydroxy and aspirin for about 3 years but have believed to had ET much longer.

Anybody else suffer these bouts or is it just coincidence and not connected to ET.

If I can make a connection it would make it much easier when I report sick for work.

Justin.

X

[Mazcd Partner MPNVoice]

Hi Justin, sorry to hear you have been feeling so unwell, I've had my ET for 10 years now and been on aspirin since it was diagnosed and on Hydroxy for nearly 5 years, when I started the Hydroxy my bouts of extreme tiredness, dizziness and head pain did lessen, instead of having those symptoms almost daily the bouts just came every so often, sometimes for a day or so, sometimes longer, though every now and then I do have bouts like you are describing, when I feel extremely fatigued, very dizzy and sometimes with the aching bones, and I agree, it can wipe you out, I think these bouts are all part of the ET and meds and unfortunately something we have got to get through which can be very hard. I just wanted to let you know that I know how you feel and hope that you feel better today. Regards, Maz.

[Aime]

Hi Justin

I am sorry I can't help you with an answer as I have PV and only on venesections at moment but I just wanted you to know I am thinking about you and know what the "wiped out" feeling is like. The two weeks before I got blood taken off last Friday were awful, I could hardly put one foot past the other so every sympathy. Take care and hope you are feeling better soon. Aime x

[stricnine]

Another one here with sympathies on the 'wiped out' feeling ... fairly recently diagnosed and after a short spell on Interferon (not a good time!) am back on 'just' asprin .. but the ET symptoms are definitely there. Personally I don't think this (wonderful) weather is helping as I'm far too hot and now itch more or less all the time (used to be just after showering).. so not really looking forward to the summer.. but the tiredness is just overwhelming ...

Luckily for me work are fairly sympathetic in that I can hide away for a snooze (I find an hour can work wonders) ... rather than taking full days off... If I do try and push on through it, it just gets worse, whereas a wee break can spark me up a bit!

[stevenjust]

Thanks for all your replies it helps to know that the cause of this is my ET as so many people think that we don't have symptoms with ET or are just milking it. X

[Aime in reply to stevenjust]

I wish we were milking it!! Aime x

[ABman]

My hematologist put me on H.U. a few months ago. With the med. I received an info sheet on the drug, which warned me of several possible negative side effects. I've been having a few: mouth sores, sore throat, hair loss, more fatigue and drowsiness, and constipation. Frankly, I think I'm worse off taking this stuff! Could it be affecting you other folks??

Larry

[Mwalimu]

Larry. I have some of the same symptoms. Have been on HU for 20 months now and have found my body hair is reduced, head hair thinner, tend to have mouth sores and sore throat and get tired/ drowsy. Tried to reduce dose with consent of haem but that did not work out {although I do have one less tablet per week than at the beginning}, I feel I am better off with HU than without as everything is manageable -I am retired which obviously helps - Could you discuss reducing dose with your haemo?

Sallie

[bruddery]

Hi there. Yes I too can relate to the symptoms you describe. I suffered dreadful mouth ulcers and swollen tongue etc. whenever the haem increased my hydroxy. She referred me to the dental hospital attached to the hospital to see if anything could be done (usual ulcer meds did not work). Dental hospital prescribed steroid tablets to dissolve in water up to 6 times a day - (Betnesol). This was used as a mouthwash holding it in mouth for 5 to 10 minutes on affected area. It worked. Ulcers still appear but as soon as I feel them coming on I start with the steroid. Hope this helps.

[SteveY]

Hi Justin - Sorry to hear you've not been well, I have ET and I've just recovered from a bout that wiped me out for 5 days with aching muscles and a sore throat but no rash or itching.. My bouts are not as frequent as yours. I'm on Interferon and Hydroxy (went back onto Hydroxy in January after being on Anagrelide) to control my ET. I find it very hard to point the finger to what is making me feel lousy, I think they both effect each other at times. I'm 44 and was diagonsed 5 yrs ago

[Swede]

Hello,

Just back from holiday and the third day of my holiday was a total disaster.Soo tired and dissy, out of it. Couldn't bring myself to do anything. Then, the day after, everything was as normal! Yes, I do have these periods now and then and noone seems to understand that that is for real so I'm misunderstood asweell!

Poor me....;-)) (and everyone else...)

[Aime]

Hi Swede

So sorry to hear about your third day of holiday. I am scared now when planning holidays or outings that I won't be fit and try to look for easy options where I can rest if necessary but it annoys me because it is like giving in to my PV! We all understand on this forum how you feel - hope you feeling a bit better now. Kind regards Aime

[sjdard]

Hi, I to have recently been having bouts of sore throat, ache and pain and the feeling of being completely washed out. It seem to last a 2-3 day and then feel better. This has happened 3 time now in the past 8 week.