I had an appointment with the haematologist last week, cutting the hydroxy to eery other day had caused my platelets to rise to 740 from under 400 last month, so he said go back to taking it every day alongside the Momelitinib. Haemoglobin has stayed over 100.
However since going back to daily hydroxy I have swollen feet, legs and hands. Not sure if it’s the hydroxy or something else. I do have arthritis in most of my joints including my hands. My skin feels very tight.
I’m going to aqua fit today and hoping that gets my circulation going more and helps reduce it,however if it doesn’t I’m going to phone GP tomorrow. I’ll try the specialist nurses later today, but they always deny anything is to do with the drugs!
I’m still waiting for my fast track urgent appointment about the lesion on my arm, I spoke to dermatology yesterday and they said it should be before the end of the month (short staffed etc)
I wondered if anyone else had had the same problem?
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lizzziep
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Hi Lizziep,I too get swollen legs ,feet & hands.Like you I am a bit athritic in various joints.I am on Rux since ‘progressing ‘ to M F from PV.I have discussed the swelling with my blood consultant & my cardiologist.Both have examined & both say that as long as swelling goes down when resting ….legs slightly raised ,cushion or similar there is not a serious problem.Hands are probably from winters of being outside ,we bred horses in the North East of Yorkshire,& from sculpture work.Do your limbs ache? Mine do esp at night keeping me awake. My friend does the aqua exercise just to keep fit ,but as I am now 85 I don’t want to show off my skinny arms & legs or when they are puffy!I walk as much as I can with dogs & hubby in case I hit the brick wall& use my exercise bike in my studio when legs swell with standing to work.There is an ointment called Efudix which is excellent for the nasty lesions that like to appear anywhere ,stops them getting worse .Need to have prescription from Dr or Dermotologist.Good Luck with your probs,my bloods have just tumbled so I will get a call from hospital to go in for transfusion.What a crazy disease an M P N is,never know the next problem .Keep positive 😍Sally
Thank you, yes my legs ache at the end of the day, and my hands lose their grip, I try not to sit too long, or I’m stiff as a board! I feel better for going to aqua fit. I haven’t had any swelling like this for a long time, so hoping it goes as quickly as quickly as it came. It’s not so much the MPN’s that cause the problems but the drugs, although we’d be in a worse state without them!
My eldest son’s mother in law lives in Middleham in North Yorkshire which has lots of racing stables etc in the area. She has such beautiful horses passing by every day on their way to the gallops. All the stables have an open day to raise money for charity and it’s wonderful to go round them.
Oh yes ,me too cannot sit too long or get up stiff as a board ,lose grip with my hands too ,sure it is all the different meds ,Yes know Middleham well,we had good National Hunt race horses in our younger days,loved our racing .How great to watch the beautiful race horses passing by.We have a good mare ,just retired she is with our daughter & we have her in foal now so hoping for a good foal,hoping too I can last long enough to get to U K to see the foal.I doubt I will see him/ her race but you never know ,some M P Ners get to 90!Our daughter is involved with racing charities so gets to the open days which are lovely for non horsy people as well.Keep well Lizziep ,good to know others suffer pains even tho we keep exercised.🤸♂️😂Sally
Sound like your arthritis is flaring with the cold weather. Mines doing the same and I've developed tendonitis in my shoulder and elbow, the worst pain I've had in years.I find a heat pad helps with the swelling.
That’s interesting ,I live in normally mild winter area in France & at the moment we have very cold weather,even a frost early morn,which goes with the sunshine but it’s unusual to be so cold ,hubby as well as me is with aches & pains ,had to get him thermals.We are pretty ancient so bound to have aches & pains ,just not usual where we are !🤯
As you suspect, peripheral edema is a possible HU adverse effect. Various types of skin lesions are also potential adverse effects. Proper assessment is needed to sort out what is actually going on. If it turns out that the HU is responsible, then perhaps you can find a different combination medication strategy or alternatively decide that it is more tolerable to let your platelet levels float up higher.
Adding these issues to arthritis and the other issues we experience with aging is no picnic, but it beats the alternative. As my Mom used to say "Aging is not for sissies."
Thank you, I’ve now got an appointment with dermatology, 22nd January, whether I’d have got it if I hadn’t phoned to see when it would be is another thing!
I feel better for going to aqua fit, getting moving more definitely helps, I’ve got two more classes booked this week. I’ll see what the results are next month and see if any adjustments in medication can be made.
I’ve seen a GP today, he’d never heard of MF, I had to explain what it was and about the medication. Anyway he gave me a good examination and checked pulse etc, all ok. Because of course when I got there my legs had gone down a lot, he seemed to think it was a combination of meds, arthritis flare up and reaction to the extremely cold weather we’ve had. Anyway on the way back to “normal” now.
Not surprising the GP did not know about MF. The good news is that it sounds like a doc who is willing to listen and learn. That is a great doc to have on your team. the doc's theory abou a combination of factors makes sense. hopefully, it will be better soon.
Hi … I am having similar symptoms .. also have to factor my aging into it as well .. I am 68 … I have learnt over the years that I need to stay mobile and yoga helps .. I guess it is true if you don’t use it you loose it .. easy to say when we are sore … but I don’t like to give in and take it slow when I need to .. wish you all the best
Hoping you feel better soon. If possible, try lying on floor with legs up in air, can lean them on the wall. Gravity has helped after I worked multiple shifts in ICU.
Hi Lizzie, I have an MPN and have been suffering a swollen foot/leg for some time. I tried a water pill but it didn't work; I stopped taking it and now my GP has prescribed 2 more pills to be taken at lunch time. I'm also wearing the compression stockings he prescribed, but I think I could take a tighter compression. I have compression fractures and I sprained my ankle on Xmas Eve. What a way to celebrate my 80 birthday! It's healing well, though A & E were well surprised nothing was broken, looking at the swelling and bruises. I suppose I have to be patient for things to happen, and the hard part is keeping my feet up, and that's not to say both feet aren't swollen, it's just that one has been noticeably so since I had stitches removed from my ankle four(?) years ago. I'm not on any medication to cause this. I see my haematologist next month; she might know what's going on.
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