Patient Power

[Garden987]

I have posted before about peoples' opinion and/or usefulness about now Patient Power. What has alarmed me having just read one of their forums is" cognitive issues,cytosine levels, dizziness, abdominal distension, not able to eat as much.Exercise is encouraged - had to have wheelchair today as my legs don't want to carry me. They have no answers, and it is an American site but I wondered if any of you have found it useful or not. We don't appear to have any answers here . My condition seems to be worsening although my bloods are "perfect" Platelets now 320 and all appears well in that respect. Any thoughts, people? Thanks. Mary

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[Superwoman]

Oh not nice Mary, your playlets are really good, could it be all this heat that we have had, and are you keeping well hydrated this is a must in this weather.

Have not read this website, but do suffer some bouts of dizziness from time to time, had an accident last weekend ended up in A&E one of the things they did was a cat scan which proved that all was well, blood pressure and ECG all was normal and so on. They have said that the heat could off been a factor and that I just blacked out. But know how you feel, I do keep my exercise routine up as well this really helps and avoid foods, that bloat my tummy, it is all trial and error to find out what is causing it, I do not think it is the condition mine being E.T think the heat has a lot to answer to.

Hope you feel a lot better soon.

Jean x

[Garden987 in reply to Superwoman]

HI Jean. No, don't think it's the heat. Have just been getting steadily weaker and dizzied - I'm 79 . Walking up three flights of stairs to the loo is enough exercise for me! Thanks for replying and hope you have recovered from your accident. Best wishes. Mary

[fee13]

What meds are you on? I've never been able to distinguish ET symptoms vs medication symptoms. I was on hydroxy for 3 years and changed to interferon 7 months ago and have been exhausted and weak throughout with some days hardly able to walk.

[katiewalsh]

Hi. I’ve thought in the past that the presentations are often filled with little of substance but a lot on all the “promising” work. None of which are yet available or even described in much detail. But certain speakers tend to do better than others. I personally like this forum much better than patient power but to be fair, I haven’t watched or read things on that for quite awhile. Katie.

[Garden987 in reply to katiewalsh]

Hi Katie. I've been feeling more and more exhausted lately. Have ET JAK2 CALR and. Take Hydroxy. My haemotologist isn't keen to change it. Maybe it's time to stop watching Parient Power! Thanks for replying. Mary

[Kelly2 in reply to Garden987]

Hi Mary, what you watched was probably a case of enlarged spleen which pushes the stomach and thus does not allow one to eat much. We are all different so we must not get alarmed. Have you told your doctor how you feel? Maybe if you took some supplements? I like Patient Power. Take care

Kelly

[katiewalsh in reply to Garden987]

Hi Mary. I’m so sorry to hear that you’re having a rough time right now. Sounds very difficult. Do you have a really good hematologist? Take care and stay in touch with all of us here. xx Katie

[Wentry]

I actually like Patient Power, it's quite interesting to find out what research and trials are going on and what is potentially going to be available for those who are progressing, and you can join live webinars or news updates and post questions that they will answer. I don't use it as a support forum, more for information. It is US based so obviously the focus is more in what is going on there, but then this site understandably has a UK focus. I'm in NZ and there isn't much information here and no MPN specialists, we now have our own support FB page just for NZ, but we get our information where we can from articles and research published and released in other countries. Sorry that you're feeling so dizzy and weak, I hope you manage to find out what is making you feel like this and that you feel better soon. Has your haematologist said why they don't want to change from the Hydroxy? Have you been on it long?

Wendy

[Garden987 in reply to Wentry]

Hi Wentry. Thanks for your reply re patient power. What I have read so far worried me to the extent that I'm going to give it a miss for now. My haemo. Says taking a different drug - Rutuxalib? Can cause worst side effects than Hydroxy also it's cheaper! Good luck. Mary

[RosemaryHarper in reply to Garden987]

Hi Garden987

I was on Hydroxy for a year and had many side effects - have now been switched to Ruxolitinib and feel much better - but I suppose we all react differently. Hope you feel better soon.

[Tico]

Hi garden987,hope ur feeling better soon,u said in ur reply to katie that u ad etjak2 & calr. Has ur haematologist now difinitive diagnosed u wiv both these mutations, as upon looking at ur previous posts u say u was diagnosed wiv jak negative,jak2 then calr. Have u ad repeated misdiagnosis's?

[Wyebird]

Hi zgarden987. I’m 62 and although my platelets fluctuate between 380 and 456 and. Hospital happy with me I too feel I’m getting worse.

[JackLina]

Are you suffering from the side effects of taking hydroxy?

[Garden987 in reply to JackLina]

HI Penelope. No, don't think so. Have been taking it since 1914 and had horrendous side effects. I just don't feel well - could be anything. To see haemo. NOv.1st but seeing GP tomorrow. Thanks for replying. Mary