Et & raynauds phenomemon?

[Tico]

As anyone on this forum who as et jak2 postive been diagnosed with raynauds phenomenom?

[jane13]

yes, but had Reynaulds before I had mpn

[Annie46 in reply to jane13]

The same for me Jane

[Mamarabbit02 in reply to jane13]

I had raynaud's phenomenon for few years and now diagnosed with pv and awaiting to get referrals for hematology

[Sabine987 in reply to jane13]

The same for me since puberty (diagnosed with PV at age 46)

[Splb3317]

Hi Tico

Yes, since being diagnosed with PV, I have Raynauds, but only in the forefinger of my right hand. All the best. Sandra

[Tico in reply to Splb3317]

Hi,have u had any complications wiv ur pv?

[Splb3317 in reply to Tico]

Hi Tico,

No, I've had PV for almost 4 years and it's well controlled with 1 500mg tablet of Hydrea, Monday to Friday, plus a daily baby Aspirin and Allopurinol for gout which began with the PV.

The Raynauds is really painful, when it's on and when the blood is beginning to come back to the finger. I've mentioned before on this forum that my sister (who doesn't have an MPN), has terrible Raynauds in the Winter and inserts something into her gloves, that keeps her hands warm. As soon as I get the details, I'll put them on here. All the best

Sandra

[socrates_8]

Hey Tico... :–)

Just wondering if you are on low dose aspirin or not?

The reason I ask is that I had something that might have ben diagnosed as Raynauds, however, after I was diagnosed w/ MF, and within the few months following all the symptoms of Raynauds disappeared.

In my own case, I believe that the improved circulation via the aspirin (acting as a blood thinner), removed the condition for me completely...

Best wishes

Steve

(Sydney)

[Tico in reply to socrates_8]

Gud day steve, was on aspirin & hydrea, now hydrea & clopidogrel because ov 2 strokes due 2 etjak2+.wishing u all the best. Tico

[teddy21]

I have raynauds and jak 2 positive et. I’ve been on interferon and aspirin for about 7 years. Unfortunately the raynauds hasn’t improved if anything it’s getting worse with age (I’m 43). I have nifedipine to use as and when but generally just suffer it. Loving this hot weather as no where near as bad!

[Tico in reply to teddy21]

Hi teddy, u lucky thing. I'm suffering even in hot weather! I agree, mine seems 2 be getting worse wiv age. I'n 48, i've had etjak2+ 10yrs.i' ve heard ov nifedipine, who prescribes it 4u, gp haemo? Wishing u all the best. Tico

[teddy21 in reply to Tico]

I got referred to rheumatology who then asked by GP to prescribe it.

[Tico in reply to teddy21]

Did haemotologist refer u 2 rheumotologists for any reason other than raynauds symptoms? Tico.

[JackLina]

I have it big style. I've had it for years. Long before I knew I had ET and JAK2. It apparently goes alongside it quite neatly.

[Tico in reply to JackLina]

Hi,penelope,i suspect i had it b4 my diagnoses ov et,i to have it big time even in this hot weather,makes a gud talking point wen out.lol! Hope u've got a gud haemo, don't think a lot ov them really understand it! All the best 2 u.tico

[JackLina]

Mine is terrible. It's only because I refuse to do what he wants that I get my own way. Totally lacking compassion and thinks we're all the same. Works with statistics rather than humans. Still, it keeps me stronger when I need to fight back! ATB. P

[Tico in reply to JackLina]

U r so right about haemo's, i'm exactly the same as u,they truly must ave little understanding ov all mpns & the impact they sometimes ave on a persons life.don't think they like it because we don't fit in wiv wats in their medical textbooks!

[Bluetop]

Yes, I am PV Jak2 positive on hydroxy and asprin. I was diagnosed 2 yr ago, but the Raynauds has only started in the last few months. Its mainly in one finger.

[JackLina]

They don't stay up to date. when I mentioned this site to mine he referred to it as a blog full of people giving all sorts of opinions and without the knowledge. So narrow minded and lacking 'real world' experiences. My specialist nurse on the other hand more than makes up for him. She is an absolute diamond. the very best. It is because of her that I have succeeded in my quest to be on this drug.

[Tico in reply to JackLina]

U seem 2 ave same experience as me,briliant nurse. Consultants lacking empathy or proper knowledge ov condition, r u based in uk?

[JackLina in reply to Tico]

Yes. North West.