PV qualified or not?

[bordeauxgirl]

What is the difference between an MPN Specialist and a Haematologist and how do I know the difference between the two, also does anyone have a rash with Polycythaemia. It is not the Hydroxy because I was diagnosed with PV and Purities' before I started on Hydroxy. My last Blood test showed was very good numbers, but still wondering why I have this VERY itchy rash, akin to wearing rough woollen socks, the rash is around my ankles ,shins and sometime up to my knee's, my legs are very sore and feel as if I have dropped very hot water onto them. When I asked my Haematologist about the rash he shrugged his shoulders and said I am a blood doctor, not a skin doctor!

[EPguy]

An MPN specialist is usually a special type of hematologist. A general Hem will know about more common blood diseases, for example various types of leukemia, but may see few if any MPNs. Esp since our field is changing so fast we want someone who is up to date.

Sort of like seeing your local mechanic for your Toyota since he works on Toyotas all day, but if you have a rare car you might want to see a specialist in that type since most mechanics see very few of them.

Your Dr's answer to your skin question is compelling evidence you need that specialist. MPNs and their treatments can mess with skin in many ways, as many members here know very well. Hem Dr may not know how to treat it but at least should be aware of the likely MPN connection.

I've been getting the rashes like you describe recently. Scratching it feels great but is quite destructive.

But in my case it seems to relate to the IFN (Besremi) I'm taking. Mine are controlled reasonably well with consumer grade hydrocortisone. But since yours is not IFN related it may respond to different treatments. Other members will offer real world advice too.

[bordeauxgirl in reply to EPguy]

Thank you for your reply . Happy New Year.

[hunter5582]

As EPguy states, MPN Specialists are hematologists with a subspecialty in MPNs. MPNs are rare disorders and most doctors, including hematologists, have little experience with them. Many are unfamiliar with the different ways MPNs can manifest. Pruritus is a common PV symptom that can respond well to the proper treatment. It sounds like it is time to consult with a doctor with the appropriate expertise. Here is a list of MPN specialists.

mpnforum.com/list-hem./

All the best to you moving forward.

[bordeauxgirl in reply to hunter5582]

Thank you hunter, trouble is I live in Guernsey and it is so expensive to get to UK ,air fares ,hotel none of which is covered by Gov, even seeing the GP costs over £60 plus per visit ,whilst being on an OAP. But many thanks anyway ,might try twisting a few arms.

[Notmyusername in reply to bordeauxgirl]

You might try and ask for a consultation via teams or zoom. Most of what haematologists need to see in the blood data so and in person visit isn't hugely necessary. My first two appointments with my hematologist (who luckily is an mpn specialist) were over teams and I didn't in any way feel they were compromised. Happy to share details if it helps.

[Aldebaran25]

If the rash is persistent you should see a dermatologist. I had a rash that kept growing and becoming more and more inflamed. Initially it was not itchy but painful if scratched. Eventually it was diagnosed as cutaneous sarcoidosis, a systemic inflammatory condition that can affect also other organs. It was controlled with steroids (cream). In my case, HU helped. With having an MPN it is likely that in general the immune system is out of balance and other inflammatory conditions can emerge.

[bordeauxgirl in reply to Aldebaran25]

Thank you for your reply Aldebaran25, rash started before any meds were prescribed, i have been treated by local Dermatologist for 7 years ,he hasn't a clue , had every steroid cream on the market, UVA light box, no results with any , doctor said he hasn't a clue. Left very confused. But thank you .

[Ovidess]

I’m wondering if peeling skin ( on the fingers in my case) is connected with MPN/ET? This is something I used to have once or twice a year as seasons changed, but it has—circumstantially or otherwise—increased in frequency and severity as my blood counts veered farther off the norm. If our red cells are off, are B vitamins affected? Aren’t rashes sometimes involved with B vitamins? What other nutritional tests need to be considered with ET/PV? Anyone know?

[hunter5582 in reply to Ovidess]

Some skin issues (e.g., pruritis) can be associated with MPNs. Other skin issues can be associated with the medications used to treat MPNs (e.g., hydroxy-scaling/atrophy, PEG-rash). There is also the more subtle and pervasive impact of the proinflammatory environment created by deregulation of the JAK-STAT pathway. People with MPNs can also experience skin issues that are completely unrelated to the MPN as well.

Nutritional deficiencies can impact anyone, including people with MPNs. My thought is that when we have a chronic condition like a MPN, general health issues like nutrition become more important then ever We need to give ourselves the best chance possible to live a high quality life while managing the MPN. Maintaining a proper nutritional balance is definitely part of this.

I work with an Integrative Medicine doctor specifically on this issue. She did a broad nutritional analysis using the NutrEval panel. We identified some specific nutritional deficiencies, including Vit B/folate. I take doses of specific supplements which were titrated based on follow up testing.

There is no point to taking supplements you do not need. It is best to consult with a medical professional who is well trained in nutrition. This is not all doctors as many receive very limited training in nutrition. Integrative or Functional Medicine docs are one group of specialists that do have this specific expertise. It is best to ask your questions to a medical professional with nutrition expertise to get a case specific answer to your questions.

All the best.

[Solyesh]

I think your doctor's answer to your question on your rash indicates you need an MPN specialist. An MPN specialist would recognize that rash and intense itching could definitely be related to your PV and/or medicine taken..would definitely not just shrug their shoulders...an MPN specialist is like most anything in life the more experience one has with a certain topic the more expert.

[Wyebird]

gosh with a reaction like that that’s why MPN specialists are important.

I believe Both are heamo’s it’s just one has taken a specific interest in mpns

[william-Indo]

Regarding to the answer of ur doc, it is sign to have another doc. MPN is preferred

[bordeauxgirl in reply to william-Indo]

I live in Guernsey, no choice of choosing another doc, we have to just see who we can only one 'dermatologist on Island, he has no clues about my condition and what it feels like. But thankyou anyway.

[hunter5582 in reply to bordeauxgirl]

Even if it is a one-time consult, seeing a MPN Specialist could make all the difference. It would be worth the time and effort.

Assuming that what you are experiencing is a MPN-related pruritis then there is treatment available. It is important to identify triggers. Some people experience relief with antihistamines. Some find various moisturizers can help. While various medications used for cytoreduction might help, ruxolitinib (Jakavi) is known for being the most effective medication for this symptom. Ruxolitinib is one of the few medications that is approved for the treatment of PV, but it is very expensive. This is an issue to review with a hematologist familiar with treating PV.

While consultation with a dermatologist might help, it is unlikely that a dermatologist will be familiar with PV and how to treat it. This issue belongs in the scope of the hematologist treating the PV.

Perhaps you can get the hematologist to contact the MPN Center at Guys for a professional consult. Many MPN Specialists would offer information to to a colleague not familiar with MPNs. Hopefully your hematologist will put your health before his ego and ask for help.

[william-Indo in reply to bordeauxgirl]

You still need to see MPN specialist to get better treatment.

I my self have to fly 3.5hrs to another country every 2 months to see my doc and it is worth

[Blonde25]

Sorry to hear this . Are you on antihistamine for the itchy skin that may help

[Didgeridoo2]

Can anyone tell me please, how expensive an mpn specialist appointment could be in Glasgow? Last 2 months have been a struggle, & Dec. Appt cancelled due to nurses strike. I have MF now, on hu, & feel soo unwell.I dread thought of having hu increased or even the thought of taking medication makes me more nauseus. Past 6 wks, can only manage toast twice a day, asI know not to take medication on empty stomach. Can,t tolerate food smells, & getting more isolated having to avoid food smells, & even going into city centre the food smells are horrendous. Have plodded on till now, but the fatigue is unbearable now, & my nature is not how it was any more. What if a rise in hu is suggested at my next appt.? I don,t want a fuss, but find myself crying like a baby, especially when reading the problems a lot of this group are having. Not usually so self obsessed, so can only hope this will improve in time. Thank you all!

[hunter5582 in reply to Didgeridoo2]

Very sorry to hear about the struggles. It is most unfortunate that you cannot access the care you need when things are so rough right now. I do not know the answer to your question about cost. Here in the States, it is common to pay about $235.00 for an out-of-pocket office visit, I believe that there is a MPN doc in Glasgow who sees patients privately.

Dr. Mark Drummond

City: Glasgow

State/Province: Beatson Hospital

Country: United Kingdom

Phone number: 01413017000

Maybe private practice number - 01313340363

Others in the UK can advise better on private practice options. Wishing you all the best and hope you access care ASAP.

Your body is telling you that you need prompt medical attention. If things get worse, you may need to go into what we would call Urgent Care here in the States.

All the best to you.

[Didgeridoo2 in reply to hunter5582]

Thank you very much for your advice . ThinkI,m anxious because 2 yrs.ago when I felt like this, no-one listened, & so I collapsed & outcome was pulmonary thrombosis, a clot in lung & four admissions within one year with sepsis (1of which almost took my life) Because I was a very fit & active woman before, I don,t know if this is part of condition (mf),but today was very sick, in cold sweat & freezing all day.MF is progression from ET, & was diagnosed 3 months ago. I,ve never complained before & have just accepted this condition & like all the lovely people on this forum got on with things. I do appreciate you acknowledging my post, I just wanted to explain why I,m anxious.

[hunter5582 in reply to Didgeridoo2]

What you are describing would make any reasonable person anxious. In the context of your previous experience, even more so. It is clear that you are experiencing an emergent set of symptoms that needs immediate attention. Some of what you are describing is likely MF related but there could be something else going on too. I would not want to hazard any guesses. This set of symptoms requires prompt attention. Suggest that you do whatever it takes to be seen ASAP.

[Didgeridoo2 in reply to hunter5582]

Again hunter, thank you, & I,ll phone haemo today! It helps to know l,m not just being a wimp. Will just say how I feel, & hope for some help.

[Cat_lady52 in reply to Didgeridoo2]

Can you not contact your current doctor or mpn nurse by phone or email to explain how urgently you need to see someone or get a phone appointment ?Are they a Hematologist or MPN specialist?

Otherwise can they or your GP not refer you to a mpn specialist in Scotland urgently, is Dr. Mark Drummond a NHS doctor?

Sorry I can't be more helpful, but I'm still learning.

All the best

[Didgeridoo2 in reply to Cat_lady52]

Thank you Cat lady for your response. I attend haemotology at local Glasgow hospital, where I see a consultant. Been assuming they,re experts in mpn's, but don,t know.

[bordeauxgirl in reply to Didgeridoo2]

Hello, I don't know if you are in UK or somewhere else. But I know how you feel on the sickness side of taking meds, I have been on HU for 8 years now , but never EVER take them on an empty stomach, whatever time of day or night it is, have you been prescribed anti sickness drug something like 'OMEPRAZOLE' I take it with HU and so far so good. I also always have some food with both tablets. I feel that as you are suffer so much with the sickness it puts you off trying anything else. I would ask your GP to help with the sickness side ASAP. It is wildly used on our Island for calming the stomach and stopping sickness from my point of view. This is just my view and I do really hope you can get some relief very soon. All the best.

[Edgewalk]

HiI too have PV & on Hydroxy. Really surprised at your haematologist reaction to your itchy skin. As far as I'm aware red rashes & itchy skin is one of the symptoms of PV!! (see NHS listed symptoms)

Hope you get something sorted soon to ease your itching.

[bordeauxgirl in reply to Edgewalk]

Thanks for info , I will look at the site you suggest.