PV and Blue Toe Syndrome

[Iwillwin123]

Hello , I am urgently seeking information for the following-

Has anyone with PV developed Blue Toe Syndrome ?

If so please provide details since it will be very helpful . Thankyou.

[Tico]

Hi aditigirishsp,i've got et jak2 & just before i was diagnosed with the condition i kept getting terrible pains in the calf,one day while out on a long walk i had to stop because the pain had travelled down into my foot & toes. When i removed my training shoe i was shocked to see my big toe had gone blue,i didn't do anything aboutit for a week or 2 then when it didn't improve i went to my then gp who blamed smoking for it. I persistently went back & forth & when he refused to carry out tests i changed my gp. In the meantime my health was deteriorating. Just before i was due to see new gp i collased in the bathroom. When i saw new gp & told him & told him about the pains & my toe he sent me for tests & they discovered i had had a small stroke & my bloods were abnormal. It took 6 months of tests & a bmb to get a diagnosis.Haemotologist said the 'blueness' was called digital ischemia caused by the condition. Incedently i had another stroke in 2015. They have struggled with my platelets over the years but i am still here enjoying my life with my wonderful daughter & son-in -law & 2 beautiful grandkids.Biggest effect on me with the condition is bone pain & fatigue. At present waiting for test results for a health issue unrelated to the et but confident will be given the all clear. I must emphasize if you are ever worried about anything consult your haemotologist or clinical nurse specialist. All the best, tina.🤗

[Iwillwin123 in reply to Tico]

Thankyou for your detailed reply . It was extremely helpful .

[katiewalsh in reply to Tico]

Hi. Not sure if this information will be helpful but maybe it will. I was on Warfarin blood thinner (Coumadin) to lower my platelets for a year or two but had a hard time staying within the “therapeutic range.” And in just 2-3 days out of the therarange I would develop blood clots. So they switched me to Eliquis & haven’t had anymore that I know of. I’m also on Hydroxyurea however which lowers my platelets. Good luck. Katie

[Iwillwin123 in reply to katiewalsh]

Thankyou for the reply. The information is certainly helpful since it is helps to orient better while speaking with the doctor. MPN,s are so rare, that I feel a collaborative approach with the doctor is the best one. For that one needs to be armed with real-time information. This support group yields such valuable inputs every time.

[Tico in reply to katiewalsh]

Hi katie,thank you very much for your reply. Depending on my platelets results next time,i will certainly discuss this with haemo. Atb,tina.🤗

[clubdino]

I have ET and I've had my fingers turn blue on a few occasions. My tongue and lips turn blue on a more regular basis. I have taken pictures for proof and showed them to my GP and hematologist and was blown off by both of them. Also saw a cardiologist and received no answer. Now when it happens I just take an extra aspirin and hope for the best.

[Iwillwin123 in reply to clubdino]

Oh I see ...... This lack of informed response from medical professionals is most frustrating ..... Thankyou very much ..... Your input is very helpful .

[clubdino in reply to Iwillwin123]

It is most frustrating. I should clarify though that if any of my body parts stayed blue for more than a couple hours or were significantly painful I would head to the ER. When I have had cyanotic body parts it's only lasted for maybe an hour or less and was only slightly painful.

Also I noticed it is more likely to happen when I drink too much alcohol. At small doses alcohol is a vasodilator. But at larger doses it becomes a vasoconstrictor. Also, it's probably a good idea to make sure that none of the medications you are on are known for vasoconstriction. You definitely don't want your blood vessels constricting too much when you have a MPN.

[Tico in reply to clubdino]

Hi clubdino,i find your reply interesting, showing how different our bodies are. When my toeturned blue before, it stayed that way for several weeks before i started to take aspirin off my own back before diagnosis. I was put on hydrea & aspirin after diagnosis. I still get the 'blueness' regularly, in the digits & the most painful in the tongue. I was lucky in that my haemo & cns both saw it & my cns thought it was raynauds & they ran tests. In the end haemo stated more than likely condition. Regarding alcohol, i gave it up just over a year ago & still have it flare up, particularly more in cold weather. Just put up with it. I think a lot of any symptoms we have with a mpn become part of us & we have to tolerate them. All the best & happy new year to you & all mpn'ers out there & wishing everyone good health for 2019.🤗 📆🍾🥂

[clubdino in reply to Tico]

Hello Tico,

It's amazing that your toe was blue for a couple weeks and you didn't have long-term damage. That would scare the hell out of me. Can you clarify what your hematologist's final word was...was it that you have Raynaud's or do they believe the ischemia is due to the ET? I get the cyanotic tongue even when I'm not drinking and I agree that my tongue seems to be the most painful when it happens versus my fingers. It happened to me the other night at work and a co-worker stopped me to say "hey your lips are blue, are you getting enough oxygen?" It's not the first time a co-worker has asked me that question.

I'm not on any treatment except for aspirin. I'm not sure mine is Raynaud's as it happens even when I'm not cold. But even Raynaud's can cause damage if it lingers too long. After 19 years working in the veterinary field I learned blue body parts are never to be taken lightly so I was surprised to see 3 different doctors blow it off so easily. I'm betting if it was their tongue turning blue they wouldn't be so calm. Happy New Year to you as well!

[Tico in reply to clubdino]

Hi clubdino,don't know if my last reply reached you as sidetracked but when my toe turned blue before diagnosis,i had the pain in the left calf for several months & that day i was on a round trip walk of around 7 miles. I had carried on walking regardless of the pain & believe thats why the damage to my toe occurred. The blueness which i get now is shortlived but in the tongue so painful & severe that if possible i have to run to a warm running tap & put my tongue under it! The blood tests were to look for high inflammatory markers as raynauds sometimes goes hand in hand with the likes of lupus & athritis, both inflammatory conditions. Tests came back negative but cns still of the opinion its raynauds saying tests can be negative at the time but possible to still have it but haemo thinks its ischemia due to et. By the way haemo doesn't classify mpn's as rare blood cancers just a 'minor inconveience' which should cause you no symptoms or fatigue! He probably doesn't believe the popes a catholic either! Lol. Atb, tina.🤗

[clubdino in reply to Tico]

Wow...my tongue has never hurt that bad. I have to say my hematologist never seemed to take my MPN very serious either...which is unfortunate because I have to say that my fatigue is probably my most annoying symptom. I was tested by my GP for rheumatoid arthritis and lupus because I do suffer from some nasty joint pains and have low grade fevers on a regular basis. Both came back negative. I know the fact that we have a MPN makes us more susceptible to acquiring an autoimmune issue. I guess it's a mystery and we will never know for sure what causes our blue body parts...ET or Raynaud's. You are the first person I have come across that also suffers from the blue tongue though. Is it already 2019 where you are? We still have 6 hours left of 2018 where I am. May it be the year of no blue tongues. Lol 😆

[Tico in reply to clubdino]

New year in around 10 mins! Ditto, low grade fevers.happx new year!

[Tico in reply to clubdino]

Happy! I meant.

[Iwillwin123 in reply to Tico]

Thankyou for your response. It so very helpful . What I am not quite clear about is that with a blue toe showing up - exactly which is the specialist who should respond ..... 1) Cardiologist 2) hematologist 3) Orthopedician 4) General Physician specialist ...... It is rather confusing ......

[Tico in reply to Iwillwin123]

Haemotologist, unless your gp clued up on mpn's. A lot of gps are not! But as clubdino as stated he was not taken seriously by 3 different doctors. I know it can be very frightening,thats why you must phone your cns & tell them how worried you. With me its different,i'm very laid back & have had it years. Only earlier when my friends were lighting fireworks & i was standing outside watching,i had to come in because my fingers were turning transparent with the cold. What i call the 'white effect' but please call your haemo team to put your mind at rest. Atb,tina.🤗 p.s. when you have spoken to them i will get my daughter to take pictures because now we are going in cold weather,it will happen more regulararly.

[jointpain]

Blue toes, my wife Joyce constantly got blue purple toes for years especially in the winter. She used to say it was chilblains! We now know differently, as shortly after her spleen burst on may first in France she was getting purple blue toes while recovering from the splenectomy, the haematologist upped her anticoagulant as he considered it dangerous, her platelets were around the million at this time. Which makes us believe her Myelofibrosis was superceded by at least PV if not ET.

You really should see a haematologist asap. All the best

[Iwillwin123 in reply to jointpain]

Thankyou for your reply. We will certainly now see a hematologist as you suggested.

Did the increased dose of anticoagulant help ? I just read a research paper where the anticoagulant dose needs to be fine-tuned...... Beyond a “tipping point “ the AG itself causes blue digits too is what the research paper indicated. A case of too little or too much ...... Anyway I intend to ask this question to the Haematologist and will report his response here so folks here can opine on it..... I feel since this whole MPN story is such that one constantly walks on a knife edge ......

[jointpain in reply to Iwillwin123]

At the time the heparin did help, but as we were in France and the haematologist only suspected an MPN Joyce was not given any platelet reducing drugs.These weren't given until a few weeks after returning to the UK.She had a terrible bleed into the gut when the haematolgist in the UK replaced the heparin with aspirin, which also brought about a massive Portal vein thrombosis.So yes a knife edge is a good way of describing an MPN.ATM she has a blood test every two weeks and an adjustment of the Anagrelide and Hydroxy and warfarin if needed.A Very Happy New year to you and everyone on healthunlocked

[Stevesmum42 in reply to jointpain]

I hope you and your wife have a good year, last year was a worrying time for you both, so I wish you all the best.

Sandy x

[jointpain in reply to Stevesmum42]

Thank you ever so much for your reply. Joyce is doing really good with really only one side effect, that being a little insomnia at times. Though we have little trust in her haematolgist, he is slowly winning us over, and is always obliging in giving Joyce a blood test. We see on this site many who never see their haematologist very often or have one determined to get blood counts down as this one does. Have a great year too

[Tico]

Hi aditigirishp,regarding the conversation regarding the blue toes i spoke with my cns on the 2nd jan because gp wanted to put me on iron tablets & it caused me an upset stomach so stopped taking them. I looked at my full blood counts & noticed my mcvs & mchs were pretty high & that on previous counts their were. No obvious reason like low b12 or folate so did some research & discovered that hydroxyurea (hu), can give the high readings for the mcvs & mchs & interesting having high mean cell volume can cause circulation problems,cns agreed. I will certainly be having a more detailed discussion with my haemo on next visit. Atb, tina.🤗

[Iwillwin123 in reply to Tico]

Oh I see ! Yes that could be a possibility too I guess ..... Thankyou for remembering to share the information .