Purple Toe update

[azaelea]

Hello dear friends. Just letting you know what's been happening since I last wrote. I'm still suffering very badly with my toe which is still purple and red at the top. I've had various communications with my GP who in turn has emailed my Haematologist suggesting anti-coagulant injection or the like but I feel she hasn't been very helpful at all. GP has been most helpful and has kept in touch by phone trying to find a solution as I am still suffering as much pain and painkillers doing nothing. I was sent for a CT scan of aorta and peripheral vascular system last Thursday and still await the results. Hopefully this will throw some light on where the trouble lies and some treatment can be found. The medications are making me physically sick and not helping! I worry what is happening to the tissues in the toe with lack of oxygen. Will keep you posted when hopefully something positive is done. Keep well and safe, Fran

[Mostew]

Oh poor you . Do hope you are managing to get some sleep . Will be a relief to find out what it is

[john0084]

I had a similar problem last year, it wasn't considered serious enough for me to see my go so I went into see the nurse. Nurse thought I must have bashed it so didn't treat me. Several months later after cooling it off in the see because of the pain it became infected after several courses of antibiotics it still was red and painful. So cut a rather long story i ended up having a biopsy. You have my sympathy. Although it was never diagnosed i felt i had an episode of erythromelalgia.

[azaelea in reply to john0084]

Oh, you've been through it too. I've mentioned erythromelalgia to them but they've either not heard of it, or say it would not just be in one toe. I think yours and mine could be EM.

[ja66ck]

Hoping and praying that you do not have to suffer too much longer with this issue.

[fee13]

Your haematologist needs to wake up. It could be EM but I think that usually affects the whole foot with burning pain & redness. The CT will tell you, hopefully your GP will let you know as soon as results come in. If you can, lay on your back and cycle your legs in the air for 10 minutes, twice/thrice a day, this will help move stagnant pooled blood & replace with fresh oxygenated blood.

[francesb]

I’ve had a very painful foot, mainly in the big toe area, after doing a vascular scan which was clear my consultant said I should consult GP, he diagnosed gout and on searching the internet I found MPN patients can be susceptible to this and also hydroxycarbamide can cause it. There’s a section on it on MPN voice. I’m amazed my consultant didn’t think of it. I’ve just started a three day course of pills which apparently should help. Good luck.

[moo196]

Has yr GP considered Covidtoe? I didn't even know it was a thing, but it really is and my son in law had this in March. Might be worth an ask?

[Stevesmum42]

I really hope you can get some answers and relief for your pain very soon.

Let’s hope your recent scans give you an answer, so the correct treatment can be found swiftly.

Regards Sandy x

[beetle]

I am experiencing a similar issue at the moment. Initially I thought it might be gout but as treatment for that apparently lowers platelets I decided against it. (My platelets currently at 42).

In desperation I started treating the toe as if it might be a fugal infection and very slowly and with twice daily use of anti fungal liquid (by Scholl) it is slowly improving. Now whether that is due to the treatment or it would be getting better anyway is debatable but it might be worth a try as like you my toe was very painful and red and purple at the end. Worth a try?

Best wishes, Jan x

[Sabramcq]

I’m so sorry to hear of your trouble. That sounds so scary. I’m glad you have a responsive GP. I’m praying for a good result AND soon!

[Brendaf]

Hi I have an MPN a very rare type of blood cancer it’s called chronic neutrophilic lukeamia I do suffer with gout quite a bit never knew what it was like till last year and I was away on holiday so so painful but this can checked with a blood test. I’m now taking allopurinol 400 mg per day which seems to be helping me. Hope you get it sorted soon. Brenda

[mhos61]

Hope the CT scan reveals the cause of your suffering. You have suffered enough!

[hunter5582]

Wish we had answers for you. Hopefully the scan(s) will show something. I do not recall whether you are taking hydroxyurea. If so, toe pain is a possible side effect. Not sure if that would be related to vascular ulceration that is one of the more serious HU side effects. Not to say that us what it is, but it should be ruled out if a relevant question.

Meanwhile, I am wondering about the lack of response from your hematologist. If this is typical, if you are not satisfied with this doc's response, then perhaps it is time to find a new doc.

Hope you get relief and answers soon.

[Doggy1903]

Thank you for your update, so sorry you have suffered with this pain and discomfort. This can be so worrying. Yes do let me know how you are. Its often having some support that helps. Very glad you have a good GP who is trying hard to help you.Hope the cause can be tracked down.

[Teresa-E]

Hi Azaelea. prior to when I was first diagnosed with ET last year, for 2 years I suffered immensely with erythromelalgia in both feet and toes. I would have one toe that would turn dark purple, but if I massaged my foot with a cool wash cloth it went away. I noticed it most when I was sitting with my feet dangling for a period of time. Then, once I was diagnosed with ET, I immediately was put on aspirin and soon after that HU 500mg daily. I have not had an episode of "purple toe" or erythromelalgia since. Its a good possibility that may be whats happening to you too. Im only a nurse and not a doctor, but I too had to figure this out on my own due to drs just not understanding all the different symptoms this condition could have. Good luck and God Bless

[azaelea in reply to Teresa-E]

Thank you very much for your reply. I have mentioned Erythromelalgia to both my GP and the Haematology doctor who looked at my toe a fortnight ago. She said Erythromelalgia would affect the whole foot and not just one toe. I'm not so sure from what I've read about Erythromelalgia and it IS definitely a symptom of ET. They don't seem to want to consider these obscure things. Hopefully the scan will confirm if it is a clot. Thank you for letting me know of your experience. I am on Hydroxy and Clopidogerel (they stopped my aspirin as I had a Gastro intestinal bleed some weeks ago and can't have endoscopy because of lockdown. ) Thanks, Fran