Swelling
Re: Swelling
Hi David,
Is the swelling in one leg only? This could indicate a DVT and you need to see your doc in a hurry,
If the swelling is general and in both legs, it may be your medication and you need to wear compression socks.
Either way I think you should discuss this with your haematologist or doc .
Best wishes
Katie
Is the swelling in one leg only? This could indicate a DVT and you need to see your doc in a hurry,
If the swelling is general and in both legs, it may be your medication and you need to wear compression socks.
Either way I think you should discuss this with your haematologist or doc .
Best wishes
Katie
Re: Swelling
Thanks Katie, Its in both, and fairly equal. Two things I have found in reading regarding this issue. The first was a very rare older article saying that some patients with mf can show this prior to morphing into aml. I don't think that is me as my genetic panel was completely clean except for the jak2. However, A Mayo clinic article talked about anti inflammatory drug as well as blood pressure meds causing it, and I take lots of that stuff, so I am going to check with my gp on that this week.
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Re: Swelling
Hey David,
Katie makes some good points here about your swelling...
If it is a more general all-over swelling, it might be signs of what is known as 'Peripheral Neuropathy'
What is 'Peripheral Neuropathy?' (PN)
Peripheral neuropathy is not a single disease. It’s a general term for a series of disorders that result from damage to the body’s peripheral nervous system.
Peripheral nerves go from the brain and spinal cord to the arms, hands, legs, and feet. When damage occurs, numbness and pain in these areas may occur.
This Link might help elucidate the term a little more:
https://www.foundationforpn.org/what-is ... europathy/
David, for many years before diagnosis, I had a terrible time with my nail cuticle, on both my hands (and less so on my feet).
After many years of unsuccessful testing, (and a complete lack of diagnosis), my nails were discoloured, truly unsightly, always crumbling away and severely scared, and my fingers and hands were extremely sore at times...
Fast forward to my MPN diagnosis (May 2016), and aspirin helped to restart my periphery nerves back into communication and life...
Between my very high Platelets, and my VWS, my blood was not reaching my extremities, as it once did – Until the low dose 100mg Aspirin became a daily thing...
However, and in my own case, that then also contributed to my internal bleeding via the Portal vein, and in my mouth and nose...
The Aspirin MUST be 'Enteric-coated', and now I can no longer take it every day since my Von Willebrands Sydrome (VWS) positive Type1 results...
This is all another reason why I am also now trialling Methotrexate (MTX) 10mg pw, with Folic Acid x6 days a week...
Anyways, I seem to be digressing here somewhat from your original question of 'Swelling' David, sorry...
My point being that yes, consult with your medical team for their opinion as to a cause and hopefully a remedy, whether firstly it might be DVT or a PN diagnosis?
Katie might well be correct, and it could also be medication related, or indeed something else entirely not known or discussed here?
Please keep us Posted David as to what you learn ...
Best wishes
Steve
Katie makes some good points here about your swelling...
If it is a more general all-over swelling, it might be signs of what is known as 'Peripheral Neuropathy'
What is 'Peripheral Neuropathy?' (PN)
Peripheral neuropathy is not a single disease. It’s a general term for a series of disorders that result from damage to the body’s peripheral nervous system.
Peripheral neuropathy occurs when nerves are damaged or destroyed and can’t send messages from the brain and spinal cord to the muscles, skin and other parts of the body.The body’s nervous system is made up of two parts. The central nervous system (CNS) includes the brain and the spinal cord. The peripheral nervous system (PNS) connects the nerves running from the brain and spinal cord to the rest of the body…the arms and hands, legs and feet, internal organs, joints and even the mouth, eyes, ears, nose, and skin.
Peripheral nerves go from the brain and spinal cord to the arms, hands, legs, and feet. When damage occurs, numbness and pain in these areas may occur.
This Link might help elucidate the term a little more:
https://www.foundationforpn.org/what-is ... europathy/
David, for many years before diagnosis, I had a terrible time with my nail cuticle, on both my hands (and less so on my feet).
After many years of unsuccessful testing, (and a complete lack of diagnosis), my nails were discoloured, truly unsightly, always crumbling away and severely scared, and my fingers and hands were extremely sore at times...
Fast forward to my MPN diagnosis (May 2016), and aspirin helped to restart my periphery nerves back into communication and life...
Between my very high Platelets, and my VWS, my blood was not reaching my extremities, as it once did – Until the low dose 100mg Aspirin became a daily thing...
However, and in my own case, that then also contributed to my internal bleeding via the Portal vein, and in my mouth and nose...
The Aspirin MUST be 'Enteric-coated', and now I can no longer take it every day since my Von Willebrands Sydrome (VWS) positive Type1 results...
This is all another reason why I am also now trialling Methotrexate (MTX) 10mg pw, with Folic Acid x6 days a week...
Anyways, I seem to be digressing here somewhat from your original question of 'Swelling' David, sorry...
My point being that yes, consult with your medical team for their opinion as to a cause and hopefully a remedy, whether firstly it might be DVT or a PN diagnosis?
Katie might well be correct, and it could also be medication related, or indeed something else entirely not known or discussed here?
Please keep us Posted David as to what you learn ...
Best wishes
Steve
Re: Swelling
Hello there
My heamotoligist always checks my ankles as they are generally swollen. He says it is quite common in mf and pv. I have had some pretty bad swelling from soccer injuries.
My fingers also swell up but the progout helps break down uric acid build up generated by the breaking down of bad blood cells
I wear compression bandages on my calves and ankles to bed and helps with the weird feelings in my calves and ankles as the fluid moves.
Good luck
Warwick
My heamotoligist always checks my ankles as they are generally swollen. He says it is quite common in mf and pv. I have had some pretty bad swelling from soccer injuries.
My fingers also swell up but the progout helps break down uric acid build up generated by the breaking down of bad blood cells
I wear compression bandages on my calves and ankles to bed and helps with the weird feelings in my calves and ankles as the fluid moves.
Good luck
Warwick
Re: Swelling
Hi Warwick,
Sorry to hear about your swollen legs, I have ET and while I was on Anagrelide, I too had swollen legs and had to wear compression socks.
I am now still struggling with a toxicity ulcer on my ankle. Thought it was getting better but still hanging on in there.
I think you too have suffered with leg ulcers caused by HU?
Are you going to the coffee catchup st Parramatta on Sat?
Maybe we could compare notes there.
Best wishes
Katie
Sorry to hear about your swollen legs, I have ET and while I was on Anagrelide, I too had swollen legs and had to wear compression socks.
I am now still struggling with a toxicity ulcer on my ankle. Thought it was getting better but still hanging on in there.
I think you too have suffered with leg ulcers caused by HU?
Are you going to the coffee catchup st Parramatta on Sat?
Maybe we could compare notes there.
Best wishes
Katie
Re: Swelling
Hi David,
I have never suffered from swelling with my MPN until now that I have started on blood pressure medications. This is a very common things with lots of the BP meds so check with your Doc and they may be able to alter your doses or type of meds if it is a problem.
The only clot I have had in my leg gave swelling but it was quite different. Only in the one leg and the skin was red and the patch was warm to the touch. I think you will be able to pick the difference in a DVT and other swelling but then I know everyone has slightly different experiences.
Good luck,
SilverET
I have never suffered from swelling with my MPN until now that I have started on blood pressure medications. This is a very common things with lots of the BP meds so check with your Doc and they may be able to alter your doses or type of meds if it is a problem.
The only clot I have had in my leg gave swelling but it was quite different. Only in the one leg and the skin was red and the patch was warm to the touch. I think you will be able to pick the difference in a DVT and other swelling but then I know everyone has slightly different experiences.
Good luck,
SilverET
Re: Swelling
Hello Katie
I am going to to the coffee catchup
I have had ulcers on my foot and ankle. Took 6 or so months to clear. I'm on 1500mg 3 capsules a day of hydroxurea but was on 4 capsules a day for 5 odd years. I found a honey cream really helped called bee power from mudgee anyway just one of the things we put up with
Look forward to meeting you on Saturday
Regards
Warwick
I am going to to the coffee catchup
I have had ulcers on my foot and ankle. Took 6 or so months to clear. I'm on 1500mg 3 capsules a day of hydroxurea but was on 4 capsules a day for 5 odd years. I found a honey cream really helped called bee power from mudgee anyway just one of the things we put up with
Look forward to meeting you on Saturday
Regards
Warwick