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Venous ulcer compression system
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Sore Tongue
I've had a sore tongue for 3 years since being diagnosed with pmr. My dentist just said its typical with autoimmune illness. I looked up Thrush but I didn't have white patches. My tongue always feels like I burnt the tip of it. Toothpaste irritates it. My n ew GP gave me oral dose of Nystatin for 2
I've had a sore tongue for 3 years since being diagnosed with pmr. My dentist just said its typical with autoimmune illness. I looked up Thrush but I didn't have white patches. My tongue always feels like I burnt the tip of it. Toothpaste irritates it. My n ew GP gave me oral dose of Nystatin for 2
Paperroses
in
PMRGCAuk
2 years ago
ET accelerated progression
hi. I have had ET since 2004, treated with varying doses of HU and in later years also Peg. Apart from unstable platelets I have been relatively symptom free. Until this year! I have definitely struggled with HU, getting terrible mouth sores. I had a bone marrow biopsy recently which has confirmed
hi. I have had ET since 2004, treated with varying doses of HU and in later years also Peg. Apart from unstable platelets I have been relatively symptom free. Until this year! I have definitely struggled with HU, getting terrible mouth sores. I had a bone marrow biopsy recently which has confirmed
Smdg
in
MPN Voice
2 years ago
Non driving gene mutation-ASXL1
I have MF with JAK2 V617F for 10 years, now is taking Ruxotinib and Interferon . Spleen contraction and blood control are good. Although I took a lot of hormones, at least my fibrosis degree has been reversed, and the mutation rate has also decreased a lot. But I was found I have a new bad prognosis
I have MF with JAK2 V617F for 10 years, now is taking Ruxotinib and Interferon . Spleen contraction and blood control are good. Although I took a lot of hormones, at least my fibrosis degree has been reversed, and the mutation rate has also decreased a lot. But I was found I have a new bad prognosis
merlisa
in
MPN Voice
2 years ago
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Non driving gene mutation-ASXL1
I have MF with JAK2 V617F for 10 years, now is taking Ruxotinib and Interferon . Spleen contraction and blood control are good. Although I took a lot of hormones, at least my fibrosis degree has been reversed, and the mutation rate has also decreased a lot. But I was found I have a new bad prognosis
I have MF with JAK2 V617F for 10 years, now is taking Ruxotinib and Interferon . Spleen contraction and blood control are good. Although I took a lot of hormones, at least my fibrosis degree has been reversed, and the mutation rate has also decreased a lot. But I was found I have a new bad prognosis
merlisa
in
Fight MPN
2 years ago
Comparison can be good for the soul...
I do not often write on here but it seemed these musing may be of interest to others so here goes... ONE of the great advantages I find from attending the courses run by the Pulmonary Rehabilitation Service (PRS) is comparison. And after today's session I feel encouraged. Not that I am significantly
I do not often write on here but it seemed these musing may be of interest to others so here goes... ONE of the great advantages I find from attending the courses run by the Pulmonary Rehabilitation Service (PRS) is comparison. And after today's session I feel encouraged. Not that I am significantly
Timberman
in
COPD Friends
2 years ago
Advice on Flight Socks for travel
Maybe someone knows and can help with my decision, is there any advantage to Full Length over Knee High compression socks. If so does the advantage outweigh the discomfort of the full length socks. This is for a twelve hour flight and I have no particular leg problems just an Paroxysmal AF sufferer with
Maybe someone knows and can help with my decision, is there any advantage to Full Length over Knee High compression socks. If so does the advantage outweigh the discomfort of the full length socks. This is for a twelve hour flight and I have no particular leg problems just an Paroxysmal AF sufferer with
Gfern
in
Atrial Fibrillation Support
2 years ago
Visit with new Hem/Onc Dr went well!
Hi Friends, I had my first visit with my new local doctor. He is Associate Head of Stem Cell Transplant Dept with Ochsner in Louisiana. He does not treat any cancers other than blood. He listened and verbalized understanding that my previous Dr’s were not a fit for me. He reviewed my BMB from Vanderbilt
Hi Friends, I had my first visit with my new local doctor. He is Associate Head of Stem Cell Transplant Dept with Ochsner in Louisiana. He does not treat any cancers other than blood. He listened and verbalized understanding that my previous Dr’s were not a fit for me. He reviewed my BMB from Vanderbilt
Wewo01
in
MPN Voice
2 years ago
help with drinking 2 to 3 litres of water a day.
post allogeneic stem cell transplant I have been told I need to drink at least 2litres of water a day. With the medication I'm on I cannot drink plain water and have to flavour it and have with plenty of ice. Butstill find it difficult. Any advice on managing to get my full amount of water would be
post allogeneic stem cell transplant I have been told I need to drink at least 2litres of water a day. With the medication I'm on I cannot drink plain water and have to flavour it and have with plenty of ice. Butstill find it difficult. Any advice on managing to get my full amount of water would be
Kraskie1915
in
CLL Support
2 years ago
ET progression to MF - anxiety issues
My ET is now progressing to Post ET Myelofibrisis. My hemo has recommended I start on Ruxolitinib & also to be considered for a stem cell transplant. I know some of you have been in the same situation. Am I correct in thinking MF is life limiting? Also how have any of you coped on Rux? I feel very
My ET is now progressing to Post ET Myelofibrisis. My hemo has recommended I start on Ruxolitinib & also to be considered for a stem cell transplant. I know some of you have been in the same situation. Am I correct in thinking MF is life limiting? Also how have any of you coped on Rux? I feel very
SRH55
in
MPN Voice
2 years ago
Update and meeting the team.
I’ve had lost of tests done over the past few months. I met up the the transplant team. I’m looking at 5-10 years for a bone marrow transplant, they said it could be earlier, as I’m still working and I’m well enough they don’t want to do it to early. I will need to take year off work, (when the time
I’ve had lost of tests done over the past few months. I met up the the transplant team. I’m looking at 5-10 years for a bone marrow transplant, they said it could be earlier, as I’m still working and I’m well enough they don’t want to do it to early. I will need to take year off work, (when the time
wendycu
in
MPN Voice
2 years ago
Stem Cell Transplant-update
Well, I have been below the radar lately but it’s time to update you all. I was diagnosed moth PMF in April 2020 and declined quite quickly. I have CALR with ASXL1 mutation. I went through rapidly increasing dose of Peg INF but moved over to Ruxolitinib when my platelet count dropped. The rux helped
Well, I have been below the radar lately but it’s time to update you all. I was diagnosed moth PMF in April 2020 and declined quite quickly. I have CALR with ASXL1 mutation. I went through rapidly increasing dose of Peg INF but moved over to Ruxolitinib when my platelet count dropped. The rux helped
ConniesDad
in
MPN Voice
2 years ago
MF high risk Mutations
This has been covered in some form before. But I came across this report that summarizes misc info from Cornell in a nice clean manner. See link, it's easy reading. A specific takeaway is with the high risk (HMR) mutations in yellow here they lean toward SCT (stem cell transplant) if possible rather
This has been covered in some form before. But I came across this report that summarizes misc info from Cornell in a nice clean manner. See link, it's easy reading. A specific takeaway is with the high risk (HMR) mutations in yellow here they lean toward SCT (stem cell transplant) if possible rather
EPguy
in
MPN Voice
2 years ago
Awaiting Results
Hi everyone I am waiting on blood test results (9 vials full 😱) and don’t have a diagnosis yet, but I was wondering if recurrent infections are something others struggle with. I get cold sores, mouth ulcers and currently a really painful stye which has closed my eyelid. I have other autoimmune conditions
Hi everyone I am waiting on blood test results (9 vials full 😱) and don’t have a diagnosis yet, but I was wondering if recurrent infections are something others struggle with. I get cold sores, mouth ulcers and currently a really painful stye which has closed my eyelid. I have other autoimmune conditions
MaeBea21
in
LUPUS UK
2 years ago
My father has Peripheral t cell lymphoma
My father has Peripheral t cell lymphoma of stage 4 Doctor started 6 cycles of CHOEP . Does Stem cell transplant is the permanent cure ?
My father has Peripheral t cell lymphoma of stage 4 Doctor started 6 cycles of CHOEP . Does Stem cell transplant is the permanent cure ?
NikhilSantosh
in
CLL Support
2 years ago
B12 Side effects
I am on my second week of B12 injections.. is it normal To have a funny taste in your mouth from the injection and your body be sore with chest pains?
I am on my second week of B12 injections.. is it normal To have a funny taste in your mouth from the injection and your body be sore with chest pains?
Rebecca2845
in
Pernicious Anaemia Society
2 years ago
Tested positive for Covid
I tested positive for Covid last Wednesday 23rd February. I’ve been ok apart from a sore throat, very sore and dry mouth and felt like my mouth was full of ulcers. I’ve never experienced a mouth like that before. Thankfully I’m fully boosted. I was also off my food, didn’t know what I wanted to eat
I tested positive for Covid last Wednesday 23rd February. I’ve been ok apart from a sore throat, very sore and dry mouth and felt like my mouth was full of ulcers. I’ve never experienced a mouth like that before. Thankfully I’m fully boosted. I was also off my food, didn’t know what I wanted to eat
elizabeth-57
in
LUPUS UK
2 years ago
MIN-102 update: summer 2022
Hi everyone, I am persisting with the min-102 trial and yesterday had my 10th visit. Nothing particularly different about the visit: the usual 6 minute walking and balance trials, the annual MRI scan and echocardiogram and the questionnaires and meeting with a specialist. What I did learn is that Minoryx
Hi everyone, I am persisting with the min-102 trial and yesterday had my 10th visit. Nothing particularly different about the visit: the usual 6 minute walking and balance trials, the annual MRI scan and echocardiogram and the questionnaires and meeting with a specialist. What I did learn is that Minoryx
wilburlois15
in
AMN EASIER
2 years ago
Sore mouth
I'm on Carboplatin and caeleyx, I've had five of six cycles so far, after the fourth and fifth I've had a very bad mouth ,sore and ulcers, making me so restricted and miserable that I'm thinking of not having the sixth , I've got the mouthwash prescribed but it hasn't made much difference ,last time
I'm on Carboplatin and caeleyx, I've had five of six cycles so far, after the fourth and fifth I've had a very bad mouth ,sore and ulcers, making me so restricted and miserable that I'm thinking of not having the sixth , I've got the mouthwash prescribed but it hasn't made much difference ,last time
fendweller
in
My Ovacome
3 years ago
Wellness poster for my stay at hospital
I am due to have a stem cell transplant and have prepared myself for my stay at the hospital. It’s been suggested that I can decorate my room and can use posters to put on the wall. I wonder if anyone could suggest somewhere online that they would know of that I could find any reasonably priced posters
I am due to have a stem cell transplant and have prepared myself for my stay at the hospital. It’s been suggested that I can decorate my room and can use posters to put on the wall. I wonder if anyone could suggest somewhere online that they would know of that I could find any reasonably priced posters
Kraskie1915
in
CLL Support
2 years ago
Sct question
Hello friends! I'm using Google translate now. I hope you will understand. I have a question that I can not find an answer to online. It's about stem cell transplantation. If this were to happen at some point in the future, how precise/exact does a match need to be? My parents have different ethnic
Hello friends! I'm using Google translate now. I hope you will understand. I have a question that I can not find an answer to online. It's about stem cell transplantation. If this were to happen at some point in the future, how precise/exact does a match need to be? My parents have different ethnic
Johan2021
in
MPN Voice
2 years ago
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