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Just a question
Hi everyone . I came across this forum whilst reading up on high platelets. My platelets are 700. The doctor asked haematology regarding my platelets to which they replied that because I’m anaemic this would be the reason why. I had transfusions at the beginning of the year which made me no longer
Hi everyone . I came across this forum whilst reading up on high platelets. My platelets are 700. The doctor asked haematology regarding my platelets to which they replied that because I’m anaemic this would be the reason why. I had transfusions at the beginning of the year which made me no longer
Josned23
in
MPN Voice
4 years ago
Temgesic 200mcg UK update for RLS
Well, Mrs P (my wife) has now been taking Temgesic 200msg for 10 days and the results are very promising. At the moment she is reducing her pramipexole and is now taking 2½ tablets (0.088/0.125) and trying to reduce by a half tablet every two weeks. She takes the Prami at about 7.00pm. The doctor
Well, Mrs P (my wife) has now been taking Temgesic 200msg for 10 days and the results are very promising. At the moment she is reducing her pramipexole and is now taking 2½ tablets (0.088/0.125) and trying to reduce by a half tablet every two weeks. She takes the Prami at about 7.00pm. The doctor
puzzler1
in
Restless Legs Syndrome
4 years ago
Question for those living with MF
I was diagnosed in August and have been on Ruxolitinib for almost seven weeks. My blood counts have been really encouraging generally and my red cells are being topped up with transfusions. Last week's Hb before the transfusion was 91, today's was 87. Platelets last week were 117, but today this had
I was diagnosed in August and have been on Ruxolitinib for almost seven weeks. My blood counts have been really encouraging generally and my red cells are being topped up with transfusions. Last week's Hb before the transfusion was 91, today's was 87. Platelets last week were 117, but today this had
Otterfield
in
MPN Voice
4 years ago
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It's gonna be a long 9 weeks...
God put down his fine, horsehair brushes when he painted me, and opted instead for a post-modernistic stick of dynamite in a bucket of Dulux. I imagine Him stood there, half a bottle of Absinth down, beret lopped over on one side, shirt ripped down to the navel, round sunglasses clinging to the end of
God put down his fine, horsehair brushes when he painted me, and opted instead for a post-modernistic stick of dynamite in a bucket of Dulux. I imagine Him stood there, half a bottle of Absinth down, beret lopped over on one side, shirt ripped down to the navel, round sunglasses clinging to the end of
PaulS83
in
Couch to 5K
4 years ago
Performance enhancing drugs.
Just watched that Netflix documentary, Icarus, about doping in sports. https://www.imdb.com/title/tt6333060/ Well worth a watch, and it got me to thinking. Was several years back that I posted about performance enhancing drugs used (illegally) in sports, and how they could benefit us. First
Just watched that Netflix documentary, Icarus, about doping in sports. https://www.imdb.com/title/tt6333060/ Well worth a watch, and it got me to thinking. Was several years back that I posted about performance enhancing drugs used (illegally) in sports, and how they could benefit us. First
monkeybus
in
AMN EASIER
4 years ago
Been taking Exjade to my detriment
Chose to try Exjade after being told I had large iron levels due to transfusions. Was offered a choice of wait and see, think about it or just start. I am taking a trial drug MANIFEST-CPI0601 as well as rux so decided to give it a go. My mistake. This drug crashed my platelets from around 70 to 11 with
Chose to try Exjade after being told I had large iron levels due to transfusions. Was offered a choice of wait and see, think about it or just start. I am taking a trial drug MANIFEST-CPI0601 as well as rux so decided to give it a go. My mistake. This drug crashed my platelets from around 70 to 11 with
skodaguy
in
MPN Voice
4 years ago
Myelodyplastic Syndrome (MDS)
Hi. In my previous post I wrote about reaching a point 18months after completing FCR where my bone marrow stopped producing red cells. This got a diagnosis of MDS which was expected to be irreversible. After several months and 6 blood transfusions I'm thrilled to say my marrow is back in action and
Hi. In my previous post I wrote about reaching a point 18months after completing FCR where my bone marrow stopped producing red cells. This got a diagnosis of MDS which was expected to be irreversible. After several months and 6 blood transfusions I'm thrilled to say my marrow is back in action and
Jotame
in
CLL Support
4 years ago
Mds - the most common side effect of radiation
Hi all, We got to know my father recently got mds and its the most common side effe t of radiation in prostate cancer treatment. We are feeling so lost now, as 3.5 yrs back he got trsticals removed and 3 yrs back his radiation done, since then hemoglobin started to be low like 8, we were every month
Hi all, We got to know my father recently got mds and its the most common side effe t of radiation in prostate cancer treatment. We are feeling so lost now, as 3.5 yrs back he got trsticals removed and 3 yrs back his radiation done, since then hemoglobin started to be low like 8, we were every month
Kshiprakapoor
in
Advanced Prostate Cancer
4 years ago
Thought for the Day - raising our profile
I’ve been looking through a lot of current and old posts about the sufferings caused by RLS so I can use examples to include in my evidence to send to my wife's doctor/consultant. I’ve already sent off a very long description of how she suffers and how managing RLS has completely changed our life for
I’ve been looking through a lot of current and old posts about the sufferings caused by RLS so I can use examples to include in my evidence to send to my wife's doctor/consultant. I’ve already sent off a very long description of how she suffers and how managing RLS has completely changed our life for
puzzler1
in
Restless Legs Syndrome
4 years ago
Blood transfusion vs. IV Iron ??
What’s the difference and is it true once you get a blood transfusion you have to keep getting them ?? My Dads MO wants to do IV iron instead of blood transfusion...any thoughts or experience with this? Thank you🙏🏽 Kimberly
What’s the difference and is it true once you get a blood transfusion you have to keep getting them ?? My Dads MO wants to do IV iron instead of blood transfusion...any thoughts or experience with this? Thank you🙏🏽 Kimberly
savingdaddy
in
Advanced Prostate Cancer
4 years ago
Who s tried to get a blue badge with an advanced MPN
My wife is pushing me to apply to get a blue badge. My last pre transfusion Hb was 47 and I really thought that I was at risk of a severe superior mesenteric artey failure . Pre transfusion I did not eat for 4 days as anything in my stomach caused ischaemic symtoms which were only relieved by lying on
My wife is pushing me to apply to get a blue badge. My last pre transfusion Hb was 47 and I really thought that I was at risk of a severe superior mesenteric artey failure . Pre transfusion I did not eat for 4 days as anything in my stomach caused ischaemic symtoms which were only relieved by lying on
skodaguy
in
MPN Voice
4 years ago
Plasma donation.
Sharon has just gone off to the Blood donation center to donate plasma, for therapeutic purposes towards Covid. She has also taken my all my details along with her. Unfortunately, having cancer means my blood cannot be used in a transfusion, but I am prepared to donate for research purposes. To perhaps
Sharon has just gone off to the Blood donation center to donate plasma, for therapeutic purposes towards Covid. She has also taken my all my details along with her. Unfortunately, having cancer means my blood cannot be used in a transfusion, but I am prepared to donate for research purposes. To perhaps
2greys
in
Lung Conditions Community Forum
4 years ago
B12 help
Hi everyone! So 4 years ago i started having 3 monthly b12 injections. Wasn’t told if I was deficient or not. I was pregnant at the time and was told to book in for an injection. The nurse said book in for another one in 3 months so that’s what I’ve been doing since. Recently had bloods done as I felt
Hi everyone! So 4 years ago i started having 3 monthly b12 injections. Wasn’t told if I was deficient or not. I was pregnant at the time and was told to book in for an injection. The nurse said book in for another one in 3 months so that’s what I’ve been doing since. Recently had bloods done as I felt
B182
in
Pernicious Anaemia Society
4 years ago
Started taking Exjade for iron overload from transfusions
Did this for 3 reasons. I am one of a handful of around 20 people taking both drugs with rux maybe one of 10 taking it with with a trial drug as well. Why do I do it? Other patients took the gamble to try rux and imatinib and lost their gamble so I feel I owe my opportunity to them. Pure research. This
Did this for 3 reasons. I am one of a handful of around 20 people taking both drugs with rux maybe one of 10 taking it with with a trial drug as well. Why do I do it? Other patients took the gamble to try rux and imatinib and lost their gamble so I feel I owe my opportunity to them. Pure research. This
skodaguy
in
MPN Voice
4 years ago
Hope to be helpful
If you’ve not read my old post with details I’ll summarize. I’ve had melanoma for 9 years, stage 1 boosted to stage 3 practically immediately and was excised along with my right ear. Entered a trial treatment which has since been approved, Ipilimumab. For a few years after I continued my foolish behavior
If you’ve not read my old post with details I’ll summarize. I’ve had melanoma for 9 years, stage 1 boosted to stage 3 practically immediately and was excised along with my right ear. Entered a trial treatment which has since been approved, Ipilimumab. For a few years after I continued my foolish behavior
Ryan2
in
Young Adults with Melanoma
4 years ago
has anyone been on exjade
You can all see my post from 2 or so weeks ago. I knew shortly after my iron levels were elevated due to transfusions. Ferritin is also an inflammatory marker but my total iron combining capacity has also been rising steadily ( TIBC). I cannot reduce my transfusion dependency as I have gone down to 52
You can all see my post from 2 or so weeks ago. I knew shortly after my iron levels were elevated due to transfusions. Ferritin is also an inflammatory marker but my total iron combining capacity has also been rising steadily ( TIBC). I cannot reduce my transfusion dependency as I have gone down to 52
skodaguy
in
MPN Voice
4 years ago
Platelets down to 21. Mets to bone.
My husbands platelets are down to 21 and he just had blood transfusion 2 weeks ago. Going tomorrow for another one. He had been getting them once a month plus getting Procrit injections weekly for almost 3 months now. He has Mets to bones since Nov. 2016. We are so scared that he’s towards the end of
My husbands platelets are down to 21 and he just had blood transfusion 2 weeks ago. Going tomorrow for another one. He had been getting them once a month plus getting Procrit injections weekly for almost 3 months now. He has Mets to bones since Nov. 2016. We are so scared that he’s towards the end of
sgrama
in
Advanced Prostate Cancer
4 years ago
What has been your treatment?
Just curious what has been your Doctor’s go to treatment/prognosis? The hematologist I originally began seeing initially had me on 80 mg of steroids for about 4-5 weeks and once my platelets continued to fall tapered me off began doing a combination of IVG transfusion and platelet transfusion-both
Just curious what has been your Doctor’s go to treatment/prognosis? The hematologist I originally began seeing initially had me on 80 mg of steroids for about 4-5 weeks and once my platelets continued to fall tapered me off began doing a combination of IVG transfusion and platelet transfusion-both
RamblinAstateMan
in
ITP Support Association
4 years ago
Is anyone else really feeling the effects of covid or is it just me ? ☹️
Hi all Sending virtual hugs ♥️♥️♥️ as the title says really. Most of you know my history so I won't bore you with all the details but I have really struggled with serious postnatal depression and my surgery, fertility treatment and all that has happened this year has been almost too much from a psychological
Hi all Sending virtual hugs ♥️♥️♥️ as the title says really. Most of you know my history so I won't bore you with all the details but I have really struggled with serious postnatal depression and my surgery, fertility treatment and all that has happened this year has been almost too much from a psychological
Positive2022
in
Pregnancy and Parenting Support
4 years ago
Yearly blood test results...
TSH - 2.66 mIU/L (0.27 - 4.2) FT4 - 14.5 pmol/L (12 - 22) FT3 - 4.2 pmol/L (3.1 - 6.8) TgAB - 11.1 kU/L (0 - 115) TPOAb - 9.4 kIU/L (0 - 34) Active B12 - 51 pmol/L (37.5 - 188) Folate - 11 nmol/L (8.83 - 60.8) Ferritin - 53 ug/L (13 - 150) Vitamin D - 46 nmol/L (50 - 175) I am not taking any medication
TSH - 2.66 mIU/L (0.27 - 4.2) FT4 - 14.5 pmol/L (12 - 22) FT3 - 4.2 pmol/L (3.1 - 6.8) TgAB - 11.1 kU/L (0 - 115) TPOAb - 9.4 kIU/L (0 - 34) Active B12 - 51 pmol/L (37.5 - 188) Folate - 11 nmol/L (8.83 - 60.8) Ferritin - 53 ug/L (13 - 150) Vitamin D - 46 nmol/L (50 - 175) I am not taking any medication
AuntieJules
in
Thyroid UK
4 years ago
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