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Off Tocilizumab after six months
I don't know where to start. My history will show I have GCA and PMR all diagnosed in 2019 after several misdiagnoses, and started treatment with Pred 15mg and then up to 25mg which helped the PMR and the GCA somewhat. I was then put on 20mg of Mexthetrate which did not agree with me. I change my
I don't know where to start. My history will show I have GCA and PMR all diagnosed in 2019 after several misdiagnoses, and started treatment with Pred 15mg and then up to 25mg which helped the PMR and the GCA somewhat. I was then put on 20mg of Mexthetrate which did not agree with me. I change my
redhouts
in
PMRGCAuk
2 years ago
tocilizumab after relapse
Hi having felt unwell again and 8 weeks of steroids, reducing to zero I have had a positive ct pet scan again. Now back on steroids and a plan to commence lufludomine while consultant tries to get tocilizumab again. Has anyone had any luck with getting further scripts after relapse. Grateful for any
Hi having felt unwell again and 8 weeks of steroids, reducing to zero I have had a positive ct pet scan again. Now back on steroids and a plan to commence lufludomine while consultant tries to get tocilizumab again. Has anyone had any luck with getting further scripts after relapse. Grateful for any
Devoid
in
PMRGCAuk
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
Request - Real time experience Reco for the best haematologists in Portugal please
Hello all, Will move to Portugal in the near future. Looking for excellent haematologist recommendations in Portugal. I am hoping to get reco from people who have personally had positive experience with the said haematologists. Also the names of hospitals or institutes focusing on Hematology
Hello all, Will move to Portugal in the near future. Looking for excellent haematologist recommendations in Portugal. I am hoping to get reco from people who have personally had positive experience with the said haematologists. Also the names of hospitals or institutes focusing on Hematology
Iwillwin123
in
PMRGCAuk
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
will these hot flashes ever end ?
Hi all I am grateful that after 19 months since i developed pmr symptoms I am feeling a lot better and have gradually reduced over the months from 30 mg (think gp went a bit over the top with that dose because i was on 25 and when i reported some blurred vision and headache she upped it . I saw optician
Hi all I am grateful that after 19 months since i developed pmr symptoms I am feeling a lot better and have gradually reduced over the months from 30 mg (think gp went a bit over the top with that dose because i was on 25 and when i reported some blurred vision and headache she upped it . I saw optician
Mofred
in
PMRGCAuk
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
The Polymyalgia Rheumatica Diet: The Ultimate Nutritional Guide To Reversing And Managing Polymyalgia Rheumatica And Giant Cell Arteritis
Has anyone read this book by Hunwick Debby? Did they find it useful? Generally does your diet help improve your condition?
Has anyone read this book by Hunwick Debby? Did they find it useful? Generally does your diet help improve your condition?
Yorksman
in
PMRGCAuk
2 years ago
Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. 2nd edition. By Kate Gilbert
Have you all read the above book by Kate Gilbert? It’s a must if you are a sufferer of PMR or GCA. So much sound practical information and we all know that knowledge is power. Good luck on your journey fellow sufferers. The light is at the end of the tunnel. XxX
Have you all read the above book by Kate Gilbert? It’s a must if you are a sufferer of PMR or GCA. So much sound practical information and we all know that knowledge is power. Good luck on your journey fellow sufferers. The light is at the end of the tunnel. XxX
SouthStrand
in
PMRGCAuk
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
Parietal Cell Antibody test refused by GP
I posted a few weeks back about my Dad who I suspect has b12 absorption problems either as a result of low stomach acid or PA. He tested negative for IF antibodies so zi asked a GP at his surgery if they would test for Parietal Cell antibodies. She didn't seem to know what I was talking about?! Said
I posted a few weeks back about my Dad who I suspect has b12 absorption problems either as a result of low stomach acid or PA. He tested negative for IF antibodies so zi asked a GP at his surgery if they would test for Parietal Cell antibodies. She didn't seem to know what I was talking about?! Said
Needleandthread44
in
Pernicious Anaemia Society
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
Old age
I don’t consider myself middle aged, being only 53, things still work ( in the bedroom department ), but I now have to think more about my health, mental as
well
as physical. Any tips on
ageing
like a cool dude would be highly appreciated Cheers guys
I don’t consider myself middle aged, being only 53, things still work ( in the bedroom department ), but I now have to think more about my health, mental as
well
as physical. Any tips on
ageing
like a cool dude would be highly appreciated Cheers guys
Scottyhealth
in
Men's Health Forum
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
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
About Iron
A friend suggested that my
ageing
gut probably wasn't absorbing iron so
well
any more, and suggested iron patches. I've been wearing a patch every night for just over a month now. Each patch delivers 15 mg of iron, so I was very discouraged when I read Sue's advice to take 325 mg a day.
A friend suggested that my
ageing
gut probably wasn't absorbing iron so
well
any more, and suggested iron patches. I've been wearing a patch every night for just over a month now. Each patch delivers 15 mg of iron, so I was very discouraged when I read Sue's advice to take 325 mg a day.
Desperate100
in
Restless Legs Syndrome
2 years ago
Update on “20 years old and Scared”
Hey guys, roughly 11 months ago I posted in this group worried to death about my unspecified polycythemia diagnosis. You guys provided me with so much support during that time, even though I was a bit shy to respond to comments after a couple of days. Well, I was tested for the JAK2 gene which came back
Hey guys, roughly 11 months ago I posted in this group worried to death about my unspecified polycythemia diagnosis. You guys provided me with so much support during that time, even though I was a bit shy to respond to comments after a couple of days. Well, I was tested for the JAK2 gene which came back
Lc06091
in
MPN Voice
2 years ago
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