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blood test bingo!
I've just been to Bristol stem cell department in preparation for a possible Stem cell transplant. I had to have 14 phials of blood taken for tests. Is this a record at one sitting? !!
I've just been to Bristol stem cell department in preparation for a possible Stem cell transplant. I had to have 14 phials of blood taken for tests. Is this a record at one sitting? !!
Scaredy_cat
in
MPN Voice
2 years ago
Do natural supplements work to reduce high cholesterol?
While strictly not a PMR issue I know there are a few whose cholesterol has risen markedly since being diagnosed. I am one of them. I have always had high-ish cholesterol but my last fasting blood test showed everything else perfectly normal but my cholesterol was up. I haven't seen the results
While strictly not a PMR issue I know there are a few whose cholesterol has risen markedly since being diagnosed. I am one of them. I have always had high-ish cholesterol but my last fasting blood test showed everything else perfectly normal but my cholesterol was up. I haven't seen the results
Pr0jection
in
PMRGCAuk
1 year ago
A giant cell arteritis suffer
A giant cell arteritis suffer on methotrexate and prednisolone. Has anyone been on this combination as well? How long did it take you to get off the steroids as i'm still on 4mg as struggling to get off them as symptoms keep returning once I reduce down any further.
A giant cell arteritis suffer on methotrexate and prednisolone. Has anyone been on this combination as well? How long did it take you to get off the steroids as i'm still on 4mg as struggling to get off them as symptoms keep returning once I reduce down any further.
BM16
in
PMRGCAuk
1 year ago
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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
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
Has anyone got any experience in coming off Tocilizumab to start on Methotrexate?
I have been on Tocilizumab since August 2021 but the funding for this is being withdrawn. I have been off steroids now for over 2 months so without the Toci I have nothing to ward off any flare-up of GCA. Due to being relatively asymptomatic before diagnosis and losing sight in one eye very quickly rheumatology
I have been on Tocilizumab since August 2021 but the funding for this is being withdrawn. I have been off steroids now for over 2 months so without the Toci I have nothing to ward off any flare-up of GCA. Due to being relatively asymptomatic before diagnosis and losing sight in one eye very quickly rheumatology
sequeluk
in
PMRGCAuk
2 years ago
GP refusing to offer IFAB Test
I recently requested and Intrinsic Factor Antibody test with my GP and was told there's no need to do this test if my Parietal Cell antibody test was negative/normal. The Parietal Cell test was done in Jan 2021 and I assumed the IFAB was done at the same time and also came back normal. (I was unaware
I recently requested and Intrinsic Factor Antibody test with my GP and was told there's no need to do this test if my Parietal Cell antibody test was negative/normal. The Parietal Cell test was done in Jan 2021 and I assumed the IFAB was done at the same time and also came back normal. (I was unaware
cloudspotting
in
Pernicious Anaemia Society
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
2022 American College of Rheumatology Classification Criteria for Giant Cell Arteritis
This came to my attention in the Lancet: ‘Better tools required for biopsy negative giant cell Arteritis’ https://click.notification.elsevier.com/CL0/https:%2F%2Fwww.thelancet.com%2Fjournals%2Flanrhe%2Farticle%2FPIIS2665-9913(22)00252-1%2Ffulltext%3Fdgcid=raven_jbs_aip_email/1/01000184993a7770-46052eb1
This came to my attention in the Lancet: ‘Better tools required for biopsy negative giant cell Arteritis’ https://click.notification.elsevier.com/CL0/https:%2F%2Fwww.thelancet.com%2Fjournals%2Flanrhe%2Farticle%2FPIIS2665-9913(22)00252-1%2Ffulltext%3Fdgcid=raven_jbs_aip_email/1/01000184993a7770-46052eb1
Exflex
in
PMRGCAuk
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
Tocilizumab
Do other people find the injector pens are painful, intense stinging. Is there anything that can help this. Thank you.
Do other people find the injector pens are painful, intense stinging. Is there anything that can help this. Thank you.
Hidden
in
PMRGCAuk
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
Tocilizumab
I have GCA and PMR. I am on 40mg Pred. The inflammation markers have normalised, but I still have headaches. Doctors want to reduce Pred because of the side effects I am experiencing. I started Methotrexate injections, but they were paused for the last two weeks to see if they were causing the headaches
I have GCA and PMR. I am on 40mg Pred. The inflammation markers have normalised, but I still have headaches. Doctors want to reduce Pred because of the side effects I am experiencing. I started Methotrexate injections, but they were paused for the last two weeks to see if they were causing the headaches
PQXZT
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
Just been approved for Vitamin B12 injection treatment.
hello everyone this is my first post. I have been experiencing many of the symptoms of functional b12 deficiency/pernicious anemia for close to 7 years. My doctor was reluctant for whatever reason to authorize the injections, even though I had a positive parietal cell antibody test. I guess my question
hello everyone this is my first post. I have been experiencing many of the symptoms of functional b12 deficiency/pernicious anemia for close to 7 years. My doctor was reluctant for whatever reason to authorize the injections, even though I had a positive parietal cell antibody test. I guess my question
MikeyO
in
Pernicious Anaemia Society
2 years ago
Pred affects glucose...what about thyroid?
i have been struggling to reduce my pred dose. Since I went from 22.5 to 20 every day has been different. The first day was ok. No real change. Then my pain was high....I was shakey, very tired/exhausted,efeated for the rest. Today my pain is a smidge better..but I am so tired. I have that out
i have been struggling to reduce my pred dose. Since I went from 22.5 to 20 every day has been different. The first day was ok. No real change. Then my pain was high....I was shakey, very tired/exhausted,efeated for the rest. Today my pain is a smidge better..but I am so tired. I have that out
Wallysma
in
PMRGCAuk
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
Here we go again!
GCA/PMR for over 5 years. Pred down to 6mg . Been taken off Tocilizumab but can’t tolerate other steroid sparers. Had appointment with Rheumie and blood test. CRP high so PET scan arranged. She has put me back up to 40mg as inflammation showing in all usual places. It feels like back to square 1. Has
GCA/PMR for over 5 years. Pred down to 6mg . Been taken off Tocilizumab but can’t tolerate other steroid sparers. Had appointment with Rheumie and blood test. CRP high so PET scan arranged. She has put me back up to 40mg as inflammation showing in all usual places. It feels like back to square 1. Has
broomfield28
in
PMRGCAuk
2 years ago
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