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Myelofibrosis - GVHD - graft, versus, host, disease
Hi, thanks for accepting me onto the site. My name is Gary, I am 64 years old and was diagnosed with Myelofibrosis in July, 2024. It all started when I began to feel lethargic and very tired, I had no inspiration to do anything. I was a taxi driver and was only managing to work one or two days a week
Hi, thanks for accepting me onto the site. My name is Gary, I am 64 years old and was diagnosed with Myelofibrosis in July, 2024. It all started when I began to feel lethargic and very tired, I had no inspiration to do anything. I was a taxi driver and was only managing to work one or two days a week
FreemanSaviors
in
MPN Voice
7 days ago
STEM CELL TRANSPLANT FINALLY SCHEDULED (WE HOPE)
Hi everyone. As you may know, my husband was diagnosed with CLL back in 2013, treated with six cycles of FCR, and achieved a "full response with incomplete recovery of the bone marrow." He had severe complications after treatment, but the CLL never recurred. In November 2023 he began to experience
Hi everyone. As you may know, my husband was diagnosed with CLL back in 2013, treated with six cycles of FCR, and achieved a "full response with incomplete recovery of the bone marrow." He had severe complications after treatment, but the CLL never recurred. In November 2023 he began to experience
dwolden
in
CLL Support
10 days ago
Continued Journey
I will be starting the prep for my Bone Marrow Transplant (June 27) Friday. I have 5 days of chemo starting Friday this week, with a rest day before the BMT. Apprehension has been growing in me but it is balanced by others that have successfully made this journey. Also, my Drs. And team give an
I will be starting the prep for my Bone Marrow Transplant (June 27) Friday. I have 5 days of chemo starting Friday this week, with a rest day before the BMT. Apprehension has been growing in me but it is balanced by others that have successfully made this journey. Also, my Drs. And team give an
FiArt12X
in
CLL Support
11 days ago
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Struggling with antibiotics on chemo
Hi all, following chemo last week I then started with cellulitis infection in my leg. I began taking co-amoxiclav antibiotics but found i couldn’t take them orally due to sickness. On Saturday ended up in a &e having injectable antibiotics. They sent me home with the same pills and told me to take
Hi all, following chemo last week I then started with cellulitis infection in my leg. I began taking co-amoxiclav antibiotics but found i couldn’t take them orally due to sickness. On Saturday ended up in a &e having injectable antibiotics. They sent me home with the same pills and told me to take
Lyndy
in
My Ovacome
4 months ago
SCT journey update No.3
Hi all, just to give you an update on my journey towards my *Allogenic Stem cell transplant, my transplant team @ Addenbrookes Hospital are working towards me starting chemotherapy at the end of July with the transplant taking place approx one week later at start of August. I have one more appointment
Hi all, just to give you an update on my journey towards my *Allogenic Stem cell transplant, my transplant team @ Addenbrookes Hospital are working towards me starting chemotherapy at the end of July with the transplant taking place approx one week later at start of August. I have one more appointment
LFCLove
in
MPN Voice
19 days ago
When on a weekly dose of Pegasys is it ok to occasionally alter the day you inject?
Hi everyone, I’m about to try Pegasys in a few weeks time on a weekly dose of 45. If I get any unpleasant side effects I wondered if occasionally it’s ok to put back the usual day of injecting by 24 hours if I had something special on the day of the injection. I forgot to ask my haematologist at my appointment
Hi everyone, I’m about to try Pegasys in a few weeks time on a weekly dose of 45. If I get any unpleasant side effects I wondered if occasionally it’s ok to put back the usual day of injecting by 24 hours if I had something special on the day of the injection. I forgot to ask my haematologist at my appointment
Na56
in
MPN Voice
4 months ago
Borderline TSH during cancer treatment
Hi folks! Haven't been on here for some time but in the interim I have been treated for Chronic Myeloid Leukaemia. Had chemo in September last year which was successful (minus a few hiccups like fungal pneumonia that put me in ICU!) and currently on home oral chemo, antifungals and antibiotics daily
Hi folks! Haven't been on here for some time but in the interim I have been treated for Chronic Myeloid Leukaemia. Had chemo in September last year which was successful (minus a few hiccups like fungal pneumonia that put me in ICU!) and currently on home oral chemo, antifungals and antibiotics daily
spongecat
in
Thyroid UK
21 days ago
Help me! behcet syndrome with tuberculosis
Hello, I have had Behcet's disease for 10 years, which does not respond to treatment, and after treatment with infliximab and mycophenolate mofetil, I have perianal fistula, skin abscesses, severe heartburn, cystitis, prostatitis, night sweats, inguinal lymphadenopathy, and weight loss. ... I have become
Hello, I have had Behcet's disease for 10 years, which does not respond to treatment, and after treatment with infliximab and mycophenolate mofetil, I have perianal fistula, skin abscesses, severe heartburn, cystitis, prostatitis, night sweats, inguinal lymphadenopathy, and weight loss. ... I have become
Hulusi
in
Behçet's UK
4 months ago
continuing the journey
I just had my 3rd round of Chemotherapy ( O CHOP). Doing pretty well, will see 2nd week is usually the hardest. My oncologist was very pleased with how I have responded (ei. Platelets 357 from 1st chemo 10).I also had a port put in my chest last week for easier access for infusion iOS and blood work.
I just had my 3rd round of Chemotherapy ( O CHOP). Doing pretty well, will see 2nd week is usually the hardest. My oncologist was very pleased with how I have responded (ei. Platelets 357 from 1st chemo 10).I also had a port put in my chest last week for easier access for infusion iOS and blood work.
FiArt12X
in
CLL Support
1 month ago
Sorry it has been a while with an update on Ruxolitinib
The last time I wrote to you all was about 2/3 years ago when I started Ruxolitinib. The first 6 to 8 months I was a different person, I felt great. I started to swim, (200 lengths in 1.5 hours) then I started to get water infections, one after the other, chest infections, ear infections and shingles
The last time I wrote to you all was about 2/3 years ago when I started Ruxolitinib. The first 6 to 8 months I was a different person, I felt great. I started to swim, (200 lengths in 1.5 hours) then I started to get water infections, one after the other, chest infections, ear infections and shingles
wendycu
in
MPN Voice
1 month ago
Quite the CLL journey
2012-2013 suspicion of CLL, enlarged lymph nodes in abdomen. Meet with oncologist, blood work does not reveal definitive diagnosis. Yearly appointments with blood work recommended 2016 enlarged lymph node removed from neck, biopsy confirmed CLL, watch and wait. 2018 escalating white blood count and
2012-2013 suspicion of CLL, enlarged lymph nodes in abdomen. Meet with oncologist, blood work does not reveal definitive diagnosis. Yearly appointments with blood work recommended 2016 enlarged lymph node removed from neck, biopsy confirmed CLL, watch and wait. 2018 escalating white blood count and
FiArt12X
in
CLL Support
1 month ago
ankle fusion
Hi I’m just wondering if anyone has had an ankle fusion as I’m having one soon and I’m wondering how long I will be off my feet for, I will try and keep my story short, I fell off a door step 18 months ago and broke three bones in my ankle and leg, I was in hospital for a week and had pins and plate
Hi I’m just wondering if anyone has had an ankle fusion as I’m having one soon and I’m wondering how long I will be off my feet for, I will try and keep my story short, I fell off a door step 18 months ago and broke three bones in my ankle and leg, I was in hospital for a week and had pins and plate
Moonshine15
in
Pain Concern
11 months ago
Japan and stem cells treatment
Hi there was a post last week about stem cell transplant in Japan. I thought I had saved it but obviously not! Does anyone have a link for it please?
Hi there was a post last week about stem cell transplant in Japan. I thought I had saved it but obviously not! Does anyone have a link for it please?
Bluebell2022
in
Cure Parkinson's
1 month ago
Inflammatory arthritis & pulmonary embolisms - an update & a question on possible meds.
Hi all , In my 1st ever post on here 6 days ago regarding a link between inflammatory arthritis & pulmonary embolisms - I received many replies - all of them excellent. Thank you so much you lovely people! Today I saw my Rheumatologist & worded my question to him very, very carefully: "So Doctor
Hi all , In my 1st ever post on here 6 days ago regarding a link between inflammatory arthritis & pulmonary embolisms - I received many replies - all of them excellent. Thank you so much you lovely people! Today I saw my Rheumatologist & worded my question to him very, very carefully: "So Doctor
YorkieBard
in
NRAS
3 days ago
#1 Symptom Reducer
I am a PwP and 56 years old. I'm a bit overwhelmed with all of the information, sometimes conflicting, out there regarding treatments and supplements. I am trying to determine what to try first. I am a predominantly tremor parkie. I exercise regularly & eat well. I take levadopa 25/100 4x a day.
I am a PwP and 56 years old. I'm a bit overwhelmed with all of the information, sometimes conflicting, out there regarding treatments and supplements. I am trying to determine what to try first. I am a predominantly tremor parkie. I exercise regularly & eat well. I take levadopa 25/100 4x a day.
staceysack
in
Cure Parkinson's
5 months ago
Hi, new to this page/forum, looking for information and advice.
Have been on PAS page and Thyroid UK page for a few years but just thought I'd be greedy and join yourselves too. Have been having increasing levels of pain and discomfort for years but just told lose weight, take brufen. Last few years have been awful , eventually got a referral to Rheumatology. Bloods
Have been on PAS page and Thyroid UK page for a few years but just thought I'd be greedy and join yourselves too. Have been having increasing levels of pain and discomfort for years but just told lose weight, take brufen. Last few years have been awful , eventually got a referral to Rheumatology. Bloods
Polo22
in
NRAS
10 days ago
Steroid injection into Kiloid Scars
I have a dermatology appointment on Saturday (yes an NHS appointment on a Saturday) to review treatment of kiloid scars. I think one of the options suggested may be direct steroid injections into the scars themselves. I have had PMR for 9 years and have at last got stable on 7 mg prednisolone daily
I have a dermatology appointment on Saturday (yes an NHS appointment on a Saturday) to review treatment of kiloid scars. I think one of the options suggested may be direct steroid injections into the scars themselves. I have had PMR for 9 years and have at last got stable on 7 mg prednisolone daily
scrambledegg
in
PMRGCAuk
11 days ago
Bile acid malabsorption
I got diagnosed with bam over a year ago taking colesevelam for it i take 1 or 2 a day but it has my bowel movements all over the place its all or nothing and usually in a formed mush and sticky i try to eat healthy but just wondering if any one else has bowel movements like this i have ibs aswell and
I got diagnosed with bam over a year ago taking colesevelam for it i take 1 or 2 a day but it has my bowel movements all over the place its all or nothing and usually in a formed mush and sticky i try to eat healthy but just wondering if any one else has bowel movements like this i have ibs aswell and
Netbet22
in
IBS Network
5 months ago
Mouthwash
I am on 320 of alvesco a day at present along with fostair mart taken with my trusty aero chamber. I was on 640 of alvesco, however for the first time I was starting to get some irritations from this, mild oral thrush, joint pain, weight gain and some odd eye issues. So my consultant said to drop
I am on 320 of alvesco a day at present along with fostair mart taken with my trusty aero chamber. I was on 640 of alvesco, however for the first time I was starting to get some irritations from this, mild oral thrush, joint pain, weight gain and some odd eye issues. So my consultant said to drop
Homely2
Administrator
in
Asthma Community Forum
5 months ago
painful hip and knee SLE lupus
Good morning to you all, I have been suffering with problems with my hips and knees for a couple of years. I had a guided steroid injection in my right hip about a month ago. Initially gave me some relief but now after only a few weeks it has sadly worn off. The pain seems worse than before. My right
Good morning to you all, I have been suffering with problems with my hips and knees for a couple of years. I had a guided steroid injection in my right hip about a month ago. Initially gave me some relief but now after only a few weeks it has sadly worn off. The pain seems worse than before. My right
madgerac
in
LUPUS UK
1 month ago
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