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Second Treatment -Feeling scared
My husband has CLL and finished FCR in April 2019. Due to low platelets, enlarged spleen and ALC doubling he needs to start his next treatment even though he feels wellV&R is the treatment starting on 15th May. I have researched extensively including within this group, and am aware of the treatment
My husband has CLL and finished FCR in April 2019. Due to low platelets, enlarged spleen and ALC doubling he needs to start his next treatment even though he feels wellV&R is the treatment starting on 15th May. I have researched extensively including within this group, and am aware of the treatment
Sanders9
in
CLL Support
5 months ago
Methotrexate and a head cold
Hi, I have been on methotrexate for 9 weeks and am starting with a head cold.Do I need to inform anyone? It's the first "illness" since starting methotrexate.
Hi, I have been on methotrexate for 9 weeks and am starting with a head cold.Do I need to inform anyone? It's the first "illness" since starting methotrexate.
pattypatchwork
in
LUPUS UK
5 months ago
Menopause and covid
Hi. I’m 59 & post menopause for years now but had Covid in December and still getting over it. I’ve noticed that I appear to have hormonal symptoms and a pattern. I’m weepy, get blocked, feel slight ovary pain etc. Was wondering if anyone else experienced this after having Covid? I had slight bleeds
Hi. I’m 59 & post menopause for years now but had Covid in December and still getting over it. I’ve noticed that I appear to have hormonal symptoms and a pattern. I’m weepy, get blocked, feel slight ovary pain etc. Was wondering if anyone else experienced this after having Covid? I had slight bleeds
Dham
in
Menopause and Perimenopause Support
8 months ago
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Anyone has a drug reaction to Valtrex and Famir?
Hi, Hope these lines find you well! I am unable to tolerate Valtrex or Famir. Just wondering if anyone has experienced this. I haven't tried acyclovir thinking that it would be same... I appreciate your responses, as I have frequent outbreaks. I'm trying to establish if this a drug reaction or
Hi, Hope these lines find you well! I am unable to tolerate Valtrex or Famir. Just wondering if anyone has experienced this. I haven't tried acyclovir thinking that it would be same... I appreciate your responses, as I have frequent outbreaks. I'm trying to establish if this a drug reaction or
rosegardens
in
BASHH
1 month ago
Declined lupus Centre help
Hi all, hope you're all doing as well as you can be. Just thought I'd give you an update on something that went from being so hopeful to now being left to struggle once again. If you know my previous posts just before Christmas I'd had a steroid injection and was waiting to see professor D'cruz in London
Hi all, hope you're all doing as well as you can be. Just thought I'd give you an update on something that went from being so hopeful to now being left to struggle once again. If you know my previous posts just before Christmas I'd had a steroid injection and was waiting to see professor D'cruz in London
Haylz2109
in
LUPUS UK
9 months ago
COVID
Just looking for advice. My wife tested positive for COVID today and is quite ill. I was on a car with her before diagnosis and she was sneezing and coughing alot.My oncologist rang today to say my neutrophil count was 0.75. all other markers ok. He has suggested an injection into stomach as he said
Just looking for advice. My wife tested positive for COVID today and is quite ill. I was on a car with her before diagnosis and she was sneezing and coughing alot.My oncologist rang today to say my neutrophil count was 0.75. all other markers ok. He has suggested an injection into stomach as he said
Guinness4822
in
CLL Support
8 months ago
Tired Tavern - Discord server for people with CFS/ME and/or Long Covid (PACS)
Hi guys, Tired Tavern is community server for people with CFS/ME and/or Long Covid. It's community where empathy, understanding and shared experiences thrive. We have discussions, support groups as well as community events like movie nights and gaming events. If you'd like to join, here is the link
Hi guys, Tired Tavern is community server for people with CFS/ME and/or Long Covid. It's community where empathy, understanding and shared experiences thrive. We have discussions, support groups as well as community events like movie nights and gaming events. If you'd like to join, here is the link
TiredTavern
in
Myalgic Encephalomyelitis Community
8 months ago
Taking Prolia with Rusolitinib (Jakafi)
I have been taking Jakafi (15 mg) twice a day for the last 3 years for my polycythemia vera. I also take blood thinners for my thrombocytosis since I have had blood clots in my lungs twice in the last 2 years. I have had osteoporosis for a while, but my T scores from bone density test are really
I have been taking Jakafi (15 mg) twice a day for the last 3 years for my polycythemia vera. I also take blood thinners for my thrombocytosis since I have had blood clots in my lungs twice in the last 2 years. I have had osteoporosis for a while, but my T scores from bone density test are really
Buggerbear
in
MPN Voice
5 months ago
Advice request - going in circles with doctors
Hi all, I've been suffering with endometriosis for years but I'm really struggling to get proper help with it, and the doctors seem to be thinking now it might be something else. I've had surgery to remove endometriosis twice (and the second time I also had an ovarian cyst removed which was larger than
Hi all, I've been suffering with endometriosis for years but I'm really struggling to get proper help with it, and the doctors seem to be thinking now it might be something else. I've had surgery to remove endometriosis twice (and the second time I also had an ovarian cyst removed which was larger than
Bookworm321123
in
Endometriosis UK
7 months ago
Shingles vaccine
Just got a phone call from GP booking me in for my shingles vaccine as I fit the criteria.Has anyone had any experience of the jab. Do I need to ask Rheumatology about changing my tcz infusion times . Thanks , I not after medical advice just whether you personally had to adjust your drip timings. I
Just got a phone call from GP booking me in for my shingles vaccine as I fit the criteria.Has anyone had any experience of the jab. Do I need to ask Rheumatology about changing my tcz infusion times . Thanks , I not after medical advice just whether you personally had to adjust your drip timings. I
allanah
in
NRAS
5 months ago
Hepatic Peliosis (What is it?)
RE: Hepatic Peliosis (What is it?) Hi all, I have been diagnosed with Hepatic Peliosis of the liver. What is it? and is there any treatments please? Does anyone else have Hepatic Peliosis ? How are your dealing with this etc? Any information would be helpful. Thank you. Regards, Kevin Walker
RE: Hepatic Peliosis (What is it?) Hi all, I have been diagnosed with Hepatic Peliosis of the liver. What is it? and is there any treatments please? Does anyone else have Hepatic Peliosis ? How are your dealing with this etc? Any information would be helpful. Thank you. Regards, Kevin Walker
kevpwalker
in
British Liver Trust
8 months ago
Covid vaccine decision time…
According to this article (link below) older unvaccinated people have been hit particularly hard by Covid and are greatly at risk. I read elsewhere that the last date for getting the jab is 31st January for all ages. I haven’t been vaccinated since the end of 2021 but I’m thinking it’s time to have the
According to this article (link below) older unvaccinated people have been hit particularly hard by Covid and are greatly at risk. I read elsewhere that the last date for getting the jab is 31st January for all ages. I haven’t been vaccinated since the end of 2021 but I’m thinking it’s time to have the
Samazeuilh2
in
Atrial Fibrillation Support
8 months ago
have you had trouble getting approved for stem cell transplant?
I have had a wild ride last year beginning with a sudden decline in weight from 240 lbs - 165 lbs. accompanying the weight loss has also been an alarming increase in fatigue, cognitive ability, pain in my arms and legs, some times to the point where I can hardly feel my legs not to mention the
I have had a wild ride last year beginning with a sudden decline in weight from 240 lbs - 165 lbs. accompanying the weight loss has also been an alarming increase in fatigue, cognitive ability, pain in my arms and legs, some times to the point where I can hardly feel my legs not to mention the
Plasmapool
in
MPN Voice
9 months ago
AT LAST
i have finally got a kind of an answer. i went to docs and asked for an X ray on my spine she sent me instead for a CT scan. there are several things going on with my spine. firstly arthritis, secondly i have a bone growth [ spur ] which is touching a nerve, so i am going for a steroid injection
i have finally got a kind of an answer. i went to docs and asked for an X ray on my spine she sent me instead for a CT scan. there are several things going on with my spine. firstly arthritis, secondly i have a bone growth [ spur ] which is touching a nerve, so i am going for a steroid injection
Fingerandus
in
Restless Legs Syndrome
9 months ago
Living with Long Covid but now Tinnitus too!
Hello everybody, I am new to this site today and have spoken to a very helpful gentleman on the helpline. I have had Long Covid subsequent to catching Covid in April and November 2020 and January 2022. One of the major problems for me is fatigue which is very debilitating. I usually have nausea with
Hello everybody, I am new to this site today and have spoken to a very helpful gentleman on the helpline. I have had Long Covid subsequent to catching Covid in April and November 2020 and January 2022. One of the major problems for me is fatigue which is very debilitating. I usually have nausea with
santosha72
in
Tinnitus UK
9 months ago
Measles
With info about measles cases increases I wondered if anyone had experience of being vaccinated against measles since RA diagnosis. I thought I was vaccinated as a child (pre MMR vaccine) but GP doesn't have a record of it.Thanks in advance for any info
With info about measles cases increases I wondered if anyone had experience of being vaccinated against measles since RA diagnosis. I thought I was vaccinated as a child (pre MMR vaccine) but GP doesn't have a record of it.Thanks in advance for any info
Sky42
in
NRAS
8 months ago
Covid and prednisone
Hi, Covid finally got me 10 days ago for the first time and today I'm still testing positive and I'm still isolating from everyone else in the house. Prior to getting Covid, I've been on DL's 5 week taper with me being at the 5 week mark of 12 mg's that began two weeks ago Sunday. By Thursday of that
Hi, Covid finally got me 10 days ago for the first time and today I'm still testing positive and I'm still isolating from everyone else in the house. Prior to getting Covid, I've been on DL's 5 week taper with me being at the 5 week mark of 12 mg's that began two weeks ago Sunday. By Thursday of that
perceptual63
in
PMRGCAuk
9 months ago
Shingles pain
I've had shingles with continuing pain. Wounds like a burn and a scratch are taking ages to heal. I am older, 66, and I know this can happen. Any suggestions for tests I could ask for and is there any point asking for them. Best wishes Fiona
I've had shingles with continuing pain. Wounds like a burn and a scratch are taking ages to heal. I am older, 66, and I know this can happen. Any suggestions for tests I could ask for and is there any point asking for them. Best wishes Fiona
FinneUK
in
Thyroid UK
8 months ago
Most know the story. Something I can't figure out.
Most people here know my wife's story and went to the hospital with Eshauphageal erosion, but a typo on her Chart (Fibrosis vs Cirrhosis) had a dramatic impact. Doctors thought they were dealing with Cirrhosis vs NASH with Fibrosis. That was tracked down to a dictaphone error. In reality, two weeks
Most people here know my wife's story and went to the hospital with Eshauphageal erosion, but a typo on her Chart (Fibrosis vs Cirrhosis) had a dramatic impact. Doctors thought they were dealing with Cirrhosis vs NASH with Fibrosis. That was tracked down to a dictaphone error. In reality, two weeks
ceward204
in
British Liver Trust
9 months ago
A new year, a new (re)start, and another memento from covid.
A lovely vrb asked after me the other day, and I realised I haven't posted since I got my ear infection, so here's what's been happening - or not! So, the ear infection back in November caused vertigo, which stopped me from running because it just felt too weird. I was just getting back from that when
A lovely vrb asked after me the other day, and I realised I haven't posted since I got my ear infection, so here's what's been happening - or not! So, the ear infection back in November caused vertigo, which stopped me from running because it just felt too weird. I was just getting back from that when
grumpyoldgirl
Graduate
in
Couch to 5K
9 months ago
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