Experiences with

Ageing well

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

I am experiencing menopause because, I haven't had a period in many months. But what I notice is that I'm experiencing sickle cell crisis more often. After reading a lot information, I discovered that since the hormones protecting me and now going down, I'm at risk of many things, including stroke, heart

Hello Everyone...I'd like to start by saying how much I appreciate each of you. I have learned an enormous amount of information since joining this group and it has helped me in so many ways; one of which is how to form questions to ask my doctors (I go in prepared with written questions as my brain

I generally have normal b12 levels in the 500-600 range but have symptoms that mimic b12 deficiency. Sometimes my folate levels are low and I supplement there but was wondering if b12 injections are the next step. My doctor did a parietal cell antibody test and that was high at 30 but mma was below

Hi All, I was unsure where to turn and you guys are my last hope! In July 2020 I was diagnosed with MS ( Multiple Sclerosis ) due to having some numbness and tingling in legs and foot and cognitive problems ( forgetful and thinking issues ) and extreme fatigue. I then had an MRI which revealed lesions

I'm currently on Tocilizumab for GCA under the direction of a specialist physician. I was on 20mg Pred when I started the Tocilizumab which I have injected every 2 weeks. I'm on my third week right now. I was instructed to reduce Pred 5mg every 2 weeks and reduce again 5mg 3 weeks , which is

Tocilizumab side effects: The main thing I have noticed is a proneness to infection, like UTIs, sinus, nasal and Blepharitis. This will be because my immunity is so firmly suppressed what with Prednisalone and Tocilizumab. I was able to quickly get down from 40 mgs of Pred to 10 mgs without the usual

My Liver function tests are slightly out of range (0-35) mine were 42 last time and 46 recently. My Rheumatologist proposes that I come off Tocilizumab and start Methotrexate . It was my understanding that Metotrexate also caused raised liver enzymes. I don’t want to alienate my lovely Rheumatologist

Hey experts … PMRpro, DorsetLady et al, My local Member of Parliament has just visited me to get information to put to our Federal Health Minister in an attempt to get an exemption so that I can have my allocation of tocilizumab extended, or indeed get the drug made available as it is for RA. Among

I am looking for some advice please. I was diagnosed with PMR 4four years ago and this was followed by Giant Cell Arteritis. I was given 60 mgs Prenisolone and gradually tapered down. Unfortunately I had a flare a few months later and I was not given appropriate advice and the sight in my left eye

I'm currently on 2mg of Pred and weekly Tocilizumab and doing Ok as far as PMR and GCA symptoms go. However I've caught the dratted cold that's doing the rounds and wonder whether this means I should increase the Pred in line with the Sick Day Rules leaflet. I'm only using Paracetamol for the cold so

I have been on (self-injected) Ro Actemra (Tocilizumab) since July 2019 for LVV-GCA, and it enabled me to cease all other medications (mainly the dreadful Prednisolone) over the course of the first 9 months.( All of my blood results have been totally normal from 2 weeks after starting Tocilizumab and

Hi all, Been a while again since my last update. I was hoping to bring you definitive news on the transplant situation but we're not quite there yet as I've still to meet the team to discuss when to go on the transplant list and find out how long my window of opportunity might be. However, the good

Encouraging Progress in Stem Cell Transplantation . . . https://news.asu.edu/20220512-designer-neurons-offer-new-hope-treatment-parkinsons-disease

Please help promote knowledge about Blood Cancers and Stem Cell Transplant Matching. Help support the become a donor campaigns! Global event! Please see link for more information They have various downloads that can be used on social media like Facebook https://www.worldbloodcancerday.org/en/media

Hello, I am 60 years old. I have been struggling with AMN for over 35 years. I am wheelchair bound, but can still stand. My symptoms have been stable for many years. In a few weeks, I will be getting my first MRI in 30 years. I am afraid if the results are poor, I will have to get bone marrow transplant

ARTICLE https://www.insideprecisionmedicine.com/topics/precision-medicine-topic/stem-cells/map-of-human-blood-stem-cell-development-created/ : EXTRACTS Researchers at UCLA have created a detailed map of human blood cells and how they develop in an embryo, which could help improve treatments for blood-related

GeoVax is conducting two Phase II COVID-19 vaccine clinical trials with its GEO-CMO4S1 vaccine. One of the trials is among immunocompromised patients who have been treated with CAR T therapy or have undergone bone marrow transplants. https://www.biospace.com/article/geovax-s-novel-vaccine-platform-induces-both-antibody-and-t-cell-responses

Thank you again to everyone who posted about and is discussing MSAA's latest edition of the "What's New in MS Research" report on our website! For those that don't know: this series of online articles is published periodically and features important information on topics ranging from highlights of major

This looks interesting but way over my knowledge base. Perhaps some of you super brains can figure this out. In recent years, the increasing advancements and applications of cellular immunotherapy have enabled the use of chimeric antigen receptor (CAR) T cell therapy, and it has emerged as an efficacious