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sjogens?
I have post PV Myelofibrosis. When I was dx with PV I took Pegasys from April 22 @ 45mg then 60mg then 90mg fortnightly. (On Jakavi since August 23) So took Pegasys for about 16 months After a couple of months on Pegasys I started to experience close vision problems which could not be corrected with
I have post PV Myelofibrosis. When I was dx with PV I took Pegasys from April 22 @ 45mg then 60mg then 90mg fortnightly. (On Jakavi since August 23) So took Pegasys for about 16 months After a couple of months on Pegasys I started to experience close vision problems which could not be corrected with
Yanico
in
MPN Voice
9 months ago
Update after3years
I was in a covid coma 3years ago and posted in here to soon after I got home my brain was so hyper for a bout a month I felt so.guilty that I survived when ppl were loosing husband's wives children mum's dad's etc when I still do but I did survive I went to therapist who helped a lot and helped me
I was in a covid coma 3years ago and posted in here to soon after I got home my brain was so hyper for a bout a month I felt so.guilty that I survived when ppl were loosing husband's wives children mum's dad's etc when I still do but I did survive I went to therapist who helped a lot and helped me
Drewc
in
ICUsteps
8 months ago
shingles vaccine
Hi folks This is a brilliant site has keep me steady since my husband’s diagnosis of SLL now CLL. My Husband had been W&W for 6 years, now on acalabrutinib for two years with no side affect and doing well. He has been offered the shingles vaccine but he hasn’t had chickenpox’s, is it safe to get the
Hi folks This is a brilliant site has keep me steady since my husband’s diagnosis of SLL now CLL. My Husband had been W&W for 6 years, now on acalabrutinib for two years with no side affect and doing well. He has been offered the shingles vaccine but he hasn’t had chickenpox’s, is it safe to get the
Charles4
in
CLL Support
9 months ago
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Tonsil Stones from IVF Treatment - Anyone Else?
I began my first cycle of IVF back in the summer of 2020. Whilst in treatment and injecting Gonal F, I started having tonsil stones. These are debris that builds up and sit in your tonsils causing some discomfort. I ended up doing 4 rounds of IVF so obviously the drugs/hormones messed up my body somewhat
I began my first cycle of IVF back in the summer of 2020. Whilst in treatment and injecting Gonal F, I started having tonsil stones. These are debris that builds up and sit in your tonsils causing some discomfort. I ended up doing 4 rounds of IVF so obviously the drugs/hormones messed up my body somewhat
anz07
in
Fertility Network UK
7 months ago
Measles outbreak
Hi, not sure if I'm being silly so looking for abit of reassurance. I'm on rituximab, azathioprine and prednisolone. I'm up-to-date with vaccinations bit concerned about the measles outbreak in my area. Am I at risk due to being immunocompromised?
Hi, not sure if I'm being silly so looking for abit of reassurance. I'm on rituximab, azathioprine and prednisolone. I'm up-to-date with vaccinations bit concerned about the measles outbreak in my area. Am I at risk due to being immunocompromised?
Vqueen
in
Vasculitis UK
7 months ago
Cough
So, since having a virus causing a sinus cold at the start of Easter holidays, I have had a flare up which has gradually gotten worse since. I think, symptoms-wise I might have stabilized. Anyhow, I have realized that since about halfway through April I started with a light cough and it has increased
So, since having a virus causing a sinus cold at the start of Easter holidays, I have had a flare up which has gradually gotten worse since. I think, symptoms-wise I might have stabilized. Anyhow, I have realized that since about halfway through April I started with a light cough and it has increased
Obsdian
in
Thyroid UK
4 months ago
Keep getting chest infections
hello I had open heart surgery in June to repair my mitral valve. The surgery was a great success, I’ve recovered well and I am back to working full time. However, whereas before surgery I very rarely got Ill , I now seem to pick up every big going 🤦🏻♀️ And end up quite poorly. I am on statins and
hello I had open heart surgery in June to repair my mitral valve. The surgery was a great success, I’ve recovered well and I am back to working full time. However, whereas before surgery I very rarely got Ill , I now seem to pick up every big going 🤦🏻♀️ And end up quite poorly. I am on statins and
Plum44
in
British Heart Foundation
8 months ago
vaccinations
Hi advice from anyone please? I’m on holiday in Egypt the End of the month and wondered if anyone had there vaccinations ie. Tetanus booster, hepatitis A, Typhoid booster. Just not sure if I should go ahead and have them any help I would appreciate? 😊 also I’m on Benapali drug.
Hi advice from anyone please? I’m on holiday in Egypt the End of the month and wondered if anyone had there vaccinations ie. Tetanus booster, hepatitis A, Typhoid booster. Just not sure if I should go ahead and have them any help I would appreciate? 😊 also I’m on Benapali drug.
Swanfull
in
NRAS
7 months ago
Is this Scabies?
Please tell me if this looks like scabies? This is right under the armpit. I have tried to crop and focus on the problem area but can share another version of this photo if it is not clear. I am morbidly obese so a lot of skin stretching is happening.
Please tell me if this looks like scabies? This is right under the armpit. I have tried to crop and focus on the problem area but can share another version of this photo if it is not clear. I am morbidly obese so a lot of skin stretching is happening.
TryingItOn
in
MY SKIN
4 months ago
Covid day four....U.K
Hi all. This sounds so stupid but I thought it was a regular cold. Just did a COVID test and it's positive. I think it maybe too late to access antivirals now? What should I do? Sorry, just a bit panicked. Thank you in advance.
Hi all. This sounds so stupid but I thought it was a regular cold. Just did a COVID test and it's positive. I think it maybe too late to access antivirals now? What should I do? Sorry, just a bit panicked. Thank you in advance.
Basil01
in
CLL Support
8 months ago
Overactive thyroid and possibly Graves due to symptoms -not medically diagnosed.
Hi there , I am very new to this and I struggle at the moment as I’m falling apart. The whole of December I been basically bedridden and was wondering if you could give me some advice for when I see my doctor. I have an appointment on the 8th and I really want to understand what he is going to discuss
Hi there , I am very new to this and I struggle at the moment as I’m falling apart. The whole of December I been basically bedridden and was wondering if you could give me some advice for when I see my doctor. I have an appointment on the 8th and I really want to understand what he is going to discuss
Danathediva1
in
Thyroid UK
8 months ago
Cough, chest pressure, GCA
I am being treated for GCA, but had a negative biopsy. I am now taking 40 mg of prednisone and will drop to 35 mg tomorrow. My first rheumatology appointment is May 16. I am in no pain but I am very fatigued and I continue to cough, especially when I speak, and have chest heaviness. My primary care
I am being treated for GCA, but had a negative biopsy. I am now taking 40 mg of prednisone and will drop to 35 mg tomorrow. My first rheumatology appointment is May 16. I am in no pain but I am very fatigued and I continue to cough, especially when I speak, and have chest heaviness. My primary care
Moaningxcat
in
PMRGCAuk
4 months ago
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
4 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
4 months ago
Anyone here with cervical arthritis?
I recently found out that the pains I've been having in my neck, shoulders and arms is arthritis. Specifically c4-c5, c6-c7. I don't want ibuprofen, Tylenol isn't working and I'm allergic to sulfa drugs; I'm kinda concerned about all the drugs, but need something to help so I can continue to work. I
I recently found out that the pains I've been having in my neck, shoulders and arms is arthritis. Specifically c4-c5, c6-c7. I don't want ibuprofen, Tylenol isn't working and I'm allergic to sulfa drugs; I'm kinda concerned about all the drugs, but need something to help so I can continue to work. I
Fleur29
in
Osteoarthritis Action
8 months ago
Stopped Prednisone Completely
Diagnosed in the fall of 2022 with PMR. Put on 13mg daily, the relief from the discomfort of PMR was immediate; overnight to be specific. The next month, began reducing my dosage about 1mg/mo. On 2023-10-06, began every other day dosage of 1mg. On 2023-12-26 I took my last dose and so far, so good
Diagnosed in the fall of 2022 with PMR. Put on 13mg daily, the relief from the discomfort of PMR was immediate; overnight to be specific. The next month, began reducing my dosage about 1mg/mo. On 2023-10-06, began every other day dosage of 1mg. On 2023-12-26 I took my last dose and so far, so good
Mansplainer101
in
PMRGCAuk
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
4 months ago
Methotrexate and sinus/nasal issues
I've been on MTX for a year now and over the months I keep saying I feel like I'm coming down with a cold but it doesn't happen. I get a blockage in the back of my nasal passage and that causes post nasal drip and a sore throat. I was taking sulphasalazine but have stopped that as I felt so tired on
I've been on MTX for a year now and over the months I keep saying I feel like I'm coming down with a cold but it doesn't happen. I get a blockage in the back of my nasal passage and that causes post nasal drip and a sore throat. I was taking sulphasalazine but have stopped that as I felt so tired on
Gottarelax
in
NRAS
9 months ago
Latest re -Lupus and Covid?
Hello All - I hope you all had a very happy Christmas. Does anyone know the latest position regarding Lupus patients testing positive for Covid please. My wife has had cold symptoms for the past couple of days and we decided to test for Covid this morning and we were both positive. My wife (who has
Hello All - I hope you all had a very happy Christmas. Does anyone know the latest position regarding Lupus patients testing positive for Covid please. My wife has had cold symptoms for the past couple of days and we decided to test for Covid this morning and we were both positive. My wife (who has
BeeManShrop
in
LUPUS UK
8 months ago
New RLS member
First and foremost, I really have to thank all on here that contribute so much time and knowledge to those of us in need. It is very much appreciated. My basic history: I remember back in college around 1998, my calves would go crazy at night like spiders crawling under my skin. It would come and
First and foremost, I really have to thank all on here that contribute so much time and knowledge to those of us in need. It is very much appreciated. My basic history: I remember back in college around 1998, my calves would go crazy at night like spiders crawling under my skin. It would come and
Ddski5
in
Restless Legs Syndrome
8 months ago
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