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Anyone experiencing chronic low immunoglobulins
It's taken 4 years nearly, but my amazing rheumatologists have figured out that my version of (currently) seroneg SLE + Sjögren's features leukopenia + hypogammaglobulinaemia & our head of clinc has just referred me to immunology. I think it was recent persistent kidney infections + comprehensive metabolic
It's taken 4 years nearly, but my amazing rheumatologists have figured out that my version of (currently) seroneg SLE + Sjögren's features leukopenia + hypogammaglobulinaemia & our head of clinc has just referred me to immunology. I think it was recent persistent kidney infections + comprehensive metabolic
Barnclown
in
LUPUS UK
9 years ago
Immunosuppressant's with Rituximab
I am on my 2nd round of Rituximab and am having to consider another immunosuppressant along side it, as I still do not feel well and my symptoms get worse as I taper my steroids. Has anybody experienced similar problems and if so, which drug worked well. Any experiences very welcome.
I am on my 2nd round of Rituximab and am having to consider another immunosuppressant along side it, as I still do not feel well and my symptoms get worse as I taper my steroids. Has anybody experienced similar problems and if so, which drug worked well. Any experiences very welcome.
Maudy1
in
Vasculitis UK
9 years ago
Rheumatologist says sjogrens can predispose me to infections: comments anyone?
Am preparing for IV zolendronate treatment to start soon, and at a recent Rheumatology Metabolic Bone Unit appt, the consultant noted my persistently low WBC & IgA + widespread dryness symptoms (my skin + every hole in my bod has a long term NHS clinic-prescribed treatment plan monitored annually in
Am preparing for IV zolendronate treatment to start soon, and at a recent Rheumatology Metabolic Bone Unit appt, the consultant noted my persistently low WBC & IgA + widespread dryness symptoms (my skin + every hole in my bod has a long term NHS clinic-prescribed treatment plan monitored annually in
Barnclown
in
LUPUS UK
9 years ago
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my dr says sjogrens can predispose me to infections: comments anyone?
Preparing for IV zolendronate treatment to start soon at a recent Rheumatology Metabolic Bone Unit appt, the consultant noted my persistently low WBC & IgA + widespread dryness symptoms (my skin + every hole in my bod has a long term NHS clinic-prescribed treatment plan monitored annually in clinics)
Preparing for IV zolendronate treatment to start soon at a recent Rheumatology Metabolic Bone Unit appt, the consultant noted my persistently low WBC & IgA + widespread dryness symptoms (my skin + every hole in my bod has a long term NHS clinic-prescribed treatment plan monitored annually in clinics)
Barnclown
in
The Australian Sjögren's Syndrome Association
9 years ago
Missed/ delayed menstrual cycle with MMF (cellcept)
I'm wondering whether
immunosuppressants
have an affect on hormones at all and whether this is normal? I'm 19 years old and a normal weight of 8 and a half stone for my 5'3 height.
I'm wondering whether
immunosuppressants
have an affect on hormones at all and whether this is normal? I'm 19 years old and a normal weight of 8 and a half stone for my 5'3 height.
Enyacurran
in
ITP Support Association
9 years ago
Anyone here with experience of pilocarpine (salagen)?
hello all Some background: Am 61, living in the UK, with infant onset systemic lupus (probably due mainly to inutero DES exposure). That early diagnosis of my version of lupus got lost when I moved to the UK from the USA in the '70s. the nhs has been busy coping with severe flares of various types
hello all Some background: Am 61, living in the UK, with infant onset systemic lupus (probably due mainly to inutero DES exposure). That early diagnosis of my version of lupus got lost when I moved to the UK from the USA in the '70s. the nhs has been busy coping with severe flares of various types
Barnclown
in
The Australian Sjögren's Syndrome Association
9 years ago
Low C4? High dose steroids and Azathioprine - help!
Hi guys. Can anyone give me any more information on low C4 levels? Mine have apparently been steadily dropping and are now 0.08. The Rheumatologist has put me on 50mg prednisolene but after being on it a week and a half I'm not noticing much improvement. In the past it has taken a couple of weeks
Hi guys. Can anyone give me any more information on low C4 levels? Mine have apparently been steadily dropping and are now 0.08. The Rheumatologist has put me on 50mg prednisolene but after being on it a week and a half I'm not noticing much improvement. In the past it has taken a couple of weeks
Tinksie
in
LUPUS UK
9 years ago
Immunosuppression and antibiotics
Should ITP patients who are on long term treatment with
immunosuppressants
such as MMF carry a supply of antibiotics with them for potential bacterial infections when on holiday?
Should ITP patients who are on long term treatment with
immunosuppressants
such as MMF carry a supply of antibiotics with them for potential bacterial infections when on holiday?
kered
in
ITP Support Association
9 years ago
Dr. Amy Myers MD, What I learned From interviewing 39 Experts In Autoimmunity
Dr. Myers summarizes what she learned from the Autoimmune Summit. PR "Autoimmune disease has become a modern day epidemic. If you aren’t one of the estimated 50 million Americans who suffer from at least one autoimmune disease, you likely know someone who is. Conventional medicine views diseases like
Dr. Myers summarizes what she learned from the Autoimmune Summit. PR "Autoimmune disease has become a modern day epidemic. If you aren’t one of the estimated 50 million Americans who suffer from at least one autoimmune disease, you likely know someone who is. Conventional medicine views diseases like
PR4NOW
in
Thyroid UK
9 years ago
Dermatomyositis anyone?
I've seen my rheumatologist recently and mentioned that I've been having some face swelling that doesn't seem to go away. I also showed him pics of redness on my knuckles and asked him whether it can be dermatomyositis (DM). He agreed that it can be but secondary to lupus, the way he said it was 'overlapping
I've seen my rheumatologist recently and mentioned that I've been having some face swelling that doesn't seem to go away. I also showed him pics of redness on my knuckles and asked him whether it can be dermatomyositis (DM). He agreed that it can be but secondary to lupus, the way he said it was 'overlapping
Purpletop
in
LUPUS UK
10 years ago
After a CLL cure, how do we restore our immune system?
As we are well aware, CLL is a cancer of the immune system. Current treatments don't provide a permanent cure and often worsen immune suppression, which is why nearly all of us are put on 'Watch and Wait' when we are diagnosed, much to our surprise, rather than starting immediate treatment. So I'm
As we are well aware, CLL is a cancer of the immune system. Current treatments don't provide a permanent cure and often worsen immune suppression, which is why nearly all of us are put on 'Watch and Wait' when we are diagnosed, much to our surprise, rather than starting immediate treatment. So I'm
AussieNeil
Administrator
in
CLL Support
10 years ago
What next....
I feel like i have hit a brick wall as unable to get the lupus under control with steroids and plaquenil alone, so need something stronger, but the side affects i experience on the
immunosuppressants
are a big problem for me. Are there any alternative treatment plans people have tried?
I feel like i have hit a brick wall as unable to get the lupus under control with steroids and plaquenil alone, so need something stronger, but the side affects i experience on the
immunosuppressants
are a big problem for me. Are there any alternative treatment plans people have tried?
rubia88
in
LUPUS UK
10 years ago
Happy Bowel Day!
On the 8th October I received a lovely text from my transplant nurse co-ordinator. It simple said “Happy Bowel Day”. She had sent it to mark my 3rd birthday as a bowel transplant patient. Later that day I received a call from my transplant surgeon. He simply said “the biopsy confirms it is cancer.”
On the 8th October I received a lovely text from my transplant nurse co-ordinator. It simple said “Happy Bowel Day”. She had sent it to mark my 3rd birthday as a bowel transplant patient. Later that day I received a call from my transplant surgeon. He simply said “the biopsy confirms it is cancer.”
michaelseres
in
IBS Network
10 years ago
Diagnosed 17 years later!
Then there is the option of phototherapy and if necessary
immunosuppressants
. I don't lay any blame for misdiagnosis on my GP or the original dermatologist as I believe NP to be quite rare. I'm glad I have discovered this forum.
Then there is the option of phototherapy and if necessary
immunosuppressants
. I don't lay any blame for misdiagnosis on my GP or the original dermatologist as I believe NP to be quite rare. I'm glad I have discovered this forum.
MartynH
in
Nodular Prurigo International
10 years ago
skin problems with Prednisolone
I had never heard of it and was told it could be because I have been on long term
immunosuppressants
[ Prednisolone 15 years ] I also took Azathioprine but only for a month due to bad side effects.
I had never heard of it and was told it could be because I have been on long term
immunosuppressants
[ Prednisolone 15 years ] I also took Azathioprine but only for a month due to bad side effects.
bowler
in
PMRGCAuk
10 years ago
There have been many questions and enquiries regarding the Flu Vaccine, so we thought we would share this information from PHE.
John has just been talking to Public Health England regarding their advice regarding the flu vaccine and being immunosuppressed. This is their advice.:- If you are taking "any" immunosuppressing drugs, the advice is to have the inactive vaccine ( none live vaccine) as early as possible in the flu
John has just been talking to Public Health England regarding their advice regarding the flu vaccine and being immunosuppressed. This is their advice.:- If you are taking "any" immunosuppressing drugs, the advice is to have the inactive vaccine ( none live vaccine) as early as possible in the flu
Suzym2u
Vasculitis UK
in
Vasculitis UK
10 years ago
Cyclosporine - which brand?
Hi all, I've just come back from my rheumatologist and he's changing my immunosuppressant from mycophenolate to cyclosporine (because the disease has changed path and is now attacking my joints). Are you taking/have you taken this? If so, how were the side effects for you? And which brand are you
Hi all, I've just come back from my rheumatologist and he's changing my immunosuppressant from mycophenolate to cyclosporine (because the disease has changed path and is now attacking my joints). Are you taking/have you taken this? If so, how were the side effects for you? And which brand are you
Purpletop
in
LUPUS UK
10 years ago
Another update
Well the last couple of weeks have been very up and down, had some very bad days when couldn't move off the couch and got very depressed. I had my meds increased and they are still increasing the dose gradually with mixed results, had one small crisis with breathing which thankfully only lasted a few
Well the last couple of weeks have been very up and down, had some very bad days when couldn't move off the couch and got very depressed. I had my meds increased and they are still increasing the dose gradually with mixed results, had one small crisis with breathing which thankfully only lasted a few
CDreamer
in
AF Association
10 years ago
Quick query about iv Rituximab- anyone else here getting it & finding it definitely seems to help your lung problems?
I take all the usual inhakers/ nebulisers &
immunosuppressants
but started Rituximab end of 2011. This seems to have made a v positive impact on my lungs (& other aspects). Tho' I also get very regular iv immunoglobulins- to reduce no. of & severity of infections.
I take all the usual inhakers/ nebulisers &
immunosuppressants
but started Rituximab end of 2011. This seems to have made a v positive impact on my lungs (& other aspects). Tho' I also get very regular iv immunoglobulins- to reduce no. of & severity of infections.
CMac13
in
LUPUS UK
10 years ago
August's Blog - Anna's experience of travelling with lupus
As the Summer starts to come to a close, we've got the second blog post for the topic - holidays and travelling. This month's blog has been written by Anna about her charity work in Ghana. Thank you Anna for taking the time to write this for us.
I was diagnosed with lupus in 2004 and after six
As the Summer starts to come to a close, we've got the second blog post for the topic - holidays and travelling. This month's blog has been written by Anna about her charity work in Ghana. Thank you Anna for taking the time to write this for us.
I was diagnosed with lupus in 2004 and after six
Paul_Howard
LUPUS UK
in
LUPUS UK
10 years ago
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