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Hi! I just joined. CIDP: Is anyone like me?
My neurologist thinks I might have chronic inflammatory demyelinating polyneuropathy (CIDP), despite the fact that, apart from the occasional shooting pain, cramp, or twinge, I don't have any motor-control, spasm or electric-shock-like symptoms. What I do have is longstanding, progressive, bilateral
My neurologist thinks I might have chronic inflammatory demyelinating polyneuropathy (CIDP), despite the fact that, apart from the occasional shooting pain, cramp, or twinge, I don't have any motor-control, spasm or electric-shock-like symptoms. What I do have is longstanding, progressive, bilateral
AtopicGuy
in
Neuropathy Support
5 months ago
GCA starting again?
Started with GCA 2016, had a couple of flares but got down to 3 mg. Then a couple of years after that started with PMR up with the steroids. Had a couple of flares, arthritis too now in knees and shoulders. About 3 years ago started with vertigo which hasn’t been bad. For two days have had really bad
Started with GCA 2016, had a couple of flares but got down to 3 mg. Then a couple of years after that started with PMR up with the steroids. Had a couple of flares, arthritis too now in knees and shoulders. About 3 years ago started with vertigo which hasn’t been bad. For two days have had really bad
Susanmod
in
PMRGCAuk
5 months ago
Immunology
Hi All, After 6 failed fresh transfers, I am hoping to find a fertility immunologist based in the Wedt Midlands. Any recommendations please? I had two endometrial biopsies for NK cells, first one came back high second test came back normal. I’ve had the following procedures: Laparoscopy with
Hi All, After 6 failed fresh transfers, I am hoping to find a fertility immunologist based in the Wedt Midlands. Any recommendations please? I had two endometrial biopsies for NK cells, first one came back high second test came back normal. I’ve had the following procedures: Laparoscopy with
Anonymou5
in
Fertility Network UK
5 months ago
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Vitamin K2
Trying to find best vitamin K2 supplement. I can’t take calcium but lots of dairy and take D3 on its own daily. I take methotrexate, steroids and other meds so I don’t want the strongest K2 but one I can absorb without a problem. I have been on risedronate for two years but dexa scan had not improved
Trying to find best vitamin K2 supplement. I can’t take calcium but lots of dairy and take D3 on its own daily. I take methotrexate, steroids and other meds so I don’t want the strongest K2 but one I can absorb without a problem. I have been on risedronate for two years but dexa scan had not improved
5lupins
in
PMRGCAuk
5 months ago
Auto immune encephalitis
My father was diagnosed with autoimmune encephalitis, after experiencing seizures and deja vu, approx 12 months ago, he was treated with steroids. He subsequently developed diabetes and 9 weeks ago was admitted to hospital after developing a leg infection. The leg infection was treated successfully.
My father was diagnosed with autoimmune encephalitis, after experiencing seizures and deja vu, approx 12 months ago, he was treated with steroids. He subsequently developed diabetes and 9 weeks ago was admitted to hospital after developing a leg infection. The leg infection was treated successfully.
WhippetMum101
in
Encephalitis International
5 months ago
Eyesight and Steroids
I'll be posting this across two sites. Last summer I went for a check up with the optician - I have worn glasses for reading for about 20 years, but this summer was told I needed them for driving, watching tv etc. I had the prescription filled and wore the glasses as directed - however about a week
I'll be posting this across two sites. Last summer I went for a check up with the optician - I have worn glasses for reading for about 20 years, but this summer was told I needed them for driving, watching tv etc. I had the prescription filled and wore the glasses as directed - however about a week
Hopeful66
in
PMRGCAuk
5 months ago
Eyesight Improvement
I'll be posting this across two sites. Last summer I went for a check up with the optician - I have worn glasses for reading for about 20 years, but this summer was told I needed them for driving, watching tv etc. I had the prescription filled and wore the glasses as directed - however about a week
I'll be posting this across two sites. Last summer I went for a check up with the optician - I have worn glasses for reading for about 20 years, but this summer was told I needed them for driving, watching tv etc. I had the prescription filled and wore the glasses as directed - however about a week
Hopeful66
in
NRAS
5 months ago
tooth extraction - Pred increase?
I am having a large molar extracted on Friday next. I have tapered down from 20mg per day beginning of May 2023 to 7mg for last week. This is my first tooth extraction for some 15 years and my biggest molar (which has cracked) which caused an infection, now on antibiotics for 5 days. Should I increase
I am having a large molar extracted on Friday next. I have tapered down from 20mg per day beginning of May 2023 to 7mg for last week. This is my first tooth extraction for some 15 years and my biggest molar (which has cracked) which caused an infection, now on antibiotics for 5 days. Should I increase
Thiago1396
in
PMRGCAuk
5 months ago
Father with Stage 4 prostate cancer in 8 bones.
On 10/25/22 I took my dad (79 at the time) to the ER at the VA for escalating back pain and we walked out with a stage 4 prostate cancer diagnosis. When I brought him to the ER I expected them to tell me he had lung cancer as he is a lifelong smoker. Additionally, I had been worried about him all year
On 10/25/22 I took my dad (79 at the time) to the ER at the VA for escalating back pain and we walked out with a stage 4 prostate cancer diagnosis. When I brought him to the ER I expected them to tell me he had lung cancer as he is a lifelong smoker. Additionally, I had been worried about him all year
lgutman
in
Advanced Prostate Cancer
5 months ago
Sudden anxiety attacks and mood swing on first Prednisone taper
Hi there I’m 44 and was put on Prednisone, 20mg, 3.5 weeks ago for suspected PMR. My mum also had PMR at a young age of 42. I’m still waiting for my rheumatology appointment, but meanwhile the GP prescribed steroids that are working well, where all other pain medication was not. So the joint pain
Hi there I’m 44 and was put on Prednisone, 20mg, 3.5 weeks ago for suspected PMR. My mum also had PMR at a young age of 42. I’m still waiting for my rheumatology appointment, but meanwhile the GP prescribed steroids that are working well, where all other pain medication was not. So the joint pain
Jaybird22
in
PMRGCAuk
5 months ago
Professor K Raza
Hi all me again sorry for all the posts but I have literally had the worst January been so ill I've barely been able to leave my bed, went to the gp they tried me on antibiotics didn't work then tried me on naproxen didn't work ended up having to go to a and e under rheumatology advice line instructions
Hi all me again sorry for all the posts but I have literally had the worst January been so ill I've barely been able to leave my bed, went to the gp they tried me on antibiotics didn't work then tried me on naproxen didn't work ended up having to go to a and e under rheumatology advice line instructions
Haylz2109
in
LUPUS UK
5 months ago
Worried about how to taper split dose
I am getting a little ahead of myself here, have been on steroids 2 weeks, advised to split dose one week ago with very good results - almost pain-free, feeling well. On 10mg am and pm. My excellent rheumy says continue for another 2 weeks, then commence taper (will see him for details in 2 weeks). However
I am getting a little ahead of myself here, have been on steroids 2 weeks, advised to split dose one week ago with very good results - almost pain-free, feeling well. On 10mg am and pm. My excellent rheumy says continue for another 2 weeks, then commence taper (will see him for details in 2 weeks). However
Tribie
in
PMRGCAuk
5 months ago
A story of hope for those suffering recurrent implantation failure
I wanted to share my story in case it gives a ray of hope to those suffering from recurrent implantation failure. I am currently 14 weeks pregnant so still early days but it's a huge step forward for us. This is the result of the 11th embryo transferred (over 9 transfers as did a couple of double transfers
I wanted to share my story in case it gives a ray of hope to those suffering from recurrent implantation failure. I am currently 14 weeks pregnant so still early days but it's a huge step forward for us. This is the result of the 11th embryo transferred (over 9 transfers as did a couple of double transfers
EllaBC
in
Fertility Network UK
5 months ago
Cough after embryo transfer
Hi All, I had my 6th embryo transfer yesterday and this time I’m being treated with an immune protocol including steroids and other drugs. I’ve managed to pick up a cough and it seems worse after the transfer. Has anyone experienced a cough/cold after transfer and had any successes please? I don’t have
Hi All, I had my 6th embryo transfer yesterday and this time I’m being treated with an immune protocol including steroids and other drugs. I’ve managed to pick up a cough and it seems worse after the transfer. Has anyone experienced a cough/cold after transfer and had any successes please? I don’t have
Batsford
in
Fertility Network UK
5 months ago
Bronchiectasis, Asthma, para oesophageal lymph node enlarges and Gord
Hi,I was diagnosed with mild asthma in 20 14, but rarely needed blue inhaler. During the pandemic I fell ill with a tubo ovarian abcess which I was hospitalised for week . This made me quite ill for a few months and as a result I didn't exercise as much and gained some weight. After everything went back
Hi,I was diagnosed with mild asthma in 20 14, but rarely needed blue inhaler. During the pandemic I fell ill with a tubo ovarian abcess which I was hospitalised for week . This made me quite ill for a few months and as a result I didn't exercise as much and gained some weight. After everything went back
Laurapeil
in
Asthma Community Forum
5 months ago
Dex (3rd round) diminished reponse...looking at doptelet
Hi only getting a transient response from dex which is less effective each time. Hematologist is trying for Doptelet. Got a call from a pharmacy through medicare (in the US) yesterday who offered it for $1900+ a month. Hilarious. I am putting part of life on hold...ie exercising because I don't want
Hi only getting a transient response from dex which is less effective each time. Hematologist is trying for Doptelet. Got a call from a pharmacy through medicare (in the US) yesterday who offered it for $1900+ a month. Hilarious. I am putting part of life on hold...ie exercising because I don't want
cyclist123
in
ITP Support Association
5 months ago
Diet and arthritis
Hi I was diagnosed with PMR in December 2019. I have tried to taper the steroids down but have never got below 2/3 mg a day. Last year I had a particularly trying time with considerable fatigue and very painful mouth ulcers. Slightly at the end of my tether I was given a book called Diet and Arthritis
Hi I was diagnosed with PMR in December 2019. I have tried to taper the steroids down but have never got below 2/3 mg a day. Last year I had a particularly trying time with considerable fatigue and very painful mouth ulcers. Slightly at the end of my tether I was given a book called Diet and Arthritis
Evamollie
in
PMRGCAuk
5 months ago
*sensitive* here we go again
Hi Everyone, So today is OTD and I’m heading into the clinic for my BETA. I’m 9dp5dt and was ecstatic to see those two lines this morning (at 4.30am!) I’ve been here before where it ended very early so trying not to get ahead of myself… this was our 3rd transfer.. it was a FET and we nearly cancelled
Hi Everyone, So today is OTD and I’m heading into the clinic for my BETA. I’m 9dp5dt and was ecstatic to see those two lines this morning (at 4.30am!) I’ve been here before where it ended very early so trying not to get ahead of myself… this was our 3rd transfer.. it was a FET and we nearly cancelled
CreateIVF
in
Fertility Network UK
5 months ago
Bitter Taste In Mouth
I have had a persistent bitter taste in my mouth since the end of December and the only respite that I get from it is either when I am sleeping, eating or drinking! It’s so bad that it is making me feel quite unwell! I am doing everything that has been advised eg drinking lots of water, brushing teeth
I have had a persistent bitter taste in my mouth since the end of December and the only respite that I get from it is either when I am sleeping, eating or drinking! It’s so bad that it is making me feel quite unwell! I am doing everything that has been advised eg drinking lots of water, brushing teeth
LizMitchell
in
PMRGCAuk
5 months ago
Remission vs controlled disease
Hi, all. This isn’t as pressing or important as most posts, but if I may, I have a question regarding semantics. I think that remission means that one feels well-and doesn’t require ongoing drug treatments. If this is correct, I am not in remission, as I’m on Cimzia, but no steroids or other RA drugs
Hi, all. This isn’t as pressing or important as most posts, but if I may, I have a question regarding semantics. I think that remission means that one feels well-and doesn’t require ongoing drug treatments. If this is correct, I am not in remission, as I’m on Cimzia, but no steroids or other RA drugs
Mostmoses
in
NRAS
5 months ago
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