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Tapering - have I got it wrong?
Hi. I am a new member and this is my first post. Diagnosed with PMR in March 2023, started on 15mg of pred on 31st March. It worked like a dream and within 48 hrs, my pain was down 70% and my energy was up 70%. I felt fantastic and within a month started slowly to increase my level of exercise and activity
Hi. I am a new member and this is my first post. Diagnosed with PMR in March 2023, started on 15mg of pred on 31st March. It worked like a dream and within 48 hrs, my pain was down 70% and my energy was up 70%. I felt fantastic and within a month started slowly to increase my level of exercise and activity
EnyaBlue
in
PMRGCAuk
10 months ago
chronic knee pain, can anyone help!
lve had knee pain before, lve had my knee drained , steroid injection s , but the last 2weeks have been chronic pain never had it this bad before, l dread going to bed trying to walk when l get out of bed is almost impossible, l need a chair with wheels on to get to bathroom, it’s okay when I’m sitting
lve had knee pain before, lve had my knee drained , steroid injection s , but the last 2weeks have been chronic pain never had it this bad before, l dread going to bed trying to walk when l get out of bed is almost impossible, l need a chair with wheels on to get to bathroom, it’s okay when I’m sitting
Kate2628
in
NRAS
5 months ago
Lumbosacral plexopathy - Pain returning after steroid treatment
So further to my previous post on this subject, and I can't find much else on HU about this particular problem, but here's where I am now.....I've just finished a 4-week course of Prednisolone to calm down the inflammation. It really helped to be honest by heck I've had the munchies, knackered but wired
So further to my previous post on this subject, and I can't find much else on HU about this particular problem, but here's where I am now.....I've just finished a 4-week course of Prednisolone to calm down the inflammation. It really helped to be honest by heck I've had the munchies, knackered but wired
Viklou
in
Pain Concern
10 months ago
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sensitive update
Hi ladies, I hope this post isn’t difficult to read. I’ve always found reading people’s updates helped me to stay positive and feel that’s it’s possible for me. My last transfer was successful and I’ve reached the three month stage. Obviously there is still a long way to go but I wanted to post my
Hi ladies, I hope this post isn’t difficult to read. I’ve always found reading people’s updates helped me to stay positive and feel that’s it’s possible for me. My last transfer was successful and I’ve reached the three month stage. Obviously there is still a long way to go but I wanted to post my
Bed12
in
Fertility Network UK
10 months ago
anyone have achy legs
I’m learning so much from reading everyone’s posts. Unfortunately I am still trying to figure out what is going on with my legs. I know I have a component of RLS as my legs feel like a “current” is running through them when I am sitting for long periods, watching Tv in evenings and laying in bed.
I’m learning so much from reading everyone’s posts. Unfortunately I am still trying to figure out what is going on with my legs. I know I have a component of RLS as my legs feel like a “current” is running through them when I am sitting for long periods, watching Tv in evenings and laying in bed.
Corolla1
in
Restless Legs Syndrome
5 months ago
Steriod Injection
Hi Started Methotrexate 15mg 6 weeks ago. Before that I was on a weaning dose of Prednisolone, which was 15mg when I started Mtx. After finishing steroids 2 weeks ago, pain has returned. Rang RA nurses who arranged a steroid injection my thigh (pain in ankles, knee and shoulders) , but the pain has
Hi Started Methotrexate 15mg 6 weeks ago. Before that I was on a weaning dose of Prednisolone, which was 15mg when I started Mtx. After finishing steroids 2 weeks ago, pain has returned. Rang RA nurses who arranged a steroid injection my thigh (pain in ankles, knee and shoulders) , but the pain has
Tinker72
in
NRAS
8 months ago
How painful can PMR get ?
Hi I’ve recently been tapered off steroids . As I was coming off them , the pain gradually returned . I haven’t had any steroids for 2 weeks & im in agony ! Shoulders , arms, hips , legs , knees & feet . I can’t lift my arms very high to brush hair . my Gp diagnosed PMR in April, rheumatologist doubts
Hi I’ve recently been tapered off steroids . As I was coming off them , the pain gradually returned . I haven’t had any steroids for 2 weeks & im in agony ! Shoulders , arms, hips , legs , knees & feet . I can’t lift my arms very high to brush hair . my Gp diagnosed PMR in April, rheumatologist doubts
TedTheMaineCoon
in
PMRGCAuk
10 months ago
do RA immunosuppressants stop the body showing a high temperature with infection ?
Hello I read somewhere that taking RA immunosuppressants and/or systemic steroids stop the body showing a high temperature with an infection ? I asked my RA consultant but he did not confirm, he sidetracked and said that they look at other symptoms also. so I could not get a definitive answer to the
Hello I read somewhere that taking RA immunosuppressants and/or systemic steroids stop the body showing a high temperature with an infection ? I asked my RA consultant but he did not confirm, he sidetracked and said that they look at other symptoms also. so I could not get a definitive answer to the
lindyloo2018
in
NRAS
10 months ago
Steroid injection in shoulder joint
I had a steroid injection in my left shoulder on Thurs pm (after waiting about 6 months). The doctor administering it, advised me to postpone a forthcoming shingles jab, but I forgot to ask him if I should continue to take methotrexate (due Fri - i opted to skip it this week) and my 2 weekly Imraldi
I had a steroid injection in my left shoulder on Thurs pm (after waiting about 6 months). The doctor administering it, advised me to postpone a forthcoming shingles jab, but I forgot to ask him if I should continue to take methotrexate (due Fri - i opted to skip it this week) and my 2 weekly Imraldi
Cutes
in
NRAS
5 months ago
What's your experience of coming of steroids
So I have my rheumatology appointment next week so hopefully will get a better understanding of what's going on. In the meantime I am on mycophenalate and a weaning dose of prednisolone for eye inflammation, started with 800mg in December and am now on 2.5mg before stopping in 2 months time. However
So I have my rheumatology appointment next week so hopefully will get a better understanding of what's going on. In the meantime I am on mycophenalate and a weaning dose of prednisolone for eye inflammation, started with 800mg in December and am now on 2.5mg before stopping in 2 months time. However
Autolupus
in
LUPUS UK
10 months ago
Wound healing thoughts?
I fell over 20 days ago. A younger/healthier person might have gotten away with a nasty bruise, but with my steroid-thinned skin and poor circulation, I ended up with a very bloody gash on my shin. 7 stitches were put in and removed after 14 days. The wound shows no signs of healing and I'm set for
I fell over 20 days ago. A younger/healthier person might have gotten away with a nasty bruise, but with my steroid-thinned skin and poor circulation, I ended up with a very bloody gash on my shin. 7 stitches were put in and removed after 14 days. The wound shows no signs of healing and I'm set for
whisperit
in
LUPUS UK
10 months ago
Pjsmart
I have a bone condition called Avascular Necrosis. It was caused because I attempted suicide in 1983 and the pills aspirated into my lungs so they had to give me massive doses of steroids to save my life and get me breathing again. This caused the blood supply to not get to the joints, so I have had
I have a bone condition called Avascular Necrosis. It was caused because I attempted suicide in 1983 and the pills aspirated into my lungs so they had to give me massive doses of steroids to save my life and get me breathing again. This caused the blood supply to not get to the joints, so I have had
pjsmart
in
Major Depressive Disorder (MDD) Support
10 months ago
stiffness
Hi I have read that people experience lot of stiffness with PMR , especially in the mornings . However , I never do , maybe slightly for a few mins. GPS say I do have pmr. My inflammation levels were 39 in the spring . I was given 40mg steroids per day , as suspected GCA . Then saw a rheumy who
Hi I have read that people experience lot of stiffness with PMR , especially in the mornings . However , I never do , maybe slightly for a few mins. GPS say I do have pmr. My inflammation levels were 39 in the spring . I was given 40mg steroids per day , as suspected GCA . Then saw a rheumy who
TedTheMaineCoon
in
PMRGCAuk
8 months ago
Polymyositis with visible swelling
My friend is still struggling to get a diagnosis. Can i ask if anyone have Polymyositis with visible swelling. She has had a ton on MRIs( showing Inflamation in muscles and around them), blood tests (all negative included auto immune panles), negative EMG. Been on high level of Steroids for 9 months
My friend is still struggling to get a diagnosis. Can i ask if anyone have Polymyositis with visible swelling. She has had a ton on MRIs( showing Inflamation in muscles and around them), blood tests (all negative included auto immune panles), negative EMG. Been on high level of Steroids for 9 months
Angebuck
in
Myositis UK
10 months ago
GCA now TIA, irregular heartbeat
Early August I was diagnosed with a ‘left front ischaemic stroke secondary to new atrial fibrillation…heartbeat irregularly irregular’. It was quite scary as I lost language and ability to order numbers for a short time. Hot foot to A & E, cue ECG, bloods, MRI. Cholesterol 8.0. Prescribed Edoxaban,
Early August I was diagnosed with a ‘left front ischaemic stroke secondary to new atrial fibrillation…heartbeat irregularly irregular’. It was quite scary as I lost language and ability to order numbers for a short time. Hot foot to A & E, cue ECG, bloods, MRI. Cholesterol 8.0. Prescribed Edoxaban,
Bluey-1
in
PMRGCAuk
10 months ago
Sciatica
Hi all. I have been suffering with back pain for several years. In regards to medication, you name it, I've tried it. I've have two lots of steroid injections which had no effect whatsoever and then finally in 2022 I had radio frequency ablation which was brilliant. I had instant relief from this. I
Hi all. I have been suffering with back pain for several years. In regards to medication, you name it, I've tried it. I've have two lots of steroid injections which had no effect whatsoever and then finally in 2022 I had radio frequency ablation which was brilliant. I had instant relief from this. I
Stormtrooper4
in
Pain Concern
5 months ago
Possible allergy to b12
Good morning! I developed a rash a week ago that covered my body and made my lips swell. The doctor suggested stopping b12 and cofactors. He felt it was an allergy to meds and wanted to try these before my heart meds as they would have to be eliminated at the hospital Anyway! I have had the course of
Good morning! I developed a rash a week ago that covered my body and made my lips swell. The doctor suggested stopping b12 and cofactors. He felt it was an allergy to meds and wanted to try these before my heart meds as they would have to be eliminated at the hospital Anyway! I have had the course of
brenanddave
in
Pernicious Anaemia Society
10 months ago
Starting therapy 5 yrs post CAR-T with another immunotherapy trial, now epcoritamab
Making my exercise "rounds" at the hospital
It was a nice long run and far exceeded the average duration of response to CAR-T in CLL, but as we all have grown to accept, essentially all therapies in CLL are palliative. If you live long enough, most but not all of us will eventually relapse.
Making my exercise "rounds" at the hospital
It was a nice long run and far exceeded the average duration of response to CAR-T in CLL, but as we all have grown to accept, essentially all therapies in CLL are palliative. If you live long enough, most but not all of us will eventually relapse.
bkoffman
CLL CURE Hero
in
CLL Support
10 months ago
steroid injections
I had a steroid injection in my low back yesterday. This was to help nerve pain I have been having in my thigh. Today, could I use the steroid from this having this shot of steroid from this injection as a way to decrease my daily steroid by 1/2- 1mg.? Will that work? Hope that makes sense😊
I had a steroid injection in my low back yesterday. This was to help nerve pain I have been having in my thigh. Today, could I use the steroid from this having this shot of steroid from this injection as a way to decrease my daily steroid by 1/2- 1mg.? Will that work? Hope that makes sense😊
Linny3
in
PMRGCAuk
5 months ago
Any advice apprecaited
My husband was dx with a grade 4 glioblastoma wild type Feb 2023. Since then the full round of chemo and radiation and 3 five day cycles of TMZ. we started to taper down the steroids to 1 mg but he was sleeping 21 hours a day. His repeat scan showed increased swelling with a midline shift. His steroids
My husband was dx with a grade 4 glioblastoma wild type Feb 2023. Since then the full round of chemo and radiation and 3 five day cycles of TMZ. we started to taper down the steroids to 1 mg but he was sleeping 21 hours a day. His repeat scan showed increased swelling with a midline shift. His steroids
Buffalolove
in
Glioblastoma Support
10 months ago
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