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Experiences with
Peroxisomal acyl-CoA oxidase deficiency
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Struggleing
Ok I will show latest blood results 7 months on imbrutinib fist 3/4 months were absolutely fantastic! Now 7 month in and wbc down to 31k but fatigue has returned triple fold and truly just don’t feel well ruled out a virus and a little worried hematologist states could just be my body adjusting to new
Ok I will show latest blood results 7 months on imbrutinib fist 3/4 months were absolutely fantastic! Now 7 month in and wbc down to 31k but fatigue has returned triple fold and truly just don’t feel well ruled out a virus and a little worried hematologist states could just be my body adjusting to new
haposwald
in
CLL Support
5 years ago
Worried about my health now
Hi everyone, had really good advice from fellow suffers before and desperately need your help more than ever now before I go totally bonkers. Weaned myself completely off Ropinirole about 2 months ago now which was pretty horrendous as I had been taking them for such a long time. My doctor prescribed
Hi everyone, had really good advice from fellow suffers before and desperately need your help more than ever now before I go totally bonkers. Weaned myself completely off Ropinirole about 2 months ago now which was pretty horrendous as I had been taking them for such a long time. My doctor prescribed
Scattypatty
in
Restless Legs Syndrome
5 years ago
RLS or not
I’m not sure whether I have a mild form of RLS or not. It’s a feeling of heaviness in my legs and I have to move them They don’t move on their own. It’s seems to radiate from my back I have spoken to my GP a few times but it seems to be dismissed. One said to drink tonic water, which I have. It just
I’m not sure whether I have a mild form of RLS or not. It’s a feeling of heaviness in my legs and I have to move them They don’t move on their own. It’s seems to radiate from my back I have spoken to my GP a few times but it seems to be dismissed. One said to drink tonic water, which I have. It just
Deevee
in
Restless Legs Syndrome
5 years ago
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Where to get an iron infusion?
Some people are having trouble finding where to go for an iron infusion at a reasonable price. If your anemic its no problem and your GP should arrange it for you with no questions. If your not anemic it seems you have to go to a private clinic or hospital and pay for it. If your not anemic and you have
Some people are having trouble finding where to go for an iron infusion at a reasonable price. If your anemic its no problem and your GP should arrange it for you with no questions. If your not anemic it seems you have to go to a private clinic or hospital and pay for it. If your not anemic and you have
Graham3196
in
Restless Legs Syndrome
5 years ago
Sulphazaine and anaemia
Hi In new to the group.... Has anyone developed anaemia resulting from taking Sulphasazine ? This was my first treatment I was just starting week 6 of taking this drug when my hb went down to 72. My platelets and other blood work was degranged. I had to have a blood transfusion My consultant was adamant
Hi In new to the group.... Has anyone developed anaemia resulting from taking Sulphasazine ? This was my first treatment I was just starting week 6 of taking this drug when my hb went down to 72. My platelets and other blood work was degranged. I had to have a blood transfusion My consultant was adamant
Nwad68
in
NRAS
5 years ago
What supplements do folk use for PMR ?
I was wondering what supplements people use with PMR to help both the condition and to counteract the pred side effects? I’m coming up to the first anniversary of diagnosis and have tapered to about 6mg which I can’t get below at the moment. I supplement with Fultium D3 daily and a cod liver oil capsule
I was wondering what supplements people use with PMR to help both the condition and to counteract the pred side effects? I’m coming up to the first anniversary of diagnosis and have tapered to about 6mg which I can’t get below at the moment. I supplement with Fultium D3 daily and a cod liver oil capsule
Mikeysaab
in
PMRGCAuk
5 years ago
Getting Better
I was diagnosed with pre osteoporosis in T1 to T3 and and in hips two years ago. I retired 6 months later and now walk for 1.5 to 2 hrs a day. Lost 1.5 stone and eating right with lots of veg and oats and prunes and nuts. Just had another bone scan and it’s gone from my hips and getting better in my
I was diagnosed with pre osteoporosis in T1 to T3 and and in hips two years ago. I retired 6 months later and now walk for 1.5 to 2 hrs a day. Lost 1.5 stone and eating right with lots of veg and oats and prunes and nuts. Just had another bone scan and it’s gone from my hips and getting better in my
Ailsa67
in
Bone Health and Osteoporosis UK
5 years ago
Change of painkillers - advice needed!
Hi folks, I have been on Co-codamol 30/500 four times a day for two years but started having horrible headaches a few months ago so I tapered it off with a view to stopping it. My GP said most painkillers stop working after a while anyway. I managed to stop Co-codamol completely two weeks ago, no headaches
Hi folks, I have been on Co-codamol 30/500 four times a day for two years but started having horrible headaches a few months ago so I tapered it off with a view to stopping it. My GP said most painkillers stop working after a while anyway. I managed to stop Co-codamol completely two weeks ago, no headaches
Hidden
in
Pain Concern
5 years ago
Injection frequency for Vitamin B12
I have been diagnosed with severe deficiency of B12 a month ago. My B12 level was 95 pmol/l (which is 42.27 ng/ml) and Active B12 level was 18 pmol/l (8.01 ng/ml) . I presented my GP and Neurologist with slow movements of right arm, right hand fingers and leg. I have sort of little burning sensation
I have been diagnosed with severe deficiency of B12 a month ago. My B12 level was 95 pmol/l (which is 42.27 ng/ml) and Active B12 level was 18 pmol/l (8.01 ng/ml) . I presented my GP and Neurologist with slow movements of right arm, right hand fingers and leg. I have sort of little burning sensation
lucldh
in
Pernicious Anaemia Society
5 years ago
Sulfasalazine
What’s people’s experience of Sulfasalazine? I’m on my second week so now taking 2 tablets per day, increasing to 4 tabs by week 4. I was fine on 1 tablet but since increasing to 2 tablets 5 days ago, I’m feeling really weak, shaky & nauseous. I’m still in a flare up and unfortunately Prednisolone and
What’s people’s experience of Sulfasalazine? I’m on my second week so now taking 2 tablets per day, increasing to 4 tabs by week 4. I was fine on 1 tablet but since increasing to 2 tablets 5 days ago, I’m feeling really weak, shaky & nauseous. I’m still in a flare up and unfortunately Prednisolone and
Hidden
in
NRAS
5 years ago
Have to laugh
Been one of those weeks but i can see the funny side now. I had a "lesion" removed from my cheek - just 2 stitches and a local anaesthetic. All good- except it made it v hard to use my inhalers-not a problem I had anticipate! I took one dose of co-codamol and wished I hadn't- nearly fell over! And changed
Been one of those weeks but i can see the funny side now. I had a "lesion" removed from my cheek - just 2 stitches and a local anaesthetic. All good- except it made it v hard to use my inhalers-not a problem I had anticipate! I took one dose of co-codamol and wished I hadn't- nearly fell over! And changed
goat-lady
in
Lung Conditions Community Forum
5 years ago
Back in hospital -physically & emotionally drained. Surgery or persevere with injections?
So I’m writing this post from my hospital bed feeling like I’ve reached breaking point. It’s my 3rd time in hospital in 3 weeks due to the pain from severe endometriosis & chocolate cyst. Started hormone injections & HRT 3 weeks ago Each time they’ve tried different pain relief which works temporarily
So I’m writing this post from my hospital bed feeling like I’ve reached breaking point. It’s my 3rd time in hospital in 3 weeks due to the pain from severe endometriosis & chocolate cyst. Started hormone injections & HRT 3 weeks ago Each time they’ve tried different pain relief which works temporarily
Hencharl99
in
Endometriosis UK
5 years ago
Getting pregnant after 40
Hello lovelies! I had a miscarriage three weeks ago and decided to give things a good go for the next 6 months to a year. I am 41 and I am feeling time closing on me FAST! I am researching a lot at the moment and trying to improve my diet and lifestyle. If you guys have anything to share, please do,
Hello lovelies! I had a miscarriage three weeks ago and decided to give things a good go for the next 6 months to a year. I am 41 and I am feeling time closing on me FAST! I am researching a lot at the moment and trying to improve my diet and lifestyle. If you guys have anything to share, please do,
Buba_
in
Pregnancy and Parenting Support
5 years ago
Ferritin vs HB as proxy for iron deficiency / iron anaemia
Hi, My first time commenting here! When assessing a child for their likelihood of having a coeliac condition - a child with an IG(A) deficiency, what vitamin insufficiencies do you look at to support or rule out a potential case. My son’s doctor has said that the only important thing to look at, when
Hi, My first time commenting here! When assessing a child for their likelihood of having a coeliac condition - a child with an IG(A) deficiency, what vitamin insufficiencies do you look at to support or rule out a potential case. My son’s doctor has said that the only important thing to look at, when
HowNowWhatNow
in
Gluten Free Guerrillas
5 years ago
The pill
Hi I've been taking co cyprindiol as a contraceptive till. I've been on it for 21 days. I've stopped taking as you take a break for 7 days, this is where you get a bleed. I am now on my 3rd day and havent had my bleed. Should I be worried or is this normal. Thank you
Hi I've been taking co cyprindiol as a contraceptive till. I've been on it for 21 days. I've stopped taking as you take a break for 7 days, this is where you get a bleed. I am now on my 3rd day and havent had my bleed. Should I be worried or is this normal. Thank you
Kush123
in
IBS Network
5 years ago
Osteoporosis - improving bone strength without prescription drugs
I am a new member and I now see that the way I wrote my first post was not easy to read - my apologies. In December 2015 I was 64 years old and my DEXA scan results were:- Spine T = -2.5 Hip T = -0.6 Femoral neck 0.657 g/cm2 In December 2018 my DEXA scan results were:- Spine T = -2.5 Hip
I am a new member and I now see that the way I wrote my first post was not easy to read - my apologies. In December 2015 I was 64 years old and my DEXA scan results were:- Spine T = -2.5 Hip T = -0.6 Femoral neck 0.657 g/cm2 In December 2018 my DEXA scan results were:- Spine T = -2.5 Hip
BigBerth
in
Bone Health and Osteoporosis UK
5 years ago
Wrist arthroscopy
I had a wrist arthroscopy yesterday and they filed down some cartilage do to my wrist healing wrong from a 4-year-old break. I am in a lot of pain even with 30/500 co-codamol Is this normal
I had a wrist arthroscopy yesterday and they filed down some cartilage do to my wrist healing wrong from a 4-year-old break. I am in a lot of pain even with 30/500 co-codamol Is this normal
Noone1
in
Pain Concern
5 years ago
Damage caused by speculum
I had injection in right eye with eyelea last Friday. As numbing drops wore off I had excruciating unbearable pain in my eye. Had to keep eyes closed & dsperately try not to allow my eyes to move at all. Had to get my daughter over to take me to A&E where, after long wait, was told by ophthalmologist
I had injection in right eye with eyelea last Friday. As numbing drops wore off I had excruciating unbearable pain in my eye. Had to keep eyes closed & dsperately try not to allow my eyes to move at all. Had to get my daughter over to take me to A&E where, after long wait, was told by ophthalmologist
folkmusicilike
in
Macular Society
5 years ago
Advice/experiences of removing merina coil and managing endo hormone free?
Hi Everyone, I wanted to get peoples experiences of managing with endo without any hormones. I have always reacted badly to hormones, they don't agree with me at all. I've tried multiple pills, depo injections, implant and prior to diagnosis through a lap (July 2018) I was on the non-hormonal copper
Hi Everyone, I wanted to get peoples experiences of managing with endo without any hormones. I have always reacted badly to hormones, they don't agree with me at all. I've tried multiple pills, depo injections, implant and prior to diagnosis through a lap (July 2018) I was on the non-hormonal copper
GemB
in
Endometriosis UK
5 years ago
Anal Skin Tag/Growth???
Anal Skin Tag!! (urgh) Long story short (& sorry for lots of TMI)....I have been loosely diagnosed by my GP with a rare bowel disease following my faecal calprotectin reading being 2100 ug/g. Yes 2100. This is following an initial colonoscopy 5 years ago where they found lots of scattered ulcers and
Anal Skin Tag!! (urgh) Long story short (& sorry for lots of TMI)....I have been loosely diagnosed by my GP with a rare bowel disease following my faecal calprotectin reading being 2100 ug/g. Yes 2100. This is following an initial colonoscopy 5 years ago where they found lots of scattered ulcers and
jmh4leo
in
IBS Network
5 years ago
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