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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
5 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
5 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
5 months ago
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Longest bout of RLS 13 days of no sleep
I’m exhausted! I twitch and full body movements every night until 3AM then wake up at 6. On top of the RLS, I have now developed an upper respiratory infection. I was prescribed cough syrup with phenegran and it made me have the worst ever attack. I have called the doctor and he gave me gabapentin and
I’m exhausted! I twitch and full body movements every night until 3AM then wake up at 6. On top of the RLS, I have now developed an upper respiratory infection. I was prescribed cough syrup with phenegran and it made me have the worst ever attack. I have called the doctor and he gave me gabapentin and
Bulldogmom2003
in
Restless Legs Syndrome
9 months ago
Therapulse - Do I really need to scale up slowly the way the maker says to?
I've had RLS for decades & currently take Horizant, methadone, and a small amount of Mirapex (I ran into trouble when I tried to drop the Mirapex completely so my specialist suggested leaving a small amount in for now). To help further lower my med doses, or to help with handling flareups without increasing
I've had RLS for decades & currently take Horizant, methadone, and a small amount of Mirapex (I ran into trouble when I tried to drop the Mirapex completely so my specialist suggested leaving a small amount in for now). To help further lower my med doses, or to help with handling flareups without increasing
UsableThought
in
Restless Legs Syndrome
9 months ago
Stuck cough on the throat
Hi Everyone, My mum had her meal this evening and looks like the food went the wrong way, she has been coughing, she feels like there is cough around her throat that she can’t seem to cough, Has anyone experienced this?
Hi Everyone, My mum had her meal this evening and looks like the food went the wrong way, she has been coughing, she feels like there is cough around her throat that she can’t seem to cough, Has anyone experienced this?
Candor8
in
PSP Association
5 months ago
Cold Calling
I have suddenly started receiving calls from healthcare businesses. Two this week, I must have clicked on something.
I have suddenly started receiving calls from healthcare businesses. Two this week, I must have clicked on something.
Tykelady
in
Lung Conditions Community Forum
5 months ago
Cold weather trigger?
Does anyone else find that getting cold or being out in cold weather / air can cause problems?Cold air in the throat while out power walking, or simply realising I'm cold - it happened today - can combine to make me realise I'm going to become tachy and need warmth and to sit down (get a pip Bisoprolol
Does anyone else find that getting cold or being out in cold weather / air can cause problems?Cold air in the throat while out power walking, or simply realising I'm cold - it happened today - can combine to make me realise I'm going to become tachy and need warmth and to sit down (get a pip Bisoprolol
Garaidh
in
Atrial Fibrillation Support
5 months ago
RLS regimen for occasional big flare-ups?
I’m in the process of switching from Pramipexole to Pregabalin. To help ease the transition - Just got a Rx today for buprenorphine/naloxone (2/.5mg); I intend to cut the strips into fourths. Assuming all goes well with the rest of the transition, I’m wondering what people do to manage flare-ups?
I’m in the process of switching from Pramipexole to Pregabalin. To help ease the transition - Just got a Rx today for buprenorphine/naloxone (2/.5mg); I intend to cut the strips into fourths. Assuming all goes well with the rest of the transition, I’m wondering what people do to manage flare-ups?
707twitcher
in
Restless Legs Syndrome
9 months ago
what to do? Take .25mg Pramipexole and 7.5mg zopiclone for 2 or 3 nights? Or not?
Cannabis isnt effective atm so I need a 5 day break. Being sleep deprived from RL and insomnia just now is awful. I can't see my doctor to discuss methadone till after New Year. What to do? Doctor prescribed .25mg Pramipexole to try, but I'm too worried about augmentation to take these. BUT....I'm exhausted
Cannabis isnt effective atm so I need a 5 day break. Being sleep deprived from RL and insomnia just now is awful. I can't see my doctor to discuss methadone till after New Year. What to do? Doctor prescribed .25mg Pramipexole to try, but I'm too worried about augmentation to take these. BUT....I'm exhausted
Rayme
in
Restless Legs Syndrome
9 months ago
Rituximab- cold- flu - covid
Good day everyone I’m 8 weeks into my Rtx infusion and was exposed to someone who had one of the above. I’m literally …. bricks. Any thoughts please? Thank you
Good day everyone I’m 8 weeks into my Rtx infusion and was exposed to someone who had one of the above. I’m literally …. bricks. Any thoughts please? Thank you
ks1966
in
NRAS
5 months ago
chest infection
I am currently tapering from 30mg to 25mg prednisolone for GCA. (been taking pred since February). I have had a productive cough and what I believe is a chest infection for 2 weeks. It is definitely better this week than last week and the guaifenesin I have taken has helped. I do not feel unwell
I am currently tapering from 30mg to 25mg prednisolone for GCA. (been taking pred since February). I have had a productive cough and what I believe is a chest infection for 2 weeks. It is definitely better this week than last week and the guaifenesin I have taken has helped. I do not feel unwell
kalgoorlie
in
PMRGCAuk
5 months ago
Hydrocodone?
My doctor is prescribing hydrocodone for help with my restless legs during plane flights, in addition to my regular meds, ropinirole and pregabalin. Has anyone had experience with this? Thank you.
My doctor is prescribing hydrocodone for help with my restless legs during plane flights, in addition to my regular meds, ropinirole and pregabalin. Has anyone had experience with this? Thank you.
MountainWanderer
in
Restless Legs Syndrome
9 months ago
Period flu?
Just wondering if anyone is experiencing what I am. I underwent excision surgery for stage 3 endo in November, however more recently the pain is worsening again but right now that’s not the worst symptom- the last 3/4 months, either during or instantly after my period I’m hit with the WORST flu/cold
Just wondering if anyone is experiencing what I am. I underwent excision surgery for stage 3 endo in November, however more recently the pain is worsening again but right now that’s not the worst symptom- the last 3/4 months, either during or instantly after my period I’m hit with the WORST flu/cold
Ps-endo
in
Endometriosis UK
5 months ago
Need Advise
Can you all suggest, some simple ways to improve the mental stress and get some peace?
Can you all suggest, some simple ways to improve the mental stress and get some peace?
richitadutta
in
Anxiety and Depression Support
10 months ago
16 week midwife appointment
I went for my 16 week midwife appointment yesterday. All she did was BP and check my urine was kind of hoping she would check for babies heartbeat with the doppler but no. Is this normal? I have a high risk pregnancy for various reasons but main one being twins so just a bit worried. The rest of my appointments
I went for my 16 week midwife appointment yesterday. All she did was BP and check my urine was kind of hoping she would check for babies heartbeat with the doppler but no. Is this normal? I have a high risk pregnancy for various reasons but main one being twins so just a bit worried. The rest of my appointments
Tarasunny
in
Pregnancy and Parenting Support
11 months ago
COPD and Pneumonia
Hello. My mom has severe COPD and got out of the hospital last week after a 3 week stay for pneumonia. She’s had COPD for 16 years and just went on O2 about a year ago. She’s always done well with the COPD and never had an exacerbation until the pneumonia. I know it can take a very long time for the
Hello. My mom has severe COPD and got out of the hospital last week after a 3 week stay for pneumonia. She’s had COPD for 16 years and just went on O2 about a year ago. She’s always done well with the COPD and never had an exacerbation until the pneumonia. I know it can take a very long time for the
nyla668
in
Lung Conditions Community Forum
5 months ago
PMR again ?
I stopped pred on 8th October after 4 years and was OK until now. I have developed stiffness and aching in hips down to knees and am wondering whether the PMR has come again due to stress. I was diagnosed with breast cancer on 11th October and am currently on Letrozole to (hopefully !) shrink the tumour
I stopped pred on 8th October after 4 years and was OK until now. I have developed stiffness and aching in hips down to knees and am wondering whether the PMR has come again due to stress. I was diagnosed with breast cancer on 11th October and am currently on Letrozole to (hopefully !) shrink the tumour
Retallack
in
PMRGCAuk
10 months ago
Asthma
I’m on a course of steroids for my asthma is it normal to feel tired after a flare up as I wake up coughing in the night with a silly tickly cough and it has just left me feeling really tired , also what cough syrups are good for nighttime with out upsetting my asthma.
I’m on a course of steroids for my asthma is it normal to feel tired after a flare up as I wake up coughing in the night with a silly tickly cough and it has just left me feeling really tired , also what cough syrups are good for nighttime with out upsetting my asthma.
E44E44
in
Asthma Community Forum
5 months ago
autoimmunity
I went to Laurie Mischley’s alumni camp in August. One of the Labs that I decided to get done called Nuro zoomer I believe, had an interesting result. Turns out I have auto immunity to my glycine receptors. There’s not a whole lot about this online, but apparently in some cases it can cause parkinsonism
I went to Laurie Mischley’s alumni camp in August. One of the Labs that I decided to get done called Nuro zoomer I believe, had an interesting result. Turns out I have auto immunity to my glycine receptors. There’s not a whole lot about this online, but apparently in some cases it can cause parkinsonism
rebtar
in
Cure Parkinson's
11 months ago
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