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Switch from Besremi to Ruxolitinib
Dear all After 18 months on Besremi my oncologist and I made the decision to move on and so am starting on Rux. In brief, I titrated up from 100 ug (Sep 2022) to 500 ug Bes and was at that dose for 9 months. I was CHR for the last 5 months of this period. My platelet count however crashed in Oct
Dear all After 18 months on Besremi my oncologist and I made the decision to move on and so am starting on Rux. In brief, I titrated up from 100 ug (Sep 2022) to 500 ug Bes and was at that dose for 9 months. I was CHR for the last 5 months of this period. My platelet count however crashed in Oct
gjh8733
in
MPN Voice
2 months ago
Itching and Hives
hello!! I was wondering if anyone has the same problems as me and can offer some advice! Since about age 9 (I am 26 now) I have been getting hives throughout my whole body every single day. My doctors can’t figure out what’s going on and no medication helps! I am on Plaquenil, Gabapentin, Zyrtec,
hello!! I was wondering if anyone has the same problems as me and can offer some advice! Since about age 9 (I am 26 now) I have been getting hives throughout my whole body every single day. My doctors can’t figure out what’s going on and no medication helps! I am on Plaquenil, Gabapentin, Zyrtec,
Shubertrachel
in
Fibromyalgia Action UK
3 months ago
New to MPN Voice
Hi, I'm in my upper 40s, diagnoses with PV several years ago. My platelets were just shy of 1.1M at the peak before starting Besremi in May 2023. At that time I was getting a phlebotomy about every 2.5 months to keep HCT below 45. Like others have said on this board, it seems the evidence is strong
Hi, I'm in my upper 40s, diagnoses with PV several years ago. My platelets were just shy of 1.1M at the peak before starting Besremi in May 2023. At that time I was getting a phlebotomy about every 2.5 months to keep HCT below 45. Like others have said on this board, it seems the evidence is strong
Luthorville
in
MPN Voice
3 months ago
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Itchy skin, scratchy eyes, heat and humidity…. 🤔
Good morning from Brisbane, Australia 👋🏻 I’ve got ET JAK2 pos and have started to get the itchies 😆 I have read that it’s common with PV but I wondered about ET? I’ve been trially contact lenses and my eyes aren’t so happy with them. I’ve tried a variety, some monthly’s, some dailies. My left eye
Good morning from Brisbane, Australia 👋🏻 I’ve got ET JAK2 pos and have started to get the itchies 😆 I have read that it’s common with PV but I wondered about ET? I’ve been trially contact lenses and my eyes aren’t so happy with them. I’ve tried a variety, some monthly’s, some dailies. My left eye
Pachena
in
MPN Voice
4 months ago
Help - What This Allergy or Asthma Can Be?
Hi guys, I need your help as my doctors do not give me much information or to be precise been with two allergy doctors, both gave me different opinions so i don't know what to do. Long story short, i'm a runner and after flu a year ago I started having issues with chest tightness during some of my runs
Hi guys, I need your help as my doctors do not give me much information or to be precise been with two allergy doctors, both gave me different opinions so i don't know what to do. Long story short, i'm a runner and after flu a year ago I started having issues with chest tightness during some of my runs
Desoo
in
Asthma Community Forum
5 months ago
Ra and ear problems
I have ra and am taking rinvoq. only recently started having some ear problems fluid on ears and a full feeling causing me to have trouble sleeping. I haven't had any signs of cold or allergies either. the doctor said to use Zyrtec which did not help and I was wondering if anyone has had any ear issues
I have ra and am taking rinvoq. only recently started having some ear problems fluid on ears and a full feeling causing me to have trouble sleeping. I haven't had any signs of cold or allergies either. the doctor said to use Zyrtec which did not help and I was wondering if anyone has had any ear issues
gnstric66
in
NRAS
6 months ago
Anxiety and A-Fib
I had anxiety over getting a Cochlear Implant done. I was taking Atarax on top of Zyrtec which causes QT Elongation. So I was diagnosed with AFIB and sent to the ER. Prescribed Metoprolol and a 81 mg aspirin. I didn't take the Metoprolol because it was on a Recall list by the FDA for 3 months as it
I had anxiety over getting a Cochlear Implant done. I was taking Atarax on top of Zyrtec which causes QT Elongation. So I was diagnosed with AFIB and sent to the ER. Prescribed Metoprolol and a 81 mg aspirin. I didn't take the Metoprolol because it was on a Recall list by the FDA for 3 months as it
FiberedOut555
in
AF Association
11 months ago
Update 7.6
Happy to say that the news remains favorable on all fronts. I reviewed my PV status with the MPN Specialist at Johns Hopkins. I remain in a complete hematologic response at 150mcg Besremi. Tolerance remains the same, with mild lymphopenia, borderline neutropenia, and mild itching. I switched to
Happy to say that the news remains favorable on all fronts. I reviewed my PV status with the MPN Specialist at Johns Hopkins. I remain in a complete hematologic response at 150mcg Besremi. Tolerance remains the same, with mild lymphopenia, borderline neutropenia, and mild itching. I switched to
hunter5582
in
MPN Voice
11 months ago
Liothyronine (LT3) prescribing in England: Are cost constraints inhibiting guideline implementation?
Whatever else, this demonstrates beyond any doubt that the cost of the liothyronine Active Pharmaceutical Ingredient is but a minor part of the price charged to the NHS. I'd argue that the simple fact that the NHS agrees these prices strongly suggests something VERY wrong with medicines procurement.
Whatever else, this demonstrates beyond any doubt that the cost of the liothyronine Active Pharmaceutical Ingredient is but a minor part of the price charged to the NHS. I'd argue that the simple fact that the NHS agrees these prices strongly suggests something VERY wrong with medicines procurement.
helvella
Thyroid UK
in
Thyroid UK
6 hours ago
Stopping Orgovyx after six months
My brother has PCa as well. We keep it in the family... He had a PT ten years ago but his PSA rose so he got salvage radiation and went on Orgovyx. His MO said he would be on it for 18 months, as is SOC. He didn't like his MO so he switched to a GU MO. That MO said the research showed six months of ADT
My brother has PCa as well. We keep it in the family... He had a PT ten years ago but his PSA rose so he got salvage radiation and went on Orgovyx. His MO said he would be on it for 18 months, as is SOC. He didn't like his MO so he switched to a GU MO. That MO said the research showed six months of ADT
gsun
in
Advanced Prostate Cancer
8 hours ago
Rise in psa
I had rp in 2021 with recurrence 12 months later to 1 lymph node. RT to 9lymph nodes and zoladex hormone therapy for 18 months. Psa has been undetectable for 12 months but just rose to 0.03. Do I need to wait until it rises to 2.0 as I've seen advice before or is there a more proactive approach? Thanks
I had rp in 2021 with recurrence 12 months later to 1 lymph node. RT to 9lymph nodes and zoladex hormone therapy for 18 months. Psa has been undetectable for 12 months but just rose to 0.03. Do I need to wait until it rises to 2.0 as I've seen advice before or is there a more proactive approach? Thanks
Runner1957
in
Advanced Prostate Cancer
14 hours ago
Internet Myths about Red Meat
I know that many men, egged on by well-meaning caregivers and sometimes doctors, deprive themselves of red meat. Some (non-Hindus) have an almost religious attachment to plant-based diets. I expect they will object to this article. For that reason, it goes into the weeds of what constitutes Internet
I know that many men, egged on by well-meaning caregivers and sometimes doctors, deprive themselves of red meat. Some (non-Hindus) have an almost religious attachment to plant-based diets. I expect they will object to this article. For that reason, it goes into the weeds of what constitutes Internet
Tall_Allen
in
Advanced Prostate Cancer
22 hours ago
Strong negative reaction to first Docetaxel treatment
I am participating in an NIH study combining Docetaxel with an immunotherapy. I had my first treatment of only Docetaxel this Tuesday. I lasted 2 minutes and 7cc before I had a severe reaction - severe flushing (glowing red from head to toe), difficulty breathing, sweating, uncontrollable shivering.
I am participating in an NIH study combining Docetaxel with an immunotherapy. I had my first treatment of only Docetaxel this Tuesday. I lasted 2 minutes and 7cc before I had a severe reaction - severe flushing (glowing red from head to toe), difficulty breathing, sweating, uncontrollable shivering.
4tunate1
in
Advanced Prostate Cancer
1 day ago
New research. Linking Amiodarone inhibiting levothyroxine just published.
I'm a little staggered this is new!! But it is.... And I've experienced a lot of problems with ndt tolerance level even 7 months since Amiodarone was stopped. Beginning to wonder whether Amiodarones had a permenant effect. In Vivo Evaluation of the Pharmacokinetic Interaction between Levothyroxine
I'm a little staggered this is new!! But it is.... And I've experienced a lot of problems with ndt tolerance level even 7 months since Amiodarone was stopped. Beginning to wonder whether Amiodarones had a permenant effect. In Vivo Evaluation of the Pharmacokinetic Interaction between Levothyroxine
waveylines
in
Thyroid UK
2 days ago
Update on prognosis for my husband with stage 4 A cancer.
I met with the Cornell team and the oncologist was against surgery and now they are suggesting radiation for two weeks 5 times a day by MRI guided machine and ADT for two years. Have a consult with Memorial Sloane Kettering next week then will make our decision. Feeling confused as want hubby to make
I met with the Cornell team and the oncologist was against surgery and now they are suggesting radiation for two weeks 5 times a day by MRI guided machine and ADT for two years. Have a consult with Memorial Sloane Kettering next week then will make our decision. Feeling confused as want hubby to make
SherryKahn
in
Advanced Prostate Cancer
2 days ago
Reactive hypoglycemia (suspected): low carb/ high protein diet.
Hello everyone. : I have suspected reactive hypoglycemia ( Hashis, MCAS, ME/ CFS, Fibromyalgia, amongst other diagnoses, as well as perimenopausal). Thyroid Meds: Armour NDT. The RH has not yet been confirmed by a medical professional, but due to the ongoing and worsening symptoms, and extreme carb
Hello everyone. : I have suspected reactive hypoglycemia ( Hashis, MCAS, ME/ CFS, Fibromyalgia, amongst other diagnoses, as well as perimenopausal). Thyroid Meds: Armour NDT. The RH has not yet been confirmed by a medical professional, but due to the ongoing and worsening symptoms, and extreme carb
Swissgirl
in
Thyroid UK
2 days ago
Toronto Prostate Cancer Specialist for Dad
My dad (68 years old) is visiting me (For my delivery in the first week of June) from India and he is going to be in Ontario, Canada for the next 3 months. He was diagnosed in Feb 2024 with a PSA of 24 and is completely asymptomatic. He is on hormone therapy with Gleason 8 and distant mets in his bones
My dad (68 years old) is visiting me (For my delivery in the first week of June) from India and he is going to be in Ontario, Canada for the next 3 months. He was diagnosed in Feb 2024 with a PSA of 24 and is completely asymptomatic. He is on hormone therapy with Gleason 8 and distant mets in his bones
Justgettingitright
in
Advanced Prostate Cancer
2 days ago
Advice on raising NDT
Following on from my post on 26/02/24, my symptoms got worse (increased number of anxiety attacks and unable to cope with pain in head/neck and upper back) and the GP didn't have any ideas, so I saw a thyroid specialist recommended by thyroid UK in April. The doctor had my blood tests done and these
Following on from my post on 26/02/24, my symptoms got worse (increased number of anxiety attacks and unable to cope with pain in head/neck and upper back) and the GP didn't have any ideas, so I saw a thyroid specialist recommended by thyroid UK in April. The doctor had my blood tests done and these
SarrahMay
in
Thyroid UK
2 days ago
Trying to interpret my results
Hi I was wondering if I could ask some advice regarding my latest results. I've just had bloods done so anticipating the usual conversation with my GP about my TSH being too low.... I've screen shot my results since 2015 basically as I've been tracking them as my TSH rarely changes, even with a reduction
Hi I was wondering if I could ask some advice regarding my latest results. I've just had bloods done so anticipating the usual conversation with my GP about my TSH being too low.... I've screen shot my results since 2015 basically as I've been tracking them as my TSH rarely changes, even with a reduction
Bellsonit
in
Thyroid UK
3 days ago
How quickly does TSH increase when you stop taking NDT?
I buy some of my NDT without a script, I take 120mg per day. My GP prescribes me 90mg a day. So I get the rest elsewhere. My GP doesn’t understand that TSH is suppressed on NDT, and I’m not going to be successful in educating him. My TSH was 0.01 on 150mg, but I reduced to 120mg about 5 or 6 weeks ago
I buy some of my NDT without a script, I take 120mg per day. My GP prescribes me 90mg a day. So I get the rest elsewhere. My GP doesn’t understand that TSH is suppressed on NDT, and I’m not going to be successful in educating him. My TSH was 0.01 on 150mg, but I reduced to 120mg about 5 or 6 weeks ago
CountryMidwife
in
Thyroid UK
3 days ago
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