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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
3 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
4 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
6 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
7 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
1 year 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
1 year ago
PSA Still Going Up
I had RP on January 2023, started ADT in May 2023 and went through 38 sessions of radiation. In November 2023, my PSA went down to 0.005 ng/mL. My PSA went up to 0.015 ng/mL in January 2024 and went up to 0.035 ng/mL in my current test. I know Tall Allen said the previous number was negligible because
I had RP on January 2023, started ADT in May 2023 and went through 38 sessions of radiation. In November 2023, my PSA went down to 0.005 ng/mL. My PSA went up to 0.015 ng/mL in January 2024 and went up to 0.035 ng/mL in my current test. I know Tall Allen said the previous number was negligible because
toyman79912
in
Advanced Prostate Cancer
4 hours ago
PSA 8 months after EBRT
I need some reassurance. I tend to worry a little bit so please let me know if the following is or could be somewhat normal. As per my history, I had 4+3 per Dr. Epstein, had Pylarify with no mets, seed implant LD brachytherapy in July 2023, EBRT 28 treatments finishing first of Oct 2023. RO said ADT
I need some reassurance. I tend to worry a little bit so please let me know if the following is or could be somewhat normal. As per my history, I had 4+3 per Dr. Epstein, had Pylarify with no mets, seed implant LD brachytherapy in July 2023, EBRT 28 treatments finishing first of Oct 2023. RO said ADT
electronics-guy
in
Prostate Cancer Network
6 hours ago
Why does Levothyroxine cause weight gain if it treats hypothyroidism, weight gain being a hypo symptom?
Shouldn't it help rectify hypo symptoms not make them worse? This baffles me! I wish I could revert back to Levothyroxine and use it together with T3 as NDT is extortionately priced, and not working brilliantly for me anymore, however, weight gain is my biggest fear, and I read so much about this on
Shouldn't it help rectify hypo symptoms not make them worse? This baffles me! I wish I could revert back to Levothyroxine and use it together with T3 as NDT is extortionately priced, and not working brilliantly for me anymore, however, weight gain is my biggest fear, and I read so much about this on
MindfulMoments
in
Thyroid UK
12 hours ago
Hot flashes?
On ADT and suffering? https://www.medpagetoday.com/meetingcoverage/asco/110457?xid=nl_mpt_morningbreak2024-06-04&eun=g2046106d0r&utm_source=Sailthru&utm_medium=email&utm_campaign=MorningBreak_060424&utm_term=NL_Gen_Int_Daily_News_Update_active That might help. I'm no longer on ADT so I can't speak
On ADT and suffering? https://www.medpagetoday.com/meetingcoverage/asco/110457?xid=nl_mpt_morningbreak2024-06-04&eun=g2046106d0r&utm_source=Sailthru&utm_medium=email&utm_campaign=MorningBreak_060424&utm_term=NL_Gen_Int_Daily_News_Update_active That might help. I'm no longer on ADT so I can't speak
Don_1213
in
Prostate Cancer Network
1 day ago
Should I be worried about suppressed TSH
I am extremely well and all my bloods seem within normal range to me (but not the GP)! I am 61 years old and was diagnosed with Hashimotos Thyroditis and Chronic Fatigue in 2004. My only health issue is very erratic sleep (one night 8 and a half hours, the next 4) which I handle by resting in the afternoon
I am extremely well and all my bloods seem within normal range to me (but not the GP)! I am 61 years old and was diagnosed with Hashimotos Thyroditis and Chronic Fatigue in 2004. My only health issue is very erratic sleep (one night 8 and a half hours, the next 4) which I handle by resting in the afternoon
YoginiDancer
in
Thyroid UK
1 day ago
Experiences of NDT v Levo and Lio
Hello again, I have been trialling NDT (2 grains since mid March 2024. I was previously on 75mcg Levo and 10mcg Lio (from NHS Endo) but still had symptoms. Both T4 and T3 levels are better on NDT yet I’m not feeling improvement. The private GP I saw increased my dose to 2.25 grains and I felt jittery
Hello again, I have been trialling NDT (2 grains since mid March 2024. I was previously on 75mcg Levo and 10mcg Lio (from NHS Endo) but still had symptoms. Both T4 and T3 levels are better on NDT yet I’m not feeling improvement. The private GP I saw increased my dose to 2.25 grains and I felt jittery
Piglet1956
in
Thyroid UK
1 day ago
Best alternative PET for PSMA negative PCa
Asking for a friend. He was diagnosed 3 years ago with high risk high volume (Gleason 3+5) PCa. Treated with EBRT + LDRBT + ADT (18 months). His PSA was undetectable but is now rising (3+) but PSMA-PET was negative, even in the prostate - implying PSMA non-avid cancer. What would be the best non-PSMA
Asking for a friend. He was diagnosed 3 years ago with high risk high volume (Gleason 3+5) PCa. Treated with EBRT + LDRBT + ADT (18 months). His PSA was undetectable but is now rising (3+) but PSMA-PET was negative, even in the prostate - implying PSMA non-avid cancer. What would be the best non-PSMA
Vynbal
in
Advanced Prostate Cancer
2 days ago
Anyone above 80 years -on triple therapy ?
Anyone over 80 years who has taken triple therapy - first and second generation ADT as well as chemo ? Could you please share how your experience of it was.
Anyone over 80 years who has taken triple therapy - first and second generation ADT as well as chemo ? Could you please share how your experience of it was.
Tinkudi
in
Advanced Prostate Cancer
2 days ago
Why is my TSH so low when my T4 T3 are so low?
Hi all can some please explain why my TSH is low despite my T4 T3 being low. Correct me if i have got it wrong but i have come to understand that TSH is released by the pituitary gland to stimulate release of more thyroid hormones if levlels are too low. Since 1993 i dont have a thyroid so i am on
Hi all can some please explain why my TSH is low despite my T4 T3 being low. Correct me if i have got it wrong but i have come to understand that TSH is released by the pituitary gland to stimulate release of more thyroid hormones if levlels are too low. Since 1993 i dont have a thyroid so i am on
DizzyD
in
Thyroid UK
2 days ago
Understanding the Threat of Micrometastases (also known as Minimal Residual Disease) in Prostate Cancer or Don't sweat the small stuff
Greetings followers of FPC; It is time to set things straight in regards to the oligometastatic state in prostate caner. Posters will tell you that it does not exist because of micrometastases. So let's take a look at micrometastases first. The dreaded micrometastases.....the ultimate death sentence
Greetings followers of FPC; It is time to set things straight in regards to the oligometastatic state in prostate caner. Posters will tell you that it does not exist because of micrometastases. So let's take a look at micrometastases first. The dreaded micrometastases.....the ultimate death sentence
NPfisherman
in
Fight Prostate Cancer
2 days ago
ADT failure
We saw my Dad's MO on 5/23. Over the course of 4 weeks my dad's PSA moved from 1.46 to 2.14, He said we need to be on Zytiga for three months before we can deem it a failure, but just like Xtandi, it appears my dad had limited help with it. We have talked about the next steps, chemo and pluvicto. My
We saw my Dad's MO on 5/23. Over the course of 4 weeks my dad's PSA moved from 1.46 to 2.14, He said we need to be on Zytiga for three months before we can deem it a failure, but just like Xtandi, it appears my dad had limited help with it. We have talked about the next steps, chemo and pluvicto. My
lgutman
in
Advanced Prostate Cancer
2 days ago
I want to give up. I have no energy to keep going.
Hi all, I've been suffering for the past many years. Since 2022 everything went downhill and I had to quit my job as I can't function. I'm 40 years old. I was tested for everything under the sun and everything is down to thyroid. I have Hashis. I have tried many med combos, everything fails on me. Recently
Hi all, I've been suffering for the past many years. Since 2022 everything went downhill and I had to quit my job as I can't function. I'm 40 years old. I was tested for everything under the sun and everything is down to thyroid. I have Hashis. I have tried many med combos, everything fails on me. Recently
Incoguto
in
Thyroid UK
3 days ago
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