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Mast cells and RLS
I am convinced that for myself and possibly others like me, that my RLS is a mast cell activation problem. I never had RLS until my 60s when I was living in a house that had a hidden pipe leak and hidden mold. So I don't think mine is genetic. But recently as I have learned about MCAS (mast cell activation
I am convinced that for myself and possibly others like me, that my RLS is a mast cell activation problem. I never had RLS until my 60s when I was living in a house that had a hidden pipe leak and hidden mold. So I don't think mine is genetic. But recently as I have learned about MCAS (mast cell activation
Bernaldi
in
Restless Legs Syndrome
28 days ago
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
4 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
5 months ago
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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
5 months ago
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
6 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
7 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
8 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
ED, ADT and Orgasm
I've been on Lupron for prostate cancer and am in my 4th of 6 months. I finished radiation therapy a month ago. I'm able to get a really good erection from 100 mg of Viagra but require direct stimulation. Before ADT, I could get hard just *thinking* about sex. Several guys have told me I'm lucky I
I've been on Lupron for prostate cancer and am in my 4th of 6 months. I finished radiation therapy a month ago. I'm able to get a really good erection from 100 mg of Viagra but require direct stimulation. Before ADT, I could get hard just *thinking* about sex. Several guys have told me I'm lucky I
PrettyUnhappyGuy
in
Erectile Dysfunction Support
11 hours ago
Just and update
Thought I'd update...many of you are familiar with my clinical history (attached). In April, I met with my radiologist and oncologist, we agreed to come off Orgovyx after 12 months plus SBRT to a single PLN node identified in a March 2023 scan. My oncologist favored six more months, well, pretty sure
Thought I'd update...many of you are familiar with my clinical history (attached). In April, I met with my radiologist and oncologist, we agreed to come off Orgovyx after 12 months plus SBRT to a single PLN node identified in a March 2023 scan. My oncologist favored six more months, well, pretty sure
Hawk56
in
Advanced Prostate Cancer
12 hours ago
What type of NDT product/brand might suit me? Please help :)
Hello Everyone, I have Hypothyroidism and severe Hypothyroid myopathy. Hypothyroid myopathy makes me: • Very stiff and weak in muscles and joints • Can't work or study • Spend most of the day stretching or lying on the couch or walking outside I have been taking Levothyroxine for almost a
Hello Everyone, I have Hypothyroidism and severe Hypothyroid myopathy. Hypothyroid myopathy makes me: • Very stiff and weak in muscles and joints • Can't work or study • Spend most of the day stretching or lying on the couch or walking outside I have been taking Levothyroxine for almost a
KJELLSTROM1234
in
Thyroid UK
1 day ago
T3 private source
I wonder is it possible to source T3 outside of UK as you can with NDT? Been on NDT a few years but this latest batch doesn’t seem to suit like it usually does. Please PM me if know of a reliable source. Thank you.
I wonder is it possible to source T3 outside of UK as you can with NDT? Been on NDT a few years but this latest batch doesn’t seem to suit like it usually does. Please PM me if know of a reliable source. Thank you.
Veritate
in
Thyroid UK
1 day ago
Erectile dysfunction meds and side effects
My husband is getting brachytherapy in September and then IG IMRT in October. He is currently on Orgovyx for month two and will be adding zytega next month. Good news is that his PSA has gone to 2 and Testosterone to 9 after a month on Firmagon so meds seem to be doing what are supposed to. Drs have
My husband is getting brachytherapy in September and then IG IMRT in October. He is currently on Orgovyx for month two and will be adding zytega next month. Good news is that his PSA has gone to 2 and Testosterone to 9 after a month on Firmagon so meds seem to be doing what are supposed to. Drs have
SherryKahn
in
Advanced Prostate Cancer
2 days ago
Help deciding on treatment
Discovered this forum a month ago and have found it to be a wealth of information, with very educated/informed members. Hoping that you can spread some of your wisdom and help my finalize my decision with treatment. I've posted more details in my profile as well as write ups from MSKCC on my Biopsy
Discovered this forum a month ago and have found it to be a wealth of information, with very educated/informed members. Hoping that you can spread some of your wisdom and help my finalize my decision with treatment. I've posted more details in my profile as well as write ups from MSKCC on my Biopsy
MrGreenJeans
in
Prostate Cancer Network
2 days ago
A other appointment to nhs endocrinologist🙄
Hi everyone ❤️ So I spoke to gp today in regards to the endocrinologist report from June 21st in which the endocrinologist as recommended I see an endo who will pescribe ndt 😡 this appointment is at Newcastle RIV, does anyone know if they have a good endocrinologist at Newcastle RIV??,I have no idea
Hi everyone ❤️ So I spoke to gp today in regards to the endocrinologist report from June 21st in which the endocrinologist as recommended I see an endo who will pescribe ndt 😡 this appointment is at Newcastle RIV, does anyone know if they have a good endocrinologist at Newcastle RIV??,I have no idea
birkie
in
Thyroid UK
2 days ago
Hormone therapy for the older generation
My calendar is telling me that I've just completed 12 months of hormone therapy (prostap) and my PSA after radio and brachytherapy when last measured was 0.01. I'm nearly 77 and after 12 months, I'm really suffering from complete lack of energy, just getting out of bed in the morning is hard work, I
My calendar is telling me that I've just completed 12 months of hormone therapy (prostap) and my PSA after radio and brachytherapy when last measured was 0.01. I'm nearly 77 and after 12 months, I'm really suffering from complete lack of energy, just getting out of bed in the morning is hard work, I
tunybgur
in
Advanced Prostate Cancer
2 days ago
Zometa and Dexa scan
Onco has suggested Zometa as husband has been on ADT for several years. I am reluctant to throw another med at him if it's not definitely necessary. So would you recommend Dexa scan to check for problems before simply accepting Zometa? [Further info: He has never had bone mets show on regular nuclear
Onco has suggested Zometa as husband has been on ADT for several years. I am reluctant to throw another med at him if it's not definitely necessary. So would you recommend Dexa scan to check for problems before simply accepting Zometa? [Further info: He has never had bone mets show on regular nuclear
Proflac
in
Advanced Prostate Cancer
2 days ago
A maternal brain hormone that builds bone - Nature - Published: 10 July 2024
[i]This recent research paper in Nature is potentially ground-breaking for the understanding of essential mechanisms involved with bone health. It's findings are related to hormonal changes during the start of mid-pregnancy lactation and early newborn nurturing that could possibly lay the foundation
[i]This recent research paper in Nature is potentially ground-breaking for the understanding of essential mechanisms involved with bone health. It's findings are related to hormonal changes during the start of mid-pregnancy lactation and early newborn nurturing that could possibly lay the foundation
cujoe
in
Fight Prostate Cancer
2 days ago
One last push ..please...help for my Dad. NHS treatments no longer viable - Pca stage 4.
Guys...do not know how to connect this post to my previous ones..sorry. I'm also all over the place, forgive my ramblings! I have finally gotten hold of Dad's records. Nothing more NHS can do, so am looking at Turkey for Lu 177. I know this is an option, but want to literally exhaust anything in the
Guys...do not know how to connect this post to my previous ones..sorry. I'm also all over the place, forgive my ramblings! I have finally gotten hold of Dad's records. Nothing more NHS can do, so am looking at Turkey for Lu 177. I know this is an option, but want to literally exhaust anything in the
kikinini
in
Advanced Prostate Cancer
3 days ago
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