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Hydroxyurea or not?
Hi everyone. I have been reading your posts for several months and need to introduce myself. I was diagnosed with PV Jak2 at age 65 and am now 73. Platelets high also. My treatments have been aspirin and phlebotomy every eight weeks if hematocrit is above 42 which it always is. Symptoms began about
Hi everyone. I have been reading your posts for several months and need to introduce myself. I was diagnosed with PV Jak2 at age 65 and am now 73. Platelets high also. My treatments have been aspirin and phlebotomy every eight weeks if hematocrit is above 42 which it always is. Symptoms began about
falconered53
in
MPN Voice
5 years ago
Shingles vaccine update
2 months ago I had the first of the two Shingrix vaccines and had a pretty awful reaction. Horrible arm soreness, blisters in my throat, throat swelling, fatigue so bad I really did not want to move. GP told me to go ahead and get the second shot. Hemeo doc said get the second shot. CLL specialist said
2 months ago I had the first of the two Shingrix vaccines and had a pretty awful reaction. Horrible arm soreness, blisters in my throat, throat swelling, fatigue so bad I really did not want to move. GP told me to go ahead and get the second shot. Hemeo doc said get the second shot. CLL specialist said
t2aa
in
CLL Support
5 years ago
PBC and bladder cancer
Hi. Has anyone here with PBC also been diagnosed with bladder cancer? Have had tumour removed and awaiting treatment plan possibly chemo using mitomycin into bladder or immunotherapy using BCG Wondererd if options might be limited due to having PBC?
Hi. Has anyone here with PBC also been diagnosed with bladder cancer? Have had tumour removed and awaiting treatment plan possibly chemo using mitomycin into bladder or immunotherapy using BCG Wondererd if options might be limited due to having PBC?
jrobertson1
in
PBC Foundation
5 years ago
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Flu Shot or Not?
I live in Perth, WA and we are experiencing a bad flu epidemic. I usually have a flu shot but haven’t had one since my PMR diagnosis last November after reading on this forum that some people thought the flu shot may have been a PMR trigger. Appreciate any thoughts and comments.
I live in Perth, WA and we are experiencing a bad flu epidemic. I usually have a flu shot but haven’t had one since my PMR diagnosis last November after reading on this forum that some people thought the flu shot may have been a PMR trigger. Appreciate any thoughts and comments.
JohnnyQ50
in
PMRGCAuk
5 years ago
Waiting to do next set of liver enzyme tests, obsessing about everything!
New to this group and want to thank all of you who contribute your stories, it’s been eye opening to say the least. I will do my next round of liver enzyme tests next week, which will be 3.5 weeks since the first tests. I will be traveling for 1 month shortly thereafter, that is why it wasn’t scheduled
New to this group and want to thank all of you who contribute your stories, it’s been eye opening to say the least. I will do my next round of liver enzyme tests next week, which will be 3.5 weeks since the first tests. I will be traveling for 1 month shortly thereafter, that is why it wasn’t scheduled
airlegs
in
British Liver Trust
5 years ago
New shingles vaccine
Everyone being treated for Prostate Cancer should consider getting the newer shingles vaccine. Given in two shots a couple of months apart, it is 90% effective compared to 50% for the old vaccine. Shingles can be very painful and debilitating and you should ask you PCP to arrange for the shots. I am
Everyone being treated for Prostate Cancer should consider getting the newer shingles vaccine. Given in two shots a couple of months apart, it is 90% effective compared to 50% for the old vaccine. Shingles can be very painful and debilitating and you should ask you PCP to arrange for the shots. I am
Mkeman
in
Advanced Prostate Cancer
5 years ago
Flu and flare
Last week, I felt a cold coming on. Sore throat, coughing, etc, I blamed it on my allergy to heavy seasonal pollen. I used inhalers and just plodded through....then 3 days ago, I woke in the night with teeth chattering chills, elevated temp, and all over body aches. A trip to the GP, who did an
Last week, I felt a cold coming on. Sore throat, coughing, etc, I blamed it on my allergy to heavy seasonal pollen. I used inhalers and just plodded through....then 3 days ago, I woke in the night with teeth chattering chills, elevated temp, and all over body aches. A trip to the GP, who did an
Purplecrow
in
PMRGCAuk
5 years ago
Post Hysterectomy Thyroid Woes
Hi all. I would truly appreciate any advice you can offer before my next doctor visit in 2 days time. After years of unsuccessfully controlling debilitating cramps and severe bloodloss, I finally relented to having a hysterectomy on Feb 13th 2019. I kept both ovaries, but after a 5 day stay in hospital
Hi all. I would truly appreciate any advice you can offer before my next doctor visit in 2 days time. After years of unsuccessfully controlling debilitating cramps and severe bloodloss, I finally relented to having a hysterectomy on Feb 13th 2019. I kept both ovaries, but after a 5 day stay in hospital
overunbykids
in
Thyroid UK
5 years ago
Shingles shots and PCa meds?
I'm on Lupron/Zytiga/Prednisone and soon on Xgeva. Has anyone been aware of any interactions between these meds and the new shingles vaccine? I will see my MO later this month but, as we all know, they don't know everything.
I'm on Lupron/Zytiga/Prednisone and soon on Xgeva. Has anyone been aware of any interactions between these meds and the new shingles vaccine? I will see my MO later this month but, as we all know, they don't know everything.
JazzMan42
in
Advanced Prostate Cancer
5 years ago
Vaccines
Could I get some feedback on Vaccines that were recommended to me by a general practitioner? Recommended were Pneumovax 23, influenza, Tdap, Shingles( not a live vaccine) and possibly Mmr vaccine . Ive had PV - jak2 617f positive in April of 2018 diagnosed . Im 57 year old female being treated with
Could I get some feedback on Vaccines that were recommended to me by a general practitioner? Recommended were Pneumovax 23, influenza, Tdap, Shingles( not a live vaccine) and possibly Mmr vaccine . Ive had PV - jak2 617f positive in April of 2018 diagnosed . Im 57 year old female being treated with
pvgirl
in
MPN Voice
5 years ago
Methotrexate and constant infections
Does anyone suffer with the same problem . Since I have been taking mtx I seem to pick up any infections that are around. Every time I visit my grandchildren I bring something home with me. Back in January whilst I was visiting my four year old grandson went down with bacterial pneumonia and I managed
Does anyone suffer with the same problem . Since I have been taking mtx I seem to pick up any infections that are around. Every time I visit my grandchildren I bring something home with me. Back in January whilst I was visiting my four year old grandson went down with bacterial pneumonia and I managed
Nanabrodie
in
NRAS
5 years ago
HRT
Had a RCA STEMI on Sunday night just gone. I’m now home and starting to process everything. Saw my GP today and he’s taken me off my HRT. Said I could now have free flu jab tho! I would rather have the HRT, do I definitely have to come off it? Looking online just reflects the ever changing stances on
Had a RCA STEMI on Sunday night just gone. I’m now home and starting to process everything. Saw my GP today and he’s taken me off my HRT. Said I could now have free flu jab tho! I would rather have the HRT, do I definitely have to come off it? Looking online just reflects the ever changing stances on
Sillyfroggy
in
British Heart Foundation
5 years ago
Early side effects from ADT + radiation
Hi there. I was hoping for some insight into early experiences form starting ADT and radiation treatment. Dad literally had his first hormone shot 6 days ago, and just started radiation to one spine met and also his prostate bed 5 days ago (prostate removed in 2010). The treatment has already knocked
Hi there. I was hoping for some insight into early experiences form starting ADT and radiation treatment. Dad literally had his first hormone shot 6 days ago, and just started radiation to one spine met and also his prostate bed 5 days ago (prostate removed in 2010). The treatment has already knocked
Mish80
in
Advanced Prostate Cancer
5 years ago
Precipitating factors
Maybe I’ve missed it, but I haven’t seen much discussion regarding what people think may have triggered their PMR. I realize I likely have the genetic make-up that allows my immune system to flip into overdrive, causing PMR. But I believe it doesn’t just occur; there is a triggering event. Clearly to
Maybe I’ve missed it, but I haven’t seen much discussion regarding what people think may have triggered their PMR. I realize I likely have the genetic make-up that allows my immune system to flip into overdrive, causing PMR. But I believe it doesn’t just occur; there is a triggering event. Clearly to
Joblow
in
PMRGCAuk
5 years ago
When’s the best time to get your flu shot?
Why we should get the flu shot each year, when to get it, when is it too late and much more by Ian Barr, Deputy Director, WHO Collaborating Centre for Reference and Research on Influenza: https://theconversation.com/whens-the-best-time-to-get-your-flu-shot-114978 Note this article was written for the
Why we should get the flu shot each year, when to get it, when is it too late and much more by Ian Barr, Deputy Director, WHO Collaborating Centre for Reference and Research on Influenza: https://theconversation.com/whens-the-best-time-to-get-your-flu-shot-114978 Note this article was written for the
AussieNeil
Partner
in
CLL Support
5 years ago
Flu and Flare-up
In early March I caught the flu. I completely lost my appetite. I didn't want to eat anything. On March 8th I felt so bad that I requested a home visit from the GP. She said that this year in the local community the flu seemed to be worse in the patients who had had the flu jab. She prescribed Tamiflu
In early March I caught the flu. I completely lost my appetite. I didn't want to eat anything. On March 8th I felt so bad that I requested a home visit from the GP. She said that this year in the local community the flu seemed to be worse in the patients who had had the flu jab. She prescribed Tamiflu
lfu2
in
Vasculitis UK
5 years ago
I can't explain how much your support means to me...... home with not doing great.
Hi family it's Fancy here. I made it home this past Thursday night but honestly I'm not doing well. I wanted to drop a line to thank you all for the loving, caring, and supportive posts I got from you. You don't know how very much it meant to me to hear those words from so many friends and family in
Hi family it's Fancy here. I made it home this past Thursday night but honestly I'm not doing well. I wanted to drop a line to thank you all for the loving, caring, and supportive posts I got from you. You don't know how very much it meant to me to hear those words from so many friends and family in
Fancy1959
CommunityAmbassador
in
My MSAA Community
5 years ago
I had PMR age 60, resolution after 1 year of prednisone. Now, 9 years later, it’s back.Any others with a long interval between episodes?
First time was after shingles vaccine; resolved and was able to taper off meds. Absolutely no problems for 9 years- thought it was gone for good. This time no obvious trigger except maybe stress.
First time was after shingles vaccine; resolved and was able to taper off meds. Absolutely no problems for 9 years- thought it was gone for good. This time no obvious trigger except maybe stress.
Joblow
in
PMRGCAuk
5 years ago
MRI Results
Had my appointment with neurologist. Hadn't seen him in almost two years. NO NEW LESIONS!! Seems apparent the relapse (call it pseudo or whatever you want) was from the shingles vaccine. While I was there doc talked for an hour about anti-inflammatory diet. Gave me both Overcoming ME and Wahls Protocal
Had my appointment with neurologist. Hadn't seen him in almost two years. NO NEW LESIONS!! Seems apparent the relapse (call it pseudo or whatever you want) was from the shingles vaccine. While I was there doc talked for an hour about anti-inflammatory diet. Gave me both Overcoming ME and Wahls Protocal
Karen-x
in
My MSAA Community
5 years ago
Hope and great help for everyone experiencing behcet disease
Hi everyone, this behcet is breaking me down, it's not easy for me to bear, I feel everyone of you, here is what I do, I'm always on colchicine, but I don't have insurance so, I take fruit, like strawberry , cut it and add honey to it,eat it it's help great, also I drink Apple cider vinegar half a cup
Hi everyone, this behcet is breaking me down, it's not easy for me to bear, I feel everyone of you, here is what I do, I'm always on colchicine, but I don't have insurance so, I take fruit, like strawberry , cut it and add honey to it,eat it it's help great, also I drink Apple cider vinegar half a cup
Graciously
in
Behçet's UK
5 years ago
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