I groaned and thought another feminist issue, will it never go away. Since I was 18, I have been arguing for equal rights in one way and another.
I then thought about PMR & GCA and it came into my head, that with most men PMR goes into remission within 2 to 3 years and that was the figure used in the old guidelines, the same goes, as I found out, for most auto-immune illnesses.
As the book had been recommended to me, I thought, OK I have not anything better to do at present, the weather was not good and no going out or decent enough weather to garden.
After 5 years of GCA about 6 months later I had a heart issue. I did not realise what is was, it started as indigestion etc and I was looking for arm ache (there was none). To cut a long story short, I ended up in hospital and it eventually turned out to be arrythmia on top of A/F.
The Cardio Guy, who is a lovely person and I still see him every 3 months (except this time it was just by telephone) that I must understand that women presented differently from men when experiencing a heart attack. He told me what to look out for and I have never forgotten what he told me.
I wish every woman would take the time to read this book and then pass it on to a medical man.
Things really need to change, not for me, I am into overtime - but for those women who will follow along.
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jinasc
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Yes, my wife is still in the process of reading this book, and has sent a copy of it to our grandson who is doing a PhD in bio medicine in Switzerland as she felt he needed to know!
She (my wife) had been "going on" about this issue for some years, and thinks it ought to be mandatory reading for all medical students.
This also comes up as an issue in Bill Bryson's book The Body.
I'm reading a similar tome by Maya Dusenbury called Doing harm - why women get over-looked and mistreated in medicine. The recent news about women having to fight for years to be taken seriously about concerns of things like the mesh implants, endometriosis etc makes me realise the struggle is so much harder for women still. It's probably why no research has gone into PMR and GCA because it's just aches and pains elderly women have to put up with. Even the guideines seem to be written about some mythical creature who gets over PMR in 18 months not the people on these forums! I just read an article from 2014 about how women are deemed 'steroid resistant' because their PMR didn't go away in 18 months, whereas the men's all did. I'll dig it out because for the life of me I couldn't understand how they came to the conclusions they did, that it was the TCZ that made a difference, it was so obvious there was a difference in response between the men and women.
Standard pharmaceutical procedure - if they did just women's responses separately they would often lose half their target population. Statins being a case in point ...
That's what my book says, women are too complicated to experiment on with all the variable hormones etc so they just used to do the trials on men and assume the same meds will also work on women! Now they include women in trials but then ignore their results because they don't fit with what they want the conclusion to be.
When Roche were looking to commence trials on TCZ, (big pharma have to involve patients with the relevant illness before they can even start a trial.
I had provided 10 of the patients from all over the UK and knew 2 others and soon got to know 1 in the bar. Turned out he loved brandy and I had ordered one and did not have my purse, just going to put it on my room number when he paid.
Roche paid for everything else, including insurance from door to door, 4 star hotel and first class travel.
Roche were unlucky enough to contact me....................I had a ball and it ended up 50/50 and I did feel a little sorry for the experts.
The Freeman in the North East was one of the 14 hospitals (mind they were not all in theUK) chosen to participate in the trial and guess what, one of the women members, fitted the criteria to take part in the trial. I was always worried that 14 were not enough, but the regs says that was OK.
I would always advise people to think seriously about taking part in a trial.
Top medical access 24 hours a day every day, including Bank Holidays. When a trial ends still priority access for quite a while.
I finally had a look at this and read the introduction to the book. It's on order. Even though it's available on Kindle I decided it warranted having a hard copy. Looking forward to reading it.
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Bumps in the road. PMR tapering seems to have provoked GCA
Finally a confirmation of diagnosis!
Well, that was a funny old do!
