For men only, again: So, I appreciate all of you... - PMRGCAuk

PMRGCAuk

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For men only, again

So, I appreciate all of you ladies on this forum, but would like to hear more from men afflicted with this disease.

I would like to know how long your stiffness/ pain lasts in the morning, and if it ever resolved completely later in the day.

I am almost 71 and have been on pred for almost a year and a half. I take my current dose of 10mg at 2 AM, but am still stiff and have some pain, mostly in hips, back and legs, until about lunchtime. After lunch, if I have not done too much in the gym, I am mostly pain free until the next morning. I hesitate to reduce any more at this point and will stay on 10mg for another month, and then resume my reduction by 1/4 mg every 10-15 days.

I don’t have a question, nor am I asking for any advice. I would just like to have some kind of solidarity with my male counterparts, and hear how that are doing with this.

Written by

Manchild

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41 Replies

•

Yellowbluebell5 years ago

Irrelevant about the male/female thing, maybe cutting down on gym work would help get rid of some of the pain you are experiencing. Otherwise I would personally think you are not on enough pred. I realise you didn't ask a question but just thought I would just comment on the exercise side of your post. I am sure others will be along to help advise and hopefully some of the menxx

Manchild• in reply toYellowbluebell5 years ago

Hi, I really think the “male thing” is not irrelevant in that our basic chemistry, such as hormones, are very different. So, it is very possible that men metabolise pred differently than women. Also, I think most men, of course not all, push more physically and therefore, probably cause themselves more pain unnecessarily. However, we are what we are.

Yellowbluebell• in reply toManchild5 years ago

Thats fine and i only said irrelevant of sex because we give the same advice about not overdoing the exercise to everyone. Hopefully you will get some helpful responses.

Tonch5 years ago

Hi, I think I’m qualified to reply here. I’m almost 60, 5mg Pred from 15mg 5 months ago. Yes i’m also stiff when I get up, but tolerable and are fine by lunchtime. Take Pred at breakfast 7am before work. Don’t get to go the gym in week as work full time, but no problems at gym weekends and evenings and I think it’s great you go to the gym regularly at 70 and keep up the good work. Seems us guys usually have it easier than the ladies, although perhaps we just get on with things? 😉

Yellowbluebell• in reply toTonch5 years ago

Totally and utter male chauvinistic attitude to the women on this forum. Watch your behaviour or you wiil be restricted.

Tonch• in reply toYellowbluebell5 years ago

Think you need some male moderators! 😉

Manchild• in reply toTonch5 years ago

Right on Tonch!👍👍

Yellowbluebell• in reply toManchild5 years ago

So why didnt you volunteer?

scats• in reply toManchild5 years ago

Perhaps you need to start a male only forum. It is a fact that considerably more women than men get PMR and inevitably there will be more comments from women.

• in reply toTonch5 years ago

Why because you think we can't do it.? By saying such things you expose you real feeling and in fact break HU guidelines specifically. Sexism is not tolerated. Your comments are not made in a vacuum. Can we please consider everyone it's not the first time compassion has been lacking in your posts.

scats• in reply toTonch5 years ago

Thought you might like to know that not all men have it easy. My brother was on pred for PMR for 6 years plus. He did not go to the gym, but as a working farmer he got enough exercise without it. I saw him birth a calf by tying a rope around his waist because his arms were no longer strong enough to pull.

I would also like to let you know that there are pleanty of women in this world who just get on with things as well but perhaps we prioritise differently.

Tonch• in reply toscats5 years ago

Wow that’s impressive. I don’t think I had the strength in my arms to pull out a calf even before PMR: result of 35 years in an office and lab.

DorsetLadyPMRGCAuk volunteer• in reply toTonch5 years ago

I assume your last sentence was written “tongue in cheek”along with selected emoji - at least I hope it was. So if it was, no offence taken!

But you do need to be careful when making sweeping generalisations.

Yellowbluebell• in reply toDorsetLady5 years ago

Totally inappropriate comment meant to get a reaction i suspect and i am quite happy to react by restricting him for breaking forum guidelines.

Blearyeyed• in reply toTonch5 years ago

That's very sexist .

Women have just realised it's better to give thorough and honest replies to make it easy to get the appropriate advice when discussing health issues.

There are men on this forum whom are not in the Mild PMR subgroup , they have many of the issues that are discussed by female forum members and often post questions for help from everybody.

And many women on the forum are here with knowledge of there partners health experience and are often on a forum to ask for help for Men who aren't as happy to chat about their health as you.

It's great to hear more from the Men , and I am always asking Men to get on here and post and discuss things more , but making health into a Gender issue with Chronic conditions isn't always relevant , and trying to create the impression that women don't "just get on with it" isn't actually accurate at all.

SnazzyD• in reply toTonch5 years ago

I think that if you read what many women, and men for that matter, on this forum cope with along with this condition you’d realise that was a very unkind remark. Sorry if it seems a little lacking in humour but years of suffering and shattered lives tend to weaken the funny bone. I sincerely hope that powering on through doesn’t come back to bite.

Yellowbluebell• in reply toSnazzyD5 years ago

I lost my funny bone about the same time that comment was posted!!

Constance13• in reply toTonch5 years ago

You are in BIG trouble with a comment like that! Shame on you!

Yellowbluebell• in reply toConstance135 years ago

Dont take too much notice of it constance. It shouldnt have happened. Sorry you had to see itx

Blearyeyed5 years ago

I will respect your choice and not let you know what I have learnt about the Experience of Men with PMR or GCA , but I do think you maybe missing out on some valuable Male specific information if you don't want to hear from the ladies of the forum.

They may not be speaking from personal , physical experience but many female forum members have read the posts and experiences of the Male sufferers for years and could give you a broad outline of the Male experiences they know about from what they have read.

Other ladies on here right now are also members seeking advice for Male sufferers whom do not like to use forums themselves , and could also contribute to your knowledge by telling you about the condition of their husbands , father's or brothers.

It is great to get more Debate between Men and For Men , I'm always asking for more Male Contribution or chat about Men , but making it into a discussion that can only be contributed to by Men doesn't help any of Our Men get all the help or insight they could use .

Tonch• in reply toBlearyeyed5 years ago

At least I’m not the only guy now getting hen-pecked 😂

Blearyeyed• in reply toTonch5 years ago

Of course , you can turn it into a joke , but this was a post on a serious point and your negative comments about the women on the forum are not helping to get some actually constructive replies from Men , or Women , on this important topic.

KellyInTexas• in reply toTonch5 years ago

“Hen pecked? ”

You do realize what you’ve just done? You took women back 50 years with a visceral degrading visual.

Please just stop.

Find a better way to voice a concern and don’t add and fuel to any fire. Let’s rise above this.

I was going to say that perhaps manchild did have a very valid question about men metabolizing pred different rates than women.

Could this hot mess please stop so this one very interesting and to my mind valid question be addressed?

Blearyeyed• in reply toKellyInTexas5 years ago

My point exactly , more Male Specific Discussion and keep it serious , just don't exclude answers from women whom may know alot to help the Men from research and their conversations with Male sufferers. About Men Only , not For Men only .

• in reply toTonch5 years ago

I am afraid you weren't and if you feel coming on the forum is being henpecked then perhaps it's time to reconsider your involvement. It is not funny Paul you should treat us like you treat your wife Ann. Please calm now...none of this thread is related to pmr itself.

HeronNS• in reply toBlearyeyed5 years ago

I'm sure the men are still able to read and contribute to our threads. I think it's only fair that Manchild ask for male experiences. PMR may know no boundaries, but we women are forever going on about gender-specific symptoms, so let the men have some space. I think that Tonch's reply did not, unfortunately, add constructively to the discussion but we are at fault for jumping right in. Are we so insecure we can't allow men to have a discussion without us?

Yellowbluebell• in reply toHeronNS5 years ago

No they can discuss men specific stuff all they like as long as all.members keep it civil.and keep to guidelines. tonCh comment did neither.

Blearyeyed• in reply toHeronNS5 years ago

Again , though , I'm just pointing out that a woman answering with knowledge of a Man's experience from years of hearing Male experiences on this forum cannot be anything but helpful to the Man's question.

Just as any Man with knowledge from their profession , research or the experience of Women they care for of Female only symptoms in any Disease is equally important and relevant.

I am always promoting more Male contributions and Male specific posts but never at the exclusion of fact gathering from the knowledge of both sexes.

Such things are counter productive in my opinion.

I'm more than happy to hear a Man's point of view , and most Men are equally grateful for any help given to them from any gender.

Manchild• in reply toBlearyeyed5 years ago

I do respect and appreciate all the advice and knowledge you ladies offer, and I have learned much over the past year or so. My object in my first post is to try to get more men to participate, so that I can get a sense as to how they are coping, etc.

I am not criticizing, but many posts consist of female issues, that men probably have trouble relating to. I just think more male participation would help men feel more comfortable here.

Blearyeyed• in reply toManchild5 years ago

I agree make a post about the Male Specific experience , as I said , I'm all for that , we need more knowledge about Male Experience but the discussion doesn't need to totally exclude women's replies with knowledge of this , rather than making your post Men only , you can just make it About Men Only , that would be helpful to Men too.

• in reply toManchild5 years ago

For some men ....The title you use can shape a particular culture of responce where so called jokes can be used to disrespect other members. We know there are some difference physiologically and it looks like different forms of pmr. Like I said see if anyone is similar to you.If you fill male in it should pull up men.

SheffieldJane• in reply toManchild5 years ago

I think that you make a very valid point. I have often thought it. Mark was a great champion for men, fortunately he got well.

HeronNS5 years ago

I think it's fair enough for you to want to hear from other men. I would not have replied at all had other females not jumped in right away. It is unfortunate that the whole thread has been hijacked by discussion about the male/female thing. Perhaps you could try again, and to avoid the discussion getting sidetracked suggest that your fellow men private message you? You can control those discussions. It is also possible to set up a group "chat" in the private message function so that several people can share views in the same thread. Good luck!

MhairiP• in reply toHeronNS5 years ago

I would find it very interesting to read a thread about men's experiences of PMR. It's a pity that, because of one response, this thread has turned into an argument. It would also be a pity if the men have to communicate 'behind closed doors', i.e. by private message! But if that's the only way it can be done, then so be it.

5 years ago

If people filled in their profiles properly then you could use the 'Similar to me' member facility and thereby not exclude others members, and yourself from info they have... Theres nothing wrong with entitling something Can any men discuss any experiences that dont always get discussed'. In my experience it often based on hobbies and interests which women and men both do. We have had discussion on all sorts from erectile dysfunction to priapism to menopause and uti to thrush to the effects of illness on partnerships. Find some members similar to you and create a private message group that reaches your requirement.

HeronNS• in reply to5 years ago

I have filled in my profile fully (except it won't accept my postal code) and the "similar to me" function has so far not given me anyone similar to me. Sometimes a "similar to me" person is someone who posted once several years ago never to be heard from again. Does that sound like me?😀 It's different every time I look. Nor have I had any answers to my questions and comments about this from the HU people.

• in reply toHeronNS5 years ago

It might work better because there are fewer men I suspect but sometime I have no idea for several exchanges. Its just worth a try😂😂😂

I updated my profile at male and apart from one woman on the first page, the rest were men. After all that the criteria being asked for.

Yellowbluebell5 years ago

This whole post has been hijacked by what was a.totally unnecessary and nasty attack on the women on this forum and women in general tbh. I will.say i would have the same reaction to such a comment from a female against men as well.

Blearyeyed• in reply toYellowbluebell5 years ago

I myself have also stood up for Men not getting some of their comments taken seriously in the past , so anything in my comments was not an attack on any gender , just a hope that everyone realises that Gender Specific Health Issues can be talked about by both genders and both genders benefit from what is learned.

• in reply toBlearyeyed5 years ago

I think we all just discuss how pmr gca impacts on lives. Fill in profiles if you want to be similar to others. That's what it's for. I don't care if someone needs helping I will try and if I can't I always hope someone else would.

Yellowbluebell• in reply toBlearyeyed5 years ago

I totally agree which is why i commented on manchilds post initially. We give the same advice male or female regards exercise. Irrelevant of previous fitness. Those fitter members, again both sexes can sometimes do more quicker and the original post was for men to answer with their thoughts. I answered as i would most similar posts and if tonCh had kept his replies to the advice he gave then that would have been the end of it and maybe more men would have answered with more help but instead because of a insulting comment he has reduced manchilds original post to a farce. An apology would make this less of a issue i suspect with most women on the forum if it was perceived to be genuine.

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