Quiet again

[tarragon2]

Cleaning up my email notes I discovered an old login for this site.
Going from thelupussite website and using the Message Board link gave a cgi error, so I followed an old link.

Very quiet in the men's section for about six months.

Lupus since Nov 2000 and only required to see the doctor every six months.
Nothing unusual and I guess I have it quite mild as apart from getting Chickenpox three times and no feelings in my hands or feet it does not stop me doing anything.

Does anyone have any idea how many men have Lupus? In the UK?
What support is it possible for me to give to others?

Oh and Happy New Year 2008

[Tom]

Hi tarragon2,

Not much action here usually. My guess is that men aren't very chatty for the most part.

As far as men with Lupus goes, 10-15% of the total Lupus population they say. That estimates around 20,000 males (Doing the math from LFA stats) from a 1.5-2 million Lupus population in the US. I didn't see one for the UK population.

I'm glad your Lupus is mild and under control obviously, I hope it contunues for a long time. Support can come from offering your experiences and general helping info in posts. Or chatting with others who enjoy the real time experience in the chat room here.

I'm glad you ran across this site again. Take care and Happy New Year to you as well. :)

[melanie ann]

hiya,

just read your post's, not many men i grant you seem to use this site, and i am sure you have prob been asked before... but i know men are from mars and women venus and all that, but sure it affects men the same as women...:rotfl: come and join the gaggle of women, at least you turn the screen off if we are talking to much:lol:
anyway... hello nice to met you....

[SoCalEric]

Welcome Tarragon,

There's a few guys around here. I know I tend to spend most my time in the other forums as the mens area is pretty quiet. Just the way it is being a male with the disease. I know when I was diagnosed I went to a couple of support group meetings in my area but stopped as it was a room full of women and having one guy in the room kinda seemed to crimp their style. Nice people, and they welcomed me there, but I was a bit outta place.

Eric

[Andyc95]

I really don't think there are many of us here in the UK, the estimate would be 10% of 50000, in so in theory there should be 5000 men in th UK with lupus based on the figures I know.

I don't think I've heard of any men within about 20 years of my age with lupus.

Like you, my lupus is keeping mild though so not to bothered.

Andy

[vincent]

Hi everyone,
Hi Tom,
Sorry to contradict your maths, but if there is 2 millions lupies (which includes everyone, discoid and drug-induced) in the US and men are 10%, it would means that we are 200,000, not 20,000. Just to correct the perspective a bit. Still underrepresented, of course.
Vincent

[fenrus]

Welcome Tarragon,

There's a few guys around here. I know I tend to spend most my time in the other forums as the mens area is pretty quiet. Just the way it is being a male with the disease. I know when I was diagnosed I went to a couple of support group meetings in my area but stopped as it was a room full of women and having one guy in the room kinda seemed to crimp their style. Nice people, and they welcomed me there, but I was a bit outta place.

Eric

I've thought about going to one of these groups/meetings, but the worst of my Lupus has long passed with no signs of any uprising. I know I'd probably feel awkward with a room full of older women with me being a male with the body of an athlete.

[Clare.T]

I know I'd probably feel awkward with a room full of older women with me being a male with the body of an athlete

Now there's a fine thought ! ......................
You should go along and brighten their lives !:lol: A novel form of lupus support.

I don't know what age groups are represented at any given time in the female lupus population. After all young people grow older.

Seriously I suppose there might be more much older women at support groups day time meetings since the younger women are at work or busy with families. I suppose there would be a lot of general chitchat at very small groups meeting in homes or cafes too.
The only one I ever went to had a big attendance in a large public room. It was at a major hospital in NYC with a talk by an eminent lupus expert. I think there were a few women there with friends but most people left afterwards to go home. I think the men there were husbands and partners - there were certainly no dishy young men ! The 'young' woman ( 30-ish) I had chatted with while we were waiting had an hours trip back to the suburbs and had to avoid the rush hour, so she hadn't time for a coffee afterwards. Or maybe I was too old for her.

I didn't go again because, first, there seemed to be a lot of very badly affected people judging from wheelchairs and other obvious difficulties so I felt out of place; second, at question time too many people were trying to get the doctor to comment on their own case as if it was a consultation; third, as it happnes a very smartly dressed and well turned out woman about my age at that time, 50- something, delivered a rousing homily about how she hadn't let lupus ruin her life and neither should we. With determination and application we could all do as well as she. The atmosphere was as near to a lynching mob, as I hope I'll ever experience. I never discovered if this was part of the programme or her own volunteer testimony. The talk was very interesting and was later published on line so apart from being able to ask one single question there was no point being physically there to hear it
Online support suits me very well. Looking out at another very grey, windy cold rainy day, there's no way I would be traipsing off to a support meeting. Online open all the time and you don't even have to get dolled up.

I read about some men with lupus who formed their own group with a strong emphasis on sport and exercise. I guess you'd have to live in a densely populated urban area to be able to do that. They were mainly in the 30-55 age range from what I remember.
I'd say that illustrates the difference between men and women's ideas about getting together.

There's a least one under 30's or young professional support group in NYC and CA I think which gets together in the evenings and organises social functions with outsiders invited.

Cheers to all and fenrus, stay young and beautiful.:)

Clare

[Bullwinkle]

Thought I'd 'bump' this up as I am sure several males read this and are dissapointed that not many write about their experiences. Here is a short synopsis of mine:

First, I have to thank this Site, all the respondants, and especially the Moderators for all your wisdom and insight into my, and everyone else's issues. Having someone relate their experiences and expertise has really help me make it this far, especially when it came to the many medications and their nuances and implications.

I am in ....I think... my 4th plus year of this Lupie/CTD thing. Was first diagnosed with blood clots in my lungs, after 4 mis-diagnosis of pneumonia. It took a heart stress test to get me coughing up blood and then a day later another trip to the hospital emergency, and it wasn't until I started to turn blue there, and upping my O2 intake, did they do an emerg. CT scan that revealed the clots.

Thank goodness for morphine. Then the coumadin thing....weekly blood testing, diet watching, and then just as I thought I was improving it all 'morphed' into this Lupie dilemma... according to the initial testing, then consequent testing ... it "wasn't lupus", and then it "showed signs of lupus". This went off and on so they finally catagorized me as having MCTD, as I (a) was male, and (b) wasn't showing the lupus rash, and blood work wasn't steady enough to 'make the call.'

In the meanwhile,I have been and still am on a cocktail of anti-inflamatory meds; prednisone,plaquenil, stopped Imuran for Methotrexate, to name a few. Plus happy pink pills for the depression....it's okay to take these guys.
Plus pain meds, cholesterol pill, vitamins, folic acid, calcium supplements etc. and that pretty well rounds out my day. LOL.

The results have not been "electrifying' as I am still fighting the inflamation, and now have arthritis happening in a big way in my hands, a hip that is very painful ( these all came on much later), large muscle pain, oh and did I mention the constant fatigue. I went from climbing mountains to struggling to get up the flight of stairs at home. I could go on and on.

So guys, I am hoping that this aids you in some way; ie : you are not alone, this site is well worth using to learn and aid you thru' your issues, and hope you have better and longer lasting successes than I have to date.

[pennylp]

Hi there,

Wow... have you been through the wringer... I am so sorry....
I have been through a lot of flares in the years... Right now I guess, and I am afraid to say this, I feel pretty good... not one hundred percent but pretty good.... I never thought I would be able to say that... Retuxan has helped me so much... I am very lucky as I know there are so many who are not feeling good right now... And I hope they eventually will feel as good as I do...
You sound like you have a pretty good attitude in life... I think that is so important... And I hope you regain your energy.... Take care of yourself.... Here is hoping you feel good soon...

Love Penny

[Bullwinkle]

Thanks Penny, as you know it's summer here in Canada... that means lots of sun , and the issues that go with it , plus the fact that most medicines that we rely on make us more sensitive to the suns rays ... so frustrating, especially 4 me as I loved the sun and sitting on the beach.
just hoping some day this will all go away and "presto" things will be 'normal' hehehe again.
In the meantime have now added Percocet to my arsenal. Do't like it but it does give some relief from the pain.
All the best to you, and everyone else. Now off to the beach......

[pennylp]

Hi there,
Yes I understand how you love the sun... So do I... We have a boat and I love to go out in it... When I go out I wear a ton of sun screen, a big floppy hat... and anything else I can put on to protect myself... Our summers are short and sweet and our winters are long and cold... I have to enjoy the warm temps as much as I can...
I hope the percacet helps you... I hope you wake up and feel better tomorrow morning... :) Take care of yourself...

Love Penny

[mum86]

Hi All - I am mother of son with lupus - we are so desparate to hear from men who have lupus - we don't know were to go to - my son is 23yrs old - has had pericarditis for last 3 years - doctor had initially told us he was borderline lupus. but we have just had another flare up which has caused stomach inflammation, diorreaha, vomitting, excessive weight loss - he was in hosp for 3 weeks - was discharged on Weds, but since then, I have found he has lost so much confidence in himself, I'm in despair as I don't know whatelse I can do for him. We are going back to see docs soon. Has anybody taken Azathioprine - docs seem to think it would be a good idea to take this to control lupus - but reading the info sheet the side-effects are so scary...

[Maia]

Many people on this site take Imuran/aza with no side effects and find that it helps their symptoms greatly. The warnings/side effects sheets that they have to give out must list every single possibility, the key to it is to realize that the incidence of each is relatively low, especially on the lower doses people with lupus take this drug. The other thing is to weigh the risk/benefits out carefully... there are risks with every drug and benefits. What is the risk of NOT taking medication? It sounds as if your son has been pretty severely affected by lupus - what meds have been tried already and has any of them helped? Imuran is usually a second step medication, added after others have proven not to be helpful enough.

Good luck to you and your son, I think it's worth a try given his circumstances.

You may want to post your question about aza/Imuran in the medications section or do a search of the site for it. You'll likely get more answers/information about this drug that way...

[LolaLola]

Dear Guys, How nice to see you come out and talk. Why not all stick around.

Andy, I have often wondered how you are doing. Guess it is School Exam time?
x Lola

[mum86]

Thanks Maia- my son is currently taking 20mg of prednisolone - and once his blood test results are back he has been advised to take 50mg of Azathioprine does that sound like a realy high dosage - I know I should weigh the benefits of taking the tablets and overlook the side-effects. It's just so much to take in.. does anybody know of support groups in Liverpool, UK? especially for male sufferers?

[Maia]

You may also want to seek out a second opinion for your son if you haven't already done so. They might have other ideas for treatment and if the recommendations are the same then it helps for peace of mind. Hopefully someone will come along with any support group recommendations in your area. I'm in the USA so of no help there!

Has he ever been on Plaquenil?

Oh, and 50mg is a pretty low dose. People here often take 100 or even 150 mg doses.

[fenrus]

50mg of Imuran (Azathioprine) is a typical low dosage. I've been on 60mg Pred for 3 weeks now, and probably will be on that for another month.

but I've also been taperd off Prednisone and used only 100mg Imuran at one point too.

though the Imuran didn't seem to do a good job in supressing my Lupus, I'm currently on CellCept, which is expensive as ****. Let's see how that works out...

most of these secondary drugs (primary being Prednisone) do have some carcinogenic side effects in the long term. But most of the docs agree that those side effects are more desirable than the long term ones you get from Prednisone...

[Bullwinkle]

Just a 'Bump' to renew the replies. All the best.

[DJGun]

i was 17 when diagnosed went from strong and healthy to being a skeloton i still find it hard to deal with it's somthin he's got to come to terms with which is not easy i've had it for 16 yrs and this is my first time lookin for info and tryin to meet others due to complications and i have always felt ashamed by it i am not sure that is normal i dont think i've ever spoke the word it makes me sick. it affects everyone differently but i did get better when i never thought it was possible.

[DJGun]

BTW the name is Dan from Minnesota nice to meet ya'll glad i found the site pity i didnt do it sooner better late than never right :)

[mum86]

Hi All - wanted to let you know that my son went for follow up appointment at hospital last week. Had a really long chat with doctor - about our fears, upset and not receiving help from hospital - docs really surprised and shocked we had no support.. docs have decided to lower the presnisolne.. and start him on aza.. he is doing really well and is going back to work tomorrow.. his recovery has taken about 4 weeks and I am so pleased with his progress.. although I know it is still early days.. I'm just glad he has not let this condition stop him from moving forwards.. I hope all male sufferers can see this in themselves.. to not to let the condition stop them from leading a normal life.. you might need to adjust your lifestyle here and there.. like my son has.. you just need to stay positive....