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Discussion Starter · #1 ·
Hello Folks

My names is chris i'm male and 30 and was diagnosed yesterday with SLE and secondary antiphosholipid syndrome. My consultant has given me a six week course of steriods and told me to use asprin to thin my blood.

Questions

What can i expect from SLE apart from the feeling off and the aches and pains?

Can anyone recommend any books on it so i can learn as much as i can?

Does diet make any difference to the symptoms?

Might be a strange one this but do i have to declare it on my driving licence?

Any advice would be gratefuly accepted and any pointers on how to manage it would be good as well

cheers

chris:)
 

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Hi Chris - its a small world as Im also from Co-Durham and only diagnosed 2 months ago, so Im going through the same learning curve. Whos your consultant?
This is a fantastic site, there are so many knowledgable people here who really help across the ether, especially when you think your on your own with this. Im sure lots of people will answer your questions shortly. In the mean time If its any help at all, I can say that things do get better, if only sporadically in the beginning. I also work full time and have similar concerns.
Welcome to the site :) take care and I look forward to hearing more from you.
:)
Kx
 

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Hi Chris, Has your Consultant talked to you about Plaquinel, it is a base line drug used for SLE, it has the least side effects for most people but takes a long time sometimes to 'kick in' so the sooner you start, the better.. you need a vision check before starting as there is a small..very small chance it can affect your eyes.
As far as I am aware you don't need to declare to DVLA for driving.
SLE has lots of variants, but people are very individual and so are their experiences with SLE. One step at a time is good, and a decent book is good.. if you want to have all the info.. The Lupus Book by Daniel Wallace third edition is good.. I also found the book 'talking about lupus' an easy to read book by Triona...somebody(!) can't remember off the top of my head. Anyway, you should post any questions etc here.. I was diagnosed with MCTD last Nov and have learnt more here than anywhere... and alot of humour along the way. All the best,
CLaire
 

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Discussion Starter · #4 ·
Mr consultant is Matt Bridges at Darlington he seems quite proactive in the way he approaches things.
I'm pleased to hear that things get better as i go along as its getting a little bit wearing with the aches and pains and the general feeling under the weather, i dont generally unwell, up until christmas i was cycling about 40 miles a week and generally keeping health at the moment i'm down to about 5!
Whereaboutsin the great county of Durham are you?
 

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Discussion Starter · #5 ·
My consultant has put me on a steroid called prednisolone for 6 weeks as my platlet count is as he described it 'moderate' i'm also on asprin for the 'sticky blood' thing its gonna be strange as i've never been one for taking tablets but if it get the problem in check then it can only be a good thing.
What is this other drug you mention?
Forgive my ignorance what is MCTD? I'm just learning all this and i want to know as much as possible from the start.
I will have a look for those books you have recommended as well

chris
 

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Hi Chris,

Welcome to the site, it is nice to meet you.

What can i expect from SLE apart from the feeling off and the aches and pains?
Lupus affects us all differently. Some have skin problems, aching joints, it can go after organs.(kidney,heart, lungs) Most will agree on the fatigue.

You will need to listen to your body. When you feel you can't take another step,by all means go rest. Pushing yourself any further will result in more pain and fatigue. Taking a nap is good or just laying down for a bit helps too.

Does diet make any difference to the symptoms?
Eating a healthy diet will benefit everyone, with or with out lupus.

Being first diagnosed with lupus is an emotional roller coaster ride. Finding out about lupus will help you help take control of your health when talking to the doctors.
Please don't think you have to learn it all straight away. I learn something new all the time.(diagnosed in 2004)

Take care and post questions.

Lyn
 

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Hi Chris.. MCTD is Mixed Connective Tissue Disorder.. I have a mix of SLE, Schleroderma, Raynauds, Hypothyroid. There has to be an RNP positive result in your bloods to be diagnosed generally for MCTD. It can stay this diagnosis or go into SLE... or Scleroderma over time.. the first 3-5 years is often the time it will change if its going to.. the same I believe for SLE. I am hoping my internal organs won't be affected in that time, one of our risks is to develop Pulmonary Hypertension, so hoping it leaves me alone. I take Plaquenil, Prednisone (currently reducing.. down to 10mgs). losartan to keep BP down and protect kidneys, thyroxine, nifedipine retard (for raynauds) , calcium tabs.. which you should take if on steroids for any length of time, omega oils.. any help for the joints welcome!! and homeopathy stuff... I just about rattle: l know what you mean about taking tabs.. I really would rather go back to my old world of purely supplements... but there you go:hehe:
Claire.
 

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Hi Chris, welcome to the board, sorry you have a lupus and APS diagnosis. It can be hard to live with but by learning to pace, we adapt. I used to love to cycle but find I can't manage anymore I have no balance. :rotfl: The lupus book reccommended is brilliant.

Deb
 

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Discussion Starter · #9 ·
x_claire_x;552392 said:
Hi Chris.. MCTD is Mixed Connective Tissue Disorder.. I have a mix of SLE, Schleroderma, Raynauds, Hypothyroid. There has to be an RNP positive result in your bloods to be diagnosed generally for MCTD. It can stay this diagnosis or go into SLE... or Scleroderma over time.. the first 3-5 years is often the time it will change if its going to.. the same I believe for SLE. I am hoping my internal organs won't be affected in that time, one of our risks is to develop Pulmonary Hypertension, so hoping it leaves me alone. I take Plaquenil, Prednisone (currently reducing.. down to 10mgs). losartan to keep BP down and protect kidneys, thyroxine, nifedipine retard (for raynauds) , calcium tabs.. which you should take if on steroids for any length of time, omega oils.. any help for the joints welcome!! and homeopathy stuff... I just about rattle: l know what you mean about taking tabs.. I really would rather go back to my old world of purely supplements... but there you go:hehe:
Claire.
That seems like alot to get your head round!
I'm just on aches and pains and feeling a bit rough oh and the sun is trying to kill me!!!
I'm on Prednisone for 6 weeks reducing does like you then its back to the consultant for further advice and prognosis.
I'm finding that humour plays an important part, i have a daily lottery to see which bit of me aches the least it quite good fun 'cos i'm aching on my aches at the moment!

take care
speak soon chris
 

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Discussion Starter · #10 ·
debatat;552398 said:
Hi Chris, welcome to the board, sorry you have a lupus and APS diagnosis. It can be hard to live with but by learning to pace, we adapt. I used to love to cycle but find I can't manage anymore I have no balance. :rotfl: The lupus book reccommended is brilliant.

Deb
Deb

Yeah i was cycling a good few miles about 12 months ago i used to race mountian bikes when i was a teenager and had a resting heart beat of 45 so i was super fit, but now its more like 70 and i struggle to get round a 10 mile circuit in less tha an hour; i know how you feel is depressing but i'm trying to go easy and get 10-20 mins in on my turbo trainer a few times a week, its killing me but i makes me feel like i'm doing something to help, having said that my clutch broke on my car a few weeks ago (while i was waiting for results) i changed it what should take 6 hours took me 4 days and i'm still feeling the affects. I think i need to pay more attention too what my body tells me an ease up a bit while i'm learning about it!

take care

chris
 

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I hear you on the sun trying to kill you. As a red-head with fair skin I grew up avoiding the sun, but now it's even worse. I wear 70 SPF, hats, long sleeves, find shade where ever it's available, and I still feel like I'm burning. One day at the zoo with my kids, and I spend the next four days unable to move. Swollen hands, puffy face, "old lady" aches and pains. I haven't figured out the sun thing yet. What I did figure out very quickly was alcohol was a big no no. I love my wine, love a cold beer at a game, and sadly had to nix that out just to wake up the next morning feeling a little normal. It would have the same affect as the sun even after just one!
 

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Discussion Starter · #12 ·
jrgator8815;552448 said:
I hear you on the sun trying to kill you. As a red-head with fair skin I grew up avoiding the sun, but now it's even worse. I wear 70 SPF, hats, long sleeves, find shade where ever it's available, and I still feel like I'm burning. One day at the zoo with my kids, and I spend the next four days unable to move. Swollen hands, puffy face, "old lady" aches and pains. I haven't figured out the sun thing yet. What I did figure out very quickly was alcohol was a big no no. I love my wine, love a cold beer at a game, and sadly had to nix that out just to wake up the next morning feeling a little normal. It would have the same affect as the sun even after just one!
The wine thing might be a problem i have about 50 bottles of red under my staircase at home!!! I've noticed it latley with beer though, even 1 or 2 and the next day i'm a broken man and it takes me all day to start feeling human again.
 

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Welcome to the site Chris.

Alcohol and I don't get along at all anymore. I love the flavor but the effects later aren't worth it.

The same goes for the sun. I enjoy sunny days from indoors. If I do go out it is before 10 or after 4 and I take every precaution I can. Good luck finding what works for you.

Take care,
Lazylegs
 

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Hi Chris from County Durham and welcome to the board.

You have been given great advice here. A must have book is "The Lupus Book" by Dr. Daniel Wallace, 3rd edition. Written in lay man terms so that you can understand it easy. In my humble opinion it is a must have for rainy days when your not on the bike.

I am sorry about your diagnosis but glad you found this site. I hope you join us in the chat room sometime. Take good care of yourself.

Karol from South Jersey, USA...aka: The arm pit of the world!!!:lol::lol::lol:
 

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Discussion Starter · #15 ·
keebler;552364 said:
Hi Chris,

Welcome to the site, it is nice to meet you.



Lupus affects us all differently. Some have skin problems, aching joints, it can go after organs.(kidney,heart, lungs) Most will agree on the fatigue.

You will need to listen to your body. When you feel you can't take another step,by all means go rest. Pushing yourself any further will result in more pain and fatigue. Taking a nap is good or just laying down for a bit helps too.



Eating a healthy diet will benefit everyone, with or with out lupus.

Being first diagnosed with lupus is an emotional roller coaster ride. Finding out about lupus will help you help take control of your health when talking to the doctors.
Please don't think you have to learn it all straight away. I learn something new all the time.(diagnosed in 2004)

Take care and post questions.

Lyn
Lyn

Thank you for your answers, yeah i have the aches and pains and the general fatigue, also being a cyclist i noticed quite quickly before was diagnosed that i was getting very breathless after not doing alot, even just walking up the stairs, i've since had an ECG and Spirograpghy (lung Tests) they both came back better than good my lungs did 12 litres which is apparently well above average. My consultant has refered me to a chest specialist to check if its a chest wall problem as all the important bits are in good working order, i'm hoping for an appointment in the next couple of weeks, in the mean time i'm just taking it easy and doing what i can i've found its quite theraputic in a strange way as i spend most of my life running round so the reduced pace is a nice change!:)
 

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Discussion Starter · #16 ·
KarolH;552489 said:
Hi Chris from County Durham and welcome to the board.

You have been given great advice here. A must have book is "The Lupus Book" by Dr. Daniel Wallace, 3rd edition. Written in lay man terms so that you can understand it easy. In my humble opinion it is a must have for rainy days when your not on the bike.

I am sorry about your diagnosis but glad you found this site. I hope you join us in the chat room sometime. Take good care of yourself.

Karol from South Jersey, USA...aka: The arm pit of the world!!!:lol::lol::lol:
Hello Carol from South Jersey USA!

Thanks for the recommendation all of people have pointed me towards that one.

Rainy days are the best days to ride my bike, because theres no sun and give thst were members of this website that probably a good thing!:lol: and it can rain all it wants outside as long as its not raining in your mind then its all good!

Take Care
Talk to you soon

Chris from County Durham!:)
 

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Hi Chris,
I see someone already recommended Daniel J. Wallaces book, I'm reading it now and I'm finding it to be very informative. It's a fairly easy read for the most part. It does have some sections that are pretty technical but you can skip through those parts. It's basicaly an excellent reference book and you can find the answers to your questions quickly. The other reply mentioned the third edition, make sure you get the fourth edition it's copywright is 2009 and has alot more updated material. My only other advice right now is to take things slowly. It's a very confusing disease and you'll have alot of questions and few answers at first. Good luck.
Birder
 

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Discussion Starter · #20 ·
tbirdpie;554611 said:
Hi Chris,
Just be careful with the Prednisone for that long. They call it predni-psychosis after you have been on it for a long period of time, can make you feel very loopy!
Oh happys days!
Ive had no ill effects yet iu finish them next week and then its back to see the good doc.
 
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