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Discussion Starter · #1 ·
Hi I am new to this forum. My husband was diagnosed with Lupus in January and we are still tying to come to terms with the effects on his life. He is a very active fit person who was planning a rock climbing trip to the Alps weeks before he bacame unwell. He feels he is on his own and that the consultant etc are really not interested.
He has done a lot of reading and is concerned about prednisolone(currently on7.5mg daily) and long term effects.
He has also read about UVA1 therapy but has no idea where to source this or if it is a viable treatment.
I am trying to be supportive but I know he feels as if I really don't understand. We are based in the UK.
Any advice and support appreciated,
 

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elisabethm
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Hi and welcome to the site you will get a lot of support from every one on it i dont know about uva1therapy maybe some one else will know what it is what other medication is he on i am on palequine for mine a long list of other meds when did he get diagnosed with lupus and did he see a rhumatolagist and has he got to see him again.What age is your hubby not being nosey and do you have a family.I have a son daughter 4 grandsons one is 9 two are 6 and TJ is 10weeks i come from Scotland Hope to Speak to you again Best Wishes to you and your Husband:) :) Elisabeth
 

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Hello

A big warm welcome to the forum..you have come to the right place for knowledge,support & understanding.

I am sorry to hear of your husbands diagnosis,it can be a rollercoaster ride of emotions when first diagnosed but it does get easier..'knowledge is power' they say & I couldn't agree more :) lupus is quite complicating so it helps to learn more about the disease.


regarding prednisone it is a drug used only when necessary..it can be very useful but as you say it's not used long term.
plaquenil aka hydroxychloroquine is the main baseline drug & sometimes the only one needed...it is an antimalarial,disease modifying drug that is very beneficial in treating lupus,with minimal side effects.

has your husbands rheumy not suggested prescribing this at all?or any other medication?
how does the lupus affect your husband?


I hope this helps a little..I am sure a more knowledgeable member will be along to explain it better :wink2: :)

sending empathetic hugs to you both :grhug: your husband is lucky to have your support...he might feel a little isolated at the moment as it can feel like you are the only person to have it!I was amazed when I joined the forum to learn that I was not alone with this unheard of disease.

take care,bye for now..karen x
 

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Discussion Starter · #4 ·
Hi hubbie is 43, diagnosed in January after two weeks in hospital. Saw rhumatologist for follow-up last week, no change to meds(plaquenil 200 bd & pred7.5mg daily)

Hindsight means we can see he had symptoms for over 18 months but only realised something was wrong when his joints began to stiffen markedly and eventuallyhe couldnt open a jar or a car door prior to admission. This from a man who does extreme sports for a hobby:sad:

He really feels tired all the time and thinks this will never change.:worried:

Think he needs more time to adapt to situation but feeling tired and sore isn,t helping him to do this, Lynne
 

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Hello Arlington,

Sorry to hear about your husbands diagnosis. Like every one here i wish you and your husband a warm WELCOME to the forum.

Again, you are in the right place, so is your husband. We do have a mens forum here were there are a number of men that can share with your husband, during chat or through personal messaging or even through posting a message like you did. This way he won't feel as if he is the only one out here with his issues.

He should be very proud to have such a caring and supportive wife.

I wish you both luck and happiness.

Hope to talk to you in chat soon.

Take Care
Good Luck
 

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Hi Lynne

Welcome to the Forum. Im sorry to hear about your husband. It must be such a blow to go from being so fit to being fatigued all the time. Two of the most common symptoms with Lupus are fatigue and joint pain. Having said that, things can and do get better over time. Plaquenil is a slow acting drug that can take anything from 3-9 months to feel the full effect. He might also consider asking his doctor to prescribe some Non Steroid Anti Inflammatory Drugs (NSAID's), of which they are plenty to choose from. These help to lower inflammation and therefore reduce joint pain.

It takes a while to get to know how your body is reacting to the disease and to the medications and it can also take a while to get the right combination to get things back under control. It is frustrating but there arent any short cuts. There is a comprehensive thread/discussion on Light Therapy on the Complimentary Therapies Forum. Here is a link to it which he might like to read

http://www.thelupussite.com/forum/showthread.php?t=53704

It is a shock realising that we have been diagnosed with a chronic long term illness and Im sure your husband will go through all sorts of stages including denial and anger. Its very normal. Watch out for depression though as this can either be a reactive response to the diagnosis but can also be part of the disease itself.

Its important that he gets to know as much as possible about the disease and particularly how it affects him. Everyone is different and for some people they need only the minimal medications and life style adjustments. Get him to start keeping a record of symptoms etc as things like that are very useful for hospital appointments and help the specialists treat us appropriately.

If you need any advice or support feel free to ask. Indeed your husband might want to join at some time himself.

Take good care for now
Joan:rose:
 

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Hi Lynne just wanted to welcome you sorry to hear about your hubby
nice that he as you to support him

take care
Lin xx
 

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Hi Lynne, So sorry to hear about your husband, he's having to make some big adjustments right now, I hope that you get all you need from this board, there are so many people here who have gone through tons and have good first hand knowledge about what works for them and they can also come up with some good ideas. Welcome, and I hope things get better soon.
 

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Hi Lynne :hello: :wavesmile: :hello:

First of all
to the lupus site.


I am Jo, 32 and i live in West Yorkshire. I was dx with lupus May 2004.

I think its great when partners/wives/husbands come on here, it shows how much you care and as a lupus sufferer myself its great to have someone who cares.

Its still early days for your husband, he will be finding it hard to deal with especailly as he as always been an active person. The best advise i have been given is listen to your body, when it hurts - stop, when its tired - sleep, but on those few days that your body feels good then its hard not to over do it, finding the limits is the hardest part.

I hope both of you find the support, care and help that you need from this website.

Take care :hug: Jo :hug:
 

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Discussion Starter · #10 ·
Thanks to everyone who posted. I am happy to say Dougie has now signed up himself! I have been on a downs list for years since our son was born and know how helpfull it has been and know we will get that same support here, Lynne:)
 

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Hi Lynne,
Glad to hear Hubby has signed up too.
look forward to knowing you both. Is it just one child you have? How old?
Mine are teens and twenties now.
x Lola
 

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Welcome to the forum Lynne and Dougie ! :)

Having lupus certainly can be a very lonely business and knowing there are many other people with similar problems is a big comfort. I suspect that it even harder for men to acknowledge their symptoms, pain levels and new weakness and limitations as well as the illness overall. Fear is a big component of early diagnosis and adaptation both physical and emotional can take a long time.
Many of us take antidepressants to help us through the bad times. Some people are lucky enough to be able to acess a psychotherapist who specialises in the problems of the chronically ill but in the UK it is especially hard to get such help. Having a sympathetic and caring rheumatologist is so important but again not always available.

Please make sure you have been tested for fibromyalgia and that urine has been tested. That seems so obvious but can be neglected. Anemia is a distinct possibility for men too and often neglected. It can be caused by disease itself and accounts for physical weakness as well as fatigue.

As regards the UVA1 therapy I have no knowledge of anybody in the UK having it and I have never even heard of studies. I believe it is used experimentally for scleroderma but lupus doctors are very wary of it because of the role of photosensitivity in increasing disease activity and lack of knowledge about which lupus patients might benefit. There is only one doctor in the USA who uses it.

If your husband has no organ involvement he could ask at his next appointment about adding Mepacrine to the Plaquenil. This is another anti malarial that works synergistically with the Plaquenil to give increased anti malarial pow. It is especially effective in dealing with fatigue. This combination is not in general use these days although there is excellent documentation of its value. It can mean less steroids or even none and avoid the need to go onto the immunosuppressant disease modifiers such as azathioprine or methotrexate which are the usual next step.

Men also need to take calcium while on Prednisone too to avoid osteoporosis

I hope he can find better pain relief.
It might be worth trying to get a second opinion or even going privately to the London Lupus Centre for a one off consultation to see what suggestions they might have.

All the best
Clare
 
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