[dougie conacher]

hi there
this is my first post ,having had sle for only 4 months .While trying to understand the disease i read a few lupus books one of which was very positive and other articles ive read on uva1 (pavel,mcgrath) seemed to sugest it works i would intrested to hear if anybodys tried it or knows more about it. there dosent seem to be any other natural treatment out there and this fatigue is getting me down
thanks Dougie

 

[Clare.T]

Welcome to the forum Dougie
I am sorry about your diagnosis and well understand the crippling fatigue it often brings
You might be interested in this thread on the topic of UVA1 therapy

http://www.thelupussite.com/forum/showthread.php?t=53704
It is not generally recommended for lupus although it might be of some value in scleroderma.
There has to be a good reason why this treatment is not generally available and not fully endorsed or recommended by the top lupus experts, I mean apart from the wild suggestion that the whole medical and scientific world are conspiring to stop us getting the best possible treatment.
Several of us have asked our doctors about it and been given to understand that too much is as yet unknown as to the possible catastrophic reactions in individuals. If you consider the great amount of research trials and studies that take place before medications are approved by the FDA the amount of replicable research that has been done on this therapy notion is very limited indeed.

They are only just making headway on understanding how UV affects different individuals according to their genetic makeup.

I am always puzzled by the emphasis on 'natural' 'remedies' bearing in mind that this is such a complicated and unnatural disease and that many of us here would have been dead or be leading lives of unbearable suffering without modern understandings and modern medicines.

The anti malarials are not new at all. They can be highly effective in relieving fatigue especially Quinacrine / Mepacrine and when used in combination with either Plaquenil or Aralen. Generally speaking once the disease is under control fatigue lessens but just as essential is making the various adjustments to life style that lupus demands such as getting enough sleep/ rest , prioritising and eliminating, getting exercise and of course dietary adjustments as needed.
There are other posssible causes for fatigue such as poor sleep patterns as occurs in fibromyalgia and various sorts of anemia

Anyway, this treatment is for the most part not available. Most of us would never dream in a million years of starting to treat ourselves at home with homerigged equipment. It's important to make such major decisions with a full understanding of what might be at stake.
The one person I have heard of who did just that has also adopted a radical programme of various supplements and life style adaptations.

Good luck and do take good care based on the fullest possible information about all the various therapies available - and a good understanding of lupus itself and how exactly it is affecting you.

Clare

 

[dougie conacher]

uva1 light treatment

Thanks for replying this person you were describing do you know if hes still trying uva1.I read a thread from a couple of years ago about a guy called erskine who was trying it I sent him an email asking how he was getting on but hes not got back in touch as yet.The author of one book I read is still using it (once a fortnight) with no sideaffects.Anyway thanks for that i, i will look up these drugs you mentioned, am on 7.5mg of prednisolone and 400mg of plaquenil.Have been taking these since begining of febuary am maybe being a bit impatient
cheers dougie

 

[Katharine]

Hi Dougie,

It is frustrating and I think we all get impatient at times but most drugs take a while to work properly especially plaquenil which can take about 3-6 months or even 9-12 to reach full potential.

It does take a while for the docs to find the right level of meds both for your disease activity and for you as an individual.

Katharine

 

[Clare.T]

Hello again Dougie

I was talking about Erskine who posted on that thread I linked to. He last visited end of April but hasn't posted since end of last year, see his profile which you can access by clicking on his name. You can check out all his posts.
Plaquenil can take time to work and people often take low dose Prednisone or NSAID's meanwhile to tide them over. Another drug called Quinacrine or Mepacrine in the UK can be added to the Plaquenil to make a very potent combination especially good for relieving fatigue. Often doctors won't consider further disease modifying medicines until Plaquenil has had a good chance but you can always ask.
At the risk of being a bore I'll mention the importance of lifestyle changes again. It is often very difficult to adapt but if you keep pushing yourself to the limits and trying to maintain former levels of activity you risk undoing the good work of the medicines and not giving your body a chance. It is rather like trying to function with chronic flue

Good luck
Clare

 

[acard]

Hi Dougie,
I just want to really agree with Clare!!! She really puts into perfect words and I think as a person who has just been diagnosed it is important to reaaly listen mto those who have had it for awhile. This disease is life altering and sometimes we don't want to think it is. This may not make sense, but keep with this board and you will get through this difficult disease. I also recommend before trying anything(natural remedy) contact your doctor.
Welcome,

Becca

 

[DeBartolo]

yikes, how time flies…looks like i haven’t been here in 6 yrs.
well, as long as i am, here’s a "Research Link Library" for UVA1 (provided i can post a link):

http://lupusuva1phototherapy.com/?page_id=411

if you only want to read one thing, read this:

http://rheumatology.oxfordjournals.org/content/45/6/653.full

nice to be back

 

[TinkerB13]

I hear this is working wonders for quite a few folks.