[Jules123456]

Hi everyone
I hope you don't mind me asking a few questions. I am so confused right now and feel that the hospital have the upper hand

I have been suffering from Urticaria Vasculitus and angeodima for nearly two years with no relief from the pills and potions I have been given and to be truthful I have been quite disatisfied with the treatment I have recieved.

I went to the hospital this week and demanded answers because I cannot go on like this anymore. I know that Lupus test have been run before but came back clear. I have aksed the hospital to re run the test before but they refused

I have been suffering really badly with prickly heat on top of the other problems, joint and muscle pain, spondylitis, tiredness and the lumps and bumps on my skin. The doc has now said that I am photosensitive and needs to redo the Lupus test as she knows that my problems are caused through my immune system but to be honest I am so confused by what she has said.

I have been put on Plequenil tablets and sent home with information on Methotrexate, Ciclosporin and Azathioprine/Imuran as once a cretanine test has been done is the tablets I will be put on, well I think one out of the three. I am not sure if the tablets I have been told to read up on are Lupus treatments but the doc did say it is not a decision she has taken lightly to consider these meds.

What I wondered is can a skin biopsy alone be used to make a diagnosis for Lupus or do the bloods have to back it up as well. The doctor said the biopsy would show one of three things but I can't even remember rightly how she described it because I was just bombarded with info that went over my head

I am so confused and fed up by it all now and I just wondered if someone could shed any light on the situation for me. The info on the new meds has frightened me I will be honest as it seems a big step up from just taking anti histmines, steroids and creams

Thanking you in advance for any info, it will be greatly appreciated

Jules

 

[Katharine]

Hello there and welcome

That all does sound rather confusing indeed. If I understand rightly you have already had the skin biopsy done?

The answer is yes, a skin biopsy can confirm a lupus diagnosis and is very useful for cases where bloods are ambiguous. I was one of those and was diagnosed through a skin biopsy. Of course your symptoms are the most important part of the picture and your doc is obviously taking those seriously if you have been put on plaquenil and thinks that she can at the very least diagnose UCTD (Undifferentiated connective tissue disease), wich is treated in the same way as lupus.

I should think that you were given the info about the other meds simply as info. You certainly won't be being put on all of them at once. Most people start out on plaquenil and then, if their symptoms and disease activity merit it, may be put on an immunosuppressant like imuran. Some people are also put on short term bursts of prednisolone to get them over a bad patch though docs prefer to avoid its long term use and that's why they will try to use drugs like imuran so as to avoid prednisolone.
¨
Plaquenil is the preferred "baseline" med but it takes from 3-6 months to start working (sometimes longer for full effect). It is a disease modifying med and reduces the frequency and severity of flares.

Your doc (rheumatologist or dermatologist?) must strongly suspect some type of connective tissue disease to put you on plaquenil and to inform you of others.

You mustn't worry too much about what drugs you'll be put on. Nowadays people are treated with finely tuned doses of several meds rather than massive doses of one. In that way medication can be better matched to the patient and their disease activity.

Are your main symptoms skin problems or do you also have problems with joints, fatigue and so on?

Sorry I can't help more, I found your post a little hard to follow. No doubt because your appointment was so hard to follow!

Hopefully we can help you to sort out a few things and when you next see the doc you can ask the right questions and get some clear answers.

hugs to you :hug:
Katharine

 

[Jules123456]

Hi Katherine
Sorry for the confusing post but as you have rightly thought the appointments don't make sense to me

Yes I had the biopsy last week, I have had one before but that was just used to confirm the urticaria vasculitis

It is the dermatologist that I see at the hospital and the spondylitis has just been drealt with by my GP

The problem that I go to the hospital for is my skin problems but when I get them I get the most horrendous muscle and joint pain as well. I have found now that I am feeling so tired and if I say sit at the computer I literally fall asleep.

As far as the new tablets are concerned the doctor said it is time to bring out the "Big guns" as nothing else has worked to an extent that it has made a great deal of differnce. I have been on loads of tablets and the only one that made difference when things have not been at there worst has been Telfast. I have tried prendislone but without much sucess but a suitable weight gain which has made me so sad. The doctor said she would put me on the new ones until the creatnine tests came back ok and that she was happy that my husband and I were happy after reading the info.

I am just at a loss with it all now and feel really confused. I only started the
Plequenil last week so obviuolsy no benefits that it may bring have not been seen yet.

I feel so guilty to my family right now as I up to 18 months 2 years ago I was as healthy as anything and was the real back bone of the family and now I feel that I am letting them down so badly.

Thanks you so much for your time and advice. Sorry if my spelling is a bit iffy on some of the words or medication names

Love
Jules
xxxx

 

[Katharine]

Hi again,

We all understand that feeling of just not being who we used to be and so many of us here were very active people before.

Have you taken a look at the diagnostic criteria in the "not yet diagnosed" section?

It may help you see if your other symptoms fit

http://www.thelupussite.com/forum/showthread.php?t=33123

there are also the alternative criteria

http://www.thelupussite.com/forum/showthread.php?t=63963

Katharine

 

[Clare.T]

Hello Jules

It sure sounds like information overload! Even if your doctor has the best of intentions there's a limit to what we can take in at one time. She also ought to be explaining med options better and advising you which she recommends.
Many of us find it helps to take a notebook in with us and make notes of the main points of what is said then as the consult draws to a close go over them. And if possible have someone go along with you to take notes and act as another, calmer, mind.

It's hard to know exactly what she meant by the biopsy showing one of three things but a biopsy from unaffected even unexposed skin can show lupus. It's called the lupus band test
Biopsy can also show the vasculitis but I think that might have to be taken from affected areas.
As far as I can make out, there are two sorts of chronic UV, one that's associated with low levels of a protein called complement and is often associated with certain autoimmune connective tissue diseases especially lupus. It's called hypocomplementemic urticarial vasculitis, 'HUV'.
The other sort isn't associated with systemic CTD's but there can be systemic symptoms as well as the skin, many of which resemble certain lupus symptoms. I get the impression it is a rather complicated area

It sounds as if she's running blood tests for lupus too. There are several tests and a complete blood count too of course. Maybe testing for creatine is part of that - it can show that kidneys are affected but you would also expect a urine test to be done as well. There are some rare chronic complement deficiency states that case lupus like disease too.

Plaquenil is the basic medicine for lupus, both skin and systemic disease even when people need other medicines in addition. UV is often treated with lupus medicines except the cyclosporine which isn't used much at all probably because there are other meds that usually do as good a job with less risk of side effects, such as on the kidneys. I do have the impression that it is more a treatment option for some cases of UV.
The Plaquenil generally speaking has very few side effects just some short term ones. There is a very slight risk of it starting to damage the eyes so it is common to advise an eye test within a few weeks of starting it to provide a baseline and make sure there are no existing conditions that might contraindicate it. Although in the UK the Royal college of opthalmologists decided the risk was so small it wasn't worth the cost of getting regular checks done on everybody taking Plaquenil I suggest you get them done every six months or a year and/ or learn what the signs of possible trouble might be, the ones you can notice and check for yourself.
I get my eyes done at a high street optometrist with the facilties for the necessary tests.

The Imuran and methotrexate are in common use in lupus. I suppose I have got so used to them being taken by people here that I am almost amused at them being described as ' big guns'. They are in a group of medicines called immunosuppressants and steroid sparing meaning, they reduce the need for steroids. The manufacturers' side effects and warnings list is always scary as they have to list every possible side effect to avoid liability and conform with regulations.
Long term use of steroids has to be avoided and reduced if at all possible because it definitely risks many very serious side effects. Many of us take a mix of meds so as to get the best from each at the lowest effective dose, with the lowest risk of side effects.
We take them in lower doses than those used for transplants so the risks are less; we are regularly checked for hidden side effects and hundreds of people take these meds without problems only benefits. As we tend to react differently to meds both good and not so well it is often a question of trying them to see what works best and to get the right mix.
I haven't heard of methotrexate being used for lupus skin or UV but maybe it is . It seems to be used more for arthritic problems but I only know what I have read so we have to trust in our consultant's clinical knowledge and experience

Try to see it as at last moving on to an important step towards getting relief from your symptoms. As you say, nothing has helped so far.

Please keep in touch and ask for any further help on any topic. We'll do our best to help you through.

There's a thread about HUV on Related Conditions section that could be helpful and you can always start your own thread with the title "UV/HUV"

http://www.thelupussite.com/forum/showthread.php?t=61974&highlight=urticarial+vasculitis


http://www.emedicine.com/derm/topic449.htm

Bye for now and very good luck

Clare