[Smile Of Life]

Hi all,
I went to see one of the great doctors at the lupus unit at St Thomas' yesterday. I had to reduce my mtx dose recently as my white cell count went way down, and so far my lupus has coped with it. I have also been reducing my steroid to safe levels.

Anyway, I asked her if I'd be on all my meds for good. She said that they wait for a year of reduced / no symptoms and then start taking people off all meds. She reckons Plaquenil should be kept on for life, but everything else can potentially go if the lupus calms down. All rheumies so far have told me that people have to stay on things for good!

I also asked about the latest thoughts on life expectancy for us with lupus. She says that more or less it is now the same as the rest of the general population. Regular monitoring of bloods mean they can catch things earlier now than they used to be able to, and the meds are so much better. The biggest issue is cholesterol related problems, but these should be more closely monitored as well if you have lupus.

So I came out very positive as she had reversed very negative pictures I had been given of lupus in the past. I always thought that the stats on life expectancy were way out of date in all the texts I read.

I'm just working towards a more stable life from the symptoms point of view to be able to kick the meds. Fingers crossed!

 

[LolaLola]

Dear Duncan, So glad you had a good appointment. I do know that women can sometimes come off all Lupus meds after the menopause.
x Lola

 

[Katharine]

Hi Duncan,

That's great that you had such a good appointment and that it left you feeling so positive. We all need a little postivity and it makes a big difference to how we deal with things.

Yes, it is awful to see that so many outdated life expectancy statistics are still out there. It is true that for the majority of lupus patients their life expectancy would be the same. When my Mum was diagnosed with dermatomyositis (this was around thirty years ago) she was basically told she was about to die She was very ill indeed at the time but... Anyway, she has outdone them in that respect and is a very sprightly 71 year old now and looks like she'll be going strong for a while yet.

I think that stability is a good first step to want to achieve. Things have to be taken day by day but also looked on with positivity.

Katharine
Katharine

 

[x_claire_x]

Hi Duncan..lovely to hear some good news and that you had such a positive experience. Glad we are not going to conk out too soon!:lol:

 

[onetay]

Duncan,
That is wonderful news for you. I hope that it works out so that you are only on the plaquenil. Your information is very promising but in some cases could also be untrue. Those of us that it took forever to find out they had lupus and many that were misdx to begin with had a lot of time waisted that changes some of their outcome for not being on meds forever. I thought I would also share that. If you have been treated very early on in the disease than your chances are much better at some point of going down to just the plaquenil. You did share some very exciting and promising news that gives many hope of a pretty normal life. You are right about the life span it has increased a lot. I hope you are doing well and feeling well also.

 

[nicky00]

Hi Duncan

Good news

Im assuming the cholesterol problems are related to vascular disease.

I went on a clinical trial via St T's and the test was about vascular disease in lupus.
Although we are more susceptable the general population has these problems as well.

What did they say about cholesterol if anything?

Just interested

 

[Smile Of Life]

Nicky,
Yes, the cholesterol problems I mentioned are related to vascular disease. It was this that the doctor said is probably the biggest problem affecting lifespan for lupus patients.

I, too, have signed up for the St T's trials so I'll be well monitored in the future. So long as all lupus patients ask to be regularly monitored for cholesterol they will be in a better position regarding lifespan.

Thanks everyone for your thoughts.

 

[orangelily]

Hi Duncan:wavesmile: just want to add so happy for you and it great to hear some good news.

Take Care Hugs & Kisses

 

[Douglas]

So happy hear of your good visit. Rather like my MD saying that I am "very lucky", such things can boost one's mood. And we can all use a good mood booster, so thanks for sharing your happiness.
Douglas+