[KarenM]

Hello Everyone

My name is Karen, aged 47 married no children

Have recently been diagnosed with Systemic Lupus and APS. I also have IGA Nephropathy, renal disease, which had me medically pensioned out of my job 10 years ago.

During this 10 years I have had many health problems, these worsened over the last 15 months with diagnoses of anything from MS to Menieres to all in your head. Thankfully I have a superb GP and we persisted the medical merry go round and I am now in the hands of a wonderful consultant rheumatologist, who within 15 minutes felt she knew what was going on. Blood tests also were key indicators.

Currently medications are:

Plaquenil
Aspirin
Amitriptyline
Prednislone

I have been on the Plaq for about 6 weeks thus far, with no difference in my symptoms, in fact this last week have been very unwell, but I am aware it can take some months for plaq to kick in.

My symptoms have varied but the most troublesome for me is

Pain, in feet, legs, hands, unrelenting, I can hardly walk
Fatigue, floors me completely
Temperature sensitity
Involuntary body movements (Chorea?0
Memory loss, slurry speech
Visual Disturbance
Balance problems

There are other more vague symptoms, I have some days where I feel relatively ok, but this last week has had me confined to barracks!

I am waiting on my Consultant to get back to me as to whether I need to be seen ASAP, her Secretary said this was undoubtedly sounding like a Lupus Flare.

Anyway here I am, and having had a quick look around, lovely site, thank you, and I am sorry my first post is a bit long.

I feel very isolated currently, we live in a very rural remote part of Essex, (farm) and family are miles away, so it will be nice to part of a group that knows how it is to live with this condition.

Best wishes
Karen

 

[Katharine]

Hello Karen and :welcome:

I'm sorry to hear what brings you here and that things are so tough right now :hug:

It is true that plaquenil does often take between 3-6 months to kick in and in some cases that can be even longer.

It may not seem so but treatment wise it is still early days for you. Not much consolation I know

I hope you have at least had some relief from prednisolone and that you have a good doc who listens if things are not OK?

bye for now, don't hesitate with questions or if you need to talk, we're here

Katharine

 

[lazylegs]

Welcome to the site Karen. I am sorry you are not feeling well. Hopefully the doctor will get back to you soon.

It sounds like you went through the same problems as many of us had to finally get a diagnosis. You were fortunate to have a GP willing to keep digging for the answer. Definitely stay with him.

The site is a great place to meet people from all over the world. Everybody is very friendly and more than willing to help when they can. Don't forget to check out the chat room. It is a good way to get to know your fellow lupies better.

Take care,
Lazylegs

 

[KarolH]

Hi and welcome to a great place.

You went through a lot getting to a diagnosis as did a lot of us, myself included. I also have APS and a few others to through into the mix.

I am confident you will love this forum. I joined here and it has become my home away from home so to speak. The people are supportive and knowledgeable. I have learned more from these folks then my own doctor.:lol:

Come join us in the chat room sometime. Hope to get to know you better.:wink2:

 

[spellbinder]

:wavesmile:greetings and salutations

just wanted to pop in and welcome you to the sandbox.
seems you have alot to deal with but once your treatment plan kicks i would imagine that things will smooth out somewhat.

i've been diagnosed for 7yrs now (sle/cns) had a rough time until recently while on a non-traditonal treatment plan.

glad you joined, great people and a wealth of information as others have said.

any way just wanted to welcome...:welcome::rose3:

hugs and kisses

 

[KarenM]

Thank you

Thank you everyone for the very warm welcome. I will endeavour to take active participation in threads, but at the moment, I am frazzling my brain with some reading, and oh have I stumbled across some very pertinent articles, that explain so much on my history to date.

Thank you again.

Karen

 

[bessiebertram]

hi karen

First of all, wishing you well. I am not diagnosed as yet but have same symptoms as you for 20 years especially slurred speech and the involuntary movements. Still awaiting my results. I would be interested to know whether you have chorea or they are seizures? will you be asking your doctors about it?

Take care

Bessie

 

[onetay]

Karen,
Hi and welcome to the site. It seems that you have been having a time of it. I am sorry that seem to be having so many problem. The site has some wonderful support aides. There is first hand experiences from members in the posts, there is a medicine area, and an instant support area with the chat room. I do hope that you find all of these helpful to you in managing your disease.

I hope you feel better soon.

 

[KarenM]

Hello Everyone

Unbelievably it is now a year since I last introduced myself and signed up.

It is just shy of a month to the year when I first saw my Rhuematologist and was diagnosed with SLE and APS, the time just seems to have flown

I saw my Rheumatologist yesterday for review.

Not a lot has changed unfortunately during this year, but of course I have seen her every three months during this year. My problems still are the blinding headaches, joint pains, particularly hands and feet, and currently suffering skin flare due to UV sensitvity, and we are not even at height of summer, fatigue, complicated stomach issues, and few other irritating issues.

So yesterday lots more blood work, and an increase in my Azathrioprine.

Medications are now.

Aspirin 75 mg
Plaquenil 200 mg 2 x day
Azathiorpine 125 mg 2 x day
Amytriptyline 60 mg
Cilatopram 40 mg
Laparzole 30 mg 2 x day
Codeine Sulphate only to be taken when headaches are severe

I have posted about the problems that occurred over the year so won't bore you with all that again.

On the positive and this is the only way I can look at it, I am not any worse, I have the support of a wonderful husband, sadly friends are a whole different matter, and my family finally are coming to terms that Lupus is not something I can control, nor say when a good day is, or likely to be. Being honest, I am still a year on, coming to terms with it myself, the sense of loss of the person I was is overwhelming at times, and I am suffering from moderate depression, and only recently commenced Cilatopram for this, as yet have not noticed a change in mood but it has only been 3 weeks.

I am absolutely determined to remain positive as I can, accept that there will low days, but embrace the high days, and recently signed up to do 1 hour voluntary work at my local hospsital visiting patients who have no family, I see this as a start of putting something back, plus it gets me back out in the world, and there is no set day or time to do my hour, so I can guage it on the day. I am hoping that this will also give me a huge confidence boost, as I have lost a lot of confidence.

I know I have said it before, but I really do want to participate more in the boards, the only thing that prevents it a lot of the time, are the problems with my joints, typing is pergatory at times, but being honest, I think my low mood is much to blame. I do check by frequently though.

I know I am among friends here, who truly do understand.

 

[debatat]

Hi Karen, I think the first year is a milestone. I admire your positive spirit, the voluntary patient visitng is a lovely idea. I hope the increased meds help you.

Take care

 

[countrylass]

Hello Karen welcome back

Just like to says ending you cyber hug take care,postive mind does help so sorry see way youve suffered glad you do have good gp consultant.
countrylass

 

[lazylegs]

Hi Karen,

Visiting patients with no family around is a great idea. I am sure you really brighten these patients day. It must be rewarding for you also.

Good luck with your medication increase.

Take care,
Lazylegs