The Lupus Forum banner

1 - 9 of 9 Posts

·
Determined radiographer
Joined
·
36 Posts
Discussion Starter · #1 ·
Hi everyone!

My name is Lisa and I am from Swansea, South Wales.
I did join a long time ago when I didn't know what was wrong with me, but was told it maybe lupus.

Well since then, I have been diagnosed with 'undifferentiated connective tissue disease' but being treated for lupus?!!!:eek:

I have had a tough couple of years trying various medications to help with the joint pains, fatigue, etc etc, but to be honest, the side effects were worse than the problems, so I am med free at the moment! :worried:

This is my list of conditions which have all arisen since being diagnosed, even though I had them all for years! It was like as soon as someone took me seriously and realised I wasn't in fact a total hypochondriac with a million different things wrong with me, a light switch was turned on!!

I have:-
Raynauds phenomenon
PCOS
Transverse Mylitis (spelling??:eek:)

Constant symptoms I have:-
Quite severe loss of sensation in my hands and feet, including no temperature awareness.
Constant mouth and nose ulcers
Skin problems, whether dry and itchy red rash, or nasty large lumps, which may or may not become spots.
hair loss
Extreme fatigue
Joint pains, particularly in hands, feet and knees.
dry eyes
headaches
depression!!

Oh....aren't I a joy at 35 years old! I dread to think what I will be like at 60!! :lol:

Well that is just a basic intro.....I would LOVE to know what type of connective tissue disease I actually have, if lupus, which type etc etc, but no one seems to have any idea at all :worried:

I promise I am not a misery guts all the time though!! :lol:

Love Lisa
 

·
Registered
Joined
·
212 Posts
Hello and welcome! I'm a similar age - 37 going on 90 :D

I've got a friend who's being treated for rheumatoid arthritis - we're both on the same medication so most MCTD tend to be lumped together. At first the diagnosis mattered to me, now I don't care as long as I feel better. I'm expecting my diagnosis to be changed - my joints have started to look a little deformed in my toes, but a lot of my symptoms are lupus like (rashes, fatigue, anaemia, joint pain, malar rash, depression). It's not unusual to have several conditions coexisting.

I have similar issues to you with my hands - on fire one minute and sweating, freezing cold and blue the next (and that's just this week - the middle of summer).

And I too am not always a misery guts - I'm learning to develop a sense of humour about my illness. I suppose if you didn't laugh you'd cry and I've had enough of that!
 

·
Moderator
Joined
·
11,409 Posts
Hi Lisa,

Welcome back.

What meds were you put on that the side effects were bad?

There is several meds that can be used to help control your symptoms.

Sorry that you are feeling so rough.:(

Take care,
Lyn
 

·
Registered
Joined
·
194 Posts
Hi Lisa,

I am 36 years old and newly diagnosed with Lupus. I have similar symtoms to you. Fatigue, joint pains, PCOS, headaches and dry eyes. They were toying between RA and Lupus but my xrays and ultra sound scan showed no joint damage/erosions but showed tendonitis, swelling and inflammation of the joints which is more consistent with lupus. Hope you get some answers soon.

Claire XX
 

·
Determined radiographer
Joined
·
36 Posts
Discussion Starter · #5 ·
Thanks everyone!

I was taking plaquenil, which made me soooo sick, unless I had a sleep for an hour straight after taking it, which wasn't practical with two little ones.

The only other medication I have been offered is methatrexate(spelling??) for the transverse mylitis and the lupus, but I don't want to go on that to be honest. My dad is on that and another injection (he has RA) and it really scares me! Oh, and a strong course of steroids :worried:

So, basically I am living on tramadol for pain relief and to help with sleeping when things are bad, like they are now, and nothing at all when I am feeling ok.

It is nice to see that someone else links their PCOS with the lupus, I was under the impression there wasn't a link with these two, but I have come across several people who have both, makes you think eh?

Thanks again for the replies ladies, hope to get to know you all better!
Lisa
 

·
Registered
Joined
·
7,800 Posts
Hello Lisa,

UCTD is a diagnosis which is often given if you don't quite meet enough criteria for a firm lupus diagnosis but the consultant wants to get you treated and give you a diagnosis. The treatment and symptoms are really the same but it can have less consequences on insurance.

Plaquenil doesn't always suit everyone but it is important to know that there are many med choices besides plaquenil. Methotrexate is one, among others, which may suit you (you really can't judge by how your Dad reacts to it - for example my Mum is violently ill on imuran and I'm absolutely fine on it). Other meds might be imuran or cellcept which are also immunosuppressants or perhaps mepacrine (another anti-malarial) but that isn't always available as an option.

I think you need to see how you go but keep in regular contact with your rheumy and keep an open mind about meds if you feel you need them later.

Katharine
 

·
Administrator
Joined
·
7,566 Posts
Hi Lisa, nice to 'meet' you. I am 37 and have lupus, RA, hughes and raynauds. I have a lot of symptoms similar to you, the loss of sensation in hands and feet is a real pain. It must be hard with two little ones as well. I hope you manage to get some meds sorted to help you, so you have a bertter quality of life. Maybe see you in the chat room sometime.

Take care

Deb
 

·
Registered
Joined
·
14,661 Posts
Welcome back ! :)

UCTD is a definite diagnosis of autoimmune connective tissue disease that doesn't meet any diagnostic criteria of the individual diseases. In the case of lupus it means there is no sign of the four specific lupus criteria which are anti ds DNA or anti Sm antibodies or proven lupus skin or kidney problems I am quite sure that plenty of people get diagnosed with lupus usually qualified as ' mild' when other more fussy doctors diagnose with UCTD. On the whole it is a good thing not to have an SLE diagnosis which will affect insurances of various sorts important even in the UK, although we dont need to be concerned about not getting health insurance because of the diagnosis.

UCTD statistically stays the same but may develop into a definite autoimmune disease.

I am sorry about your bad experience with Plaquenil, presumably you mean it made you nauseous or even vomiting. Perhaps you are indeed one of those people who can't tolerate it under any circumstances but it might be worth revisiting how you were taking it. Important considerations can be :

Starting at a low dose, only 200mgs a day or even less frequently.
Taking it always with food
Taking it in the evening which often reduces the nausea possibilities.
Using an antacid (which in fact reduces the absorption and shouldn't normally be taken within a couple hours of taking the antimalarial.)

The alternative antimalarial is called Mepacrine ( US Quinacrine) and is often a very acceptable alternative because it is somewhat different chemically. It is not so easy to obtain though because it isn't marketed these days for anti malarial prophylaxis. However Boots in England will make up a prescription. I have to get mine from the hospital on prescritpion from the consultant because my GP refuses to prescribe it.
Your consultant can be expected to know about it and help you get hold of it.
These meds are invaluable and bring so many beneficial side effects in addition to being disease modifying and flare reducing and helping against disease progression. So I think it's well worth while exploring the antimalarial possibilities again.

The next group of meds in widespread use are methotrexate, azathioprine and Cellcept also known as MMF. There is no sure way of knowing if or how these diseases might progress nor can you know what benefits you will get from any medicine until you have tried them.

But not taking any disease modifying meds might mean a time will come when your quality of life is so poor that you feel you have no choice. Other NSAID's might suit you better too.

All the best
Clare
 

·
Registered
Joined
·
14,661 Posts
I forgot to ask if you have been tested for antiphospholipid antibodies ? The two relevant tests are the so called "Lupus anticoagulant" which is various clotting tests, and test for anti cardiolipin antibodies.

It is important to make sure about diabetes and vitamin B 12 deficiencies, simple tests that often get neglected but either condition can cause unpleasant symptoms such as neuropathy and become very serious causing irreversible damage if neglected. Also thyroid tests are a good idea

Let us know how you get on please

Bye for now
Clare
 
1 - 9 of 9 Posts
Top