[debatat]

Hi

I am new to this site. I have been ill for 2years now and still no full diagnosis other than lupus clotting disorder and inflammatory arthritis and kidney disease. Just had really frustating rheum appt, am in a major flare, joints really swollen , painful and hot. hands, knnes, esp, rash on face back. No bloodwork done or treatment given, just told to come back in 4 months. Spent yesterday in bed as fatigue and joints so bad. If try to walk knees are so bad, everything swims and goes black, not good, also if i persist in walking ankles and hips then swell. If i use my stick or crutches it aggravates joints in hands. Not sure what to do, gp agrees been treated badly says i need dmards but that rheum has to prescribe them. Sorry to moan, its just so hard to keep on fighting and manage day to day stuff. If anyone has any tips i would be so grateful

 

[Clare.T]

Welcome to the forum debatat

Dear me, this sounds a puzzling and shocking situation ! Surely you can't mean you aren't on any disease modifying medicines at all ? It sounds as if you have enough going on for a definite diagnosis of some autoimmune connective tissue disease process , whatever its name might be.
How awful to leave somebody in the state you are in for another 4 months!

Birmingham has a centre of excellence with the internationally known Dr Caroline Gordon. An option would be getting referred to St Thomas' or one of the other major London teaching hospitals with large rheumatology departments. Your GP has to refer you and in some places you have to struggle with the local Trust. Or a private visit to the London Lupus Centre might be feasible and there's not long to wait for a consultation. You are entitled to blood test results so if you have recent ones you would be paying about £200 for the consultation alone. If they want further tests done your GP might be able to order them.

Do you know why they are refusing to give a definite diagnosis?

Please keep in touch - we'll help you all we can to achieve a better quality of life for yourself and your family.

Bye for now !

Clare

 

[Joandublin]

Hi Debatat

Welcome to the Forum but what a terrible state of affairs to be in:worried: Its hard to believe that your Rheumatologist is 'treating' you this way

I hope, as Clare says, you can get a referral somewhere else as this person is clearly bad for your health. While you are waiting on a new referral can your GP prescribe anti inflammatories and pain killers for you? This may help reduce the swelling and help with the pain. Please dont give up. You are not getting appropriate treatment at the moment and when you do things should feel so much better.

Hope to hear from you soon

Luv n stuff
Joan:rose:

 

[greenhaggis]

Hi just wanted to welcome you to the site!

I have found people on this site kind, supportive and very informative (the site itself has a wealth of information too that is so helpful).

I hope that you get some medications soon to ease the pains and swelling and its definately time to seek a new Rhuematologist!

Good luck and take care,

Hugs!

Lesley

 

[debatat]

Thank you so much for all your support. It really helps to know that there are people out there who know what I am going through.

The reason for no diagnosis( although gp says I have lupus) is that my ANA is positive and the highest my rheum has ever seen but because the anti DNA (hope thats right?) is negative he says that it isnt lupus. My RF is negative at mo but rising each time tested. ESR rate varies between high and normal. Platelets are always really high. Apparently my bllod goes 'thrombotic', so have to take aspirin. Cant take anti-inflammatories as makes kidneys worse and they took me off steroids as made me diabetic. I am so confused, I like many others have so many 'weird' symptoms a lot of them similar to ms (that has been ruled out) and they only tested me for lupus after 9 months of me asking because we have lupus in the family!!

Am going to check out website and links and think about a referral to another centre.

Thanks again

Deb

 

[kelamo]

Hi, I can understand your frustration!! i have been diagnosed since feb but still not on any drugs that effect the symptoms. My rhum has been ok and has brought my appointment forward as i have now for the first time had to take 6 weeks from work (which they hate me for) and called in desperation for it. I find for everyday care and hydrating cream oilatum natural remedy face cream, it has green on the bottle, if not say these words exactly its the wrong stuff and will be too thick for your face. But i find it helps keep my face moist and prolongs the rash coming out as bad. i find all other creams make the rash worse.

 

[Clare.T]

Hello deb

because the anti DNA (hope thats right?) is negative he says that it isnt lupus

This is quite wrong. Anti ds DNA does not have to be abnormal for a diagnosis of lupus. Maybe half of those with a lupus diagnosis have these antibodies. It is one of the few specifics for an SLE diagnosis but it is definitely not essential. If he wants to be some sort of nitpicking stickler he could diagnose Undifferentiated Connective Tissue Disease which means an autoimmune conn ective tissue disease but no specifics for lupus or any of the other CTDs. This is treated just like lupus and I am sure many doctors who aren't so fussy just call it lupus. UCTD is a preferable diagnosis because it doesn't carry the stigma of an SLE one
The anti malarial Plaquenil hydroxychloroquine is the first line disease modifying medicine and has an added advantage of slightly thinning the blood.

It sounds as if you have antiphospholipid antibodies which can cause clots and thrombosis and lead to a formal diagnosis of antiphospholipid syndrome- hence the aspirin and usefulness of the Plaquenil. The presence of these antibodies as shown by the lupus anticoagulant tests and tests for anticardiolipin antibodies is also a criterion for a 'lupus' diagnosis Many APS symptoms resemble MS symptoms. In some cases additional blood thinning prooves useful even when there are no events like clots
You might need something for the kidney disease such as an immunosuppressant like azathioprine ( Imuran) or Cellcept ( MMF).

I am really shocked! We don't live down the Zambesi and this is not rocket science or brain surgery. It sounds like minimal health care standards and very uncaring. I hope that the information and encouragement you can get here will pave the way to you getting much better treatment - we only have one life !

Get copies of all test results

Bye for now
Clare

 

[debatat]

Hi Clare

Thanks for all your support. I shall have to take what you mentioned up with my gp. I have tested positive for lupus anti-coagulant. My rheumy is witholding treatment till I get worse so he can diagnose for definite what problem is, which to be honest really scares me. We have lupus in the family and I have seen what withholding treatment can do.

Thanks again everyone for your support and encouragement it means a lot. Thanks also for tip on face cream. I have found a facial wash called Dead Sea natural mineral facial wash by Yarden J.Malki products from Boots to be brill at calming rash. Its not cheap £9 but it lasts for ages.

 

[Jenkay]

Reading your post makes me so mad, please see what you can do to see another doc. I completely agree with Claire, you don't have to have Anti-DNA to have lupus (only about 50% do). I've never heard of waiting on treatment for things to get worse especially with all you have going on.

Like Claire said get copies of all your records, it make seem odd at first but it is a good idea to have everything yourself and bring it with you to the new doc. It helps the new doc and saves some time if they have an idea of what tests are positive.

Have you taken a look at Dr. Wallace's book, 'The Lupus Book", it does an excellent job of breaking down the dx. I highly recommend.

You'll be in my thoughts and I hope another provider will help you find some relief.

Jen

 

[Clare.T]

witholding treatment till I get worse so he can diagnose for definite what problem is, which to be honest really scares me

I can hardly bear to read this. You have got to do something to get effective help asap and then write to complain.

Here's a hefty dose of Power Vibes On the warpath as best you are able! Do you have anybody to support you advocate for you ? Make that call to the West Midlands LupusUK branch that wheeliefab's in- it's probably the most active in the country.

Hugs
Clare

 

[Joandublin]

Mother of God! Run as fast as you can away from this Rheumy. What an absolute cretin I wish major, chaffing, knicker wedgies on him for the rest of his days.

I sure hope between you and your GP you can go get the proper treatment you need and then....POW!.... you will one day have your moment with this incompetent.

For now, though, he can wait - concentrate on getting someone who will treat you appropriately and not wait for disaster to befall . What a dope.

Much love and strength
Joan:rose:

 

[Clare.T]

West Midlands LupusUK Website

http://www.westmidlandslupus.co.uk/

Clare