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Discussion Starter · #1 ·
Hi everyone i haven't posted for a while as my laptop went doolally and had to be sent off to be fixed:hehe:
I saw the rheumatologist on 11th April and he says that he is quite certain os f connective tissue disease and in particular lupus due to my previous bloodand x rays and the colour changes in my hands.
He repeated ANA and did lupus anti coagulant, some hand and foot xrays, referred me for pysio and hydrotherapy and made me another appointment for 12th June. He said he wasn't going to start any other meds until the test results were back. I wasn't really bothered about that as i've already been on a course of prednisolone and am om tramadol upto 800mg per day, amirtryptaline 30 mg, omeprazole 40mg, and am now trying an nsaid called arcoxia, so atleast my gp is trying things to help my pain and discomfort.
Lrtter came through to gp from rheum. outlining loads of different bits and bobs just about his initial observations and further test to be conducted.
My g.p has since tried chasing up further comments but found out that the rheum. was a locum and has now left (after 3 weeks of waiting!!) and has requested one of the other docs to review my results.
I am feeling absolutely awful, i have been in tears in pain even with the tramadol, i have been a little better since starting the amirtryptaline and arcoxia.
I was prescribed arcoxia before but stopped it after a few days as i had a hot red rash on my face which my gp thought was an allergic reaction but later thought it cold actually be the malar rash so asked me to try again and guess what this time no rash!! The plot thickens:lol: !!
So am currently waiting anyday for a call from the gp with some news.
Just wanted to ask?i had my first ANA back in Oct 07, the result was low posistive speckled as was this one, no other antibodies detected but this time one of the other tests an LKN had a low positive speckled result also, does anyone know what this test is, i have read up and have some theories but nothing definate.
I would really appreciate comments.

Hope everyone is feeling the best that they can doo.
Cassie
 

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Hi Cassie,

I do hope that your GP can get you schedules for an earlier appt with another Rheumy (((((((((Cassie))))))))) your pain levels sound horrendous right now :(

I had to look up the test LKN (Leukotactin) it appears it is some kind of chemokine. Chemokines are a family of Cytokines i.e. proteins secreted by cells. Some are pro-inflammatory. It's all pretty complicated once you start exploring parts of the immune response so I'm way out of my comfort zone here, but it must be significant to your inflammatory process. It's not a test I've had done before.

love
Lily
 

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Hi Cassie,

I didn't answer before as I really don't know what to say. It all sounds so confusing for you after having a pretty good rheumy appointment to be then just left hanging there because the rheumy was just a locum. What a pain :( At least it seems that your GP is with you and ready to chase people up so I hope you start getting good solid answers sooner rather than later.

It does really sound like you need something serious done about that pain you are in. It is so wearing when it goes on for too long and ends up affecting absolutely everything.

hugs :hug:
Katharine
 

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Discussion Starter · #4 ·
Thanks for your replies,
yes leukotactin is what i found, but then yesterday i thought as the test result had a pattern ( speckled ) and thought maybe i could have misheard over the phone and looked into LKM, this is an antibody, its the lver kidney microsomal antibody, now i really don't know what to think, i know the assosciation of this anti body interms of autoimmune hepatitus but don't know what to think now, just wish i could her back from the g.p with some news!!

Thanks guys.

Cassie
 

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Discussion Starter · #5 ·
Update

Hi ladies,
after all that confusion with the blood results, LKN is an anitbody and it was acually negative.
I went to see my diabetic consultant last Tuesday and asked him to print out my results from the 11th April when i saw my rheum. there were some abs with some liver/kidney test , C3 was raised the Rnp was positive which was a surprise to me as i thought actually the bloods would be inconclusive and just the ANA would be positive.
Anyway it goes to show that you should either have things in black and white so you can see for yourself or wait to speak to someone who knows.
I saw my gp that afternoon, i was feeling so awful and he phoned rheum. department and managed to speak to one of the consultants whho did not have my results but reagrding the rnp said that it was more likely to be mctd than sle, but obviously could not say for sure until she had seen me.My gp mention his concern at my hands which whre swollen and bright red all over nd she said for him to start me on plaquenil, she also said she would send me a letter with an appt asap. She said the delay was down to some hospital politics (surprise, surprise!!)
Sorry for rambling!
I don't think i will really accept the reality of things until i go back to the rheum.
I feel so bad to day i can hardly breath, my fatigue is so bad, i have all of my 5 children home aswell on their halfterm, my pain is bad today, i have been really strong but today just feel very ill and down.
Hope everyone else is well.
Cassie
 

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Hi Cassie,

I hate to see you suffering so, I hope you get to see the rheumy soon. It is terrible that you have to wait because the powers that be don't have their act together.

Your mentioned having problems breathing. Is this something new? Do you have increased pain when breathing or can't you get enough breath?

Take care,
Lazylegs
 

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Discussion Starter · #7 ·
Hi Lazylegs,
Yes what a nightmare!!
Its something that i've had since January time but it is something that has benn getting worse but then all my symptoms have been getting worse over the past 3 mths, pain, joint swelling etc.
I have chest pains alot, the worse i feel the worse the pains get, but not like pleurisy, i 've had this a couple of times and its not that acute pain on breathing in and out more like spots throughout my chest.
The shortness of breath is like difficulty getting in enough air along with it being a big effort to breath, like having a pressure on my chest.

Thanks for responding, I would definately be interested to know if you get something similar.

Take Care :)

Cassie
 

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Hi Cassie, sorry to hear you're so ill and without much relief yet. I am having the same kind of chest symptoms you described in your last post. I had this way back when I was first dx five years ago and it went away when I started on pred. I've been off prednisone entirely for .... I don't know how long. Maybe 7 or 8 months? And recently I'm going downhill. That chest thing has come back just over the weekend and now I'm going to the dr. at 4 today and I'm a tiny bit worried. Feels sort of like somebody hit me mid-chest. Not a sharp pain, but worrisome. And exhausting. I'm so tired, it's wearing me out to type. :lol:

I hope you find some answers soon and get on a good treatment. Actually, I hope the same for myself. ..... :eek::sigh::sigh:

Hang in there, we'll make it.

Sunny
 

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Discussion Starter · #9 ·
Hi Sunny,
sorry you sre feeling terrible too, its awful isn't it.
I hope the doc has some answers for you. I've had these chest pains since Janusry and there is no exlplaination not form docs listening to my chest. The funny thing is though i do have a heart murmur but no one as yet has requested an ecg :wall:
I am waiting to get reports of chest x rays i had in march when they thought i had a PE (had pleurisy). I was told by the duty doc at the hospital that they were clear and then when i saw the rheum in April he mentioned my chest x rays as a sign but i forgot to ask what in particular about them.
I hope you get some answers today!!

Good Luck

Cassie
 
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