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eileenv
03-05-2010, 04:09 AM
I would appreciate anyone's view, as from yesterday morning i had never heard of wegener's. I am under the care of a rhuematoligist and whom i saw last week, he said i have an autoimune desease, said it wasen't lupus because of neg DNA. I have low tier ANA and a slightly positive ANCA with a raised pr3 antibody of 31 the letter went on to say but she has no evidence of wegener's. He ask me if i had any problems with my sinuses, i said no at the time but on thinking i forget to tell him that for the three weeks i have had non stop of continually blowing my nose and my nose appears to be blocked on one side. I also have a raised esr and crp and a positive RF also a high c4 and raised globulins . MY other syptoms are fatiuge and jiont pains and mouth ulcers skin lesions nad facial rash. I am on prednisolone and plaqenil at the moment, i would be grateful for anyones advice.

Sangye
03-05-2010, 04:17 AM
Hi Eileen,
I'm glad you found our group. You have a number of symptoms that could indicate Wegener's, along with (+) ANCA and elevated pr3, ESR and CRP. (Elevated ESR and CRP can occur with many conditions, though.) Every one of your symptoms can certainly occur with Wegs. The fact that your doc wrote "no evidence of Wegener's" indicates he doesn't know the disease well.

Where are you located? I suggest you find a rheumy who specializes in Wegs asap for a thorough evaluation and proper diagnosis. Wegs is quite rare and extremely difficult to treat. Highly variable presentation from patient to patient. Regular rheumys are not skilled in treating it and often are unable to even diagnose it properly. If it's not Wegs, the Wegs doc will help you figure out what it is.

If we know your general location we can help you find a proper Wegs doc.

Jack
03-05-2010, 05:15 AM
Welcome Eileen,
I can only agree with every word of Sangye's post. Wegener's is hard to prove without a positive result from a biopsy (and some Wegener's patients even have -ve biopsy results!), but you need to press for all the investigative work to be done by someone who is experienced in the disease. A delay to diagnosis and correct treatment can cause you all sorts of serious long term problems. Even a high probability of having the disease probably justifies starting treatment.
If your nose is blocked by crusting of the discharge I would add that to the list of Wegener's symptoms that you are experiencing.

eileenv
03-05-2010, 07:42 AM
Thank you for your reply, i'm living in the UK. my rhuematolagist didn't mention wegeners to me, he done achest Xray, which was clear and said my kidney function was okay i did tell him i had a trace of blood in my urine which the observed. He then sent me a copy of the letter he sends to my GP and this is what he said"Her ANCA again was slightly positve with a raised PR3 antibody of 31 but she has no evidence of wegener's, however i am repeating her ANCA. Don't no if this makes any sense to you, he also said i had no evidence of sinusitis because when he asked i didn't connect it to the problem i was having with my nose, hope this makes sense.

eileenv
03-05-2010, 09:03 AM
Hi Jack
Tanks for your reply, i don't know if i replied before but here goes, my rhuematoligist didn't mention wegeners to my face he asked if i had any sinus problems which i didn't relate to what was going on ie the continuing blowing of my and when i blowed my nose the other day it contained hardened blood. He done a chest Xray which was clear he said but then asked if i smoked i said no then he said have i ever smoked again no now i wondering why he asked if the XRAY was clear. I then mentioned i had atrace of blood in my urine but he said my kidney's were okay i suppose he meant my u's and e's. That was last week this week i received a copy of his letter in which he mentions wegener's but then went on to sayi had no evidence of it. I'm now worried that i didn't mention my nose problem, as i don't go back till June, what i am asking is do you think i should go to my GP and tell him about this i don't want make a fuss, but on the other hand it is woryring me now. mY rhuematoligist should not put these things in a letter knowing i don't go back to see him for quite a while it dosen't give you a chance to ask any questions, i would be vert gratful for your advice. Thanks Eileen

Sangye
03-05-2010, 10:04 AM
Eileen, please call your rheumy and tell him about your sinus symptoms, etc.... I'd also ask him about his comments regarding your x-ray and smoking history.

The letter is a routine way of communicating between doctors. After each visit, they send your other docs a copy of the visit notes with their assessment and recommendations. It's very important that you call your rheumy as soon as you can. Wegs is sneaky and lots of damage can be happening before you feel really bad.

I also recommend getting a copy of the radiology report for the x-ray. It will mention any irregularities.

eileenv
03-05-2010, 10:17 AM
Hi Sangye
Thanks for your reply, i have replied to Jack a second time so i won't repeat it all again but i would appreciate you reading it and give me your opinion as i'm feeling worried that i haven't told the rhuematoligist everything and was asking Jack if ishould go back to my GP and tell him as i don't see the rhuematoligist till June.
thanks once again. love Eileen

Sangye
03-05-2010, 10:23 AM
Eileen, I replied in the post right above the one you just posted. We were probably writing at the same time! :)

eileenv
03-05-2010, 10:26 AM
Thanks Sangye
I ahve just seen your reply as ireplied to your first thread, I don't want to make a fuss but i know what you are saying, i don't get on very well with my Rhuematoligist and in the past 10months i have been under his care he has been rude, has said on one occaission why are youalways ill when you come here!!!. this time i took a friend with me and he was a bit different. Well no i have been feeling terrible headaches jiont pain purpera marks on my arms and chest as well as a chest infection to mention other things.
Thanks again Eileen

Sangye
03-05-2010, 10:35 AM
I totally understand. He sounds like my first rheumy who almost killed me. You're right not to go back to him.

Okay, so we've got to get you to a Wegs specialist asap. I question that chest infection-- it's often Wegs masquerading as an infection. I think you said you're in the UK? Are you anywhere near Cambridge to go to Addenbrooke's? They're a major Vasculitis Center.

renidrag
03-05-2010, 10:38 AM
Welcome Eileen, I don't post or reply a whole lot but one thing I can tell you is all the advice you have gotten from everyone else should be heeded. I understand not wanting to make a fuss, but sometimes we just have to. It is a great idea to have an advocate go with you to your appointments, four ears hear most everything.
Dale

jola57
03-05-2010, 05:10 PM
Eileen, do find a specialist that treats wegeners, do not settle for anything less. Even in UK with the hoity toity doctors you must expect to be treated with kindness and compassion and as to not making a fuss just look where it got you to. Make as much fuss as needed to get the doctors paying attention to your suffering.

Jack
03-05-2010, 08:08 PM
The QE Medical center at Birmingham is where I attend and they run a Vasculitis research team. Everyone is always polite and interested in my opinion, but if you are showing active symptoms the students want to run experiments on you! ;)

eileenv
03-06-2010, 01:18 AM
Thanks Dale for your reply i have advice from this forum and after a terrible night no sleep at all i ahve rung his secretary this morning and ask if he could phone me, my friend who also came with me to the appointment also gave me the same advice.
I was a nurse for 25years and i'm used to looking after other people and always give this kind of advice, but when it comes to me i don't. the trouble as well was he has made me feel like a hypocrondiac and at first was coming up with sjrogrens until he did an eye srip test and that was negative. In his letter he has said i have unclassified connective tisue disorder, to day iam coming up in more purpera marks. I don't think he likes because i was staff a few years ago he also is clinical director of the hospitsl where i attend. I will keep you up to date as to what happens
Love Eileen

Sangye
03-06-2010, 01:46 AM
Eileen, my first rheumy made me feel like a hypochondriac, too. (All the way through hemorrhaging lungs, massive blood clots, more blood clots, pneumonia, lung infiltrates, leg ulcers, bone marrow failure, pulse oxygen readings down to 76-- all objective signs that I was in trouble). Your signs/symptoms are real and serious. You may have to repeat that to yourself to undo the self-doubt he's inspired.

I'm happy to have a 3rd nurse on here, though. (Elephant and LightWarrior are the other 2) As soon as we get you to a proper doc with proper care, I imagine you'll join the team of naggers on here. Maybe I can take a day off.... :D

eileenv
03-06-2010, 04:32 AM
Sangye, thank you so much for your support, you don't know how much it means to me. I haven't heard as yet from the rhuematoligist, his secretary said it will take a time probally next week. I had leg lesions and he done a referal to dermatoligist an urgent one but she diagnosed discoid excema, but i'v seen excema and these were round big lesions now i'm doubting her diagnoses. I'm sorry to hear you have had such a rough time it sounds horendous, how are you know?. dose this site have a chat room? that would be nice. I have high nuetrophils and low lympthcytes and my white cell count was near the high end on my last bloods. What i don't understand about the ANCA is he told me in clinic that it was borderline but in his letter he it was slightly raised with the PR3 antobody of 31, when i got a copy it just had a - against the ANCA perhaps you can exsplain that to me if you don't mind. Did you have a biopsy to confirm your diagnoses? Thank you once again and that includes everyone that has been kind enough to reply .
Love Eileen

JanW
03-06-2010, 06:10 AM
With that PR3, you definitely have something going on. ANCAs don't always have to be positive for there to be a diagnosis. I have a diagnosis yet no biopsy (as of yet --my surgeon took some during the surgery yesterday.

Sangye
03-06-2010, 09:02 AM
Eileen, I feel that next week is too long to wait to talk to your doctor. My biggest concern is your "chest infection."

How much pred are you on?

If it were me, I'd go to the ER this weekend and get another chest x-ray, maybe a chest CT. If there is ANYTHING unusual on them, please don't leave without having another rheumy's input. Lung hemorrhaging often looks like "atypicaly pneumonia" on x-ray, and might not even look like a bad case of pneumonia. A CT will show the real situation. If a CT is clear, that's usually a good sign that your lungs are okay. I also suggest you bring a copy of the letter, labwork and any other medical notes you have. You might get a doctor with some brains, so you want to be prepared. :)

eileenv
03-09-2010, 03:09 AM
Hi Sangye
I'm on 7.5 of pred at the moment, i had what i thought was a chest infection ( ihad a terrible cough and i could hear my chest crackling) but i never went to the docters which i should have done this went on for about 3 weeks. Then after a week i had what i thought was a cold and again aftrt about another week i had the same again both of these went on for about 3 weeks i now realise that these could have been my sinuses. I am still waiting for the consultant to ring me at least i can bring him up to date with whats happening and if he want to change any medication he can i'm on a reducing dose of prednisolone which was15 at the begining.
thanks once again any advice is much apprciated is the pr3 of 31 high? love Eileen

JanW
03-09-2010, 03:16 AM
My PR3 is 96.7 but as my doc says most docs now don't correlate these numbers (positive/negative, how high on ANCAs and P3) with disease activity. It works for some people but not for all. He ran these tests to aid in diagnosis, but what he will follow are my symptoms and urinalysis (to monitor for kidney involvement) in determining whether disease is quieting down or not.

eileenv
03-09-2010, 03:17 AM
Hi Jack
I live in the Romford area, i wonder when i speak to the consultant will he refer me on to somewhere else, can you have a high pr3 without a pos ANCA? are they two seperate bloods tests?. I'ts funny i mentioned vasculitis to my dermatoligist when i saw her because when i take a plaster off the area straighy away comes up but she said no it's just where the veins are fragile? anyway i would be grateful for any advice.
Love Eileen

eileenv
04-08-2010, 12:03 AM
Hi Janw
Gosh your pr3 was high, how long have you been diagnosed, what are your symptoms sorry for nosey, allalong i thougt i had SLE and now may have wegeners which seems it can be very serious indeed.

JanW
04-08-2010, 12:26 AM
I was diagnosed in January, although I have probably had this at least since 2005, when I noticed shortness of breath and was misdiagnosed with asthma.

My symptoms are very mild indeed, especially compared to many on the forum, although I did have surgery to open my windpipe, and I do have a saddle nose deformity on my face. My doc found no granulomas anywhere, and the biopsy wasn't positive for WG (I mentioned the biopsy in my last post in this thread). My main problem is and ankle 'injury' that won't heal, that may or may not be related to WG, and some foot pain on the other foot (which could be WG or caused by guarding the injured ankle). I have almost no nasal inflammation at this point, and my throat is fine after the surgery (I will likely have to have it done again). I am on 3 mg weekly of mtx, just to see if its tolerable for me (initially it spiked my liver enzymes and my rheumy pulled me off it pre-surgery). I see my rheumy next week. But I feel great, really, except for my feet.

Col 23
04-09-2010, 12:47 AM
glad to hear your feeling great Jan.
cheers Col 23

Col 23
04-09-2010, 12:50 AM
How are you going eileenv
cheers Col 23

eileenv
04-09-2010, 01:27 AM
Hi janw,
Was you diagnosed with wegener's because of the saddle nose deformity? did you have a positive anca? I hope your foot gets better soon Jan, i'm waiting for my appointment with the ent to come through.

eileenv
04-12-2010, 03:46 AM
HO Col23,
I'm not doing to badly, jiont pain and fatigue are my main problems at the moment just waiting for my ent appointment to come through. I se your in Australia where abouts?. My sister is in Adelaide, how long have you been diagnosed i haven't yet had a firm diagnoses.

Col 23
04-12-2010, 02:25 PM
Hi Eileenv
Im in Perth Western Australia. Dx in Dec 2009. Still trying to get my head around it.
RA, Lungs, eyes, fatigue, head, skin but lucky no kidney involvement at this stage.
Wish you well at the ENT appointment.
Col 23

eileenv
04-14-2010, 04:28 AM
Hi Col24

I was wondering how wegeners was effecting your skin? is ju st itchy or have you got leisions why i'm asking is that my rheumy reffered me to a dermatoligist for an opinion and she diagnosed dicoid ezcema which i don't think it was.

Col 23
04-14-2010, 07:59 PM
Hi Ev
Skin very dry, soles and palms of feet and hands dry and puscular spots at times. (Always was told it was psoriasis) rash under one armpit recently that looks like heat rash with lots of spots, dont know what that one is about only came up 3 weeks ago. Doesnt hurt just looks unsightly.
cheers Col 23

maria garcia
04-22-2011, 03:30 PM
Eileen was you c anca test positive? this is a highly sign of Wegeners. If you don't mind me asking why did you get check in the first place. And are you taking any meds at the moment?

eileenv
08-28-2011, 01:32 AM
Hi Maria, Sorry i haven't answered your post as i have had been very deppressed and haven't been able to comunicate with people very well. Yes i was Anca pos at one time ana pos. I have been diagnosed with overlap connective tissue disease, dr's said i have an overlap of lupus, scelrederma and rheumatiod arthritis. The new blood test they do for ra come back really high and i have several swollen in hand and feet. They have started me on methotreate. Hope you are keeping well. I have just read about Jack, so i will pm it dosen't matter he can't reply, life is cruel.

mishb
08-28-2011, 11:08 AM
Hi Eileenv,
Welcome to the world of wonderful little packages of AI's.
A few months ago, I too was diagnosed with mixed connective tissue disease and they also thought I had lympocytic leukemia to top the little package off, but it turned out to be false readings due to inflammation. Yes Anca and ana positive.

I am also on MTX and thank my lucky stars every day that the specialists have it under control...who cares that I have to take medication every day of my life ...if it works.
There are far worse off than either of us.

Keep your chin up and know that you are not alone in this.

And.... as always

eileenv
08-29-2011, 03:12 AM
Hi Eileenv,
Welcome to the world of wonderful little packages of AI's.
A few months ago, I too was diagnosed with mixed connective tissue disease and they also thought I had lympocytic leukemia to top the little package off, but it turned out to be false readings due to inflammation. Yes Anca and ana positive.

I am also on MTX and thank my lucky stars every day that the specialists have it under control...who cares that I have to take medication every day of my life ...if it works.
There are far worse off than either of us.

Keep your chin up and know that you are not alone in this.

And.... as always
HI Michelle, the deppression i have been suffering from wasen't all down to being unwell a lot of other things have been going as well. And yes i couldn't fully agree with more that there a lot of people worse than me. I would be intrested to hear your journey and all the ups and downs that went with it. You could PM if you can.

Eileen

Geoff
08-31-2011, 07:27 AM
Hi Eileen, welcome back, its great to hear from you again. Sorry to hear of all of your multiple issues.

I hope that things are getting back on an even keel for you.

maria garcia
09-26-2011, 06:55 AM
Eileen my daughter will also be taking MTX. What have been your side effects.

jola57
09-27-2011, 01:44 AM
Hi Maria, I have been on mtx for 2 years now. After taking it I am very tired for couple of days and have a bit of a tummy upset about 2 days later. Other than that, my liver enzymes were high at the beginning of the treatment but with lowering the mtx, have settled down. Good luck to your daughter.

Sangye
09-27-2011, 04:33 AM
One thing to be aware of is the possibility of allergic reaction to mtx called pneumonitis. It's lung inflammation that mimics viral pneumonia. It's a fairly common reaction to mtx.

I got it about a month into mtx and it means I can't take it again. If she gets any type of chest congestion or a cough, don't let them convince you that it's anything but pneumonitis. On x-ray it looks exactly like "atypical/ viral" pneumonia. I was misdiagnosed for a few months and hospitalized for pneumonia twice.

eileenv
09-28-2011, 06:22 PM
Hi Maria, Sorry i have been along time repling my head all over the place at the moment. I am taking 15 mg of methrotate at present and the first wek i didn't feelto good but now ok. Yes Sangye is spot on, as my rheumato;ogist warned me that you must get medical imeadiatly if you have any chest problems. I go back to addenbrooks next month so i will see if he will increase the dose i beleive it can go to 25mg as i'm still having a lot of pain. AS your daughter got a booklet in which to record her results of her blood tests?. I always get a copy of my results, i am able to read them and know what to look out for, my esr has come down from 60 to 35 so thats good. Hope your daughter is getting on okay i will pm you.

LisaMarie
09-29-2011, 05:49 AM
Life is a bowl of cherries with pitts.....with WG we have more pitts than others....I now have a new dx of intersitial cystis...which means my bladder wall is deterorating...but Mayo wanted a sample and the lovely Doctor here failed to get one....so now I will have that proceedure repeated....my husband wants out and we are on the verge of bankruptcy...but all in all I am still alive have beautiful healthy children and finally chose to be happy...none of us wanted this horrid disease or all its side effect ...and yes at times I am still mad i don t and wont have my old life back...but i chose to look at the cherries today and not the ppitts...I hope this helps:biggrin1:

RudiK
09-30-2011, 10:35 PM
LisaMarie, I'm very sorry to hear about your problems besides the problems associated with WG. I hope and pray that you will get better, that you will overcome the other problems, and that your husband supports you as best as he can. I was told by my doctors that attitude was one of the most important parts of fighting this disease. Keep a good attitude no matter what happens and concentrate on the good parts, the cherries.
Rudi K.