[helen o halloran]

hi
this is my first time logging on.have stage four lupus nephritis.was diagnosed nearly four years ago i had two major flares took me almost a year to get over last one have only been over it about 5 months and starting to feel bit un well again.my red and white cells very low. and had very heavy period bleeding around xmas went on for weeks doctors dont seem to know why and dont seem to be trying to find out.i have taken to looking for anwsers on internet.doctors sent me for d and c which was normal. i have recently got married and want to start a family but not sure if my body could cope with pregnancy.
i live in ireland in galway but wouldnt mind traveling to see a good specialist if anyone there knows one.being seen by public healthcare sometimes i wonder if i am getting good treatment.i live in fear of being put on high dose steriods again as side effects of them for me feel worse than lupus sometimes.i take a low 5mg now and immurane 100mg.
any help would be appreciated
thanks
helen

 

[Joandublin]

Hi Helen

Welcome to the Forum Its nice to meet another fellow Irish woman I moved your post to start a Thread of your own in this Forum because I didnt want you getting 'lost' in someone else's thread.

Im sorry to hear you have had such a hard time with your Lupus :hugbetter: Im glad you found this site though as it will be of tremendous help and support to you. All the members here are Lupus patients or those seeking a diagnosis and there is a vast amount of experience here.

Im from Dublin myself and attend Beaumont Hospital under Consultant Rheumatologist Grainne Kearns. She is a pretty good doctor (although very busy!). Im in the public health care system as well. At the moment I am hoping to remain seeing one of her registrars regularly - a guy called Peter Brown (Cork man!). I did see a woman registrar before that called Lorraine O'Neill who was great but unfortunately has now left. Before she left she recommended me to Peter Brown and I have had one consultation with him so far. I have another appointment due next week so I will let you know how it goes.

My first consultation was very good with him. I liked him and he is very easy to talk to. He listens very well to what you are telling him.

They also have a Lupus Clinic which sits every couple of weeks. Its great to have that because at least you know all the people attending that particular clinic are being treated for Lupus and not the other broad range of rheumatic diseases.

I know Galway is a bit of a travel from Dublin but if you are unhappy with your local treatment it might be worth considering. What concerns you about your current treatment? Perhaps we might be able to advise and guide you about how to go about getting the right treatment in your own area?

Anyway, welcome again and I hope to hear back from you soon

Take care for now
Joan:rose:

 

[Katharine]

Hi Helen and welcome

I'm Irish too but can't help at all with the doc as I haven't lived there since I was eighteen.

My Mum's in the same boat as you with regards to a doc and still hasn't found anyone that she sees more than once. She could really do with someone now but I don't think I'll convince her to follow Joan's advice, she has become so disenchanted that she just doesn't believe in docs at all any more. I wish she would as I know that she could be helped a lot more but she has a certain stubborn streak... (wonder if I can blame mine on genetics? :lol

bye for now,
Katharine

 

[helen o halloran]

need good doctor

hi girls
thanks for the quick response.the problem is i dont see a rymatoligist doctor only renal.had one visit couple of years ago but they said to let the renal doctors look after me.but every time i read lupus chat rooms or anything every one else seems to have a rymatoligist.sometimes its hard to querie the doctors when you are not qualified and dont know whats right.and i never really know if my diaease is active or not dont really understand blood results.
thanks
helen

 

[Joandublin]

Hi Helen

I can understand how the Renal Doctor would be coordinating your care if you have Stage Four Nephritis but Im still quite shocked that you arent under the formal care of a Rheumatologist. What kind of relationship do you have with your GP? Can you talk to him/her about getting a new referral and establishing a relationship? There is absolute justification for this as the Rheumatologist is the one who specialises in many of the autoimmune diseases including Lupus. There are some people here who have an Immunologist as their main doctor but its mainly the Rheumy.

Many of us here see a range of specialists as Lupus can manifest itself in many different ways. I myself have seen a Rheumatologist, Neurologist, Gastrologist, Opthamologist, Endocronologist, Dermatologist as well as Physio Therapist.

Also from the query you have about starting a family it seems that you need a referral to a high risk ObGyn for assessment. This is the specialist who can best advise and guide you and its something you could talk to your GP about.

Many of us didnt understand blood results in the early days but being here on the site and asking questions can help enormously. I wont pretend to understand half of the results I get but I do have a sense of what ones are important and what to look out for.

Its never too late to start being pro-active about your health. Its your body Helen and you have a right to ask questions and get answers. We can certainly help 'stiffen your spine' and make 2009 the year when you get some control over your healthcare. Its easy to let things slide and just take as gospel something that was said several years ago. Things move on as well as your health and its probably time to rein them in again

By the way you didnt say whether you were on Plaquenil which is a base line drug used to treat Lupus. If you are not on it then it is something you really need to take up with a Rheumatologist.

Stay in touch and ask any questions you like. There will always be someone along to reply. Its quite a busy site here!

Luv n stuff
Joan:rose:

 

[helen o halloran]

doctors

hi
thanks for the advice, no i am not on plaquenil.only prednosoline and immurne.
had a cycle for six months of cyclophosimide.they sent me to see high risk gynie she said go ahead and get pregnant,but my renal doctor says he not in total agreement with this hard to know who to listen to.think i should be more forceful in seeing a rheumy.but then they say the renal will look after me so i dont know what to say to that.dont have good gp,had a good one when first diagnosed but was ten miles away and had to move doctors cos too sick to keep driving so far.now i am at a very busy medical centre and seem to get different doctors who dont really know my history.anyway most gps usually are scared to do anything with me once again leave it for the renal team,but only see them every month.
thanks again for your help

 

[ElephantEyes]

Rheumatologist in Galway

Hi Helen

I'm based in the west of Ireland as well and my rheumatologist is Carmel Silke. She works in the Galway Clinic and I find her approachable and pro-active. I've only recently been referred onto her and I find that she is interested in putting a team of specialists together to manage my lupus (much like Joan referred to). This was not the approach that my previous rheumatologist took, so I'm actually really enjoying being listened to now.

Hope this helps

Nellie

 

[brunches]

Lupas Doctor

Hi all
This is my first time to log on to anything like this so bear with me. I am enquiring if anyone could direct me to a good lupas specialist in Ireland. My Dad has been diagnosed with lupas(as well as underactive thyroid and coeliac) last year and i just feel his doctor is far too laid back about the whole thing, since his diagnosis in october Dads Skin has got very bad with a rash on his face and head, also his joints have become very sore from time to time, as well as fatigue. I know these are all related symptoms but all the doctor has done to date is give Dad a cream for the rash and told him wear suncream.(which may i add the cream iritates the rash and I cant see it making the rash any better).I would be greatful of any advice as athough my Dad hasnt said anything I know he is very concious of the rash and just getting a bit down in general with the affects of the lupas, as he would be a very active and outgoing man and i hate seeing him like this , so if there is a specialist out there i would be delighted to know where the clinic is.

Thanks in advance
Fran.

 

[ElephantEyes]

Hi Fran -

I'm sorry to hear about your Dad. Do you know what time of lupus he has? Also, what part of Ireland are you in? I'm based in Mayo and my care is coordinated by a rheumatologist in Mayo. I also see a dermatologist in Galway for my skin problems.

Is your Dad under the care of a rhuematologist? Is he on any pills at all? Most doctors put people with lupus on plaquenil. This is an anti-malarial and can help with joint pains, skin rashes and other lupus symptoms. People are often left on plaquenil for life as it is a disease modifying drug with few side effects for most people.

My first rhuematologist did not put me on plaquenil and I suffered terribly with pain until a different doctor put me on it after I had a severe flare. Since then, I have been relatively well - plaquenil doesn't always work for all people, but it really has made a huge difference to my quality of life.

Anyway, if you are based in the west of Ireland I'll pass you on the names of my doctors. I've also lived in Limerick for a while so I've seen some doctors there too.

Hope this helps -

Nellie

 

[Joandublin]

Hi Fran

Im Joan and I live in Dublin and see a Rheumatologist in Beaumont Hospital. Her name is Grainne Kearns. There is also another Rheumatologist there called Paul O'Connell who I hear is good also. Has your Dad been diagnosed with Discoid Lupus or Systemic Lupus do you know? What specialist is he under? Dermatology or Rheumatology?

If you give us a little bit more info we will try and help you. In the meantime here is a link to Rheumatology services in Ireland with the names of the various specialists.

http://www.irhps.ie/wb/pages/mapping-rheumatology.php

Its a good idea to see if they are versed in Lupus as not all rheumatologists are. Beaumont Hospital, for example, has a Lupus Clinic now which specialises in the treatment of the disease. There is also a specialist centre in Our Ladys Hospice attached to referrals only from St. Vincents Hospital, Elm Park, Dublin. Here is a link to it:

http://www.olh.ie/Departments/RheumatologyRehabilitationUnit/

Hope this helps
Joan:rose:

 

[Clare.T]

Welcome to the forum Fran
It is wonderful that you are helping your dad out this way. It sounds as if he is not being adequately treated, in fact not being treated at all, poor fellow. He is so lucky to have an advocate.

It is so important to start treatment with disease modifying medicines not only to ease symptoms and improve quality of life as well as to reduce possible disease progression.
Best wishes to you both. It often takes determination to access the best treatment possible. I am sure you will get plenty of useful information and support here. Please let us know how you get on.

Bye for now

Clare

 

[brunches]

Hi all

Thank you all so much for your help and support.To be honest im not 100% sure of the type but I shall find it out and get back to you with the details. What I do know is that his initial diagnosis(which i may add was given on our home answering machine by means of a message from the hospital)stated that it was Skin Lupas?. But as i said his joints are sore at various times so i feel it may be more than this. I dont want to cause any undue worry to him but i would just love to bring him to a clinic and a full examination/tests done and insure he gets the correct treatment.

Joan thank you for the link i will look into it now, and Nellie i would very much appreciate if you could forward me on the names of the doctors as Iam just 2hrs from Galway.

Again thanks a million for all of your help, I will find out his medication and whether he has seen a dermatologist or rhuematologist and get back on to you and see if ye can educate me any more.

Fran

 

[Joandublin]

Hi again Fran

Just a couple of things before I head into the shower to face the day........ It sounds very much like he was under the care of a dermatologist and if that turns out to be the case it would be advisable for him to go back to his GP and let him know about these other symptoms. His GP can run a few blood tests directly from the surgery which might help to start putting the picture together. One of these blood tests would be an Anti Nuclear Factor (unless he already has had this done?). If this is positive in a high enough amount it would be enough (along with his symptoms) to get a referral to a Rheumatologist and its the latter who would do the more specialised testing.

Some of this will depend on whether he has private or public health care. If the latter, the choices will be a bit more limited and often waiting times are longer but nevertheless the sooner the process is started the better.

In the meantime maybe encourage him to keep a diary of his symptoms so that he will have a good record for when he does get his appointment. Also get some pictures of his rashes as well especially when they are flaring up. Rashes have a terrible habit of 'disappearing' when it comes to hospital appointments

I know you dont want to worry him but its really more about concern that he gets the best possible treatment. Thats the way I would approach it if it were my Dad.

Best of luck and come back when you need more information or advice.
Take care
Joan:rose:

 

[Joandublin]

Me again

I should have said that his new symptoms combined with the fact that he has already been diagnosed with Lupus of the skin should be enough for his GP to refer him to a Rheumatologist anyway. Its more likely that he would develop systemic Lupus than someone who wasnt already diagnosed with skin Lupus.

Keep on pushing....
Joan:rose:

 

[ElephantEyes]

Hi Fran -

My rheumatologist is Carmel Silke. I see her in Castlebar, but I think she practises in Galway Clinic too. I really like her - I've only been going to her since January, but I find her a huge improvement on my previous rhuemy (who I am not going to mention here - send me a private message if you want his name).

My dermatologist is Noreen Cowley and she practises in Galway Clinic. I saw her for the first time yesterday and I liked her. She listened to me and took me seriously and took appropriate measures. I haven't needed to go to dermatologist for about 6 years as I haven't had much skin involvement in the past few years (until now). My other dermatologist was in Limerick.

I also see an ophthalmologist in Galway (as a precaution with plaquenil) - Fiona Harney. She is on St. Mary's Road in Galway. I also recommend her.

If you google Galway Clinic there is a Consultant directory in it and both Dr. Silke and Dr. Cowley are listed in it.

By the way, I was initially (mis)diagnosed with discoid (skin) lupus. Turns out I had systemic lupus with organ involvement. But it isn't the end of my world - I'm fine most of the time.

Hope this helps -

Nellie

 

[glanmire cork]

would like to know if any one has anemia,suffer from heart burn, general pains in aches ,

 

[ElephantEyes]

Hi Susan - are you looking for a rhuematolgist who specialises in these areas?

 

[spook]

Hi Glanmore cork. I was diagnosed with skin lupus but I get alot of aches and pains almost flu like. I don't get the full on malar rash but rash appears on forehead, hair line, hands, elbows and around knees. I have mentioned sle to doctor but he dismisses it with skin and sle are completely different. Have not been refered to rhuemy and bloods always clear.