TheLupusSite.com banner

1 - 10 of 10 Posts

·
Registered
Joined
·
11 Posts
Discussion Starter #1




Hello everyone :)

I have just recently been diagnosed with Lupus (SLE), or at least I think I have been...as the doctor handed me a leaflet on Lupus (SLE), and has prescribed the medication Palquenil.

I am pleased that after 2 years of medical mystries, and 6 months of continual pain, and chronic fatigue, someone has finally decided on a course of tx (treatment). Unfortunately I cannot begin the Paquenil until I have attended an educational class....and the nurses cannot give me a date as to when this will happen....am I off base here when I say I think this is just a little, hummm how shall I say this without appearing too rude.....NUTS!

What, effectly, they are saying is; here is a medication you can take that will help you feel better, that will help with the fatigue and joint inflimation, but you can't take it until you attend an educational class on the medication. However, we don't know when we will be able to give you an appointment to attend this class, and until such time, you cannot take the medication that will help you feel better..... Now, I don't mean to offend here.....but this seems just a little NUTS to me....and my patience is wearing extreamly thin these days! Is there anyone who can help me out, and give me some advice..... Do I have to take this class, or can I begin the medication without it? If not, is there anything I can do now, that will give me some relief, until they are able to give me an appointment to attend the educational class!

Thank you so much for allwoing me to VENT..... I'm just a little MAD :mad:, !!!

Kindes Regards,
AndreaK.
 

·
Registered
Joined
·
81 Posts
Hi Andreak

AndreaK;520347 said:




Hello everyone :)

I have just recently been diagnosed with Lupus (SLE), or at least I think I have been...as the doctor handed me a leaflet on Lupus (SLE), and has prescribed the medication Palquenil.

I am pleased that after 2 years of medical mystries, and 6 months of continual pain, and chronic fatigue, someone has finally decided on a course of tx (treatment). Unfortunately I cannot begin the Paquenil until I have attended an educational class....and the nurses cannot give me a date as to when this will happen....am I off base here when I say I think this is just a little, hummm how shall I say this without appearing too rude.....NUTS!

What, effectly, they are saying is; here is a medication you can take that will help you feel better, that will help with the fatigue and joint inflimation, but you can't take it until you attend an educational class on the medication. However, we don't know when we will be able to give you an appointment to attend this class, and until such time, you cannot take the medication that will help you feel better..... Now, I don't mean to offend here.....but this seems just a little NUTS to me....and my patience is wearing extreamly thin these days! Is there anyone who can help me out, and give me some advice..... Do I have to take this class, or can I begin the medication without it? If not, is there anything I can do now, that will give me some relief, until they are able to give me an appointment to attend the educational class!

Thank you so much for allwoing me to VENT..... I'm just a little MAD :mad:, !!!

Kindes Regards,
AndreaK.
Hi Andreak
Welcome to the site,i am newly diagnosed with sle and it was annoying that i had to wait for 3 weeks before i was given the tablets,my doctor had recieved the same letter as i had from the hospital,he said the rhuemy would know what strenghth to put me on and to read the leaflets he gave me in the meantime.
Maybe they want you to learn a lot more about the disease before starting medication.
When i did see the rhuemy he was annoyed that my doctor had not started me on the tablets, never mind it is water under the bridge now.
I would have liked someone to send me to a class to help me to understand better.
I must admit this site is great for getting help and advice so rant all you want,
someone will always get back to you.
Hugs Sandy;)
 

·
Registered
Joined
·
7,800 Posts
Hi Andrea and welcome :)

I'm sorry to hear what brings you here but glad that you finally have an answer to your troubles.

I'm inclined to agree on that class thing - never heard of that before, very odd.

You will find that you will go through a whole range of emotions over the next few months - including frustration. Don't hesitate to come here and ask questions, look for support etc. There are loads of great people here and their help can be invaluable when thigns feel rough.

It is true that plaquenil should help you enormously and is an excellent drug with few or no side effects except for the very few who are intolerant. Usually, at the beginning if treatment it is recommended to get an eye test done. This is a precautionary measure and can be done at an optician's.
Some people experience some nausea at the beginning of treatment which usually goes away after a while or if the dose is temporarily reduced to let the body adjust.

You need to be aware that plaquenil is a baseline drug which will hopefully reduce joint pain and fatigue but will also reduce the frequency and severity of flares. However, it is slow in starting to act (that's why it would be great to start as soon as possible). Generally it takes about 3-6 months to kick in, sometimes a year. In the meantime, you shoudn't hesitate to ask for extra help from your GP or rheumy in the form of NSAIDs or others which can help you get over things until the plaquenil helps.

As to whether you can start, can you not ask your GP for advice on this and, if you don't have one, get a prescription from him?

Sorry, I can't help much more, really never heard of classes for plaquenil before. Of course, that might just be me :wink2: Maybe they are information classes on SLE - that would be good...strange!

bye for now,
Katharine
 

·
Registered
Joined
·
4,968 Posts
Hi Andrea,

First of all welcome to a great place for support and valuable information.

Second, your right.....that is NUTS to have to wait on a class before you can start meds. I have never heard of such a thing but maybe it is common in the UK. Certainly it is not here in the US.

I think your Rheumy or GP should educate you and off you go to start taking the meds immediately. Wait for a class and we don't know when we can get you in?????:mad::mad::mad:

That is obserd!

I am new to Lupus so can not offer much advice but I do know that before I started Plaquenil they recommended a eye test for a baseline with my optometrist.

Let us know how you get along and again, welcome to the board.:wink2::wink2::wink2:
 

·
Registered
Joined
·
2,404 Posts
Plaquenil is very safe, I have never heard of anyone having to attend a class!!!!
I can understand you wanting some help sooner rather than later.
x Lola
 

·
Registered
Joined
·
16 Posts
Hi Andrea

My daughter was on Plaquenil for 2 years before given the diagnosis of Lupus SLE (seems to me Dr's are a bit reluctant to give a firm diagnosis) and has now been on it for 3 years and is only 20 and has had no problems with it but was advised to have her eyes tested regularly whether that was because of Lupus or the medication I cant really say.

She never had to attend a course/lecture but I did feel that we were given no information on her medication or Lupus SLE but had to find it out about it all by ourselves.

I wish you luck and hope you feel better soon

Regards
Martine
xxxx
 

·
Registered
Joined
·
14,661 Posts
Welcome to the forum Andrea :)

I am a Geordie in exile in soppy miserable Surrey wishing everyday I was back in the North East.

.
Sorry about your apparent diagnosis. I have never heard of a diagnosis being presented in such a fashion. I am wondering what sort of doctor this is. There's a Lupus multidisciplinary centre in Newcastle
I have never heard of education courses for taking Plaquenil & on the Clare.T Crazy Scale it ranks a 4 with 5 being the highest. It is certainly not the usual thing in the UK or anywhere.
The only thing sometimes requested is an eye exam to get a baseline and to make sure there are no preexisting conditions that might contraindicate taking Plaquenil.

Nor have I ever heard of education courses about lupus or shall we say autoimmune connective tissue disease since there are several. There has to be a misunderstanding or at least a rational explanation. Maybe they want you in a study. It is as you say very unsatisfactory.
I'd write a letter if calling isn't feasible asking for details and an explanation.

Meanwhile you can start educating yourself about lupus with the aim of finding out why you were diagnosed. Get test results - you may have to persist but you are entitled to them. Information is empowering and makes for better dialogue with doctors and feeling more in control.
You can get lots of help here from well informed experienced patients and it's comforting knowing you aren't the only one

You might like to visit the chat room sometime. I'll keep an eye out for you ! :)

Bye for now
Clare
 

·
Registered
Joined
·
11 Posts
Discussion Starter #9
:)

Hi Everyone,

Thank you so much for the warm welcome and all the wonderful support and advice.

I have tested positive for the ANA on 2 separate occasions, and have also tested positive for the Smooth Muscle antibody as well, I also have the Lupus anticoagulant, which is a real pain in the butt, because it encourages my blood to clot, and I have already thrown two PE (pulmonary embolisms) so now I am on Warfrine indefinately, on top of all of this, they also discovered that I have a hole in my heart...... perfect! When it rains it pours! I have four books on lupus, Lupus Q&A, The Lupus Book, Coping with Lupus, and New Hope for People with Lupus....haven't read that one yet!

I have spoken to the nurse specialist at my Rheumatologists office and apparently they do actually have everyone of their patients go through an educational class for the Plaquenil before they can begin the medication....I have suggested that perhaps to expidite things they might consider having severl individuals in a class at once, rather then on a 1-1 basais...to save time...the nurse thought that was a brillient idea...go figure...duh! I'm the patient, and I'm having to fight for every little bit of care that I get, and I am getting tired and weary....I am seeing 9 different doctors......I have taken to carrying a notebook with all the blood tests I have had, all the results I have been given, and which doctor is taking care of which part of my body, which seems to be falling apart! And then if I miss an appointment I am summoned by my GP for a lecture as to the importance of keeping my appointments :tuttut: ...Good grief! Welcome to my world! If I was not so annoyed, I'd see the humor and abserdity of it all! I swear I'm gonna write a book at the end of all this! :rolleyes:

Once again thank you to everyone...I think I will survive this with your help and support! Cheers!

Warmest Regards,
AndreaK 8)
 

·
Registered
Joined
·
276 Posts
Hi Andrea:)

Nothing to add really but just wanted to welcome you to a great site. Hope you're doing well at the moment.

Hope the appointment comes through real soon for you so that you can start your meds and hopefully start feeling a little better.:)

Take care
Mrs M
 
1 - 10 of 10 Posts
Top