[forever hopeful]

so yesterday after work, i had some sharp pain in my side. i couldn't tell if it was an ovarian cyst or a kidney stone. it turns out it was a cyst. while i was at my gp, i told him about the yo-yoing that i've been going through with the specialists. he told me that they is clearing something wrong and he said with out saying that it's pointing toward lupus and ra. however, he told me that since the drugs they use to treat lupus are chemo drugs, i'd probably be more sick from the medication than how sick that i'm currently. so he said its pretty much a waiting game and that the doctors don't want me to be put on the medication until its absolutely necessary. so it felt good to know that something abnormal is going on and i'm not crazy. but it's a little disappointing that i have the pre-disease or mild disease that they can't justify treating because we've had no advancement in the treatment in over 50 years!

 

[Maia]

Hard to take a long vacation with a symptom like that. You must be re-assured that your GP believes your symptoms and believes it is
likely something autoimmune. However, his statement that all the drugs
for lupus or RA are chemo drugs that would make you more sick than
you are now is quite wrong. The first choice of drug for non-organ involving lupus is Plaquenil which is very safe drug with very minimal side effects.

It is always disconcerting to hear that statement about no new drugs approved for lupus in the last 50 years, but also realize that there are many new drugs used for lupus now compared to 50 years ago and which can be quite effective (including Plaquenil, mepacrine/quinacrine, methotrexate, Imuran, Cellcept and others). They have just not gone through the FDA or other agency approval process to get them specifically approved for lupus.

 

[LolaLola]

Forever Hopeful,
Even if you did require Chemo drugs in addition to more basic treatments, it is really not the case that you will be sicker.
To be absolutely honest, when I started them I felt a bit hot, sick and tired for a day or so after each weeks dose. That lasted three months at most. If you are very nauseated some of these meds can be given by self injection.
Obviously there is a risk of being more susceptible to infection but you soon learn to handle that, and it is not a huge issue for me. I get very cross when I hear of Patients being warned that Chemo drugs will poison them, especially as it is usually possible to start very low dose and increase if necessary.
If you do need them at any time it is not something to dread.
x Lola

 

[Clare.T]

I am sorry about the cyst What can be done about that? I hope you can get some relief from the pain.

however, he told me that since the drugs they use to treat lupus are chemo drugs, i'd probably be more sick from the medication than how sick that i'm currently. so he said its pretty much a waiting game and that the doctors don't want me to be put on the medication until its absolutely necessary. so it felt good to know that something abnormal is going on and i'm not crazy. but it's a little disappointing that i have the pre-disease or mild disease that they can't justify treating because we've had no advancement in the treatment in over 50 years!

This is damaging disinformation ! He is clearly very ignorant. Using the term 'chemo' is simply not helpful at all, with all its cancer associations. They are more usefully referred to as "disease modifying".
We take them in lesser doses than used for transplants, sometimes minimal doses as part of a cocktail. Many of us take our medicines with no unacceptable side effects whatsoever, only benefits
I also take great exception to his comment that lupus isn't treated unless absolutely necessary which I suppose means life threatening. Absolute rubbish ! The whole thrust of treatment these days is to improve quality of life however 'mild' the lupus is and to prevent the spread of disease as much as possible.
However good a doctor this chap might be, he is woefully ignorant about lupus.
So, don't believe him and don't let him put you off.



Clare

 

[Lily]

Hi forever,

I'm sorry you have the pain of an ovarian cyst on top of your other problems :hug: You do have a diagnosis of Endometriosis and if the cyst is of that type (commonly referred to as a chocolate cyst) then it would be best to see your Gyn about it, they can rupture and then tend to spread the Endo further. A scan should help determine if its that type or a normal garden variety type of cyst.

I'm with Maia on this one as far as your other issues go. It seems at least your GP believes your symptoms and realises there is some kind of disease process going on. It's a shame though that he is misinformed or more likely lacks knowledge in the treatment of connective tissue diseases.

Plaquenil is a very safe drug which is usually the first one that anyone with any of the connective tissue diseases is put on. It helps control things like rashes, arthralgia, myalgia, mouth ulcers and goes some way to treating the fatigue. It's like an insurance policy against worsening disease too because of the way it can help stop the antibodies from multiplying and in some cases make them disappear whilst the patient is taking it. It's NOT a form of chemo - it's classed as a DMARD........disease modifying anti-rheumatic drug. It is a first line defence for Sjogrens too and all some people need. They did diagnose you with Sjogren's and I can't understand why no-one prescribed Plaquenil for you really?

Hope your cyst is the 'normal' type and that you are pain free from it soon.

love
Lily

love
Lily

 

[forever hopeful]

yeah welcome to the america's doctors way of thinking! i think they are taught wrong in school. it's very frustrating to know that there's a drug out there that might give me relief but that i can't take it. i see the gyno on the seventeenth, so i'm hoping that he can help me out with the cysts. i dunno what to do, none of the doctors i've seen here are much help. they all admit something is going on but they think its not severe enough to treat. so i'm still in the waiting game...oh what fun!