[Becks]

I hope that someone can help me!

I've been on Plaquenil (200mg) for about 18 months now and have been fine until quite recently. In the last couple of months I have become incredibly anxious and nervous about all sorts of odd stuff. I used to be a really confident driver but I can barely get in the car now, my lovely fiance was driving the other day and my leg was shaking so much!

I've been having lots of panic attacks and have developed really irrational fears about odd things! :worried:

I also seem to have constant feeling of foreboding and a general sense of my life not meaning anything?

I've got the rheumy in a fortnight - should I mention this to him - but what can I do until then?

 

[greenhaggis]

Hi Becks,

I not sure I can help you, but just wanted to say I get periods in my life that I feel like you have, but I have more times that I dont. They also occurred before I started using Plaquenil!

I always tell my GP (luckily she doesnt think I'm mad lol), but she says its important to tell my Immunologist as it may be connected to disease acitivity!

Hopefully someone more well informed will come along soon!

Take care,

Lesley

 

[Becks]

Thanks Lesley,

Its' good to know I'm not alone!

 

[Katharine]

Hi Becks,

Anxiety and panic attacks can very much be part of your lupus so it definitely should be mentioned to your rheumy. A lot of people here have suffered in the same way as you are doing and there are various options to try and help you overcome those feelings.

I would doubt very much that it is caused by plaquenil as I would expect that type of side effect to be felt far earlier.

hugs :hug:
Katharine

 

[nicky00]

Hi Becks

I had very much the same experiences as you described many years ago.

This was pre lupus diagnosis and therefore pre Plaquenil for the record.

I had the panic attacks during a period of depression.
The depression eventuallly cleared but the panic attacks took a lot longer.

Not sure at all if Plaquenil can cause anxiety and or panic attacks.

All I do know is that :

I also seem to have constant feeling of foreboding and a general sense of my life not meaning anything?

The above statement is very familiar to me with regards to my own past experiences.

The good news is that you recognise that things are not right for you and are willing to try and find a solution.

Panic attacks are irrational so the irrationality your feeling and anxiety are symptoms and are the very hallmarks of panic attacks.

You are not crazy.....the very roots of a panic attack are I have understood to be a primal reaction to danger. It matters not if we are in danger but sometimes our alarm bells go of (ie panic attack) when its not needed. Its a kind of faulty reaction to fear.
Mostly the fear is invisable.

The most important thing is to do what you are doing which is to be open and ask questions with your Rhumie and your GP.

There are medications which can help turn off the panic attacks or dampen them down. There are also techiques to help you when your are experiencing one at the time.
There is a good breathing technique which brings on positive physical changes and lessen the panic.

It may be good to give your attacks a score , eg 10 is the high end of panic and 5 midway and 1 low etc.
Then to make a note as the number lowers during the attack.
This can believe it or not give us some sense that there is a ceiling of panic and that it does eventually reduce and this can give us a feeling of control.

I hope I havn't given you too much information.

Hope you get some relief soon I do know how horrible it can be.

Im clear of them now and also the depression.

I have often wondered if the episode was lupus related.

Nicky

 

[Bullwinkle]

I suffered from those to alot... before this lupus thing .. and thus long before plaquenil was introduced to my body.
I find that the pink pills help emmensely. Paxil (paroxetine 20mg.) as it is known in the pharmacudical circles.
You may need something like it to help you thru those anxious times. Check with your Dr.

 

[Becks]

Thansk everyone who replied. I feel better knowing I'm not alone! I'm counting the days until the 14th - will update you all after then. xx

 

[KarolH]

Becks,

I feel for you and your not alone. I have suffered panic and anxiety attacks that started back in 1993 for no good reason. I am a confident person without fear of much so I never thought this would happen to me.

My first attack was while I was driving my car. I landed in the Emergency Room and thought I was having a heart attack.......nope, it was anxiety.

It has been 15 years that I have been dealing with this and still really do not know what triggered it or why it started.

There are meds out there to help you and I am sure once you talk with your doctor and get the right cocktail mix of drugs you will feel better.

When it started with me I had no idea how to handle it....now I am a pro.

Let us know how things go on the 14th. Good luck and hugs to you.:wink2:

 

[zymae]

I have been on plaquenil since august 2007 and I resently began feeling like that as well. I just thought I was losing my mind. Thanks for letting me know I am not alone!!

 

[Becks]

Update!

I saw the rheumy yesterday and he's taken me off Plaquenil; he doesn't think it's the reason but I don't feel it's helping me anyway so there's no point continuing. At the moment I'm taking no medication; just pain relief if I need it.

He's also referring me to a psycharist (sp?) so I can talk through how I feel. I think that I do need to see someone as I can't carry on as am I; but also at the same time I feel pretty miserable that it's come to this. :worried:

 

[greenhaggis]

Hi Becks,

What are they lupus disease modifying drug is the Rhuemi going to give you know.

Anti-inflammatories control pain and inflammation, but I'm puzzled and concerned that youve not been given an alternative to Plaq for the disease!

Perhaps they explained the reason to you why nor more meds for the disease - if so would be interested to know!

Take care,

Lesley

 

[Becks]

Hi Lesley,

I am slightly puzzled too - I should have pushed him yesterday to tell me why he wasn't giving me anything but to be honest I wasn't really in the right frame of mind!

I always feel slightly rushed when I go and there's a slight air of not being taken seriously. Any idea how I can change rheumys?

 

[greenhaggis]

Becks, phone his secretary and ask them the question over meds!

Tell them youve got home and cant remember what he said regarding replacement treatment for the lupus as now you going to be untreated apart from the NSAIDS!

Lesley

 

[Lily]

(((((((((((((Becks)))))))))))))) I too am wondering what you are supposed to do about disease control - I think you should ring back too and clarify this.

I'm wondering if the 200mg was too low a dose for you and that's why you have not felt it's improved things at all? 400mg is a normal dosage for us but perhaps there was a reason you couldn't take that dose?

Good luck with the psych ((((((((Becks)))))))))))) we all have so much to deal with and whether it be from this or from the fact that lupus is directly having an affect on your chemical balance causing these isssues for you I am sure the psych will help. Let us know how you get along. Don't feel defeated about having to see one, so many of us have/had similar issues, it's quite common and the right meds and some discussion will help you a great deal. I know they did for me.

love
Lily

 

[Becks]

Thanks for your kind words Lily. I have started a wine appreciation course with my OH and this saturday we're supposed to be going to Brighton to visit the winery where our tutor works. Unfortunately E can't make so I have to go on my own and I'm thinking about cancelling as I can't face the hour drive by myself!

But I digress, I just rang the secretary and the tapes haven't been typed yet so they can't tell me anything until next week. I'll let you know when I know.

 

[Katharine]

Hello again Becks,

I would just like to second the others in concern over the lack of disease modifying drugs.

Many have had plaquenil stopped as they thought it wasn't doing any good only to discover that it actually was. Also, I would be wondering if your dose shouldn't have been higher too. 200mg is very low unless you are terribly light in weight. Maybe you needed a higher dose and/or an additional disease modifying drug rather than taking you off all medication.

I am still not at all convinced that plaquenil was causing any kind of anxiety attack as that really is a well recognised part of the disease for some people.

sorry, got to dash,
Katharine

 

[Becks]

Katharine, I too am wondering about the dosage. I am not particularly light in weight - 10 stone and 5ft 3.

My rheumy didn't seem to know about any connection between lupus & how I feel (am started to wonder if he's a real doctor! ) not sure where to go from here.

 

[greenhaggis]

Becks,

At the weight you are 400mg would have been more appropriate!

I'm 8st3 and on 400mg, was started on 200mg and after 2 months went up to 400mg as no effect - my Immunologist even mentioned some people (although on the rare side) do go has high as 600mg!

Can you go to your doctor and voice your concerns and get them to kick your Rhuemi back in touch or get you a new specialist!

Take care,

Lesley

 

[Katharine]

Hmmm sounds most suspect indeed!

Nope that's a "normal" rather than feather weight - not that I remember stone and kilos much but I know I'm 9 something and I'm on 400mg.

The usual dose would usually be around 3mg per pound, whatever that would come out at though it is always rounded off at 200, 300 or 400. Any more than that is very rarely given.

I don't know if you have ever considered trying to see someone else? Get a second opinion from a rheumy known to have lupus experience? I mean, I don't know your history with this doc and maybe you have a great relationship and all but it sounds as if you're being sort of...well..."half" looked after rather than fully.

The psych thing is a very good point though and that's a good place to start here.

I don't know how bad the rest of your symptoms were but I would certainly keep a close eye out for any signs of a flare in the coming months. Don't just ignore it and think that you have run out of options. You really haven't, there are plenty of things out there to help more!

Katharine

 

[Becks]

Spoken to hospital

I've just spoken to the hospital and my notes say:

"she has noticed that plaquenil can bring on a anxiety state and we have agreed to stop it forewith. Patient to take ibuprofen as necessary"

So defintiely no arrangments for other medications. My next appointment is 17th February. I guess I just keep an eye on things and try and get an earlier appointment depending on how I am.

Out of interest I know that plaquenil can take months to work so how long does it take to get out of the system?