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Discussion Starter · #1 ·
Hey guys,

Last week when i went to collect my prescription of plaq from the GP i realised the dosage as reduced. I collected my meds from the pharmacy and the next morning rang to speak to my GP.

The GP said that this is what the consultant had said in his letter back in August - that in december i was to go to down to 200mg x1 (was on 200mg x2 before. Totally confused now as im no where near feeling any better, my fatigue levels are sky high, i have low energy, ankles, knees and shoulders are aching more than before - so dont get it at all :mad: how can they do this without doing a review with me first?

Rang the consultants secretary and have managed to gt an app for tuesday with a DR (not my consultant but im quite desperate now) used to think that the plaq wasnt working but just 7days of lower dose has made me realise that it mustv been doing something!


A few of you have mentioned that i should be able to get something else along with the plaq for all my aches n pains, would it be okay to mention this to the doctor i see on tuesday?

And another little moan - I have a friend who is a physio and she has been telling me that they have got a 16yr old patient who has lupus. Today i went to my yoga class and she said that she has seen this patient of hers and that she is 'handling it all fantastically' now this made me feel bad - am i not handling it well? granted that am always tired n i have aches n pain which dont allow me to do much but im still working full time, doing some chores in the house, and doing my yoga. im trying to lead a somewhat 'normal' life. why did i feel bad when she made that coment? am i being too sensitive?

Thanks for listening to moan on and on yet again,

love always
rachna xxx
 

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I had a good friend of mine make a similar comment to me about her father's girlfriend having lupus and handling it so well. This occurred when I was struggling to continue working and it definitely smarted at the time. I did not ask her in response "and I am not handling it well then?" but that's certainly the thought that went through my head. I felt hurt also - one of those that you feel in your gut as a near physical reaction.

I wasn't sure if it was an overreaction on my part either, so I didn't say a thing to her ever about it and it was never brought up again. I think if it comes up again I would recommend a direct approach and say that you think you are also handling it as well as can be expected and list off the things you continue to do despite your lupus symptoms.

I would also be upset about that kind of drop in Plaquenil, without the doctor discussing it with you first. If you are of short stature and small boned, then the lowest recommended dose for Plaquenil is 300mg. If your ideal body weight is 135 pounds or more than 400mg is the recommended dose - especially if symptoms like yours are still occurring.

I would ask about any additional medication to help with your symptoms at the appointment. It shouldn't hurt to ask!
 

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Hi Rachna,

You are right, you should have been examined prior to having your Plaquenil level reduced. How would any doctor know in August what you were going to feel like in December? I am glad you took action and got another appointment.

Try to ignore the comment about the 16 year old. Everyone's symptoms are different. It is also possible that the kid is on something for pain management.

Good luck on Tuesday,
Lazylegs
 

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Hi Rachna,

I would most certainly be as upset as you about that plaquenil reduction. I believe you haven't been on it all that long anyway have you, so I don't think it has even had a chance to kick in fully.

At the very beginning my rheumy mentionned doing the same but the reduction was to be made after an evaluation by her and it never happened as I was not doing well at all at the time.

You have done well in getting an appointment and acting on this. I hope the doc is OK as you don't know him and, especially, that he listens.

As for comments hurting, yes, people do say them a lot. Sometimes I think we're over sensitive and maybe the person is just saying that it must be hard to have such a serious disease so young and that they are amazed at how well someone so young is coping. Sometimes, as the others said, everyone's disease is different but people do tend to compare. Would we have not done the same before actually understanding lupus and its so many complexities?

I have my kids step mum constantly telling them that lupus is a totally non-serious disease and that it is "nothing" over and over again. It turns out she has a colleague who also has lupus (I don't know what kind) and who is hardly affected at all (he manages to hold down a full time job and has no trouble with sun or outdoor activities).

In her case I certainly don't pay any attention as I find it pretty hilarious that a grown woman feels the need to constantly criticise me (for everything) in front of my kids and that everytime they do something wrong she says that they have "inherited it" from their mother. I might add here that she has never spoken to me for more than 5 minutes and I have never ever said a nasty thing to her. She is very very welcome to my ex!! She's just a vicious piece of work but she has her
comeupance as far as I'm concerned as the kids call her "the thing"...

anyway, slightly off topc there but thought it might make you smile :wink2:

Katharine
 

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Discussion Starter · #5 ·
Ah thanks guys, you are right i was probably over reacting to the coment my friend made, i couldnt help it, when she said it, it really hurt like a physical stab - if you know what i mean! Was hurt, angry and wanted to cry at same time, im such a softie arnt i! Ineed to get a grip!

As for the plaq ill just have to see what happens on tuesday, hopefully something good as at the mo eveything is aching and keeps going stiff.

Thanks once again :)

love always
rachna xxx
 

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It is still fairly common practice by some doctors to reduce Plaquenil in the winter months, heaven knows why as it can be taken for years without trouble. Of course nobody wants to take more medicine that necessary but this medicine takes several months to reach its maximum effect and it has so many benefits that the more usual practice of keeping people on it at least a couple of years seems more sensible. It's not as if it costs a lot either.
It was wrong to reduce it without an evaluation.

If they want to do it this way they should at least give the patient the option to try reducing and see how it goes, rather than leave them strnaded until their next consultation. Maybe you can get in touch with the consultant.

Many people take an NSAID to help with pain and your GP might well be willing to prescribe something of this sort. Sometimes people take a short course of Prednisone but mostly GPs are reluctant to prescribe it off their bat. I hope you can find a way of getting the Plaquenil restored to the 400 mgs a day.

Best of Luck
Clare
 

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Hi Rachna

Re the 'unhelpful' comments from people.

Somebody here told me that us lupies have to learn to develop a thick skin.

Its so true:)

Meanwhile its good to know that despite knowing all that, comments to get through the thicker growing skin, espically when our symtoms are worsening and bringing our mental resolve down along with it all.

I think its perfectly normal in the circumstances to feel 'upset'.

The sun just shines better when we feel better and others comments bounce off us better.

People havnt got a clue have they....lucky you have people here who do.:)

Its a positive thing the 16 year old is doing well but its good to remember that she may or another with lupus what to come and ask somebody like yourself how to cope when they dont feel they are coping.
Our own experiences are like gold dust , the good the bad and the ugly.

There is a song that says ' Sometimes life throws us bigger curve balls' or someting like that....and it always makes me smile.

Think its a James Taylor song...

Ah well ...

Hope you get some help with your symptoms.

Take care
:)
 

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Discussion Starter · #8 ·
apparntly im making it all up, its all in my head

Saw the doc today ho kinda anoyed me and really upset me. As u guys know i got an app with this lupus doc (not my consultant) as without reviewing me the had lowered the plaq doseage. well this doc in not so many words told me i was making it all up. he sais just because u have a positive ana does not mean is lupus. My ana was positive every time it was done and was v.high.
so does this mean im making up the no energy, the fatigue, the imense pain in tendons(somedays i cant put my heel down) knees and shoulders, is the dry mouth and the butterfly rash and low platelets all something i just made up???
it really upset me and im quiet embarased to say that i fll apart n brok don into tears in front of him.
asked him f its not lupu what is it - h didnt know!
it could b nothing n just a vit D defficiency.
so i ask myself my did my consultant diagnose lupus then???
to add insult to injury this doc has asked me to stop taking even the reduced doseage of plaq.

really dont know what to do at all.
when i got into work after my app i broke into tears again.

its silly and im such a wimp i know i shud b stronger.

helpless now and just dont know. who would bring lupus on themselves i know i wouldnt choose to?

sorry guys im in bit of a mess right now.

love always
rachna xxx
 

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Rachna hi,

Your doctor sounds in need of a kick up the whatsit:sad:

Is it possible you can get private appointment with a Dermatologist? I know you need your doctors letter of referal but Im not sure the doctor can refuse.

I wish I had done this earlier by getting my skin biopsied ( rash ) myself as it would have clinched my diagnosis in a more concrete way and spared me a lot of distress earlier on.

The consultant Rhumatologist is the one who decides what dose of Plaquenil you should be on. It takes months to kick in fully and see if it is working.

You can be diagnosed on symptoms as a main criteria although doctors sometimes seem a little hesitant:mad:.

I have heard of people also getting an appointment with St Thomas hospital in Londond and travellling down.

Unfortunately when you are the only one who is convinced there is something wrong with you, it feels like a mountain to try and get the help you need when nobody is listening.

Ask a doctor what your options are on the NHS, ie requesting a referal, second opinion, any advice really. You might need to ask another doctor though.

Try taking somebody along at your appointments, another thing in hindsight I wish I had done.

There are loads on here who can give you all the concrete helpful advise and Im sure they will :)
 

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Hi Rachna,
It sounds like you saw one of your consultants registrars? If so, can you double check with with the consultant that that's what you should do? And maybe keep taking the plaq until you speak to him (it's probably a bit naughty for me to say that, but I'm a bit of a rebel :lol:). I'm in manchester too - I mainly see a kidney doctor, so that might not help you, but if I can do anything else just let me know :hehe:
 

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Discussion Starter · #11 ·
thanks for listening to me it means alot that there are people who understand. Yes i think im a rbel too:wink2: im going to carry on ith the plaq despite what that plonker has said!
thanks again

love always
rachna xxx
 

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Hi Rachna,

I would certainly agree with the kick up the whatsit Nicky suggested :mad:

I would certainly NOT stop plaquenil at all and I would try and see your consultant himself or even go further and see someone else - making sure that you get a true lupus specialist.

I'm afraid I can't really remember your story and how you were diagnosed but I would say that with your symptoms plus high ANA, the rheumy had good reason to diagnose you (just wondering where a skin biopsy would be of any use here?).

Often misunderstandings can come about between rheumys and patients through simple lack of communication. The system means that they don't actually see you enough and if you don't have a good GP backing that up it can have pretty bad consequences.

My rheumy was going through a pred reduction last year but I really wasn't doing too well and then I was supposed to reduce down again...it was hubby who said "hang on, are you mad?" and made me call the rheumy and explain. She was horrified that I hadn't called before - it hadn't even entered my head to "disturb" her and I was thinking that feeling like that was all just part of tapering. Anyway, that reduction actually ended me up in A&E twice in one week as I couldn't breathe. Since then I haven't been able to reduce at all due to those complications and every time I see my rheumy she says "and CALL me if you're not OK!" as I go out the door.

It's a pretty normal reaction to end up in floods of tears, unfortunately, it often doesn't do much good and with a certain "breed" of doctors makes them even surer that you are "depressed", "over worked", "stressed"... After a while I woud actually go into appointments with a almost angry attitude which, thankfully, I can translate into dead calm at the time. Basically it makes me slow everything down so I state clearly to the doc what I expect, what's going on, what I disagree with (let's face it, how many of us actually DARE disagree...well, know I do!).

You'll probably need a lot of thick skin to get through this but it sounds like you need to start getting angry and make it clear you are not going to be pushed around. Start with remembering that docs are actually paid to help you. They are not doing it out of the good of their hearts (well some do add that element) and you are, in a way, a "customer". And remember the customer is supposed to be KING!

If you have a supportive GP, I would start there. Go back to him and complain, as in really say that this is NOT good enough. See if maybe he can call the rheumy.

If you don't believe he'll do that for you then you need to try and get hold of the rheumy himself via secretary...and of course, maybe longer term look into whether a change in GP is an option. It can make a huge difference!

A while ago I had an excellent GP, a truly gifted man (who was also an excellent chiropractor) but he was so popular, he often lacked time. One day, when I complained yet again of excessive fatigue, pain in shoulders, hips... and reminded him that Mum was hypothyroid and had dermatomyositis/lupus - he replied "so, you think that just because your Mum has that, you have it too!" I was horrified. I hadn't thought that at all. No way did I "want" that, I just reminded him, that's all. Well, excellent as he was I sacked him!! I've seen him a few times since (when he does weekend replacement for example) and when he discovered I had lupus, he was SOOOOOO nice to me and so shocked that I had been able to continue working as long as I did etc etc. I though my my, you have changed your tune :lol:

Anyway, ramble over - just really wanted to say that you can do this - you just need a lot of courage and conviction (easy to say I know).

:hug:
Katharine
 

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Discussion Starter · #13 ·
Hi all,

i was diagnosed with lupus as i had a positive high ANA on all 3 times that i was tested and i also have low blood platelets, high aneamic level, the butterfly rash, tendonitis/joint pain, raynauds, depression and the horrible fatigue and low energy!

id been suffering for a long time before the diagnosis was made.

im going to write to my consultant and see if he responds, as well as make an appointment with the gp. going to see ho it goes and then maybe ask for a transfer to a different rheumy (not sure if its the right thing to do)in the meantime im going to continue with the plaq even on the low as its better that nothing hey?

it just made me feel really angry, confused and very upset at the same time if u know what i mean. in my eyes there is no way anyone would want this i know if given the choice i wouldn't. i felt so paranoid that i thought maybe everyone around me thinks im a fake! so much so that i didn't even want to go for our work's xmas do. i did go in the end and it took my mind of all things lupus, didn't stay out as late as the rest of them as i need my rest n sleep but i had a great time :)! im really lucky in that my work are really nice and caring which i know u don't find in many places.

love always
rachna xxx
 
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