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View Full Version : Knock back again at Doctor's today about plaquenil



Peridot_Gem
02-07-2011, 10:20 AM
Well i went to the Doctor's today with positive thinking and thought this would be my day for starting plaquenil.
The doctor told me he can't start me on it as the optician as done a report for referal to the eye infirmary now and that report will say if i can have it or not as my eyes in different fields are bad for 42yrs of age but he's booked me in for thursday for my B12 injection, so it's another waiting game again.

I came in the home so flustrated with rage, then i started crying bad with flustration and banged my head against the bedroom wall and i have'nt done that in years and i only did that to numb my head off the pain i used to go through.

I've told my hubby i feel what's the point of going on when your in a circle going around just full of appointments and in pain and getting no help, i just need something for the pain i'm in, as i'm finding this really hard.

Thanks everyone for listening to me as it's helped me to express how i feel over the whole situation again.

Love & Hugs to you all. xxxxx

debbie-b
02-07-2011, 12:42 PM
I am sorry that you have to go through this, I know how frustrating it is.
My rheumy told me last monday to stop the MTX, because my liver enzymes where very high.
He called me on tuesday and left a message that he would call me back on thursday to tell me what we are going to do next. Well today is monday and I have not heard from him. I have left several messages for him and no responds. I just got of the phone leaving him a message, that if he doesn't care that I am in pain, I will find a doctor that will. He had me stop ALL meds when I first started MTX four weeks ago, now I am not on anything. UGHH
I hope your problem will get resolved soon.

Debbie

tgal
02-07-2011, 01:35 PM
I am so sorry your appointment didn't go as you wish. Hopefully things will go better on Thurs! Please let us know

Peridot_Gem
02-07-2011, 01:56 PM
I am sorry that you have to go through this, I know how frustrating it is.
My rheumy told me last monday to stop the MTX, because my liver enzymes where very high.
He called me on tuesday and left a message that he would call me back on thursday to tell me what we are going to do next. Well today is monday and I have not heard from him. I have left several messages for him and no responds. I just got of the phone leaving him a message, that if he doesn't care that I am in pain, I will find a doctor that will. He had me stop ALL meds when I first started MTX four weeks ago, now I am not on anything. UGHH
I hope your problem will get resolved soon.

DebbieHi Debbie,

Sorry to hear your being messed about also and having to chase your specialist, i really hope he gets back to you to sort something out, it's just not good enough they know what we're suffering and they just could'nt give a dam.

My hubby seems to think the reason why they're double checking is because of the high amount of drugs i'm taking already day and night, so it's back to the paracetamol again.

Debbie thanks for your support mate xxx

Peridot_Gem
02-07-2011, 01:57 PM
I am so sorry your appointment didn't go as you wish. Hopefully things will go better on Thurs! Please let us know

Hi Mari, It's just the jab on thursday. I've not been wild like today in quite a few months even my hubby noticed that.

Luv Terri xxx

~LUVMYFLOWERS~
02-07-2011, 02:32 PM
Hello Terri, I am sooo sorry it's the waiteing game again with your doctor's!
Sending BIG HUG'S YOUR WAY!!!!!!!! Seems as though you and I have been walking in the
same pair of shoes for a while, with our doctor's,the waiteing game, and as soon as you
think a door is going to finaly open for some answers or new med's and get your hope's
half way up a little, the door is shut again.
Bless your heart Terri, I can honestly say I know how you feel!

Im so hopeing on thursday when you get your b-12 inj it will do you wonder's as mine
i just got is helping me, least im not crying all the time on and off as i was, just when
my doctor's like your's jerk me off my med's and then dont call back to put me back on
the one i need to slow my disease, and going through the pred withdrawal's.
Sure did a lot of crying & throwing a fit about that.

And the b-12 inj should last in your body about 30 day's or so, is what my dr's said. I havent researched it to see yet.
Im alway's here for you any thime you need someone to talk to or just vent!
Try to relax as hard as it is and i hope you have a better day tomorrow!!!
Sending you lot's of love and Big Hug's!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Diane,

Peridot_Gem
02-07-2011, 03:04 PM
Hello Diane,
Yes we're wearing the same shoes mate, the total lot drives you crazy.
I am sorry to hear though what the withdrawals are doing through our PM's, and the swapping about like i said won't help at all, i bet your system feels like a bombs hit it.
Diane the only boost i had was years back when my anemia went to 8.0 and i was seriously ill, they injected 5000mg of B12 into me in 2 days and it was long before i felt right, i can't see these working that brill anyway.

I am sorry you've been crying alot mate, i just wish these doctor's would realise what we're going through and i know your always here for me mate and i really appreciate it in more ways than one.

Diane just relax i know it's not easy for me to say but in some ways i do understand even though it's different meds.

Love you loads mate xxxxxxxxxx

magistramarla
02-08-2011, 10:49 PM
Hi Terri,
It is important that you get checked by an ophthalmologist before starting plaq and every six months after. You would think that the doc would have told you to set up that appointment long ago, so that you could get started on it.
That would make too much sense, though!
Hang in there, my friend.
Hugs,
Marla

tgal
02-09-2011, 02:14 AM
It isn't just in the UK. Mine didn't mention the before one only the one after a year. I am due soon. Anyone reading this needs to know that you should have a baseline one done, as Marla said, before starting plaq!

Peridot_Gem
02-09-2011, 09:25 AM
Hi Terri,
It is important that you get checked by an ophthalmologist before starting plaq and every six months after. You would think that the doc would have told you to set up that appointment long ago, so that you could get started on it.
That would make too much sense, though!
Hang in there, my friend.
Hugs,
MarlaHello Marla,
I've never had this mentioned mate about being checked by an opthalmologist, they just wanted to make sure the optic disc was clear before starting me and your right about it making to much sense.
To be honest marla i don't rate the rheumo i'm seeing that brilliant, my skin specialist lets me know more looks well ah.

You takcare of yourself mate & i just hope your note pushing yourself to much again.

Peridot_Gem
02-09-2011, 09:27 AM
It isn't just in the UK. Mine didn't mention the before one only the one after a year. I am due soon. Anyone reading this needs to know that you should have a baseline one done, as Marla said, before starting plaq!Mari,
I was only told a yearly checkup like yourself and i'm due in may for my test again for my eyes but what marla as said i shall tell the eye infirmary this when i go.

magistramarla
02-09-2011, 03:18 PM
Terri,
Wow, I can't believe that you weren't told upfront that you need to get a baseline eye exam before starting Plaquenil. It seems to only affect a very small number of people, and usually not those of us who are on small doses for AI issues. In high doses, it can affect the retina and the peripheral vision.
My great rheumy in Texas went over all of this with me, and sent me to an ophthalmologist for a baseline before starting the Plaq. I was planning to move, so he put all of my records on a jump drive and sent it with me. I chose an ophthalmologist here who specializes in dry eye conditions for the Sjogren's. He's great! I think that he knows much more about Sjogren's than my rheumy!
It's a small thing, but docs should definitely make patients aware of this!
Hugs,
Marla

Peridot_Gem
02-09-2011, 04:11 PM
Hello Marla,
When i went to see the rheumo specialist instead i just saw the blood specialist instead and he spoke about different things and i then mentioned wanting the plaquenil and he said you need to have your eyes tested first before starting it and he asked me how often i go i said yearly since being diagnosed and not due till may, he said go to your opticians and they need to run a test and give that report to your GP and he'll know if your allowed to go on the plaquenil or not, nothing about seeing anopthalmologist.
I've been tested up the hospital about the dry eyes test for the sjogren's and she said your not to bad your results are 6/10 it's more serious when it's 2 or 3 out of 10.

I'm adding my eye test results as i got a copy from my doctor and i'll put on everything she said, so you may have a rough idea.lol having it done by proper specialists.

My report from opticians

uncorrected Sph Cyl Axis VA ADD VA
V
Re 6/12 +0.75 0.50 90 6/9 +1.25 N6
LE 6/12 +0.75 -0.25 100 6/9 +1.25 N6

Disc appearances:0.25 LE:0.3-temp pig round central cups

Intra- ocular pressure re: 20 mmHg LE 20

Visual fields Re: Enclosed R+L

Eye examination today at the request of her rheumatologist (prior to possible commencement of hydroxychloroquine tx)
My findings where as follows:

1/ VAs appear to below normal for age (although this was also the case at last eye examination)

2/ Ishihara CV test 24 plates edtiton (conducted monocularly)
RE - 24/24 correct
LE - 23/24 correct

3/Amsler - clear R+L 'Possible' pigmentary changes at maculae noted with direct ophthalmoscopy

4/ Significant bilateral visual field defects ( i have enclosed results) Please not that optic discs appear healthy.

In view of the above findings you may wish to refer for Ophthalmological opinion prior to commencement of hydroxychloroquine tx.


Marla those was the results mate and my GP is still sending me to the eye infirmary, if he does get the letter friday off the rheumo it ah saying he'll still start me if he wants a second opinion first.

magistramarla
02-11-2011, 01:22 PM
Terri,
I'm guessing that they are concerned about the visual field defects. My ophthalmologist checked that yesterday, too.
He said that it takes 5 or 6 years for any toxicity to show up. Since I only take 200 mg, not the usual 400 mg, he thinks that it could take 10 or 12 years.
I know that you've started taking it, so don't worry - it shouldn't hurt.
Hugs,
Marla

Peridot_Gem
02-12-2011, 08:24 AM
Terri,
I'm guessing that they are concerned about the visual field defects. My ophthalmologist checked that yesterday, too.
He said that it takes 5 or 6 years for any toxicity to show up. Since I only take 200 mg, not the usual 400 mg, he thinks that it could take 10 or 12 years.
I know that you've started taking it, so don't worry - it shouldn't hurt.
Hugs,
MarlaMarla,
The other GP i saw standing in for my doctor looked at the eye test results as he was better than a rheumo knowing about lupus and the diseases it brought with it and said i was ok to start it but i have recieved an appointment to see an Ophthalmologist on the 10th of march and he's a Mr, i always have to remember when i go in if it's a Mr or Doctor as i called a Mr a doctor years back and my god i was picked up for it.

~LUVMYFLOWERS~
02-14-2011, 05:02 AM
Hi Marla, and Terri, My specialist AI rumatologist that is at the University also sent me
sevaral months back for a Baseline eye exam as he was telling me if my disease wasent very bad it may be to where i could start the Plaquenil again, and explaned the risk and also told me if my brain disease had progressed kinda fast then my next choice would be Imuran , or maby the MTX and explaned all the risk and bennifit's of each medicine. He was awateing my new'est MRI to then decide what med i needed to be put on.
So i went to my ophthalmologist that specializes in dry eys and sjogrens he examened my eyes
i told him i may be starting the plaquinel and sent me home with a grid told me like maby twice a month to look at the grid and if the streight lines on the grid looked wavey to make an appt to come back in to let him check my eyes again. But he had hundreds of paitent's on the plaquinel and none of those had any problems with there eyes from the plaquenil over his 18 or
so years he has been an opathalmologist.
Love And Hug's to you Both!!!!!!!!!!! Hope you both have a great day!!!! ~ Diane ~

Peridot_Gem
02-15-2011, 07:32 AM
Hello Diane,
The info your ophthalmologist gave [christ i've never known words so long.lol] sounds like he knows what he's on about refering your eyes with taking the plaquenil and to give you a grid to test yourself regular was good and lets hope the plaquenil is'nt to bad a drug towards our eyes.
Well i've never wore my long distance glasses since i had them last year, i always use my reading glasses have no choice but my hubby made me try them on, they was great when i had them not no more the distance now is from our front door to the neighbours front garden where the drain hole is so there of no use till i go in may again.

Thanks for that advice diane.
Loads of love Terri xxxxxxxxx