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View Full Version : I hate Rheumy appointments!



Corella
02-26-2012, 10:03 PM
This will be my first Rheumy visit since my diagnosis of sero negative Sjogrens (weak positive), I have been on Plaquenil for 2 months now and the differences are subtle but there are deffo some differences, I have cut back on pain relief, I can think more clearly, I can do more but cannot overdo it or I pay the price the next day.

I am still super dry, each day is like opening pandoras box, I never know what I will get, the Sjogrens is affecting my lungs big time and I am getting sore finger joints with bony bits sticking up on one of my thumbs.

Anyway, I have the Rheumy on 1 March and I am so not looking forward to it, bearing in mind last time he saw me he tried to tell me I was sleep deprived and it was only down to my eye specialist and dentist saying 'this is Sjogrens' and my eyes have zero tear production and now have punctal plugs that the Rheumy accepted it and diagnosed me.

The sun makes me really sick, slightest exposure and I am sick, dizzy, in pain, palpitations - it is horrible and I cant go near UV lights.

My more worrying symptom although it isnt painful in anyway are pins/needles/tingling on one side of my face/head and each time I have a shower I have prickles/tingling all over my upper body - it is awful and I get a feeling of fullness/numbness in my hands and feet.

Do any of you dread turning up to your appointments with a list of complaints? I dont know how to deal with it, I am taking hubby in with me as he can back things up - like the time I took the keys and locked him in the house, or threw away his chefs knife. (holds head in shame)

I am so nervous it isnt true, I wonder if the pins/needles is worth telling him, or should I save my appointment to tell him about the sun allergy?

Decisions decisions but bearing in mind I am paying him $300, I should be allowed a big fat list, dont you think?

:(

steve.b
02-27-2012, 01:49 AM
it is onlymy opinion, but if you spend $300.00 you need to get your monies worth.
if you are not happy with this rhuemy, find a new one.
there is a few of us in wa, who are happy with our rhuemy.

i am happy with mine, and i know that others have recently changed to a better doctor.

if you need details...... just ask.

Corella
02-27-2012, 01:59 AM
Sent you a message Steve xx

debbie-b
02-27-2012, 05:47 AM
I would tell him everything, bring the list.
This doctor is working for you, YOU are the boss. You need to go in with just that attitute that you are in charge.
If he doesn't want to listen, you will have to get a new rheumy.
I am on my second one, he is a good one, now. In the beginning he was riding the "vitamin can fix anything" wagon. For a while, I was riding the wagon with him, but I finally told him, why does he want me to take all these vitamins ( expensive), if all my blood tests showed good vitamin levels. He actually agreed with me.
You don't have to be scared, to tell him ALL your symptoms.
Good luck and remember you are the boss.

Debbie

steve.b
02-28-2012, 02:10 AM
i always take a list to every doctors appointment.
if i think the doctor needs the information beforehand.
i email it to them.

i know the doctors take me seriously.
my gp even asks for the list, if i dont give it to him at the start of my appointment.

Corella
02-28-2012, 06:54 AM
Right, this is 'The Prayer to the Rheumy'

Twas the night before my appointment
I was alone in my home
Except for the aching
and pain in my bones

My eyes were so dry
And so was my mouth
My fingers deformed
I wanted to shout

The list has been written
To give to the man
That holds all the answers
In his big 'rheumy hands'

'I dont believe you'
'It's all in your head'
'It's down to your hormones'
'Just go back to bed'

'Go and take an asprin
'Right now if you may'
'Ill take no notice'
'Of your raised ANA'

Tomorrow I am hoping
That my list is believed
That my poor mangled fingers
And pain are relieved

So please Mr Rheumy
Can you be kind
Just take down my symptoms
And say it's not in my mind

Amen

red246
02-28-2012, 07:20 AM
LOve it! Hope your appt goes well. I always write down any problems I've been having. Whether or not I remember to take it w/me is another story entirely! I usually start out w/the most bothersome issue and work my way down.

E42brchick
02-28-2012, 08:22 AM
I agree with the others that if you are paying $300 to see this Rheumy you should definitely get your money's worth. I always document all my symptoms between appointments and I keep a journal also documenting when and what symptoms I have each day. I write EVERYTHING down big or small because I just never know what is the lupus and what is a side effect of medication. You shouldn't feel like you need to "save" your appointment for one symptoms. Take your time, explain how you feel, and hopefully your Rheumy will take the time as well. Hope the appointment goes well!

magistramarla
02-28-2012, 11:11 PM
Corella,
I loved your poem. Writing everything down sorta backfired on me. My great PC doc and rheumy in Texas both told me to take my list of symptoms and dates with me to my new docs when I moved. My new PC doc took one look at it and told me that I might be a hypochondriac. The new rheumy just grunted and requested her own lab work. When it came in, she basically blew off what the former rheumy had diagnosed. It seems to me that if the blood work showed improvement, it meant that the meds were working, not that the previous dx was wrong, but I'm just the patient, what do I know?
I'm just glad that she renews my prescriptions and I'm putting up with her until I move back to my great docs. Like you, I hate those appointments.
Hugs,
Marla

Corella
02-29-2012, 05:06 AM
Just this minute got back from the Rheumy, I took hubby with me who picked up on the fact my Rheumy is not that confident in Sjogrens, only Lupus although they are 'cousins' so it has been described.

I know my pins/needles/tingling is down to neuropathy - even my GP knows it but specialist said he didnt know what had caused it. He also said it is difficult as I dont have the Sjogrens antibodies and it could be classed as 'unclassified dryness' but he agrees with the eye specialist of the diagnosis of Sjogrens and said he wants to keep me on the Plaquenil as I am responding to it.

He is concerned about my lungs and has started me on Dexamethasone as I cant take preds, I have to be on them a month and he wants to review me.

So all in all a good appointment, I am believed enough to be given the sero neg diagnosis and he does not want to do a lip biopsy as the outcome will be the same as will the treatment. He is a nice and polite man but as hubby said, is not as familiar with Sjogrens as some specialists but the main thing is, he believes me, he believes in sero negativity and is prepared to treat me on that basis.

He has also recommended some gel for 'down below' and much to my hubbys embarrassment, was taking about 'lady gardens' with him and dryness (you should have seen his face) He also went through diet with me and what to eat/not to eat on the steroids.

I am a bit concerned about the neuropathy and him not knowing about pins/needles but we shall see how it goes, I am back in April for a review.

I am quite happy with how today went and even more so how the Plaquenil has enabled me to live a more normal life, and thank you so much for all your advice.

magistramarla
02-29-2012, 10:04 PM
Corella,
Read this article about the neurological manifestations of Sjogren's. http://www.sjogrensworld.org/mandel.htm
I've had the same problems that you are having. I have really severe numbness and tingling in my lower legs, feet and toes.
The rheumy, and even a neurologist have refused to believe that Sjogren's could be causing it.
I attended a Sjogren's conference and heard a neuro from Johns Hopkins say that it could.
That's why I carry a copy of this article to appointments, but the docs refuse to look at it.

LOL - my hubby and I have an assortment of those gels in the hidden drawer in our headboard. KY is my friend!
Hugs,
Marla

rob
03-01-2012, 04:18 AM
LOL - my hubby and I have an assortment of those gels in the hidden drawer in our headboard. KY is my friend!

You never pull any punches or sugar coat anything Marla, and sometimes it's really funny!

(I can always use a good laugh this time of morning)

Corella
03-01-2012, 06:12 AM
Corella,
Read this article about the neurological manifestations of Sjogren's. http://www.sjogrensworld.org/mandel.htm
I've had the same problems that you are having. I have really severe numbness and tingling in my lower legs, feet and toes.
The rheumy, and even a neurologist have refused to believe that Sjogren's could be causing it.
I attended a Sjogren's conference and heard a neuro from Johns Hopkins say that it could.
That's why I carry a copy of this article to appointments, but the docs refuse to look at it.

LOL - my hubby and I have an assortment of those gels in the hidden drawer in our headboard. KY is my friend!
Hugs,
Marla

I had to giggle about KY being your mate, I think I might have to be introduced to my own selection, Doctor recommended something but I cant recall what it was. I have had a super busy/stressful day today and I have a nasty nasty pain in my left hip, it hurts to lie on it, feels like the ball/socket joint is stuffed and I also have a crunching sound/feeling in my right jaw - it is so odd, you can hear it, it doesnt click but crunches like the bone is broken and it aches - has anyone heard of that?

rob
03-01-2012, 01:12 PM
I also have a crunching sound/feeling in my right jaw - it is so odd, you can hear it, it doesnt click but crunches like the bone is broken and it aches - has anyone heard of that?

I have had this same thing happen. I got both the clicks, and then the crunching sound as well as the ache on a constant basis. I ended up having a bad bout of inflammation in the TMJ, and it was a major issue for me at one time. Had to use one of those mouthpiece things at night, and it finally went away. I'd get up in the morning and the jaw would be out of the joint on one side, not fun at all.

It was just one of those weird Lupus inflammatory episodes. For whatever reason, the inflammation settled in in the TMJ area. It's not given me trouble for a couple of years now (knock on wood).

Rob

Corella
03-01-2012, 09:06 PM
I started my 2mg of Dexamethasone today, feel quite nervous as I react to steroids - cant tolerate Prednisolone but better on Dex, is 2mg a big dose? I am on it for a month, then review to reduce to 1mg.

Pain in my hip is pretty bad so willing to give it a go, been under a huge amount of stress lately so that would have made my flare worse so willing to do what I have to in order to get back on an even keel.

Corella
03-02-2012, 11:25 AM
Oh my god! Took 2mg of Dex early this morn, which is equal to about 12,5mg of preds, it is 2.20am and I am wide awake and aching and my head is buzzing, can't take any more painkillers till 6am. I am so responsive to steroids my doctor said, I'll do the insomnia reluctantly as I drink hourly anyway but if I get the mood swings then I have to stop them- and quickly.

I could cry- if I had tears that is.

How on earth can these drugs be good for you? And, I want a hot drink but that would wake hubby up.

Corella
03-03-2012, 11:07 PM
Well the steroids have well and truly kicked in and I feel bloody fabulous! My pain is minimal, I am now on lower strength pain relief and less of it, I am sleeping, I have energy and I believe the the plaquenil and steroids make a formidable team in Sjogrens. I am on 2mg of Dex for the month and then will reduce to 1mg for I dont know how long.

But I have energy, the plaquenil took about 8 weeks to work and each day is getting better, my brain fog has gone and although it took a lot of the pain away, the steroids have given it the final kick. My mouth and eyes are still dry as a bone, I choke on my food sometimes and I cant quite get through the night without sprays, drops and drinks.

I feel almost cured, am I cured? I know I am not but l do wonder what the future holds when two tablets have made me feel so very different and I know I cant stay on steroids forever but for now I am so going to enjoy this brilliant feeling.

Today ladies and gentlemen, I love my life and value the health I have (thanks to steroids and plaquenil)

steve.b
03-04-2012, 03:17 AM
good to hear you are doing so well.

the best outcome would be that the steroids stop the progression, at a level the plaquenil can control.

heres hoping !!!!!!!!!!!!!!!!!

magistramarla
03-04-2012, 10:08 PM
Corella,
For the dry eyes, I use Restasis, and I use Biotene products for the dry mouth. I'm not sure if those products are available where you live. Biotene toothpaste, mouthwash, etc. are all OTC and available in most grocery stores and pharmacies here. Restasis is prescribed by my ophthalmologist. It is sort of expensive, but he told me to re-use the vials, which makes it a lot more affordable. It has really helped me a lot.
I hope that you can find some products like these.
Hugs,
Marla

magistramarla
03-04-2012, 10:11 PM
You never pull any punches or sugar coat anything Marla, and sometimes it's really funny!

(I can always use a good laugh this time of morning)

Rob,
LOL As I often tell people, there is a reason that I have five kids!
Hugs,
Marla

Corella
03-05-2012, 01:04 AM
Corella,
For the dry eyes, I use Restasis, and I use Biotene products for the dry mouth. I'm not sure if those products are available where you live. Biotene toothpaste, mouthwash, etc. are all OTC and available in most grocery stores and pharmacies here. Restasis is prescribed by my ophthalmologist. It is sort of expensive, but he told me to re-use the vials, which makes it a lot more affordable. It has really helped me a lot.
I hope that you can find some products like these.
Hugs,
Marla

My eye specialist said he doesnt rate Restasis that much, but I take Colgate flouride dry mouth rinse twice a day and Biotene mouth wash after brushing after meals and I have biotene oral gel at night time.

I dont know if it is my imagination but my dry mouth/eyes seems to have subsided the past couple of days - not sure if it is anything to do with plaquenil and getting a good build up now, or steroids.

I have had steroids for many years for asthma and I hated them - until now. But for my pain, they have worked quickly and for the first time in a long time, I feel 'normal'.

I wonder what dose of Dex I will go down to in a month, I am on 2mg, so I am assuming he will put me to 1mg which is equal roughly to about 7.5mg of preds I think.