One Happy Day!

[hoping]

Saw rheumy and went over all the criteria for SS and told him very nicely which ones I met, incl. my biopsy that Mayo disregarded as insignificant.  In light of realizing that yes I did have a positive lip biopsy, history of dry eyes and mouth and neuro problems that have relapsed/remitted for years, along with new gastromotility and reflux, gave the green light for putting me on Plaquinel and Immuran.  Finally.  I was afraid I'd be heading to Hopkins for a work up with Dr. Birnbaum and who knows maybe that would make a nice trip someday, but I really wanted diagnosis and treatment NOW and wanted this doc. to see how all the pieces fell together even without the positive blood work. 

He had already told me he didn't think there was anything he could offer me pain-wise and was ready to dismiss me for good, when I kindly asked if I could discuss something more with him.  He helped me off the table to the chair by his desk and I whipped out my info. from Penn Sjogren's Syndrome Center, (where the nationally know rheumy, Dr. Vivino is chair).  Here I had the criteria for SS and the extra manifestations to other systems.  I neatly explained how I fit into the criteria and that, had these other systems affected. Reminded him of positive tests for neuropathy, for reflux treatment, etc.  He did not interupt me once or act put off.  He asked to see my lip biopsy report again, which had been re-read by Mayo, because they originally worded it so loosely with no specific numbers of cells.  He must've recognized that yes indeed it did qualify as positive.  He asked if I felt better on 40 or 60mg Prednisone.  I said of course I did, in all respects, neuro and pain wise, but that I did not want to take Prednisone as I am already borderline diabetic.  I hinted at but did not name any drugs, saying surely there must be other immunosuppressants out there I could try.  He said he would put me on Immuran, but cautioned me not to think it was a miracle drug and that it won't take my neuropathy away.  It may help some, but this will not be a sweeping success.  I asked about Plaquinel, he said we'd also try that, but to give it up to 6mo. for it to work and help ease aches and pains, but that I certainly should be on both Imuran and Plaquinel, implying Plaquinel would not be enough because of neuro symptoms.

I started 200mg Plaquinel tonight with food.  Do I take 200mg in AM and 200mg in PM or all at once?  Any words of wisdom on it, trying to remember what Pooh said.  I will start the Imuran as soon as a blood tests comes back okay with some enzyme.  If not, I will go on CellCept instead.

My researching, never giving up as my own advocate, and good strategy with docs finally paid off!

ONE HAPPY DAY
Karin

[eyeamdry]

I take Plaquenil 200 mg in the a.m. with food and then again at night with food.  Plaquenil has helped many of us.  I'm also taking methotrexate and Lyrica.

Lucy

[Billydude]

I really feel like I'm feeling much much better on Cellcept.     My rhumy took me off from Plaquenuil as it didn't seem to have much effect on me.
Steve

[SassieCat]

I take 200mg morning and night.  Was told it would take at least 3 months for it to store up in my system and to determine if it would help or not.  So far it has been helping. 

Good luck, I hope it helps you too!

[dbab]

Just starting out, I would suggest taking your Plaq in the AM and the other at night.  Helps minimize, if any, side effects.  After you are taking for some time, some like to take them at different times, some all at once, it is really your preference.

I'm glad you got put on a treatment plan.  It really is for the best!

[harrigan]

Well done Karin!  I started Plaquenil last month and took the 2 200mg tablets together after breakfast right from the start.  I've had some 'run for the loo' moments but nothing much else.   My daughter has been on CellCept for 4 years, since she was 12.   That seemed to have a lot more side effects at first than Plaquenil has had for me - but it has been very successful in controlling her condition. 

Hope the new treatment works for you - we will just have to be patient!  Keep posting and letting us know how you get on xx Ailsa

[allium]

Dear Karin:

That's such good news!

I'm glad you found a doctor to listen, and treat you for your symptoms.  No such luck for me; my non positive blood work makes the rheumy conclude I have nothing to treat, in spite of all my symptoms.  I have been on Plaquenil at a reduced dose for four months, now on full, but he said if I don't have any significant pain reduction by now, it's not working and should be off of it.  He is a fool, and I'm still looking for a competent doctor for any help.

Spinal tap today. 

Taking the Plaq with yogurt or a bigger meal has helped me with stomach things.  The worst I have is gas, a bit of nausea, and getting a little buzzed up from it.  I only take the full dose in the morning, with breakfast.  Try taking a half tablet first for a few days or a week, and then increase the dose slowly.  I have also come across info that it interacts with magnesium and antacid meds (interferes with absorption), so try to stagger those doses if that is the case. 

Good luck...happy for you.
Sheila

[HL in NY]

Karen: Good on you!!!! Thank goodness you were able to get him to listen and get yourself on a treatment plan. I'm wondering about the part where he said he can't give you anything for pain. I'm a 'sore & achy Sjoggy' too (most extra-glandular symptoms) and I've had good luck with Celebrex for pain control. It's not perfect, but it's good and it doesn't have the side effects of Pred.

Maybe you could mention it to you Rheumy next time?

Heather

[Victoria05202000]

I am loving my cellcept right now. It took a couple months to get used to it.  The great thing is that I will be on this after my kidney transplant in larger doses though.  I have seen my numbers come down significantly, although I have been exhausted....I think it has more to do with the renal issues than sjogrens right now.  I take Tramadol for pain when I need it too.

I wonder if these big drugs will ever be approved by the FDA for autoimmune diseases?  From what I understand the FDA does recommend them for autoimmune.  

Take Care!
Vicky

[wednesday mc haggis]

Hoping

wooooohoooooooooooooooo!! oh i am so happy reading this  finally!!!

  i think only someone who has gone through what we all have could truly understand the joy of someone believing in us !!! course you meet the criteria, just as well you had all that knowledge or youd still be looking for medications!!  just shows you , you can fit the pieces of the puzzle together and the doctors couldnt, i think  theyd fit them together if it was them in half the time!!

all i can say is good for you and hope the side effects are minimal for you, now you ll have to change your name lololol, glad you kept hoping, its that tenacity and faith that got you here, and i am so glad for you, my rheumy said all she needs is my lip biopsy , but even if not in july i ll be started on it !  god i cant wait, sounds crazy doesnt it ?? actually wanting to take potent meds to some ppl, but not us who suffer day in and day out with symptoms that no one seems to want to treat

T x

   

   

[Scottietottie]

Hi Karin -

WELL DONE YOU!!! That's excellent! How nice you have a doc that will listen too. There are too many who don't like us doing our own research.

I'm so glad you're finally getting somewhere!

take care - Scottie 

[Chickpea]

Hi Karin

That's wonderful news!  You've waited so long for treatment, and for a doctor who actually listens.  To get both in one day is quite mind blowing! 

It sounds as though it's all because of you:  the research you did and even more importantly the way you approached the consultation.  I would love to have been a fly on the wall and listened in.  You just didn't give up and were persistent and assertive, and he listened and took note. 

The others have given you great advice about Plaquenil.  Follow Sheila's notes about introducing Plaquenil gradually and taking it with food, especially yogurt.  I adjusted to it really well by doing exactly as she says.  I've also been on Prednisolone and CellCept for 8 months.  I've found morphine best for pain relief, with anti inflammatories and a Paracetamol cover plus low dose (10mg) nortriptyline for neuropathic pain.

Let us know how it goes with the Plaquenil and once you start Imuran.  Do you start that at a low dose and increase it as we have to with CellCept?  With CellCept you can't eat for two hours before taking it, or an hour after.  I find it a really good discipline because it stops me 'nushing' all morning/evening!

Take care - Chickpea

[JannaLee]

Karin,

Are you available to go with me and talk to my doctor?

Bustin' with pride for you,
Janna

[Katybarstool]

Karin

What a result! Well done you.

Kathyx

[cinmac]

Well done!  I am seeing a new doctor in May, and I think I will borrow from your approach and hope for the same response.