Author Topic: Saw Dr Price today...  (Read 3710 times)

~elizabeth~

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Saw Dr Price today...
« on: November 02, 2009, 09:49:36 AM »
Saw Dr Price in Swindon today, and was relieved to have such a positive experience with her after the less-than-helpful ones with other specialists. She said from looking at my mouth, the symptoms I described, my thyroiditis and the strong family history of other autoimmune diseases, she was sure that I had SjS, and prescribed Pilocarpine (Salogen) immediately. She thought it would be worth trying to get a firmer diagnosis from blood tests/lip biopsy, but from the symptoms described would consider Chloroquine-based medications without positive results from either if that turns out to be the case. As I'm relatively young and still retain some gland function, she thinks it might have some effect on oral/eye dryness as well as the muscle/joint pain and general fatigue.

She said she wasn't surprised that the lab had refused to do SjS antibody tests ('labs can be a bit funny about it') and also that a high ANA score wasn't a prerequisite for diagnosis, but she was surprised that my local rheumatology dept hadn't referred me to her already (they don't appear to have any one with expertise or special interest in SjS there, so usually refer to her dept as it is the nearest).

I'm relieved to have finally found someone prepared to take my symptoms seriously, having been back and fore to the doctors about dryness/joint pain and fatigue for well over twenty years now, from my teens on, but slightly depressed at the though of having to rely on medications, and fear they may not work as well as I hope. I know I'm in the middle of what is probably the worst flare for about 12 years, but it's been getting progressively worse for about 18 months now, though definitely more acute in the last few months following the stress of losing my father in the summer.
« Last Edit: November 02, 2009, 10:10:25 AM by ~elizabeth~ »

irish

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Re: Saw Dr Price today...
« Reply #1 on: November 02, 2009, 11:46:35 AM »
Plauenil is the first line drug used for Sjogrens and is being used much more often and much earlier in patients disease process. We can tell this just by the people who post here about it plus the articles written about it.

May people are very glad to be on it. It takes up to 6 months or so to show the effects but many people are pleased with the results. Sometimes people don't think the drug is doing anything and quit taking it only to find out that the drug was indeed doing more for them than they realized. Most people talk about less aches and pain, less fatigue, some improvement in oral and/or eye dryness. Every individual is different, but you will hear from people who have been taking it quite a few years with good luck.

The other thing that it does is basically slows the autoimmune response and helps delay furthur progression of disease. I wish I could take it but can't at the moment due to other medical factors. Good luck. Also sounds like you have a very good docs. I would say go for it. Irish ;D

JannaLee

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Re: Saw Dr Price today...
« Reply #2 on: November 02, 2009, 01:01:57 PM »
~elizabeth~
I'm delighted to hear you found a good doctor and a bit horrified at your mother's story!  If you can, should Dr. Price have a look at her too?

I know what you mean about about taking medicines.  Every instinct in my being fights needing all these pills!  It is a process of acceptance (for me at least).  2 years ago I imagined the medicines would put my sjs into remission and I would continue on my merry way...then last spring, after being on meds for a year it dawned on me that's not going to happen. 

My experience has been very good with plaquenil. (20 months now) It hasn't made me feel altogether swell, I just am much better.

Good luck with all this. 
Janna

Katybarstool

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Re: Saw Dr Price today...
« Reply #3 on: November 02, 2009, 01:26:10 PM »
Elizabeth

I'm really pleased to hear the appointment went well. From hearing Dr Price speak at the conference in Birmingham a year ago, I just knew she would do her best to help you. Fingers crossed now for some help with the treatment.

Kathyx

Chickpea

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Re: Saw Dr Price today...
« Reply #4 on: November 02, 2009, 03:09:15 PM »
Hi Elizabeth

Wonderful to hear that Dr Price was so helpful and straightforward with you.  Isn't it amazing that we have to be thrilled when someone just does their job competently?

Finding a doctor who will treat symptoms without positive blood results is the holy grail for many people here.  Blood tests possibly make sense, even if just to provide markers for future changes.  How do you feel about the prospect of a lip biopsy?

I'm so sorry to hear that your father died and it's understandable that grief would make your 18 month flare even worse.  Did Dr Price have any thoughts about flares and stress? 

I can empathise with your hesitation about starting lifetime medication.  Whether the meds will work as well as you hope, as you put it, is another concern we all share.  Although it's not easy to accept the prospect of continuous medication and possible side effects, many of us here have very positive experiences with Plaquenil and there's lots of advice about how to introduce it slowly to minimise side effects. 

After 20 years of SjS you know as much as any of us about how unpredictable this condition is - things may get better, meds will kick in, some symptoms will improve and others worsen ... You obviously have a well of inner strength to draw on - all your contributions to SjS World so far make this clear - and I hope we can also help you through this new stage.

Thinking of you - Chickpea

~elizabeth~

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Re: Saw Dr Price today...
« Reply #5 on: November 03, 2009, 12:28:33 AM »
Thanks for the positive replies. I think the enormity is still sinking in, even though I've been pretty sure for a long time I must have the condition.

I think the real problem is that my life has been on hold for so long, and I've been waiting for something that will let me start normal life again. I completely missed out on having a proper 'youth'  -  the multiple swollen gland condition that seems to have been the start of this came on when I was about 19 and absolutely ruined my time at University, though I did struggle on through through a couple of post-graduate qualifications. It took years getting a job as I was visibly unwell at the time; eventually I had to give up my career in publishing because of ill-health in my early 30s. Even working from home has been difficult with current fatigue levels, and the fact that I'm unreliable as I can't really do long hours if I'm going through a particularly bad patch (the nature of our work is that it comes as projects that have to be done rapidly within a limited timescale). Over the years, I've noticed soon as I put myself under pressure, it just makes things much worse.

How do you feel about the prospect of a lip biopsy?

Not sure, she played down how bad it might be, though there's enough discomfort in my bottom lip as there is and the idea of a cut/stitch there isn't nice. Getting a concrete diagnosis might help bring some 'closure', as it hasn't been great explaining to people I have let them down on certain tasks/jobs etc without being able to give a valid 'excuse' for why I'm feeling so bad.

I didn't really think to mention the bereavement aspect, I suppose I feel I should be 'getting over it' now, 3 months on.

Edited to say: just taken my first Pilocarpine tablet. Having been warned that it might take quite a long time to feel any benefit, within about 40 minutes my mouth was awash with saliva. This was accompanied by a few shivers, and the now very odd sensation of actually having a tiny amount of perspiration!
« Last Edit: November 03, 2009, 08:04:52 AM by ~elizabeth~ »