Author Topic: Just diagnosed  (Read 3501 times)

cyates

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Just diagnosed
« on: March 31, 2011, 01:37:23 PM »
I also was just diagnosed with Sjogrens in the last couple of weeks. My primary complaint and the symptoms which sent me to several doctors was very unusual pain, stiffness, heaviness, etc. in my arms upon waking in the mornings (all up and down my arms - and more in my right one), and sore muscles and joints to the touch in my arms. No real issues otherwise except weakness in my legs from time to time. The diagnosis was made by a rheumatologist based on blood tests which showed positive for ANA, SS-A & SS-B. My rheumatologist said that a level of "120" is normal for SS-A & SS-B and mine reads 526 for SS-A and 235 for SS-B. (Note: My terminology may not be exactly right since this is very new to me).

To confirm the diagnosis, I had the Schirmer's eye test, and it showed I have low tear production (I think it was in the range of 3-4 where it should be around 10). I'm now deciding whether or not to begin taking Plaquenil. I picked up the prescription already, but would really like to get more information and a better understanding of my options before starting it. I am concerned about the retinopathy issues with Plaquenil. The drug insert and some of the information I've read on the web and my rheumatologist all indicate that the vision damage is not a real issue unless the drug is taken at a high dose and / or for a prolonged period, and that once problems are detected if you stop taking it immediately, the vision problems typically go away. But... there are a few people who posted about it causing vision problems for them in the first year and some posts said that although they were being watched closely by an opthalmologist, problem signs were overlooked or dismissed, and now they potentially have irreversible vision loss. Since my joint pain, weakness, fatigue, etc. is manageable right now with the Sjogren's I am grappling with whether I should just not take anything until it get worse. Does anyone know to what extent Plaquenil slows the progression of Sjogren's and if I don't take it how bad could the future with Sjogren's be if it does get much worse. What could I anticipate? I'll continue reading all I can on the subject, but thank you for any help with these questions.

Etta

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Re: Just diagnosed
« Reply #1 on: March 31, 2011, 06:04:35 PM »
Hello,

I  was put on Plaquenil as soon as I was diagnosed, and with no symptons except dry eyes. The rheumy seemed to think it was very important to be on it, after I specifically asked him why should I take medicine when I felt perfectly fine. This was at Johns Hopkins, so I really trusted his opinion. I also had the concerns about my sight, but the statistics to have vision problems are very very low, and you should be given a vision field test once a year. I really would not let that stop you from trying Plaquenil - it is really the first defence against SS.

As far as progression goes, there is no way of knowing. Every case is different, BUT I do know that the the vast majority of SS patients only have dry eyes and mouth. (I say 'only', but I certainly know how debilitating they can be.)  I have had it for 8 years, make no tears at all, struggle desperately to keep my eyes open while watching movies or lectures, but also have a wonderfully full and happy life. When I was diagnosed, the fact that I had sjogren's was actually a huge relief, because the dr was testing for much worse things.  I also try and remind newbies that the wonderful folks on this board are often the ones who have the most severe cases, because the others are too busy doing other things to post here much.




cyates

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Re: Just diagnosed
« Reply #2 on: April 01, 2011, 10:28:55 AM »
Etta - Thank you for the feedback on Plaquenil. I will certainly consider what you've said in making my decision. I suppose I'm hyper-sensitive to medication warnings. My mom has had some real issues with drug side effects and it has caused me to be more precautious. Do you continue to take it and do you think it has kept you from developing the joint and fatique problems that I'm experiencing? I suppose it's hard to know because, like you said, the progression differs from person to person. As for your dry eyes - do you use Blink several times a day ? That's what I was told to use, plus warm moist compresses, but dry eyes are not my primary complaint so I haven't really noticed a big difference.

I understand what you're saying- in my case, initially, Rheumatoid Arthritis was suspected. From what I've learned, it can be a tougher to deal with than Sjogrens. For now anyway, RA has been ruled out but from what I've read, it often accompanies SS, so I want to do what I can to keep it at bay if that's possible.

hootyhu1

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Re: Just diagnosed
« Reply #3 on: April 02, 2011, 09:24:11 PM »
Hi,
I too was recently DX and I had 3 Rheumy's tell me to start Plaq. I am only on 200mg (it seems most people are on 400). I am also an Ophthalmic technician. Just make sure that at every visit they check your color vision and that you have a visual field test once a year.  My symtoms are pain in my hands mainly and fatigue. the plaquenil has helped me tremedously!!!! I too am a little confused if the plaq will only aleaviate symptoms or slow the progression of the disease. I am being honest here....I am getting more info from this forum than I have from doctors.....sometimes they are too busy..... anyway, Welcome to the forum!!!!!-hootyhu

cyates

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Re: Just diagnosed
« Reply #4 on: April 04, 2011, 06:35:19 AM »
hootyhu1 - I am taking notes on all this- thank you for the reminder about the particular vision tests that are important to have. I still have not begun the Plaquenil. I am hoping to find a study that makes me feel like the risk is worth it and that the progression of SS is slowed. However, from talking to my rheumatologist and pharmacist, they both say since it's an old drug and that it was originally meant for malaria, that extensive studies are not usually done on secondary uses. I have seen some links on this forum that I plan to follow up on about Plaquenil -- just have to remember where they were and take the time to read them.

sramey62

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Re: Just diagnosed
« Reply #5 on: April 06, 2011, 04:20:33 PM »
I was on plaquenil for one year, two different times and each time it degenerated my eyesight.  I went from reading glasses at 150 strength and am now at 250.  That was fast.  I also now have pain in the left pupil as if someone is trying to spread the pupil wider.  BUT...that's now only during high stress times as I have stopped all plaquenil, methotrexate, enbril, and prednisone.  I ONLY TAKE LOW DOSE NALTREXONE and it's taken all symptoms away, unless I'm in the middle of a super high stress time.  LDN is the ticket for me.

Enjoy Your Day

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Re: Just diagnosed
« Reply #6 on: April 06, 2011, 05:07:42 PM »
Cyates  I appreciate your post.  I am intrigued by the fact that your doctor put you on plaquanil and Etta's doctor did as well-right from the beginning.  I may need to have a firmer discussion about the plaquanil methotextrate options with my rheumatologist.  The doc said no but now I want to know why he said no.  Maybe the plaq/metho would help and  I could start being more proactive and stopping the inflammation rather than being reactive and popping lyrica and pain pills. I too would be curious as to how other people made their decision to take or not to take.