how do they know Plaquenil slows the progression of sjogrens??

[mshistory]

I don't know if it slows the progression, but my latest blood work did show my SED rate back in the normal range (it was high pre-treatment) so I think it's doing something positive 

[irish]

As far as the plaquenil slowing the autoimmune attack on our body goes, it is a very individual response that I can see.

If your blood work is improved AND your symptoms are better it is probably helping you. If you blood work isn't better and your symptoms are improved it is probably helping you. If your blood work isn't better AND your symptoms are not improved it probably isn't helping you.

Remember that blood work doesn't have to be positive to have symptoms AND people can have positive blood work for years with out having symptoms til later on.

Also,if you have been on the plaquenil for many months without any improvement it is probably time to get out the big guns. They use the Imuran, cellcept and methotrexate the most from what is mentioned on this site. Yes, the Rituxin is used, but I don't know just exactly what the criteria are to use that drug. I know that it helps to get rid of the cells that are attacking us and sort of get us back to normal. Some people are bloody miserable on it and others not so much.

I will say again that it is an individual reaction to the medications and even if we have bad luck with one there are more out there that we can try. I would never take the strong medications for the dryness---at least at this point in my disease process.

It is recommended that if we are having central nervous system symptoms we should start them as soon as possible. None of us want to start these medications, but if the time comes when we need them there really isn't much choice if we choose to have a better life style. Good luck to all of you. Irish

[jasonsmith]

I wonder how many of these Rhmy's are up to date to even know?

I've seen tons of doctors over the years who really didn't do anything or really know what to do. Though, my basic bloodwork would come back normal.

I doubt many Rhmy's are up to date on treatments and studies that are being done.

I'm hoping since my bloodwork has always been good. That I have a good response with medication.

I'm thinking about maybe doing an ultrasound of the salivary glands to see what that looks like.

[gold55]

Irish,
What are some of the CNS symptoms we should be aware of?  I get the different nervous systems mixed up with their respective symptoms.  thanx

[irish]

You know what, Gold>? I don't think that anybody can say for sure just what CNS symptoms go with what disease. If you look up lupus you will see a list of issues, etc. I think that the CNS issues are pretty much up for grabs.

I know that the cognitive issues, poor concentration, depression, numbness in extremities, seizures, headaches, insomnia,hallucinations are pretty much the common ones that I can pull out of the air right now. The depression can be from the chemicals in the brain or, it is my personal opinion that a lot of the depression-cognition-concentration issues can be related to the inflammatory effect on the brain and/or tissues in the spinal cord.

I think that we must be proactive about these issues because in the long run these issues can be the ones that will more profoundly effect our overall health than we would have originally have imagined. The dry eye/mouth issues are many times the things that disrupt our life making us so miserable that we tend to ignore some of the CNS symptoms that are slowly getting worse.

I also am beginning to think that we have so many organs and functions in the body that can be affected that we are just overwhelmed trying to keep up. This also overwhelms the doctors and it is only when the CNS issues become huge do we finally get a referral to a neurologist.

By then we may have some issues that just don't respond to treatment very well. Sooo, my feeling is see nuerologist sooner than later. Irish

[gold55]

you are right Irish....when I mentioned to my doc after he referred me to a rheumatologist..."can we get a neurologist on my team"?  He replied, "no, let's not involve too many doctors right now"!!!  Now what's that saying?  Too many docs may have different opinions than he has!  or he may lose control of my visits to him if I have to see other docs for special issues??  I'm going to talk to my rheumy in Dec. about getting a Neuro on board.  She seems more like a "team player"!!

[Virgi]

Great question!! I am on Methotrexate and have been reading and searching on how it would help progression? ... Im 36 was diagnosed this year inMarch ... but I feel its been an ETERNITY of side effects and I feel worse than before I was diagnosed... so is this medication worth taking? how can we know Plaquenil or MTX or any of the other medications do work?
its very frustrating.. i needed to vent!!!

[jasonsmith]

Great question!! I am on Methotrexate and have been reading and searching on how it would help progression? ... Im 36 was diagnosed this year inMarch ... but I feel its been an ETERNITY of side effects and I feel worse than before I was diagnosed... so is this medication worth taking? how can we know Plaquenil or MTX or any of the other medications do work?
its very frustrating.. i needed to vent!!!

What are the side effects?

[gurs]

Cheez, seems this plaquenil debate just keeps going on and on ..on this board.  Who really knows what it does etc. Its been used for years with mostly milder side effects than the other DMARDS and other agents.

I was on plaquenil for years and years, stopped it because I thought it wasnt doing anything..3 months after that, all my hair in back fell out, and then my CNS symptoms all appeared...(alot of MS type symptoms) as well as everything else just got worse, like joint pain, dryness, fatigue, etc.

I believe it does slow down the progression of the disease, but alot of us need additional meds added to get any other relief of pain, etc.

Gursie

[LizPetillo]

My rheumy said there is no evidence to support that Plaquenil slows down progression, she said that is an old way of thinking.

Bah humbug.  It sure does slow it down.  When on it, everything is better and inflammation is down.   When off it, everything is worse and inflammation is much higher.  Inflammation = possible damage afterwards.  Therefore ... simple math ... less inflammation means less damage.

It may or may not slow it down drastically... but it DOES slow it down.

Bad Rheumy .. bad bad (*swats Rheumy on the nose with a newspaper).

[Carebear]

Virgi,

Would you consider injectable Methotrexate?  My rheumy says this option offers far fewer and less severe side effects. And the dosage is more consistent because with the oral medication there is no way to tell exactly how much is being metabolized by the body.

As for the original question about Plaquenil's effectiveness...bottom line is that it works for many, many people who suffer from a variety of autoimmune diseases.  The only way you'll know for certain if it improves your quality of life, is trying it for yourself.

[jasonsmith]

Virgi,

Would you consider injectable Methotrexate?  My rheumy says this option offers far fewer and less severe side effects. And the dosage is more consistent because with the oral medication there is no way to tell exactly how much is being metabolized by the body.

As for the original question about Plaquenil's effectiveness...bottom line is that it works for many, many people who suffer from a variety of autoimmune diseases.  The only way you'll know for certain if it improves your quality of life, is trying it for yourself.

Plaquenil takes like 6 months to start working if it is going to work, correct?

I'll have to look to see if there is a patient assistance for injectable methotrexate.

[gurs]

I noticed a difference in one day...started it at night, next morning I felt alot better...less drying, less fatigue, and less joint pain.
But, that was my experience...I think the say to give it a full year for the best effect. Each person is so different.

Doctors (not my rheumy) also told me this was impossible...but hello, I know my body!


Gursie

[jasonsmith]

I noticed a difference in one day...started it at night, next morning I felt alot better...less drying, less fatigue, and less joint pain.
But, that was my experience...I think the say to give it a full year for the best effect. Each person is so different.

Doctors (not my rheumy) also told me this was impossible...but hello, I know my body!


Gursie

Was that the Plaqueil or the Methotrexate? I've also read how docs like to do at least two medications at the same time instead of just one. From the research, looks like people tend to have better results when taking two meds instead of just one.

[Meleke]

Ohio lady  and Diane    I'm going to be going to cc Wednesday  the Euclid ave  c building.   i have had many bad experiences with some Dr's at osu.  there's a Dr Dasilva i'm going to see  i know that Gretter is the sjs Dr but do u know if this Dasilva is a good one too?  would like to know I'm not going to waste my time. i had an osu doc tell me i have had multiple mini strokes n  2 big ones n set to have another at any time yet  did nothing  simply said call me if u have anymore problem.  I'm hoping to get someone who will help and listen..  Please if u know   let me know..   Thanks so much for your help as i live 2 hrs away from the Cleveland Clinic  and trips really bother me as i have other issues too..