Plaquenil---important info please read!

[irish]

I went to a new rheumy today for an assessment. I have a lot of issues with all my autoimmune stuff and my internist felt I needed to be assessed as he didn't know what to do with me.

Anyway, the new rheumy told me that he felt that I should be on Plaquenil and that I could take it as it doesn't affect people with white cell problems like I have. He said he would not have any problem giving an Aids patient Plaquenil and they have really bad white counts. That made me feel a lot better.

Anyway, we talked some about the Plaquenil and he says that he puts all his Sjogrens patients on it as the drug helps cut down on the incidence of Lymphome plus it helps reduce the inflammatory problems in the lungs. That was such a good thing to hear. I have read that they are getting more aggressive treating Sjogrens and this is really good news to me.

If any of you are having problems with your doctors maybe it would help to just print out my post and even do some searches yourself on google to back up what my doc told me. It may make a big different in your health.

He also told me that usually 50% of Sjoggies have fibromyalgia and while I didn't have a full blown case of it I had a lot of the trigger points that were tender plus the history I filled out informed him of my symptoms. He told me that if I decided to see him he need only see me once a year and that would be if I decided to go on the Plaquenil. I am sure this is because I am already diagnosed and have all the information documented. Irish

[maya]

Irish..so nice to know that your new Rheumy plans to put you on Plaquenil. I still remember you mentioning that you couldn't take Plaquenil or any other DMARDS because of low white blood cells. You even told you will give your right arm to be able to take!!!  So I can understand how important it is to you.

I really wish Plaquenil will work for you with no troubles.

Whey you said: "I have read that they are getting more aggressive treating Sjogrens" by "they" did you mean Plaquenil drugs or the treatment in general for Sjogren's??

Maya

[irish]

maya, Sorry,I didn't phrase that good. THe medical community is getting more aggressive about treating Sjogrens with Plaquenil and the DMARDS. The Plaquenil is the first med that is used and if that isn't tolerated or doesn't work well then they go to the DMARDS.

One of the reasons they are treating sjogrens more aggressively is that this disease is finally being taken seriously. They are now finding that sjogrens is more than the dry mouth, dry eye stuff and treatment is needed to prevent sjogrens from affecting other organs and systems. The central nervous system issues really need to be treated aggressively and with good reason.

Also, maya I don't know if I will keep going to the rheumy as I have the immunologist that I see every month. The doc today told me that my immunologist could also prescribe the plaquenil. Rheumy will send letter to immunologist and I see them next week for infusion so can talk with them about the plaguenil. Right now I have having stomach issues so I want to wait til I feel better before I start any new meds. I may have the flu, but really hard to tell. Irish

[eyeamdry]

WOW, Irish, thanks for this information!  About time "this" was taken more seriously.    I really hope that you can take it and it helps you.  Be sure and post later on if you've tried it.  Lucy

[kim31072]

Irish when you do start it expect about1-3 weeks of tummy issues(gas,bloating,diarrhea...often severe)...mine calmed down the first week...but it definitely happens...and the Dr's nor pharmacists usually emphasize how common and severe it can be...

I read lots of stories about people stopping it cause they thought they were getting a stomach flu....only to stop...let the meds get out of their system then resart only to have it start again...so I just rode it out...literally


Kim

[Scottietottie]

Hi 

When my rheumy put me on Plaquenil he said to half the tablet and take it every other day for a week, then to take half every day for a week and then to take a whole tablet every day and see what happened. I had not problems. In fact it didn't work - lol! I ended up on 2 tablets a day. Now, that, for me, works. I built up to the two as well though starting off with them on alternate days for a week.

Take care - Scottie 

[Rania]

I was told the exact same thing from my rheymy, and even though I don't like that rheumy too much because I think he lack in knowledge about Sjogrens, he actually was correct with this one. He put many on Plaquenil for just this reason,and i'm happy that he knew what he did that time!

Thank you for bringing this up Irish!! 

Rania

[Pooh]

Sounds good Irish, it just might help with the white blood cell problem also.  I don't know what it does but my white platelet count stayed up once it got above 100,000.  It's been dropping again, but right now my rheumy isn't concerned with it.  He just said "we'll keep an eye on it". 

I hope you have good luck with this.  Also if you take it with a snack or yogurt I found it didn't bother my stomach at all.

Take care,

Pooh

[lynnmarie219]

Hi  Irish,

I'm glad that you have been given the OK for plaquenil! If you decide to take it...let us know how it works for you...I hope it helps! Thanks for the info from your rheumy visit....its helpful! 

[Sandra]

Good luck Irish. I have a basket full of autoimmune stuff too, it really is miserable. I really hope it works out for you. I have been asked by my rheumy since 2007 to go on the plaquenil, I did for a month but felt really unwell so I stopped. I want to start again but am a bit nervous to. Also I have also been pretty unwell the last year and don't like to add meds until I'm feeling better.
I would like to know just what plaquenil does for each of you. I have been told it willhelp with fatigue but have not been told much other than that. If you are on it, do you still have all the issues we share about on this forum? What about your vision?thanks Sandra

[Scottietottie]

Hi Sandra 

I feel as though Plaquenil has given me more energy. It's also made my blood test readings almost normal and my eyes aren't as dry as they were according to a schirmers Test having been on Plaq for over 2 years. I've been lucky though - I have no adverse effects from it. I take 400mg with my breakfast every morning. Did build up slowly to that amount rather than taking it all in one go.

Good luck if you try it again.

Take care - Scottie 

[enela]

Hi

I was diagnosed with Sjogren three years ago.  Despite all the eye drops and Restasis, my eyes are getting drier by the day.
Because of this, my Rheumy recommended Plaquenil.  I have been on it for about one and a half months already.  I take one pill every morning.  I know it takes a few months to see results.

Before starting, I read the enclosed literature and was frightened by the stated possible side effects.  I now hope I don't need to take 2 pills a day to see results.

If Plaquenil fails, then I may have to consider plugs.  My dry eyes is making life irritating and uncomfortable.  I have to be away from the fan, air-cond, etc.

I really look forward to the day when I can have my 'old' eyes back

Enela

[Shari]

Enela~~~Truly understand your concern with your eyes.  Mine to have been getting worse by the day.  Hope that you have some relief.

Irish~~~Good luck and I am very happy that you have the go ahead.  I think I will give this info to my internist who has been reluctant to start me on it.

Take care  ~~Shari~~

[Patze]

Irish,

That is good news indeed - wahooo (and a rheumy that cares too!!!!) !

Patze

[Annj5]

Hi Irish,

I take 400mg plaquenil/day and initially had some GI problems with it as described by others. My solution was to take one 200mg pill with breakfast, and the other 200mg with supper. Seems to work well, and I know that after three months on the drug I finally did see some improvement with it, specifically my overall body aches.

Good luck with this - Julia