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 ;D
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!!! ;D 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
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 ;D
WOW, Irish, thanks for this information! About time "this" was taken more seriously. ;D I really hope that you can take it and it helps you. Be sure and post later on if you've tried it. Lucy
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 :D
Kim
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 :)
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 :)
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
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!
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
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 :)
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
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~~
Irish,
That is good news indeed - wahooo (and a rheumy that cares too!!!!) ;D!
Patze
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
Hi, I haven't been on here for a while. I started on plaquenil and it really helped. I felt an immediate decrease in my inflammation, especially in my lungs. My labs completely leveled out. My wbc was low and went back to normal and my differentials all balanced out. I have been reading about sjogrens and I am a little confused though. It is so similar to lupus, but it isn't lupus. How do they know that it isn't lupus? I had a flare up and went through a whole cycle of symptoms, but it started out with sores on my arms that looked like the lupus rash. They lasted several weeks and left a faint scar. Does this happen with sjogrens? Also, now I have hand tremors and have to go to a neurologist. I don't know if it is from the lyrica I'm taking or my advair inhaler. I am on so many medications at this point, I don't know how they can tell what is meds and what is my nerves being affected. Should I be concerned?
Cherise, Sjogrens can have skin rashes also, and yes, the docs have a terrible time sorting out the Sjogrens and the lupus. The rash with the scarring is something that needs to be sorted out I would think. It might be that you need to get Dermatology involved also. I had bad rashes on my arms about 3-4 different times that ended up needing to be treated with antibiotic plus cortisone cream and then the last time needed cortisone tablets plus stuff for fungus infections. My dermatologist did a skin biopsy at the time of the outbreak and I got a diagnosis of Bullous Pemphigoid which is another autoimmune skin problem. I did have a little bit of scarring from that rash.
Lupus can also just affect the skin and that rash can have scarring with it also. Really hard to sort all this stuff out and needs all these doctor appointments. Good luck! Irish ;D
Cherise, What kind of low white count do you have. I have severely low t-cells and low normal IgG subclass 1 and 3. Doc thinks it is hereditary. I am concerned that this will cause issues with the plaquenil. My new rheumy was ok but I seriously doubt if he is 1/4th as smart as my immunologist. I would tend to agree with my immunologist first. Thanks. Irish ;D
Get the plugs put in...it's not a big deal...you will know very quickly if it will work...I could tell a huge difference in a day
Hi Irish
Glad you have got the opportunity to try Plaquenil - only time will tell if it suits you.
I started out on 200mg twice daily last year but after 3 months dropped down to just once a day as I was feeling nauseous and generally off colour. However, the beginning of the year my tiredness increased so I've upped the dose again. Must say it does seem to improve things, but a massive plus for me is that my eyes are nowhere near as dry since starting the drug - so much so that I can even tolerate the ocasional contact lens wear for special occasions which would have been impossible before starting on it.
Just hope it works for you - I'll keep my fingers crossed.
wen, I have not had a chance to talk with my immunologist yet. I talked with the nurse when I was up for my IVIG infusion this month and she said that I should just wait and talk to him when I see him in June. It is not an emergency and I am definitely not as ill as so many of his patients. Time will tell what happens. Right now I am waiting on another sputum culture as I have a sinus and lung infection that is so weird. I wonder if I have a weird bacteria again and I know I have a yeast infection. If the culture was not enough to grow anything I will be going to the doctor again tomorrow. Oh joy!!! It will be a long night I am afraid. Irish ;D
when I was first diagnosed in 1999 my rhuemy told me to take this pill (plaquenill) I said 0k not knowing what sjogrens really was. I don't remember taking smaller doses to get into my system I just took two pills a day. I do remember having alot more pain like my knees and my ankles swelling and going up and down the stairs on my bum. At that time I was going through a really stressfull time with my pending divorce and my children very young. I also remember having joint issues. My eyes were really gritty and dry I went to the school of optometry and they promised me plugs in my eyes. I finally had tears but not when I cried. A few years went by and I thought that I could do without the pills. I think I was fine for a year and then the pain started again. My rhumey put me on the methotrexeate and blood work every month. I didn't want to be on the methotrexeate I was scared of something else going wrong. well I have been on and off of the methotrexeate for about a year now and boy am I paying for it I am in so much pain that I am sick of myself. The other reason I went off the plaquenill was because I convinced myself that the plaquenill caused my dry eyes and mouth because I did not have any symptoms before starting the plaquenill. I am really mixed up right now. I am contemplating going back on the plaquenill to see if that helps me. I blame myself for the pain because if I would take the medication like the doctor said I should I may be OK. And then there is the issue of weight gain since I started on the methotrexeate I have gained 12-15 pounds all in the belly and hips area and that adds to my frustration. I really need a quick fix and I know there is none. Now the only thing that is really helping me is my best friend Ibuprofen I take 4 pills(800mg) in the morning to get my day going and then I take the same in the evening because I can't stand the pain when I am trying to sleep even the covers are too heavy to pull up over my shoulders. I have to make an appointment with my rheumy but that is a day off work he is an hour and a half away.
ejvisneskie, Most docs start Prednisone to get peoples symptoms under control and I would think that is what you need to do as it sounds like you are spiraling out of control. Then they start the Plaquenil. The plaquenil takes a long time to kick in but when you sympoms are better the doc would probably taper your prednisone dosage down. The goal will be to get off of the prednisone and just be on the Plaquenil.
The fact that you had the dry eyes when on the plaquenil was probably due to the fact that the med had not kicked in yet and your sjogrens symptoms had gotten worse. The plaquenil doesn't cure but it inhibits a lot of the inflammatory stuff that affects our body. The joints and muscles are usually helped and many people say that the fatigue is better on the plaquenil. The vision needs to be monitored when on plaquenil but any problems is very rare because of the low doses people are put on. Generally an eye exam is needed 1-3 times a year depending on the doctor. Also, the vision problems seem to be reversible when the medication is stopped.
If you are having dry eye problems Restasis is the drop that is prescribed for sjogrens. It does help, but again, it takes time to kick in as in several months. The doc should also order prednisone eye drops to take prior to putting the Restasis in for a certain number of days. This helps decrease the inflammation and helps decrease the burning. The reason our eyes burn when we use the Restasis is because our eyes are so dry and irritated. We also need to use regular drops like Refresh abaut 15 minutes before we put the restasis in and 15 minutes after to help with the burning. The burning gets better as the eyes heal.
Also, many people have been on Methotrexate with good results. The liver function has to be checked every few months and folic acid is also usually given as it helps to decrease the nausea and yukky feeling that can occur. Good luck. Irish ;D
I have been taking 400mg Plaquenil daily for about a month and a week.
Of course no one mentioned to split the dose between morning and evening or to start slowly and wean myself on...
so I have the gas, bloating, digestive upset, etc. but will keep on with it because the body aches and fatigue are so debilitating!
Honestly, I don't know what I will do if this doesn't help me. And by "help me" I mean STOP MY TEETH FROM CHIPPING OFF TOO!!
I feel like I'm in one of those nightmares where you find yourself naked at work (insert crumbling teeth, intense joint pain and fatigue for naked) and wishing I could just wake up.
janna,Sorry to hear that you are feeling so poorly. Have you checked with your rheumy about dividing your dose and take 200 morning and 200 at supper or so? I know many of the people on this site have had trouble with the one time a day dosing and gone to the 2 times a day.
I have gone through the teeth thing and ended up having all my teeth pulled. It was such a relief as I spent to much time and money at the dentist. I sure had to fight to get them pulled though. I really think that people with sjogrens should have an easier time getting their teeth pulled. All these bad teeth trap the bacteria and make the chance of infection so much greater.
Hope you can hang in there with the plaquenil as so many people have had improvement in their health. Good luck. irish ;D