Plaquenil seems to be a "wonder" drug, but I can't take it! What to do?

[Rose G]

Hi All,  Just had the blood work the rheumy ordered, at my request....waiting for results.  But, I had to stop plaq after 7 weeks due to blurry vision.  I keep reading that it is soo important to help slow the progression of SS.  What am I to do since I can't take it?  Mr rheumy and I agree that right now I am not bad enough to try MTX, but guess I would when I get there.  But what do I do meanwhile?  Just let it progress?  I know many people say this thing can be "managed" with meds and OTC stuff, but what if you can't take the meds?

I will see rheumy end of April and my GP and will discuss it, but I feel soo helpless, not being able to take something that really helps a lot of people.  I don't want this thing to progress quickly, I would like to slow it down!!  Does anyone believe that supplements can accomplish this or do they just help with some of the symptoms?  I know some have suggested a smaller amount of plaq and work up to higher doses.  I am going to ask rheumy about that, but I am thinking if it was stomach upset or some other thing like that, that it might work to try to get used to it.  But because every dose made my eyes very blurry, I don't think smaller doses will make a difference.  I think if I didn't get blurry eyes with a smaller dose, I still would when it increased.

Oh and this is strange, I did not have much joint pain at all with my SS but I swear since I stopped the plaq, I have some sort of pain in just about every joint!!  Think this could be some kind of "rebound" reaction?  And will it (I am really hoping) go away on its own?  This really has me upset as I did not need anything more and was happy I was not one that suffered a lot of joint pain!

[HL in NY]

When I went off of Plaquenil, my Rhummy put me on another Anti-Malerial called Azulfidine (Sulfasalazin). It's primarily used to treat IBS but it also works for people who can't take Plaquenil. You might want to discuss it with your doctors.

As for the joint pain, often times Plaquenil starts working so gradually that you don't notice how much it's helping until you're off. You might want to talk to your doctor about some kind of anti-inflamitory to help with the joint pain.

Also, I take Fish Oil and drink Tart Cherry Juice every day as suppliments. I'm not sure how much they're helping, but I'll take all the help I can get.

I'm hoping your doctors can get you some relief soon. With the spring, I know my symptoms have  come out of dormancy and it's been harder the last few weeks.

Heather

[Jellyb]

Hi there, I mix powdered vitamin C with a liquid silica and water every day, that is supposed to help with connective tissue and inflammation. Also fish oil twice a day, borage oil and flax seed oil and I sprinkle flax meal on my fruit.
I really hope this gets sorted out for you. I really hope this gets sorted out for you.

[Joe S.]

There are a lot of alternatives that you can use to manage your symptoms. You can start by checking the supplements in my signature. I will be gone for the weekend but you are welcome to PM me.

[irish]

I am wondering how bad one has to be to start methotrexate??? I would think that if you started taking it now you would have a better chance of improvement. You wait until you are really ill and then it may not work as well or it may take many more months to work.

I was put on methotrexate in 2004 and was only on it 3 months. I did well on it and wasn't sick from it at all. I have a picture of me from the family Christmas and I looked the best I had looked in several years. Unforunately, I had to quit it because of mycobacterium kansasii which is a disease that only people with low immune systems get.

It was assumed that the methotrexate caused the problem. After the one year of treatment for that infection and about 2 months after I had finished all the medication I was diagnosed with low t-cells which really ramped up my chances of getting infections.

I was not all that sick when I went on the methotrexate, but I ached all over and had a ton of issues plus the fatigue. The methotrexate really made a huge difference. I even put make up on that Christmas and was more interested in life---all because I felt better!!!!Irish

[gurs]

I hear you on the progression of this disease..not to alarm you, but I was on plaquenil for years and decided to stop on my own because I thought
it was doing nothing. I was also into all the "alternative therapies" and supplements etc and went to dozens of holistic docs and tried everything I could...but
3 months later, all heck broke loose..all the neuro issues started, hair loss, joint pain, etc. I think this drug really halts the progression of the disease.

Im all for alternative medicine, and still take alot of supplements that really help, but I still rely on regular medication. I try to do the most natural as possible, but
sometimes that doesnt cut it.

Good suggestions from others...maybe a lower dose of metho or something???

Gursie

[deeindiana]

I can understand your worries. I have a similar problem. The first two times I tried to take Plaquenil I got horribly sick at almost exactly the 6 week mark. The third time I started with a very low dose of 50mg a day. Now I'm up to 100mg a day but anything higher makes me sick again. I asked my rheumy and he said that a little Plaquenil is better than none at all, so to keep at it. He also wasn't ready for me to take MTX, but he didn't explain why.
I hope you find some answers!
Deb

[dbaratta]

Just a little insight - I tried the generics for Plaquenil and had some vision issues and it didn't work well for the pain/joints.  Dr. told me to try the brand Plaquenil and It took a few months for it to actually kick in but feeling SO much better.  He explained that some people have trouble with the distribution of the med because of the fillers, etc. used in the generics.  Worked for me.  Good luck.

[gurs]

my doc told me the same thing...only brand name plaquenil...I have trouble with ALL generics..they sometimes use cheap fillers, etc. Seem to be allergic to alot of them as well.
If your insurance doesnt cover brand names, your doc can submit request to insurance explaining generics dont work etc. Sometimes they will cover it then.

Gursie