I have had Rheumatoid for almost 10 years. I did not know about it until 2000, my doctor forgot to notify me. So I did not get an early jump on this disease and it is taking it's toll. I have been on methotrexate, prednisone, sulphasalzine you name it and now placquenil. I wanted to be put on something that would give me some energy because I absolutely have not an ounce left. Has anyone tried this and did it work for you? Any advice would be so appreciated. Thank you
I took it in the early years.... with sulfersalazine at the same time. But I am surprised to hear you are just now taking it. I was under the impression that this was one of the early routes they took and moved on the things like MTX later.
I'm now on MTX and Humira and that has done wonders for my energy level. I got my energy back in the first few weeks after starting humira and nothing has ever been able to do that for me before.
I hope this newest treatment works for you. All of us are different and what works well for one of us will not work at all for another.
OH; and welcome to the board Franny...that was quite rude of me. We're glad you're here.Thank you so much. I do not go to a specialist because of money issues. So I think my doctor is winging it, or it feels like that sometimes. I just made an appointment with an RA specialist but cant be seen until October. I have to apply for Charity. How do you afford the Humira, and when you took Plaquenil did it help and did you have any side effects. I feel like I take a billion drugs and still feel like a mack truck has hit me. I am so very envious of you and happy that you have energy. Oh what I would not give to feel good and run around again. Is MTX methotrexate?
Hi Franny, welcome. Yeah, Mtx is methotrexate. Sorry to hear about the money issues, must be tough with all the Med and Doc bills. Its a pity you have to wait until october to see a Rheumy, but at least your on the right track and thats good.
Its been a while since i was on Plaquinal. What i do remember is in the first few days of taking it, my eyes were slightly sore and dry, but this passed. I found its better to take plaquinal with your main meals, it can upset the stomach a little, especially if taken on an empty stomach. After about a year and a half on it, i became photosensitive to the sun ( burned very very easily!! ) so i had to go off it. Its something to watch out for. Make sure your Doc sets up an appointment with an eye specailist aswell if you stay on plaquinal for more than 6-9 months. It can cause problems with the back of the eyes, this is rare though ( my own rheumy had only ever seen 1 case of it in the last 10 years! ). But it still has to be checked for.
Best of luck with it, i really hope it works out for you.Dear Franny, I am sorry that it took you so long to find out that you have RA. I am newly diagnosed and was just prescribed plaquenil. I will take my first dose tomorrow. I am also starting celebrex (which I took today). I also feel extremely tired and don't feel like doing anything. I am hoping and praying that the plaquenil helps. Keep us posted on how you are doing. Love and gentle hugs, JuliahFranny,
I have been on plaquenil many times throughout the years. It generally works really well for me but then it just stops so I go off it and restart it at a later time. ( but thats just me )
Anyways he usually takes about 3 months to notice anything because it has to build up before it starts to work. Thats what stinks about it but once it works--like I said it works fairly well. I noticed that it did give me some energy also--or it was just that I felt better. the other person was right about the sun too. Stay out of it when you are on this or at least use a really good sunblock and sit under the umbrella!!!
I know sun feels good when you have arthritis so its hard to totally stay out of it.
Good Luck!!!
Franny; I have health insurance that covers most of my Rx medications. Humira alone with out it would be slightly over 00 a month. There is no way on earth I could take it without my insurance. My MTX would be about 0 a month (I'm not 100% sure on that one) so fo rme between the two of those I pay about a month in co-pays for just those two.
I'm going to check around and re-post a list of agency that offer medication assistants. My heart breaks for all of you that have such a hard time with this because in the early years I was exactly where you were. I spent close to two years before I was dignosed because I was afraid to go to the doctor and get labled with a "pre-exsisting condition" before I could manage to get my health insurance. It's so, so difficult.
Plaqunil did work for me in combination with Sulfersalazine; but over time everything I've ever been on eventually loses it's effects. The thing is once you get the RA under control whether it be with Predisone, Plaquil, Humira, Enbrel....whatever will work; the fatigue will get better. It's just a sign your disease is active I think. I won't say I don't ever feel the fatigue...because I do; but it's not like yours and I know because I've felt like you feel. It's the worst part.
Hang in there girl; and look for that post about the medication assistants. I'll see if I can find what I posted before.
Franny, I guess it gave me some energy, but its hard to say. I was only in the early stages of RA at the time, and on alot of vitamin supplements. As for the price of meds over here, well, it works a little differently than it does in the U.S. Ireland doesnt have a big population so the government covers the cost once it goes over €85 in a month ( about a 0 i think ). My heart goes out to all of you who have to apply and go through insurance companies, i cant imagine how hard that must be.
I see Lovie's posted some links for some agencies, hopefully you can get the help you deserve off one of these.
Hopefully the Plaquinal will work for you, all the best.
To all of you that have responded to me thank you so very much. I appreciate it more than you can know. I just threw my bottle of Pacquenil in the toilet. I had the most horrifying headache I have ever had my eye's hurt so bad. My arthritis is so advanced and I know that is for the begginers. Lovie I would appreciate a list of help that I might get. I could sure use it. I find that I am so emotional right now and probably feeling too sorry for myself. I just want to be ok again. And I know that is not going to happen but if I could have some energy that would be o.k. I feel useless in my home and I am lucky I have a family who is so loving and understanding. I get tired of me saying that hurts so I can imagine how tired they are of it. I am so glad I signed on here and to feel some sort of strength from all of you. I pray one day I will feel as good as most of you sound. Again thanks for your loving thoughts I sure need them. Your all the bestI have been on Plaquenil for 10 years and antibiotics for five. The Plaquenil really held off damage. I just started getting damage when I cut back on the Plaquenil ( BIG mistake). I have never had any side effects. I don't know how effective it is now since I do take antibioitics, but my rheumo told me to stay on it until all labs are back to the normal range. I am close to having normal labs, but will stay on the plaquenil.
It did take about six weeks to notice a difference. I still had pain, but it kept pain to a minimal level.
I have always taken the generic form.
Leslie
Lovie where do I look for the post of agencies that will help. I am new and not to sure how to get around here yet. ThanksFranny;
These are the agancies I posted for you.
https://www.helpingpatients.org/Intro.php
http://www.needymeds.com
http://www.themedicineprogram.com
http://www.medicationfoundation.com/
http://www.freemedicineprogram.com
http://www.rheumatology.org/public/acrast.asp?aud=pat
I really haven't done any research on them and I don't have any idea what the requirements are but it's certainly worth a try. Never hurts to do a little research. You're going to be ok Sweetie. Right now you are in so much pain it's causing you emotional harm as well and that makes everything even harder to cope with. We've all been there at one point or another. Don't give up. It gets easier. Eventually you'll find some medication that works well for you and things will start to look up. Just take one day at a time right now. You only need to worry about today right now...don't think too far ahead; at times that can just be too overwhelming. One day at a time. Try to get some rest. That's so very important for all of us.
We're all here for you.
Lovie
HI FRANNY, WELCOME TO THE SITE. I DON'T GET ON HERE TOO MUCH SO I'M KINDA LATE WITH A COMMENT.
I'VE BEEN ON PLAQUINIL AND METHOTREXATE FOR ABOUT 2.5 YEARS AND JUST RECENTLY THE DOC TOOK ME OFF THE PLAQUINIL AND WANTED TO SEE HOW I'D DO WHILE JUST TAKING THE MTX. I'VE BEEN OFF THE PLAQUINIL FOR ABOUT A MONTH AND DON'T NOTICE ANY DIFFERANCE IN HOW I FEEL.
I DO FEEL TIRED AND KIND OF DOWN AT TIMES WHERE I'M TOO TIRED TO DO MUCH AND I'M SORT OF IN MY OWN LITTLE WORLD AND DON'T CARE TO GET TOO INVOLVED WITH PEOPLE. I'M FORTUNATE TO BE RETIRED AND IF I'M FEELING TIRED, I DON'T DO ANYTHING. I KNOW THIS WILL PASS AND I'LL HAVE ENERGY BACK AGAIN IN A FEW DAYS. I GOLFED YESTERDAY AND HAD ONE HECK OF A GOOD GAME (if i do say so myself) TODAY I ACHE IN MY LOWER BACK SO I'LL JUST TAKE IT EASY.
I WAS UPSET WHEN I HEARD I HAD RA AND THOUGHT I'D END UP IN A WHEEL CHAIR, BUT THE DOC ASSURED ME WITH THE MEDICATIONS AVAILABLE TODAY THAT WOULDN'T HAPPEN, AND IT HASN'T!!!
JUST LISTEN TO YOUR DOC AND YOUR BODY, AND YOU'LL DO JUST FINE. WELL I'M RAMBLIN AND BABBLIN NOW, SO I'LL JUST SAY,"GOOD LUCK AND GOD BLESS"
DON
Thank you Lovie and I agree with you. Nothing ever stays the same. I will look into each one of these and see if they have anything they can offer me. It's worth a try! Again thank you for your support.Thank you Donn for your response. I have noticed that it is kind of like a roller coaster ride. I will feel real good and have some energy and then I go down again. I feel that prednisone helped but my Doctor does not want me on that all the time. I have been on methotrexate and it made my bones ache. I have had this for almost 10 years but really in the last 4 it has been effecting me really bad. I walk like Ozzy Osbourne and certainly cannot do any activity that requires a great length of time. I know and hope this will pass soon. I am glad you had a great golf game. You go!Lovie,
I came in contact with a patient assistance program Humara has. I can get it free after I do the paper work to show I cannot afford to get it and that the insurance I have now does not cover it.
I'm so excited for you....this is a huge accomplishment. Keep me posted on how it turns out.
Thats fantastic news, delighted for you.
You should also check on the assistance programs offered by the companies of the other biologics other than Humira (Enbrel, Remicade and Kineret.) They're all terribly expensive - according to a website I saw, ,800 to ,000 per year. But you may need to try something else until you find the right combination, so why not have their assistance programs in your back pocket of information if you need it some day.
Now let me climb up on my soap box for a moment, if you don't mind. You say your insurance company won't cover Humira, nor will they cover a specialist. Why the heck not??? I assume you're paying the insurance company a premium. For what? Do they cover no specialist? What if you wanted to go see an OB/GYN? Would they deny that as well? This is crazy. I see no logic here. I feel bad enough for those without insurance, then we hear from someone like you who has it, but it's essentially useless! Whew...I feel better now.
One more thing. I love the advice you got from our friend the golfer. Allow yourself to rest when you can. I try to catch a little snooze every day. It helps. And don't let yourself [or anyone else] think you're tired just because you're lazy. It just ain't so.
Take care.
I don't know the first thing about "insurance" coverage from states. Apparently, they don't help a whole lot. But hopefully, you'll be able to get assistance from the companies who make the drugs.
And to answer, yes, you're doing it right. Find the message string you're interested in, then just reply in the box below it. Or if you want to, you can send a private message to the person, like you're gong to try doing for me as a test.
Franny;
I think you're headed in the right direction looking for financial assistance for your medications. That's what you need...your medications are not helping you at this point; and I understand what you mean by not wanting to take them anymore when they appear to not be working. Who wants to waist much needed money on something that doesn't seem to be helping? Make sure you relay this information to your doctors and be honest about your financial situation as well.
When I was a single mother my doctor knew very well that a great deal of my stress was related to the added burden my illness had on my situation. Even if you just take NSAIDS the cost can be outragous for a single mother that lives pay check to pay check and struggles to just buy groceries for herself and two fast growing children.
My doctor has always sent me out of his office with a bag full of samples and often choose medications that definately has a generic brand. He tried to steer away from things that were too expensive for me at the time. He may already know; but if he doesn't he may have more suggestions for you about applying for extra assistants.
Franny, certainely being on so many different drugs has its complications, as many of us are all to aware. We're all " stuck between the devil and the deep blue sea " as my grandfather was fond of saying. It takes time to find the right combo of Meds to suit us, which can be VERY frustrating. At least come october you'll have an appointment with a rheumy, who deals with this day in day out. Its a good step in the right direction for you.
So, keep your spirits up girl, you'll find a balance with it before long.
Oh, that pictures an eye, i think!!!!!!
Keep smiling
I cant seem to send you a personal email. I tryed. I was not sure if you just answered straight from here or what. Hope there is'nt anything wrong with your computer. Have a good day!