Hi Everyone,
First time posting. Onset of symptoms was Feb '06, but didn't get diagnosed until Sept '07. While one doctor was trying to figure out what was wrong, he put me on plaquenil in Oct '06 (still on). In addition, I was put on Methotrexate when diagnosed in Sept '07. I have now been on that drug for 4 months going from 4 pills to now 8 once a week. Lots of hair falling out and bruising, but that's it for side effects.
I have noticed improvements in some areas: my knees are so much better. I can now get on the floor! I also don't 'gel' anymore after sitting for a few minutes. But there are areas that have either not improved or have gotten worse: my fingers on one hand are still very stiff and painful. I have not been able to bend them in about a year. And now a finger on my left hand that was fine b4 MXT treatment is in bad shape. My ankle and wrist have gotten worse since starting MXT. The bottom of my left foot has lots of inflammation.
I was on prednisone for about a month. Started at 5 mg and then 10 mg. But after an adrenal test, my endocrinologist said to stay away from prednisone, so I went off of it. I didn't notice much help from it anyway.
So current drugs: Plaquenil (2 pills/day), MXT, folic acid. I would love to hear feedback. My quality of life is still not good. I just turned 34 and am out of work. I would love to go back to work! I would appreciate any feedback on next steps if any. I see my doctor this Friday.
Take care,
Nori
Hi Nori..welcome!
There's sulfasalazine you could ask your doctor about. Also, you could ask your doctor about increasing your mtx. How much of the folic acid are you taking?
Thank you, kelstev.
I have never heard of sulfasalazine, so I will definitely check into that. I just wonder at what point do these TNF inhibitors or biologicals (that I am naive about) come into play.
I had heard you need aggressive treatment within the first 2 years, and with the very delayed diagnosis I feel I missed out on that. I am very scared.
I am on 1 mg a day of folic acid. The hair loss has really bothered me. Will it stop if I keep taking MXT?
Right now I am on 20 mg a week of Methotrexate. (8/2.5 mg pills)
Thank you for your help!
Nori
Your doctor may suggest one of the biologics.
You may want to increase the folic acid...but as with any changes, you should talk with your doctor about that.
[QUOTE=nori king]
Hi Everyone,
First time posting. Onset of symptoms was Feb '06, but didn't get diagnosed until Sept '07. While one doctor was trying to figure out what was wrong, he put me on plaquenil in Oct '06 (still on). In addition, I was put on Methotrexate when diagnosed in Sept '07. I have now been on that drug for 4 months going from 4 pills to now 8 once a week. Lots of hair falling out and bruising, but that's it for side effects.
I have noticed improvements in some areas: my knees are so much better. I can now get on the floor! I also don't 'gel' anymore after sitting for a few minutes. But there are areas that have either not improved or have gotten worse: my fingers on one hand are still very stiff and painful. I have not been able to bend them in about a year. And now a finger on my left hand that was fine b4 MXT treatment is in bad shape. My ankle and wrist have gotten worse since starting MXT. The bottom of my left foot has lots of inflammation.
I was on prednisone for about a month. Started at 5 mg and then 10 mg. But after an adrenal test, my endocrinologist said to stay away from prednisone, so I went off of it. I didn't notice much help from it anyway.
So current drugs: Plaquenil (2 pills/day), MXT, folic acid. I would love to hear feedback. My quality of life is still not good. I just turned 34 and am out of work. I would love to go back to work! I would appreciate any feedback on next steps if any. I see my doctor this Friday.
Take care,
Nori
[/QUOTE] Plaquenil is a very mild DMARD so I recommend stopping that.
Hi Nori,
A little (sorry...novelette) background and then feedback to your meds question.
I am recently diagnosed. My illness began mid Nov. and I had diagnosis by early Dec. but my case hit me like a ton of bricks with all joints involved, serious inflammation so bad my joints were sweating. Pain cycles with level 10 pain that lasted from 11 PM until 10 the next morning. The doctor I was using...she didn't believe in pain meds- was giving me things people get after dental work. Didn't sleep for 2 weeks straight and got so weak I couldn't sit or stand unaided. I was a complete invalid. I was so scared.
She was giving me Methotrexate and Prednisone with no result. I finally told her off and she gave me oxycontin and sent me to my general practictioner to re-inforce there are no "magic pills" to get well. She prescribed Lunesta for sleep and then when I got some rest I was able to get a little stronger so my body could heal.
Jan. 4 I went to a new doctor. He kept my Methotrexate at 15 MG per week, upped my prednisone to 40 MG, 30 in AM, 10 at dinner and the very next day I was a NEW person. I became completely functional! I am stiff when I wake up but I can go from the get go. I am on no prescription pain meds and tried for the first time last night to sleep with out Lunesta. (rough).
I think what helped was splitting the prednisone dose out-it was wearing off during the night. I also take the folic acid and 1200 MG calcium with 800 MG vitamin D.
I haven't seen the doctor since- my appt. is next week. He very highly recommended that I use either Humira or Enbrel and gave me literature. I am afraid. I have a cancer history in my family and that can be a side effect. I am also terrified of needles- especially if I have to give one to myself.
I'm sure I'm on too high levels of prednisone and I still have stiffness in my feet, ankles that keep me in sneakers only, stiff knees and hands that don't close all the way, are clumsy and achy.
I think everyone needs their own special "cocktail" and then also have to accept change in their lives.
I too have been out of work and want to return so bad. My COBRA payments are 00/month and my disability claim hasn't even been approved yet. I'm 47.
Good luck at the doctor Friday- hopefully he'll make some med changes that will get you to your comfort zone.
Lisa
[QUOTE=Bird Girrl]Plaquenil is a very mild DMARD so I recommend stopping that.
Azulfadine as has been mentioned is a good DMARD but I believe pretty
mild too.
[/QUOTE]
Yes, I agree, these are mild, but a lot of times, when combined with mtx, they work quite well for some.
Welcome Nori,
You might want to ask the RD to give you Leucovorin for your hair loss. I've been told it works better then regular folic acid, although I think I'm having some hair loss too, even with that. Some people here take both, so that might also be an option. My understanding is that the hair loss stops only if you stop the MTX. Good luck. Many of us here understand how you feel and what you're going through. Hang in there and keep posting those questions.
I'd say it's time to give one of the biologics a try. When they work it can make a profound difference. I've been on Humira for almost 2 years now and it has made a huge difference, not perfect, but better than MTX without the side effects.
Lisa...don't know if you saw this post from LinB on another thread but take a look...it might reassure you about the cancer risk. No matter what we chose there is some significant risk, but the highest risk may be ineffective treatment! The shot is no big deal...it's a tiny needle.
Alan
No Cancer Risk from Arthritis Drugs?
Aug. 31, 2006 -- Concerns that the newer rheumatoid arthritis drugs used to treat the sickest patients increase cancer risk aren't supported, according to a new study.
The findings should reassure patients who take Enbrel, Remicade, or Humira. All of these drugs are so-called biologics -- meaning they are derived from living organisms. They are known as necrosis factor (TNF)-blocking biologics.
"If there is a [cancer] risk, this study supports the conclusion that it is a small one," says researcher Soko Setoguchi, MD, DrPh, of Harvard Medical School's Brigham and Women's Hospital.
Rheumatoid arthritisarthritis patients do have a higher than normal risk for developing certain cancers, especially cancers known as lymphomas.
But it has been unclear if this elevated risk is due to the disease itself, or to the drugs used to treat it.
Studies examining the highly effective TNF-blocking drugs have been mixed. A widely-reported analysis by researchers from the Mayo Clinic published late last spring found a threefold increase in cancer risk among patients who took Remicade and Humira. That analysis didn't look at Enbrel.
The Mayo Clinic research weighed data from nine studies that compared biologic treatments to placebo.
In the newly published study, Setoguchi and colleagues compared the biologic drugs to the traditional rheumatoid arthritis drug, methotrexate.
Drugs like methotrexate are known as disease-modifying antirheumatic drugs. They slow down rheumatoid arthritis and improve quality of life for most people.
In the Harvard study, 1,152 patients took a TNF-blocking biologic, while 7,306 took methotrexate.
The patients were all 65 or older. They were identified through insurance databases in New Jersey, Pennsylvania, and British Columbia, Canada.
Even though the biologic users tended to have more severe rheumatoid arthritis than those who took methotrexate, the researchers found no significant difference in cancer risk between the two groups.
The biologic users were followed for an average of 2.6 years, compared to 4.2 years for patients taking methotrexate. Setoguchi tells WebMD the researchers will continue to follow study subjects.
"We will need longer follow-up with a larger number of patients to provide precise answers," she says. "Until then, this issue [cancer risk] should be part of the decision-making process for patients who consider taking these drugs."
Dallas rheumatologist John J. Cush, MD, tells WebMD that rather than increasing cancer risk, TNF-blocking drugs may actually lower it, as well as the risk for other diseases, because the drugs target inflammation.
Rheumatoid arthritis is a degenerative autoimmune disease caused by chronic inflammation. It is most commonly associated with the joints, but it can affect other areas of the body as well.
Meanwhile, inflammation has also been implicated as a possible cause of certain cancers, and even heart diseaseheart disease.
"A question that is just as important as 'What is the risk of this therapy?' is 'What is the risk of this disease?'" says Cush, chief of rheumatology and clinical immunology at Presbyterian Hospital, Dallas.
"Depending on how you view the studies, there is either no risk or a marginally increased risk of lymphoma associated with taking these drugs," he says. "But we know that they have a dramatic impact on quality of life for many rheumatoid arthritis patients who are disabled by the disease."
Hey Lisa -
I'm with the 'stay in with the mildest drugs as long as you can' group - and I am sooooo in agreement about quality if life.
There are a good subset of us that use antibiotics to control our RA. I had some damage occuring to one toe (talk about something trivial to get all worked up about :-) but it's returning to it's normal position on continued use of AP (antibiotic protocol). If you want more info, PM me or lurk at www.roadback.org. Also, we have an AP thread here that you might find interesting. The subject line is "Requesting all new APer's" or something real similar. You might read that from the beginning to get a feel for this treatment option.
Whatever method your research leads you to...welcome to the board.
Pip
Hi Nori,
I'm not a doctor but my experience being on mtx is that one of the ways it effects me is to cause large lumps under my feet which get terribly inflammed and nodules on other joints that really hurt. I had three huge lumps under each foot for years and was like walking on three golf balls. I was then taken off mtx for a few years and then they eventually went away. I was put back on it as the other medication caused skin cancers and guess what, I have one growing back and nodules on other joints. So I'm wondering if some of the problems you are having may be something like that - but of course you need to ask your doctor.
Good luck!
Thanks to both Alan & Pip for the kind welcome and new info to chew on.
All of a sudden out of no where there is so much to consider....
Hi Wannabe! LOL - Just joking with your name!
Did you post your introduction so we can all say "HI"?
Hugs,
Pip
No Pip- how do I do that?At the top right of the page are buttons. One is reply and the other is New Topic. When you hit that a new post is started and you get to pick a title etc.
Hugs,
Pip
Hi Everyone,
So I saw the rheumy today, and she wants to add Enbrel to my meds. She said it's a shot once a week. Does anyone have any feedback on this?
I mentioned maybe first increasing to the MXT shot, but she felt it would only provide a small amount of improvement. She said for me to see significant improvement, Enbrel would be her advice. When I asked her how long I would need to be on the drug, the answer was they only take people off if they have to.
Thank you for your time and advice!
Nori