Okay folks- here is a question for those that have any insight to offer ;)
I have been on the following medications for 1.5 years now: methotrexate (20mg/1 week), naproxen (2 x500 mg/day) and sulphasalzine (2x 500mg/day).
I was told my by rheumy that when I started the metho/sulpha that the naproxen was to deal with the pain until the other 2 "kicked" in.
However each time I try to cut back on the naproxen, my flares just RAGE. It was my understanding that the DMARDS are to suppress the immune system enough so that the damage/pain/inflammation is kept to a minimum.
Does this mean that they are not doing their job?
I still do have break through pain- some days more than others...
We have tried to up my sulphasalzine to 4x 500mg a day, however my blood work was digressing and so she had to pull back.
Now I feel like in am stuck between a rock and a hard place. Up the medications and my body shuts down- keep them as is and the disease does damage...
At first I was devestated as I thought the naproxen was just masking the pain, but now I am thinking maybe the naproxen is keeping the inflammation at bay...
I got put on MTX last spring when it was clear that Plaquenil and NSAIDs were no longer sufficient. We kept increasing the MTX, but with no real change, and constant nausea. I was switched to leflunomide 2+ months ago, and having a much better response to it. Still side effects, but manageable and I am off the NSAIDs for the first time in 5 years. Every time prior to this that I have tried to go down to nothing it has been disastrous. I wonder if the doctor wouldn't consider switching meds. Leflunomide is another DMARD in the same class as MTX.
I suspect the naproxen is doing a stopgap job of cutting down on your inflammation. You might want to try the Leflunomide (brand name Arava) instead of the MTX. But, if you are not having good results you might want to push to try a biologic.
I try the same thing but wind up staying on the naproxen. Your rheum may up your MTX. As for sulfasalizine as far asI know , it is useless.
I started out with naproxen for 6 months added MTX for 6 months added Arava for 18 months then onto humira and dropped the arava and upped the MTX. I still have to take tylenol and very occasionally narcotics.I was fortunate and got to go onto a biologic because of severe enthesitis.
In Canada you have to fail on 3 dmards before getting onto bios. What does your rheum say? Have you asked about getting off the sulfasalizine? Naproxen is a good nsaid but you probably need a better dmard :)good luck
From my understanding the Sulfasalazine is protecting the joint from further damage but it does not stop inflammation so that’s where your NSAIDs come into play. I’m not sure I’m much help with your query but it seems you need the anti inflams to control the flare ups… Much like my situation. Im on the 4 x 500mg of Sulfasalazine and I’m conscious of drinking plenty of water to keep my kidneys & liver in check. Good luck with finding the balance!
You are just going to freak out .. when I tell you the medications I am on.... and still trying to find relief.
I take Lyrica 150 mg 2x day... for Fibro... 20 mg Cymbalta for Fibro 5/325 500 mg Naproxen 2x day. Vicodin for pay 2-3x per day as needed.. Arthritis pain Formula Acetiminophen 650 mg. twice a day..and now they will start me on Enbrel for the PsA. I sure hope I get some relief soon...
I will keep everyone posted.. If it wasnt for this site.. I think I would literally lose my sanity.. it keeps my spirits up.
My doc told me that I will always have to deal with pain, no matter what meds I'm on. Now I'm on Enbrel, Arava, and Tramadol/Percocet as needed. DMARDs keep the damage from progressing, but that doesn't mean you won't have pain. My liver enzymes are often high, but not always, and they're not at a dangerous level. My doc keeps a close eye on them, but I've never had to quit my drugs because of them. Did you know you're not supposed to drink anything alcoholic when on these meds? It's too hard on the liver. Hope you feel better soon!
Elle, that sure is not what I wanted to hear... just going to begin on Enbrel... need some relief.. or i wont be able to keep on working..... ughhhhh..... thanks for the info tho.
It is a strange disease, to treat as well as to suffer from ...I am on 3g (6x500) salaz and anti inflam but it took a long time for it to work, and it's a part-time worker lol...hope you get meds to suit and help you soon, stick in there in the mean time my friend and good luck
My meds worked for a while then seem to stop working. I never felt like they worked well enough for me and I actually think that I was getting progressively worse as well. I had to fail three treatments first and meet the Australian criteria. I am about to start on a biologic next week and I am so hopeful because of this site.
Your pain will get better, but there will always be flares! I have had this disease for a long time, so I need to take pain medication daily. But I don't mind that; in fact, I'm thankful that I live in a time where these medications have been discovered! Can you imagine having this disease 100 years ago?!?!?!? Hoping the best for you!
You might want to ask about a TNF blocking agent such as Enbrel, Humira or Remicade. They help with inflammation. Don't worry about side effects as most people don't have any but they have to list everything according to the FDA. It sounds like you need more than a DMARD. Hang in there- things will get better. Keep pushing your doctor for TNF blockers if you are having so many flares.
Okay - so maybe its crazy - but the prozac that my daughter was put on last week is making an incredible difference. Lauren is out of bed, happy, and moving. I guess treating the depression was important. She sees the rheumy next week to talk about the "antibiotic therapy" that was mentioned on this site awhile ago (The Road Back Foundation). I am fairly sure that the rheumy will say its "whack" - but at 21 wouldn't you try anything so you could to stay away from the hard stuff for as long as possible? We'll see what happens. Right now she is just on the naproxen and prozac - she weened herself off of prednisone (took it for about 9 months) and MTX (took it for about 3 months).
Think about the "hard stuff" a different way. Each month and year your daughter is in an uncontrolled flare damage is happening. Waiting for the antibiotic treatment to work (it can take quite awhile if it does anything, sometimes years), your daughter can have permanent damage that she will have to live with for the rest of her life. At only 21, that is a lot of years living with damage. And she will have more as the years go on.
Hitting this disease hard and fast can prevent permanent damage before it starts.
I'm speaking from experience. I was diagnosed at age 10 and am 40 now. Medications have improved SO MUCH. The biologics (Enbrel, etc) have completely changed treatment and outlook on this disease. When I was dx there was aspirin, and that's it. I have damage from those pre-biologic years, plus damage that has happened since piled on top of that. I can't imagine not taking advantage of the treatments available today.
Karen said:
Okay - so maybe its crazy - but the prozac that my daughter was put on last week is making an incredible difference. Lauren is out of bed, happy, and moving. I guess treating the depression was important. She sees the rheumy next week to talk about the "antibiotic therapy" that was mentioned on this site awhile ago (The Road Back Foundation). I am fairly sure that the rheumy will say its "whack" - but at 21 wouldn't you try anything so you could to stay away from the hard stuff for as long as possible? We'll see what happens. Right now she is just on the naproxen and prozac - she weened herself off of prednisone (took it for about 9 months) and MTX (took it for about 3 months).
Me neither. Well said Marissa. I have had PsA for at least 30 years perhaps from birth. I did not recognize it until 2008. I took myself to Rheumatology and was diagnosed and started mtx and biologics. I felt bad I had missed it for so long then realized until the biologics came around it wouldn't have made much difference anyway. Your daughter has a chance of having less pain and immobility. Encourage her to research her options now that she is feeling better. I am so glad the Prozac is helping. Depression is common in auto immune diseases. I do not know why but the SSRI help so much in coping with it. I am so glad for you and your daughter.