Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Just looking to get some opinions and thoughts on my situation. So please just feel free to let me have it. I'm currently on plaquenil only twice a day and have been on this regimen for a few months now. I had to stop the mtx sometime back because of elevated liver test. I have had bloodwork a few times since and my numbers retreated back to the normal level. The last visit with my rheumy we had discussed possibly trying a new dmard or possibly a biologic. He seems to think the plaquenil is to mild for my condition. Well last visit I didn't want to start anything yet because I was scheduled to have some major dental work done and didn't want to squash my immune system. I had my dental stuff done in January and all is good now with all that out of the way. Anyway I feel like my visit coming up next week that he may wanna ad a biologic. Now on to why I'm stuck on the fence.
Right now I am making it pretty good on the plaquenil. I still have stiffness and pain on a daily basis but it's tolerable and currently doesn't affect my everyday life. I haven't had to miss any work due to ra and my job is pretty physical. I have had a rough day here and there but most go pretty well. I actually ran my weedeater for about three hours today and my hands feel fine this evening. I'm not sure if my symptoms have just weakened some, the plaquenil might be working, or I'm finally getting use to my new normal. I feel comfortable on the plaquenil and haven't had any negative side effects from it so far. I just picked up a bug that's been going around at work and I'm not totally freaked out because I know the plaquenil hasn't completely devastated my immune system like the bios can do.
On the other hand I know if I don't treat it aggressively then I stand a good chance that my current situation might slowly or fastly get worse over time. Next thing I know I have permanent damage that I might could have prevented if I would have got straight to the point. It's just tough for me to take some strong meds while feeling half decent with no awful side effects. This would be a much easier decision if the Ra was severe like it was back when I was first diagnosed. In the beginning it would render the affected joints useless for three or four days at a time and then to the other side and watnot. Now I kinda know what to expect to feel like tomorrow with of course a little surprise extra twang every now and then. I'm really thankful to be doing fairly well cause I know well how fast things can turn around. I'm sure I will talk all this over with my rheumy next week but I wanted to run it by my ra friends first :)
Right now I am making it pretty good on the plaquenil. I still have stiffness and pain on a daily basis but it's tolerable and currently doesn't affect my everyday life. I haven't had to miss any work due to ra and my job is pretty physical. I have had a rough day here and there but most go pretty well. I actually ran my weedeater for about three hours today and my hands feel fine this evening. I'm not sure if my symptoms have just weakened some, the plaquenil might be working, or I'm finally getting use to my new normal. I feel comfortable on the plaquenil and haven't had any negative side effects from it so far. I just picked up a bug that's been going around at work and I'm not totally freaked out because I know the plaquenil hasn't completely devastated my immune system like the bios can do.
On the other hand I know if I don't treat it aggressively then I stand a good chance that my current situation might slowly or fastly get worse over time. Next thing I know I have permanent damage that I might could have prevented if I would have got straight to the point. It's just tough for me to take some strong meds while feeling half decent with no awful side effects. This would be a much easier decision if the Ra was severe like it was back when I was first diagnosed. In the beginning it would render the affected joints useless for three or four days at a time and then to the other side and watnot. Now I kinda know what to expect to feel like tomorrow with of course a little surprise extra twang every now and then. I'm really thankful to be doing fairly well cause I know well how fast things can turn around. I'm sure I will talk all this over with my rheumy next week but I wanted to run it by my ra friends first :)
your course of RA is different than anyone else's, so there is nothing that says that you will get deformities also your dental procedures may have helped settle your RA down as well. I would tell the doc just what you said here, maybe he will let you stay on the plaquenil for now. No one can predict what will happen. Be honest with your doc always - and let him know that you are doing well. Not all RA patients have to take biologics. some do well on ibuprofen and exercise or just on methotrexate. you can always change your battle strategy if things change I think.
best wishes
good luck
I am like you. Went off MTX due to elevated liver enzymes. Even on MTX I did not feel perfect. I can describe myself like you- some pain and stiffness but tolerable and I don't ever miss work. I took nothing for a long time- because I didn't feel any different off than on! My labs were only elevated (extremely) during a horrific onset-once high doses of prednisone knocked RA back-and I tapered off my labs are always normal.
I had a flare after being off MTX for about a year. Nothing like onset- only my hands were affected. Went back on prednisone and as I tapered off doctor put me on plaquenil. I take both pills at the same time because I kept forgetting to take the second dose.
I am back to "my new normal"
I'm happy to stick to the plaquenil and not keep searching for the drug that's going to make me feel pre-RA. I tried Humira with the MTX in my early days and did not feel significantly better but got sinus infections.
There are people with significant symptoms that keep them from going to work or even getting out of bed in the morning. They need the big guns drugs. I don't feel I do. They are toxic and come with side affects.
My RD sees me every 3 months to monitor my disease. We take xrays once a year (would like the MRI like RA Sally says but he doesn't prescribe that). Anyway- the xrays don't show damage.
I think your gut will tell you what you need. For me my symptoms will have to take a change for the worst before I consider more drugs.
All my best.
I was on the mtx for roughly 8 months before I had to stop. I couldn't tell if it was helping or not. Sometimes I thought it might have been but my symptoms didn't seem to get any worse after I stopped it. I do still take some ibuprofen every other day or so. All my bloodwork has came back normal besides the liver function test sometime back. I did notice the last time I had bloodwork done that they were a couple extra that were taken. He checked for hep and tb. I think he done this just in case next visit he would already be a step ahead if he wanted to add something new or possible biologic. My bloodwork hasn't really shown much on inflammation levels. The only image work that has been done was just x-rays of my hands and feet as a baseline when I was first diagnosed. I really do like the sound of ultrasounds and mri to track erosion from what I've read on here the x-rays aren't good for showing much.
Thinksra- I like your idea on taking the plaquenil at one time cause I have caught myself missing that evening dose a time or two. My rheumy told me he didn't care how I took them as long as it was two a day.
Luckily I am blessed with what I feel is a good rheumatologist that' listens to what I say and is great to work with. All of your info and thoughts were great as usual. Thanks
1)..RA doesn't "just" do damage when you hurt. A lot of the damage occurs when you feel just fine....that is the problem. You feel okay but your body is being assaulted.
2) that biologics devastate your immune system. RA occurs when an immune factor is activated but it never shuts down. Your immune system is in overdrive. The goal of biologics is to inhibit the factor that is turned on and never turned off. Unfortunately, the blood tests to find out which factor is turned on does not yet exist so they try different biologics until they find the right one. You know when you feel better that they found it. Then your immune system is brought back to normal. The problem with infections is that the biologics then stop the immune system from reacting quickly and strongly to an infection as it is being kept "calm and normal" when you need a fast and strong response. However, I have found that my immune system still responses very strongly when needed despite my biologic and MTX. A bit of overkill when we are warned?
hugs...........Jen
RASally, I would be interested in the treat-to-target information. Thanks for doing that :) I still have so much to learn and you all help tremendously.
Shar
That is setting the bar very low. If you can add something else and be normal, why wouldn't you? Because you are afraid of the meds?
Be afraid of joint erosion and deformities. It doesn't take much to get them. I once picked rocks for a few days when my thumbs were flared. I was on just mthx at the time. At the end, I had permanent bunions on my thumbs.
You say you do hard work, when will you know if you are pushing your joints too hard, or if you are ok, if you live with permanent stiffness and flares? Of course, it is your choice.
As for these drugs ruining your autoimmune system, I don't know where this myth starts. I used to have constant pneumonias and infections the years before RA. I was not on any drugs that suppressed my immune system. I got smart and starting taking a lot of supplements - vitamins and minerals, and I am rarely sick. Less than normal people, in fact, despite my allergies and asthma.
Let's face it, if we have RA, something is wrong with our bodies. How many other conditions could we have that also result in infections and issues? My advice is to start taking vitamins and minerals, especially Vitamins A & D and Zinc, and see how you feel.
And as someone else said, you don't have to start these new meds right away. But you should mull over how much irrational fear is playing a part in your decision, because you have seen too many of these TV ads for various RA meds which list the side effects. I guess I am lucky I live in Canada, and we don't get those ads. (I do have a CPS and I do look up the side effects - but somehow reading doesn't seem as bad as hearing it shouted at you in your living room. LOL)
I appreciated that info you shared RASally!!! That was useful to read and get some further insight to the Dr's "target plan".
According to my doc swelling indicates the RA is active & not well controlled so I see his point.
Now I could be wrong but wouldn't the severity of the RA have a deciding factor on the treatment? Meaning those with a milder form may do fine without the big guns.
I was on Enbrel. It was indeed helpful in pain, swelling & exhaustion.
Worked pretty darn fast for me. Although it had its side effects. Hit the sinus leaving headaches & opened the door for some respiratory infections. Although pros outweighed the cons.
That's just my experiance.
Kept something around for sinus during treatment. Lasted approx 2 years then stopped but it sure helped maintain control.
Yes indeed appears insurance now dictates what treatments the patient will take in what order. Let us know which one you'll be on.
Wishing you the very best of luck.
Sammy