I began on this site (PsA), then floated over to the Lupus site... I am confused and need to know which way to turn if anyone has time to read ... (hi Seenie & Stoney! I'm back ...) ... Was seeing two Rheumys. Rheumy #1: diagnosis R/A (without positive RH Factor) and likely Lupus (without positive AnA; but positive kidney issues) as well as other symptoms of both. Rheumy #2: 10 minute visit and absolute diagnosis of PSA and wants to start me on Symboni (?)/Humira. PCP told me to choose one ... Seemed that Rheumy #1 took a lot of time with me, etc., especially making sure I don't (or do) have Lupus and said I definitely have R/A due to destruction on both sides at same time (knees, shoulders, hands, wrists, etc.). Well, he put me on MTX which was a nightmare. I caught every single bug that came my way, ended up on so many antibiotics I got C-Diff. One of the "special people", I guess... anyway, just started Plaquenil yesterday (specifically for R/A & Lupus). Can take up to six months to work.... I am NOT convinced I do not have PSA or both; I believe I do have PsA, too ... Need advice on who to talk to ... PCP said to pick one .. I did, however, my spine, neck, nails, psoriasis, etc., are all flaring constantly, which Rheumy #1 seems to ignore. Am afraid to be put on biologics because of what happened with MTX. I am very close to being in a chair full-time. Cannot walk very far and cannot walk very straight. Has anyone else been through this quandary and can anyone give me advice as to what exactly to do from here? I have other autoimmune issues, as well, but each time one of you writes, it seems you are telling my story. I feel "home". I hope you understand .... I just need some direction. And, is anyone here taking Plaquenil and a Biologic together? Does anyone have both PSA and R/A? Could they both be right? Thank you so much. Hugs, Dee
So you thought you ordered the enchiladas, but the waitress brought the whole damn combination plate? Autoimmune diseases have a reputation for running in packs, and it's very possible to have more than one at a time. Treatments for PsA, RA, and lupus do have a lot of overlap. If you can use either rheumy, #1 may be the better choice. An open mind and a more nuanced view of things is usually a good thing.
Thank you, Louise... LOL (you are too funny!) ... I am such a baby ... was so happy about the Plaquenil and not getting infections anymore, but I am in tears right now .. realizing the Plaquenil will not help the PsA and knowing in my heart after listening to you on this site, I definitely have it ... Rheumy #1 is the first Rheumy I saw 10 years ago; had same diagnosis then but pain was so bad and meds did not help, I ran (realize now it was a terrible flare; and they continued for many more years with me fighting them all the way) and now I am back with him again. I just do not want my spine to break in half as it feels it is going to do many days while I am on the wrong treatment. OK, will pull my big girl pants up and research if I can do a Biologic, as well ... Thank you so much for listening ... Hugs, Dee
Lots of folks take Plaquenil and a Biologic. the sooner you start a biologic the better. It pretty hard to have RA without a positive RA factor and pretty unusual to have Lupus without a positive ANA or Butterfly rash. Its far more likley that with Psoriasis you have PsA. It doesn't matter at this point though the treatment is the same. I obviously don't have the x-rays but just because the erosions are on both sides doesn't mean much. The "pencil in cup effect" that distinguishes PsA from RA when bilateral erosions appear is what treatment is there to avoid. If it were me, I'd listen to my PCP. He doesn't seem to think what you have matters because it doesn't. You need effective treatment NOW. Plaquenil is not going to help your spine. much. Which doc is treating you the best. I don't care which one sells himself the best or has the best bedside manner which one is going to treat you the best???? Incidently while C-Diff could be from the antibiuotics, its also sometimes autoimmune related and there is a direct relationship between those gut problems, AS, and PsA. I'm voting number 2 (how appropriate when discussing intestinal problems) but IT doesn't matter. Its which one who is going to most aggresivley treat you. The treatment is virtually the same.
Dear TNT: Thank you so much for commenting.... LOL ... I get it and you are correct; I just know Plaquenil will not help the spine issues and they are getting worse ... Awesome! ... since I can take both, going back to #2 and staying there. Hopefully, he will keep me on the Plaquenil, too, just in case ... I have had gut problems for years (SEVERE pain on lower left side), etc., finally self-diagnosed Celiac and started eating gluten free which helped a lot of it. Did not want to start eating gluten again to get the accurate test - either Celiac of sensitivity is enough for me, but that pain is horrendous! Autoimmune gut problems, PsA and possible AS? Hmmm ... (laughing is good for the soul) .. thank you so much, TNT!!! Hugs, Dee
Hi, Tootles! Should I say welcome back? Yes, I’ll say that: we’re glad you’re here, even if it’s a shame that you need to be.
I second TNT’s motion about getting aggressive with this disease. RA or PsA, the treatment will be similar anyway. Just because MTX was a nightmare for you, doesn’t mean Humira will be because they all work slightly differently. If the doc is offering, I say give it a try. And if Humira is a bust, go onto the next. Feeling the way you do, and with your life being limited as it is by whatever autoimmune issue(s) this is, you need to gain some control.
I’m voting for Rheumy #2. Sounds like #1 isn’t quite sure of what he’s doing. JMHO.
Take good care, and stay in touch!
Thank you, Seenie! thank you so much for being there; all of you ..... so good to have such supportive friends!
If we are voting here, I vote for Rhuemy #2 for the same reason as Seenie. I like docs who go full tilt into treatment, because whether its RA or PsA, the treatment is the same. What you need is some of them biologics! (a-la Jessica Tandy).
Welcome back! Both sound like they are being appropriate with treatment, and the specific treatment isn't critical. On Plaquenil, make certain to get a baseline eye exam, and twice a year. You'll need a visual field test to check for toxicity. I take plaquenil and leflunomide, no biologic.
I think it’s really important to remember that the drugs do impact everybody differently - even regardless of RA vs PsA status.
I’ve looked into this a lot - because I’m so symmetrical, with no visible dactylitis, my rheumy likes to say sero-negative RA, rather than PsA. Never mind that I fit the CASPAR criteria, have psoriasis, pitting of the nails (was off humira for only two weeks and oncholysis started… Etc)
But interestingly, the point is, some people with PsA can do well on traditional dmards (as can many with RA). But if you aren’t one of them, then it’s time to try a biologic - if you can. Most of us take a biologic with another dmard (mtx, Arava/leflunomide, plaquenil, etc).
It would seem my grandmother had RA, and my father had PsA. My mum now has gout. Do I have RA or PsA? Quite frankly don’t care - the mtx’s very slight improvement did not outweigh the side effects, plaquenil helped prevent me from getting malaria, but not much else, but Enbrel gave me my life back, and Humira let me eat again.
I’ll be honest - I’m not going to vote for a rheumy - I’m going to vote for you. You know what you need and can choose to advocate for it.
I'm not a doctor, but it sounds more like PsA to me than RA/Lupus. There are five types of psoriatic arthritis, one of which is symmetric psoriatic arthritis (much like rheumatoid arthritis but generally milder and with less deformity, usually affecting multiple symmetric pairs of joints, and can be very disabling). I'm wondering if that's where the RA vs. PsA confusion might lie.
In my personal experience, I went from spending the majority of my time in a wheelchair to hiking on a biologic. It was a process of figuring out which works best for me and playing with dosage and timing, but the results have been amazing.
Dear Nym: I had such an awful time on the MTX (got everything imaginable) - can I expect the same from a Biologic? Do they work the same way? I have read about Humira and Enbrel and both seem to make you much more susceptible to infections, etc., like the MTX. I know you are not a doctor, but any help you can offer in this area would be much appreciated.
I've never taken MTX, so someone else might better be able to answer the question of MTX vs. biologic. I've spoken with many people on various different medications, and it's my understanding that you're more likely to have a reaction mtx than biologics, and the side effects of biologics for most people are mild. I've taken Enbrel and Remicade. I had no noticeable side effects from Enbrel (besides hair thinning, but that's an INCREDIBLY small percentage of people) and on the higher dose of Remi that I'm on now, I have a "Remicade hangover" for a couple days after my infusion and nausea for the first couple weeks after infusion (I go every six weeks, and my understanding is that I'm at the high end of the dosage scale). That said, I'll take the nausea in order to be able to not only walk, but go hiking with my family. It's been amazing. The important thing about any of these diseases is to stop the damage. It was a huge leap for me to go on a biologic, but I am so thankful that I did.
Thank you so much, Nym... I appreciate your input. I know the Rheumy that said it is PsA and wanted to start the biologic right away commented that I was taking "poison" with the MTX; why was I worried about the biologic? So, from his comment, I am hoping they do not work the same way. And, for me, as it turned out, he was right about the MTX .... most people are not affected by it like I was, I am sure.
MTX is toxic; I can see why he called it poison. Biologic can make pre existing conditions worse. However, they have a better short term safety record than most DMARDs.
Thank you for the support, Jen. I just so wish I had paid more attention years ago.... Since the MTX bombed so terribly, I am questioning my resolve in choosing the right meds. Plaquenil seems safe enough; adding a biologic, even though it cannot repair my spine, feels like the right choice. Called the Rheumy today (PsA Rheumy) and he is on vacation until Monday, but pretty sure he wanted to start me on Humira right away and I do believe he mentioned it would not "heal" my spine but would help in making sure it did not get worse. Curious as to what Remicade does .... if you have time?
Jen said:
I think it's really important to remember that the drugs do impact everybody differently - even regardless of RA vs PsA status.
I've looked into this a lot - because I'm so symmetrical, with no visible dactylitis, my rheumy likes to say sero-negative RA, rather than PsA. Never mind that I fit the CASPAR criteria, have psoriasis, pitting of the nails (was off humira for only two weeks and oncholysis started..... Etc)
But interestingly, the point is, some people with PsA can do well on traditional dmards (as can many with RA). But if you aren't one of them, then it's time to try a biologic - if you can. Most of us take a biologic with another dmard (mtx, Arava/leflunomide, plaquenil, etc).
It would seem my grandmother had RA, and my father had PsA. My mum now has gout. Do I have RA or PsA? Quite frankly don't care - the mtx's very slight improvement did not outweigh the side effects, plaquenil helped prevent me from getting malaria, but not much else, but Enbrel gave me my life back, and Humira let me eat again.
I'll be honest - I'm not going to vote for a rheumy - I'm going to vote for you. You know what you need and can choose to advocate for it.
Stoney: what is Leflunomide? and how does it work "for you"?
Stoney said:
Welcome back! Both sound like they are being appropriate with treatment, and the specific treatment isn't critical. On Plaquenil, make certain to get a baseline eye exam, and twice a year. You'll need a visual field test to check for toxicity. I take plaquenil and leflunomide, no biologic.
Leflunomide is also known by the brand name Arava. It is a dmard, in the same class as MTX, but the course of action is somewhat different. MTX didn't do anything for me other than make me queasy. Leflunomide decreased my inflammation and lowered my fatigue. And yes of course, there are side effects.
Thank you, Stoney! The Plaquenil I am now on is also a DMARD ... did not realize that ... I guess they all act differently somehow; keeping positive thoughts about the Plaquenil, but if it does not work or work well enough, maybe I can add the Leflunomide. Out of curiosity, may I ask why you are not on biologics?
I guess just hasn’t come to it yet. My rheumy seems to feel that my disease is not particularly aggressive. I have been responsive to DMARDs overall.