My first update. As I said in the check-in post on Jan 3rd, I am in an early stage of a seronegative spondyloarthropathy, mostly sure PsA. Was started on chloroquine 100mg, prednisolone 5mg, meloxicam 10mg, azathioprine 50mg.
Since then, the number of sore joits increased. At first hands and feet were bothering the most, now it is my back (sacroiliac, lumbar and thoracic). It is still a light pain, but I did not like this upgrade. I read that “patients with unremitting and progressive disease were more likely to have polyarticular type disease”. Adding my dry mouth as an “extra-articular manifestation” does not make it a better picture.
It is interesting how it changes daily. I have good days and not-so-good days. There are dry-mouth days and wet-mouth days. Feet might be sore one day and only the back at the next. Usually light fever and soreness comes quickly after a good day. Busy leukocytes!
Rheumatologist reminded me that this is an early stage so there are better chances of control. Asked me to keep up with this medication (meloxicam increased to 16mg) for two months and then come back. If I improve, we can start to take some meds out. If I show no improvement, we can think of a one-year course of biologicals.
WHAT? So soon? But I am in an early stage! My blood tests are fine (only higher Neutrophils count).
He says that at this stage there are better chances of remission.
Now I have a dilemma. As far as I know, a biological works only for some time and then loses effect. I know that some people here are on their 3rd or 4th biological agent. If I use it now I think I will be wasting one bullet.
Moreover, I am also a little suspicions if there are financial benefits for the clinic on putting me on biologicals so soon. Prescription of unnecessary procedures is quite common (I do not know if this is case).
I will have time to think until April, but right now I think that, if I do not improve, I am going to suggest the change the DMARD or change the dose.
Biologics can work for many years. I’ve been on Enbrel for 3 years with no signs of needing to change. Having normal blood work does NOT mean that there isn’t a lot going on. You said so yourself, that you clearly have a systemic disease. If there is a possibility of remission by being aggressive, why wouldn’t you take it?
I will tell you, though, that I was on the opposite end of the spectrum from you: I was diagnosed very late, and then treated conservatively. Let’s just say the results were not good.
There’s a member here, @Andrew, who had a similar presentation to yours and very early and aggressive treatment. We don’t see much of him these days, but maybe he will join in on this discussion and share some thoughts.
It is great that you have some time to consider your course of action.
Hi Jorge. Anyone who is on their third or fourth biologic is likely to come here pretty damn quick to vent and seek information / similar experiences / reassurance. It must be extremely demoralising when biologics fade out quickly. Consequently it’s not that easy to gauge how often that happens by the number of posts on the subject.
I’m in the UK and therefore my suspicions have been the opposite of yours, i.e. whether I was denied biologics for too long due to the financial strain on the ailing NHS. However I did have to reflect about whether I wanted biologics partly because they had been denied me, so I do get that this is a big decision, one way or another.
I’ve been on Humira since 2014 and it’s still going strong, I have dodgy times, that’s all. My last rheumy (I’ve recently moved to a new area) said that the aim was remission. I fell short of that but was often ‘close to remission’ in his view. I can tell you that being close feels like a pretty good life, it’ll do me for now, maybe forever.
I’m no medic, but I’d imagine that aggressive treatment early on does give the best chance of remission. That word ‘aggressive’ is problematic but from what I’ve gleaned it means aggressive towards the disease and actually less aggressive towards our bodies than even some of the DMARDs. I’m a 60 year old woman, I think if I’d been taking a drug that had a real kick back for 3 years I’d be struggling in many ways, but on the whole I’m in good nick, still strong, still alert, still me. It’s the PsA and its dastardly inflammatory process that have really messed me up in the past.
Not sure how things work in Brazil but in the US, it is a felony for a doc to get financial benefit from prescribing particular meds Some of the area has gotten greyer in some areas. Heres the thing if you wait damage is irreversible, it could have been prevented.
I understand your “loss of bullet concern” I’m six years into my second bio, I only changed because I developed eye issues. I WISH I had the option of the BIOs when I was 40, It would have been better at 30, I’d still have my career and a lot more control. The question I ask you is which better an easy moving less painful and active 40 year old or waiting until you are fifty - sixty to start getting you life back. There are FIVE new bios this year, more to come, and entire new classes of meds the last thing you need to worry about is running out of ammunition,
Dear Stoney, Seenie, Sybil and tntlamb thank you very much for your inputs.
That 2016 review (Recent advances in understanding and managing psoriatic arthritis) was helpful. There is also an interesting review from 2014 entitled “Advances in the management of psoriatic arthritis” (I managed to download the PDF).
I have read some of Andrew’s posts and I see that he had swelling issues at the beginning of PsA. Luckily I have no swelling, only sore joints and some tendons. Even when my knees were bad they did not swell. Don’t know what that means, spectra of autoimmune symptoms is large.
I guess I was wrong about my suspicion of financial benefits. I learned that the infusion is made elsewhere (at a hospital). I believe that my health insurance covers biologic treatment, but I have to confirm that. Public health is not reliable in Brazil and I hope that I don’t have to go this way. Brazil have one of the largest taxes worldwide and there is no equivalent return in public services. People have to pay for private education, private health insurance, private security… The price of corruption… BTW, there is a petition going on in the city of Rio de Janeiro: people with Lupus are not receiving medication for more than one year.
You’re very welcome, Jorge. I have to say it’s interesting to hear about how things work in other places. You say taxes are high. I’m guessing that’s for the people who have jobs where income is declared to the government. And then there are the other people, right?
Yes, I remember that @Andrew had swelling. We all present differently. Of course that’s part of what makes this disease so very, um … interesting. LOL It’s also what contributes to doctors missing the diagnosis, sometimes for years on end.
How did the mtx caper work out for you? Reminds me, need to go do mine …
My personal opinion regarding biologics is that next Monday would be a good day for you to start. I don’t know why your doc it bothering with meloxicam except to demonstrate to your insurance company that you need a biologic.
As Seenie said, I presented with inflammation in one joint, my knee. I went to Enbrel within a month. That was six years ago. The Enbrel still works. I’m still pain free and side effect free.
@Andrew I hate you and your active lifestyle (no I don’t. Super happy that your PsA isn’t a hindrance at this point).
@Jorge it seems like our disease is taking somewhat of a similar track. I don’t get a whole lot of swelling, barring my right hand, but the disease started in the right hand, spread to shoulder, hip, knee and, lately, toes. (Hey, that’s almost like that song).
If I get the chance at biologics, I’m jumping at the chance. Meloxicam did nothing, methotrexate seems to at least avoid getting things as bad as they could be, but, as some stories on here have told me, aggressive and early treatment of this disease leads to at least the possibility of remission, which I’m not going to lose sight of.
On a separate note, I used to work in export, and we used to send things to Brazil. It was cheaper to send stuff to China. It was understood, even by the US gov, that the vast majority of the fees and “taxes” we were being asked to apply were just going into someone’s pocket, and if they didn’t, shipping containers would, er, go “missing.” So, being wary of corrupt practices from anyone in Brazil is a healthy mindset to have, I guess is what I’m saying.
Hand, shoulder, knee hip and toes, knee hip and toes!!! It sounds like a *happy" song hehe!!!
Andrew! I love that Enbrel has been working for you for 6 years now–THAT is music to my ears because I’ve been on it 2.5 years now and it’s still working for me.
I also bike in the summer (in MN there’s none of that for 7 months of the year) and biking is so doable for me, too! Just flat, paved biking trails, though, no mountain biking for us, but still! We bought an exercise bike last week and now I can ride bike during the winter in the comfort of my family room while watching TV.
@Seenie, I was stared on Plaquenil (chloroquine) and Imuran (azathioprine). I thought that the next step would be MTX and only after that, biologicals.
@Andrew, I got the same impression from my last talk with him.
Well, I still have hope that this flare will be gone in a few months, as was the 2012 episode (~1.5 year).
@Dilorenzo, I was expecting someone would say “You don’t have selling? This means you do not have PsA, stop worrying” LOL. For me it started in hands and feet then moved to my back, but I feel all joints a little sore, depending of the day. Before I started the meds, I had numbness on both little fingers, but this went away. I think prednisolone is preventing swelling. Were your initial blood tests also negative for inflammation (CRP, ESR) and antibodies (RF, ANA, CCP…)?
Unfortunately, I read that biologicals do not work for Sjogren’s. Dry month is a bummer. Now, thinking about the past, I suffered from chronic sinusitis for many years and had sinus surgery in 2010. What caused the problem was a combination of allergy (rhinitis) and the unexplained drying of my nose. I think it was a first sign of this sicca syndrome. Which brings a question I need to ask doc: is it possible that I only have joint pain from Sjogren’s instead of joint inflammation (PsA)? More wishful thinking
You can have both. There are at least a few of us who have both here. There are some biologics (I’m thinking Remicade) that may work for Sjogren’s. Plus, there are meds such as Evoxac that can increase saliva production. I had gotten to the point where I wasn’t able to sleep because of the dryness, but have seen great improvement in my sleep due to dryness.
Still thinking about this dilemma, I went to see a different rheumatologist for a second opinion and received a different diagnostic. Instead of “early stage of a seronegative spondyloarthropathy” he says I have “fibromyalgia”. Why? Because I do not have any swelling and CRP/ESR are low. But what about the dry mouth, the low-grade fever, the sore sacroiliac, the plantar fasciitis, the brain fog? “Fibro, fibro, fibro, fibro, fibro. The main problem is pain and not inflammation, and GAD is playing a major role. You have to see a psychiatrist”.
Well, I really hope that he is right… I know that there is a lot of discussion about fibro x PsA in this forum and many of you have received both diagnostics. Let’s wait and see. I will start the muscle relaxant he prescribed and see if it helps, but will keep up with the current meds to complete the 3 month period.
You have to see a psychiatrist do you? But hang on, fibromyalgia is a thing. A physical thing. I thought the days of attributing it all to the mind were long gone …?? It would be nice to think that having seen 2 rheumys the matter was settled, but in your shoes I might be contemplating a third.
So did you see another rheumy because of your doubts about starting aggressive treatment for spondyloarthropathy relatively quickly? I’m just wondering whether there are other things about the first rheumy and his diagnosis that you’re unsure about as well.
Actually this 2nd rheumy was my first choice, based on his curriculum. However, when I called him back in December there were only openings for February. So I made an appointment and stared looking for another rheumy. Since the beginning I wanted to hear this doctor’s opinion. Both diagnostics have valid arguments and make sense so me. I am not discarding the first.
He said that fibromyalgia is treated by a rheumy and a psychiatrist (to deal with the GAD) and I should start physical exercises such as stretching and walking.
This is true so long as he aggresivley treats the physical. There is a large body of evidence regarding the benefits of gentle exercise and FMS. Psychiatrist are less “talk docs” as they are experts in psychopharmacology. A number of conditions tremendously effect the brain chemistry. A psychaitrist is best trained to deal with and treat those imbalances and can tremendously improve quality of life.
As far as I’m concerned, Jorge, until what the doctor tells you makes sense to you (and I don’t think it does) you need another opinion.
A psychiatrist (very much a psychopharmacologist) made a HUGE difference to my well being, as did my physiotherapist, who got me started on a sustainable exercise program.
But the psych did not address the physical side of my complaints. That was done by my rheumatologist, who went for aggressive treatment. Make that my second rheumatologist: the first one (full of motherly assurances and good intentions) simply made no sense to me, given how I felt. I had to bolt from her, and that was the decision which put me on the right treatment track. OK, it was about ten years too late, but that is another story.
