New rheumatologist (possibly) new diagnosis

General
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I just left my rheumatologist and I am so confused!

My original rheumatologist left the practice about 5 months ago and I got a new doctor. He has always seemed a little side-eyeing about my PsA diagnosis because I’ve never really had a rash. I had severe eczema as a kid and my o.g. rheumatologist seemed to think that may have been a misdiagnosis and was actually psoriasis plus I had nail pitting.

Well, today I have been pronounced to have officially failed Cimzia. I have had severe swelling in my PIP joints on my right hand that have now gotten to the point where I can’t make a fist and I cant even bend my index finger. I got a pretty big steroid shot in my arm to try to counter act it as well as my final Cimzia injection.

So when we started talking about my next medication I brought up Otezla and my doctor said no because that’s for psoriatic arthritis and I was like yeah… and he said he’s been relying on my previous doctor’s diagnosis but it’s his opinion that I have RA and not PsA. I should have asked more questions but I was so flustered that I basically just said oh,ok.

So now I have to decide if I want to try Enbrel, Humira, Simponi or if I want to jump to an infusion. But right now I just keep thinking “Huh???” When I got the PsA diagnosis it just made a sense (other than the rash) because the symptoms fit so nicely with what I’ve experienced. And now I kind of feel like my life just got flipped upside down again.

Any advice on dealing with this? Should I get a 3rd opinion?

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I think it would be helpful to get a 3rd opinion and might provide you with peace of mind. If the rheumys are/were colleagues, your new rheumy may not want to counter the previous diagnosis.

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For definite get another opinion but research to find someone who’s actually interested in PsA, rather than just ‘another’ rheumy. You need to find someone who understands PsA, is interested it in, publishes medical papers on it etc. It’s that sort of rheumy who can diagnose you coherently.

Have you ever had a blood test that shows you’re positive for RA? As in have a positive RF blood test result? I started out RF negative but then turned RF positive but my specialist PsA rheumy still believes I’ve got PsA based on having severe psoriasis as a teenager and a family history of psoriasis and PsA. The RF blood test isn’t the be all and end all of distinguishing between the two but it’s a starting place at least.

However I wasn’t that bothered which is was at the beginning, I was though really bothered to be treated effectively for whichever it was. Three years down the road I’m convinced what I have is PsA and so is my rheumy.

And enbrel, humira, simponi and ‘infusions’ (but you didn’t list the drug to be infused) all treat PsA well too. I’m doing fabulously well presently on a biosimilar to enbrel called Benepali. So I’m confused as to your confusion about these drugs being presently offered to you. All of them treat PsA really well indeed as well as RA.

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Might be an idea to write to your rheumy asking them to explain in greater detail what makes them think you have RA. Pointing out, too, that you were flustered by the sudden change in dx. Rheumys surely know that this kind of thing throws us.

Any reply they give might help you to decide whether or not it’s time to get another opinion. The drugs you’re being offered are as likely to help with PsA as with RA, so I see no urgency. In the UK the protocols for biologic therapy are a little more demanding than those for PsA and it was this that worried me more than anything when one rheumy favoured a RA dx. At that point RA would have made it more difficult for me to move to biologics. Plus I didn’t agree.

You mention that PsA fits your symptoms well, you could explain this to your rheumy.

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Back in December of 2017 when I was diagnosed I had, I think, 16 vials of blood taken and they checked me for everything they could think of. I know the RF factor was negative, hla-b27 negative, and my ANA was negative. All the inflammatory markers were through the roof though.
The infusion drug he mentioned was Remicade and now I can’t remember what the 2nd option was. He said he only wanted to use a medication that is used to treat RA and PsA both because he doesn’t think one of the drugs specific to PsA would work.

I’m really leaning toward Enbrel. He told me not to be afraid of infusions (and used a really good analogy. "When you’re driving to Baltimore it doesn’t matter if you’re in a Honda Accord or a Honda Civic. You’re still going to the same place ) but that just seems so serious to me. But he did tell me if I fail 2 biologics in the same class then I will likely fail them all and we’ll have to switch the class of drug if I fail at Enbrel or Humira or Simponi. I hadn’t heard that before so that’s a bummer too.

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As per @Sybil, first I’d simply ask him why he was leaning towards RA given you’re not RF positive (although you can of course have RA without being RF positive, just to confuse things). But I’d simply get him to explain why he thinks RA and not what you were originally told was PsA, given you’re not even RF positive. His answer might pinpoint his thinking for you better so you understand it better. I often find it’s easier asking these questions by letter/email too. It hits your file as a document so perfectly capable of being read and so then answered.

Also there’s nothing at all wrong with being treated with a drug that hits several different diseases, that doesn’t mean it’s unlikely to work as well as those that appear to be only for PsA. All are autoimmune inflammatory diseases and all these classes of drugs are trying to get to your immune system acting more rationally again. If we can get our immune systems behaving more rationally whatever inflammatory disease we’re suffering from or labelled as suffering from, just eases up considerably making us feel alot better.

So it actually really doesn’t matter what drug you’re being treated with, provided it works for you properly.

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I’m gonna give a different perspective on this one.

I keep a list of meds that work for PsA, RA, and Crohns, so I know what I’m moving to next, if something stops working. Almost all those that work for PsA work for RA anyway. As long as you are not being sent back to something that WON’T work for PsA, does it matter what your doc labels your symptoms with?

Sorry, I wrote a really long explanation to the above conclusion, then realised you may not get to the end, so I thought I’d put the conclusion right out there. If you want to read the background, here it is;

In my case, I fit Caspar for PsA (I rarely actually have P - but it turned up in a couple of tiny patches around onset time, and my GP was smart enough to get it punch biopsies and confirmed). My bloods are like yours, but without raised inflammatory markers compared to the rest of the population (pretty average for around half of us PsA types). But my Rheumy says he won’t diagnose PsA unless he sees sausage fingers (this is about the only classical symptom I haven’t had).

Then around a year after PsA onset, I got investigated for Crohns, because of a couple of major episodes, one which ended in septicaemia and surgery (and was almost the end of me) when I was 16, and one that started around a year after my PsA onset (when I was tapering off long term steroids and had started Enbrel, and I just lost the ability to eat without it going straight through me, and the night sweats, cramps, weight loss…). Rheumy was pretty convinced my arthritis was a Crohns - Psoriasis type crossover, even from the beginning (history at 16, mouth ulcers, night sweats…). Gastro would not declare Crohns because though I had some features, I did not have all. He said, easier to get Humira through your Rheumy, I guess if that works, you probably have Crohns.

It worked. Looks like Rheumy was right - weird PsA-Crohns crossover. Funny thing though, my official diagnosis on the medical records is seronegative RA according to my Rheumy. Then I looked up our very odd and particular medical system here, and discovered that RA by far allows for access to the largest range of medications, with the least number of qualifying requirements. Seems that Rheumy was not so much being stubborn and pedantic, as practical.

The upshot?

I keep a list of meds that work for both PsA and Crohns, so I know what I’m moving to next, if something stops working. Almost all those work for RA anyway. As long as you are not being sent back to something that WON’T work for PsA, does it matter what your doc labels your symptoms with?

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PS. Enbrel, Simponi, and Humira all have good track records with both RA and PsA. If it were me, I’d pick one and move forward with treatment, then worry about the 3rd opinion (if your waiting lists are anything like ours, it could be three months further on with still little clarity…).

I’m really pleased for you that regardless of the particular shade of the rainbow your inflammatory arthritis represents, you are being offered medications that are more often than not very effective.

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I went years and years with weird symptoms that were just kind of shrugged off by doctors because they had no idea what was going on. And then one day to have someone say “I know exactly what this is” was just incredible and exciting.

Of course then I researched. And then I went into this deep depression like I’d never experienced. It wasnt until about 4 months later when the Cimzia started to work and I was able to start enjoy life again that I started to feel ok again.

So, even though these are similar diseases and they’re treated the same way, I guess I feel like I had accepted having psoriatic arthritis and it had become part of my identity. I feel…attached?..to that diagnosis. I don’t want to feel like I have to start all that over again and learn to be ok with something else again.

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I understand better now. If it helps, I’ve ‘attached’ more to the fact that ‘my immune system is abnormal’ rather than anything else. So when meds stop working or new symptoms appear, often weird ones too, I focus my ire and attention on my immune system, I label it that way in my head. So that’s my ‘badge’ so to speak rather than PsA or possible IBD or whatever any new weird inexplicable symptoms suggest. It also means I focus on any treatment being offered as being for making ‘my abnormal immune system’ behave more normally.

However your rheumy isn’t being clear with you as to why he think it’s now RA instead of PsA, so you need to get him to do that. And I think once he does clarify it better, you might find he reverts back to PsA in any event.

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Hey there! So, I’m 50. I have suffered for YEARS… Since 20’s with pain. At 30 Ana’s were diluted to Max, one rhuemy told me I have lupus…mouth and nose ulcers. Got pg, felt amazing while pg for 3 yrs straight. Then it all came back. At 40, my internal Dr says, welcome to your 40s when I told her I’m exhausted and my neck was killing me!!! Then sent me to a pain clinic. After yrs of neck injections, he tells me to see a surgeon…I said… WTF, you never gave me a diagnosis when I entered the pain clinic!!! What a crock!!! And by now, I’ve had 3 yrs of bilat plantar fasciitis, and my IT band killed. So my husband goes to a women’s conference, he’s a PA, and says, I think you have PsA. 2 weeks later I get dactylitis and see a new dr. He asked if I had P. I said no. But son had coin P.
I tried sulfasalizine and methotrexate SS being best. Humira gave me UNBELIEVABLE relief 24 hrs after injection and worked for a while. Then I thought Stelara was best for enthesitis but again, the 24 hrs after injection was INCREDIBLE relief then 2 months later… Nothing. I think I have HORRIBLE enthesitis that my Dr can’t even understand. Now, both IT bands, feet, neck, shoulders down humorous, pelvis, middle finger…every frickin tendon kills me. Oh yeah, my theory about inflammation markers… Tendons are so friggin small, they don’t tend to raise it much but cause SIGNIFICANT pain! Then, I remembered, in my 20s, my dad died and I broke out with P for a short time and it went away.

Ugh.

I’m a mess. Can’t hardly move without pain… Waiting to try a new one but wish they knew what would work to give me relief. H a very gotten some THC though to sleep and that does help… Now I have to ask Dr for RX though…lol…as my friend gave it to me…

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Hi, you have a lot of good replies. I have followed a similar course as you but I started in 2011. If you are in the US one thing I can say is if you have a good rheumatologist, sometimes they might tweak your diagnosis based on what insurance will pay. This is not as big of a discrepancy ad it was in 2011 when my doc diagnosed me with RA. I think that he knew that I had PSA but many of the new biologics (at that time) were not approved for PSA.

This has changed so I am not certain if it can explain your doctor’s diagnosis. However, I can say that most RA treatments are also PSA treatments. If your current Rheumatologist doesn’t listen or you doubt him for any other reasons, I encourage you to find another. My Rheumatologist of 13 years recently retired and I just went through 2 before finding one that I felt I could trust.

Good luck and good health!