OH has now been under the care of the rheumatology department for 9 months and today we had his third appointment. He is negative for rheumatoid factor and CCP but the consultant has always said he has an inflammatory arthritis. His CRP levels were in the high 20s at first and have been gradually rising to the 80s they're at now. He's currently on 25mg per week sub-cut MTX, daily hydroxy and daily sulfasalazine as well as folic acid on non MTX days. His joint pain is gettin better, but since being on the full dose of sulfasalazine he's felt generally unwell a lot and has had a particularly bad stomach.
That's the background, but my reason for posting is that today the consultant said 'I want to have a frank discussion about what to do next' and said that OH doesn't really fit with any of the diagnoses in the title of this post and so he's not sure on the best course of action. He said he's going to have a discussion with the rest of his team and then come back to us next week.
We're not unhappy with this outcome because the consultant said he isn't happy with how things are at the moment but the next treatment is dependant on the diagnosis - he will consider biologics if the team think it's worthwhile.
Has anyone else had this and what happened?
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As far as I know, Lupus is a specific blood test I had it when the clotting issues related to RA began. I was negative but had already a positive for RA. So I just hope you find out what happens next soon. X
The reason he is unhappy is CRP is still so high. This means he is still at risk and not under control. Clearly an inflammatory disease. But seronegative does not generally create CRP levels of 20 let alone 80. I sincerely hope the R.E.M. Finds a solution but reducing inflammation is paramount. At times it seems the only focus.
I believe you can get high CRP levels with vasculitis, lupus and seronegative RA as well as other unpleasant things. It is your body's response to inflammation of many sorts, not a specific sero-positive RA thing.
I haven't had this as luckily (?!) have a pretty classic RA. But at least you have a consultant that is prepared to seek out other alternatives. Hope knowing that there might be alternatives has cheered your OH up a bit?
Having been haunting this forum for quite a while I've read stories from people who have all sorts of variants as there's a blurry border between some of these disease, like rhupus (cross between RA & lupus). Hopefully they'll pin it down for you.
Thank you and you are right about the range of variance. Makes me question if there is to much clumped into one category. Like Autism, wide range of affect.
I also wonder if refractory may mean they are treating the wrong condition?
Sorry, after reviewing CCP it seems unlikely. Apparently elevated CCP are not seen in Lupus, Sjögren s, and is primarily in TB and RD. Oh well , a Hail Mary lol
Medway-lady what do you mean about clotting and lupus? OH had a dvt not long after diagnosis but we and the rheumatologist put it down to reduction in mobility due to the joint discomfort and perhaps the steroids.
Helix helix you're right it is comforting that the rheumatologist is looking at a wide range of things and seems determined that we'll get there in the end. I don't think the inflammatory diseases are actually separate at all, I think they're just a sliding scale. I'll look up rhupus - thankyou.
RA is often a difficult disease to diagnose but Lupus even more so. I gather he also tested positive for ANA.
All patients with Lupus or Rhupus will have an elevated ANA but you can also have an elevated ANA with RA and other diseases. ANA let's doctors know that an auto immune disease is present and further investigation needs to be done.
If ANA is positive they will then run other tests for Lupus most notably dsDNA.
If you search Rhupus you won't find much as its a hard one to nail down. My doctor once though I had Rhupus because I was RF negative, ANA positive, and anti CCP positive. Yes, you can have a positive anti CCP with Rhupus. Generally, a patient will be diagnosed with either RA or Lupus first and on average the other disease will break out between 4-7 years later making the crossover Rhupus diagnosis.
Doctors rely a great deal on lab work but in the end all of these diseases are and should be diagnosed on a clinical basis. The problem is that often it takes years for the symptoms to evolve into a clearer picture and because of this a diagnosis can and often does change-especially for those who do not present with 'classic' RA.
The good thing for your OH is that they are monitoring his condition and checking what evolves and will change his treatment to fit his symptoms until the diagnosis is clearer. It can be very frustrating while they see what evolves with his specific disease when it's not a cut and dry case but really there are no cut and dry cases. Over time they will get a better idea of how his disease is behaving and what to label him so even if they discuss his case together they may or may not be able agree what disease it is yet. That's the hard part.
In the mean time as the investigation continues perhaps you can feel some solace that they are working together to find a solution and doing their due diligence to help him feel better?
I feel for your OH. I started out as sero negative RA and muddles along but was put on e enbrel and then humira. I failed all the DMARDs so biologic or prednisone is the only answer. I also am not to take pred any more unless absolutely absolutely necessary when I have a chest infection. I got two doses in the humira and had heart issues so then it was oh you have fibromyalgia, but I kicked up a fuss and demanded to be treated properly and not fobbed off because I was too hard. I do not have fibro I have none of the symptoms. So now they have settled on PsA for now so I can try cosentyx until something else pops up and they can figure out exactly what I have. Good luck I am five and half years in to this and it is debilitating, exhausting and painful.
Would like to hear about how cosentyx goes for u. I have been on all dmards and combinations of. 9 months Humira and now on benepali. I have psa and tendon pain pretty much throughout my body. Not so obvious as joint swelling!! Pred is pretty much the one drug that gives me pain relief. It's such a shit disease☹️ Worse when you've got kids to as hate being a sick mum!!
Good luck and send news as would really like to know ( and anyone else who has psa and is on cosentyx) it's apparently the first drug specifically made for psa....living in hope!!!😎
I have only had the loading doses and the first one after those. My rheumy said it can take 9 months to show any effect so I have a few months to go yet. I do get swelling and heat around my joints too, worst are feet ankles, hands, and TMJ but I show nothing on ultrasound. Weird. I also have extreme fatigue which is a killer trying to work full time. I am now getting excruciating pain in my spine though, which my GP said is from the disease. I think they are telling me PsA as they have no idea what is wrong with me. I have no skin issues at all either. I have numerous other issues so prednisone is a last resort drug for me sadly as it works so well.
I have no skin either just slightly dodgy nails. Sacral spine v.painful as well. Think a lot of these diseases cross over . 8 months to go on the benepali...just taken a wad of pred to kick back the pain. Thankgoodness there's something that helps before one of these drugs works. My rheumatologist is great and I have a lot of trust in him. Says that we'll get a drug to work eventually. Just such a long time to find out if something works or not... Hey ho!!
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What next?
Folic Acid ... what dose???
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