Not posted in a while. I saw a rheumatologist privately at the end of June having been seen on the NHS and discharged with “wear and tear”. The private consultant diagnosed PsA because of my medical history of psoriasis, strong family history of auto immune diseases and my symptoms. He started me on Sulfasalazine and am on week 5. A few minor pockets of less pain but certainly not kicked in yet. He suggested I be seen on the NHS for future care. So I’ve just had my follow up with the same doctor that said it was “wear and tear”. She was not very warm and didn’t even examine me. She said she will repeat the MRI of my spine as last time it didn’t show inflammation. I said the pain had got progressively worse and I had been diagnosed with PsA. She said if you don’t have inflammation then we’ll stop the treatment. I asked what it could be if it’s not PsA and she’s said fibromyalgia. I’m so fed up and upset. I finally felt I had a diagnosis and started treatment and now she’s making me question everything. She suggested I have a steroid injection which she said will help if it’s PsA but if it’s not it won’t. I feel she was defensive as my GP had asked me to be seen again and questioned the diagnosis of OA.
This happens, it shouldn’t but it does. Something similar happened to me anyway. Did you have the steroid injection? If it makes a significant difference then makes a stronger case for PsA.
You may have to keep pushing forward, perhaps by seeking a second, well, third opinion in a different hospital. Do you mind saying which hospital you went to? (Best not to name doctors you’re unhappy with). There’s the RNHRD hospital in Bath, which is a centre of excellence for PsA. Alternatively, can you ask to see the rheumy you saw privately but on the NHS? Or doesn’t he do NHS work?
Much as we may feel that we’re being a nuisance when persevering and seeking more enquiring rheumatologists, I feel you have right on your side because inflammatory arthritis can have more severe outcomes than OA or fibro and is treatable. Therefore many doctors will sympathise with a patient who is doing everything they can to ‘exclude’ the possibility of PsA. Additionally, you have indeed had a diagnosis and it is therefore perfectly reasonable to wish to be 100% sure that it was wrong before ditching meds. One offhand doc with the hump wouldn’t come anywhere near 100% for me.
Inflammation can be hard to detect or so it seems. It is good that you have been sent for an MRI at least. You have some leads, but obviously this all feels like one step forward and then several back in some respects.
I second all that Sybil said. I wouldn’t be returning to that rheumy on the NHS you’re seeing who so determined to see inflammation on an image. My inflammation never showed up on images. So if you can’t see the private rheumy on the NHS then your GP needs to be referring you to another one maybe out of your Trust area. I go to the RNHRD in Bath on the NHS but live in deepest Kent. Yes it’s a long journey to get there but certainly so worth it.
And just so you know I was also started on sulfasalazine which didn’t do anything much for me until at around the three month mark I was put up to 6 tablets a day. Then it worked and help well. Sadly only for about 7 months but at least it worked.
As regards the steroid injection, if it’s the one in the bum, it worked for me but not as well as taking steroids in tablet form.
So do keep pushing on till you see a rheumy that you can respect and trust.
Thank you. I did have the injection and hoping it will work for both the pain and also to confirm the PsA. I was seen at the BRI in Bristol. The chap I saw privately does work on the NHS too and is the clinical lead so i think he’s more senior than the consultant I saw yesterday. I’ll speak to my GP about going to see him instead of the other. That’s twice she’s seen me and made me feel like a fake and been quite patronising.
I live in Bristol so Bath wouldn’t be far for me to travel. I’ll have a chat with my GP on Tuesday.
How long did it take for the steroid injection to take effect? I’m not sure if I’m imagining that I’m feeling a bit better today or it’s such hope that’s deluding me!
I nearly took the sofa covers off to wash and was thinking of cleaning the house but then thought let’s not go OTT!!! So I’ve made a cup of tea and sat down
Welcome to LWPsA, jrw, and thanks for “reviving” this thread from last summer. When you post on a thread that has been dormant for a bit, the original poster, @Lulu in this case, and those who contributed previously, will receive an email that tells them that you have contributed.
Yes, that is a bummer. I can relate. Blood work can show proper levels but pain persists and it can be that the disease messes up nerve signals. Point being the pain is real and we are left guessing what is fibro or psa. It could be all the above. Who knows?
The saga continues!!! I have been on Sulfasalazine since last July, NHS decided they would repeat the MRI and ultrsaound scans which didn’t show inflammation and saw another rheumatologist who now thinks I have fibromyalgia and not PSA and wants me to stop the DMARDs! My mum was poorly before Christmas and I had a total meltdown and that did affect my pain levels so maybe there is a bit of fibro too? My GP is still prescribing the Sulfasalazine. I’m seeing my GP next week and going to discuss with her about the next step. It’s a blo*dy nightmare. One step forward, 300 back. Also the steroid injection helped so much which they said would also be indicative of an inflammatory arthritis. Good news is am managing to work 3 days a week in the office on reduced hours and a few hours on the other days. Small steps… Hope everyone else is okay xx
Second opinion time? I think maybe that’s the case.
You need to get a really firm diagnosis, one you can trust. I don’t see fibro as the ‘dustbin of symptoms’ (I have heard it described in similar terms). On the contrary, if that is what is going on then you need a really knowledgeable and helpful physician to take you forward. Few doctors would doubt that it is a very challenging condition to live with - well, I hope that is now the case anyway.
I also still think that you have every reason to continue trying to ‘exclude’ PsA, all the reasons I listed before. Given where you’re at now, with so much uncertainty, I think doctors would be likely to understand why you’d sought a new referral. Once we have a firm diagnosis changing can be more awkward, it certainly feels more awkward.
Do you have any swelling at all? Or current psoriasis? May be best to keep a record, with photos. You could check out some rheumy’s profiles, I’d look for those with an interest in both PsA and fibromyalgia.
What are you doing at the moment … did you stop the DMARDs?
Pain levels are, for most people, significantly affected by lack of sleep, food, a myriad of other environmental factors, and of course stress. This happens whether you have fibromyalgia, a broken leg, a sore tooth, or PsA, so I really wouldn’t give that any weight in the PsA vs fibro discussion you are no doubt having in your head.
Did the Rheumy who suggested fibro actually do a comprehensive tender point exam? My MRI taken early in the disease didn’t show visible inflammation, so my Rheumy suspected fibro. Then he did a full tender point check, and he was very confident that it wasn’t that because most of the time I was just standing there looking puzzled at him going “that’s not where it hurts”.
The tender points can be very tricky, because many of them are near tendon attachment points, but at least if you don’t score for fibro on them, it can be ruled out.
Steroids working are certainly a very strong indication what you have is inflammatory, though I don’t know enough about fibro to know if this would rule it out.
I would discuss all of these things with my GP, and look to find a Rheumy who can give you something more definitive on fibro - and in addition- is the sulfasalazine working? If not, perhaps discuss changing the DMARD, rather than removing it (unless you feel like the Rhuem was right about fibro).
I’m still taking the DMARDs as it took a few months to work and I did feel it was working well up until I had a bad week (stress related?) of pain but I’m so much better than I was before I started the DMARDs. I can manage to walk to work some days, don’t take Cocodamol regularly and rarely use my tens machine whereas in the summer I wasn’t able to walk far, was always on Cocodamol and needed my tens machine daily. I’m loathe to stop taking it as they are faffing about the diagnosis. If they do get to the decision that the clinical lead who I saw privately who diagnosed PSA then I don’t want to have to start again.
No examination of me apart from looking at my knees, no tender points examined, they just gave me a leaflet!!! Sent me for more physio and an insole and said they’ll see me again. Haven’t got an appt yet so will speak to GP and see if she can write a letter to the clinical lead and ask him to see me on the NHS.
I have a few patches of new psoriasis but it’s under control with just emollient cream.
Thought mine were getting fat too, for a couple of years … till they got even bigger. Actually I thought I had um, ‘slippage’, my thighs sinking down to say hello to my knees. Well, that is happening a bit, sadly. But the knees were not getting fat as such, they were swollen. Poke 'em … does it feel like ordinary fat? Or saggy slippage? Or puffy? If puffy, suspect swelling, especially if they hurt.
It is great to hear the sulfalazine seems to be working - it has one of the lowest risk profiles, so if it was working for me, without unbearable side effects, there’d be no way I’d stop it.
Given the new Rheumy’s lack of any comprehensive exam, I’d consider his conclusions to be speculative, at best. Sounds like you are on the right track and have a good plan, you’ve got this!
Definitely get that proper independent second opinion. Every rheumy worth their salt should do a full head to toe joint exam for PsA. And every rheumy worth their salt can also diagnose fibro competently. They can also diagnose both on the same person too, if they’re worth their salt. Find one worth their salt. Because when you do you then get either or both diagnosed and then you get either or both actively and cogently treated. And that and only that will set you on the road to feeling a lot better regardless of how active or not either or both are.
And if sulfasalazine likes you and you know it’s helping stay on it through all this. It loved me for a long time and worked incredibly well for quite some time too.
I’m sorry but also a slight bit glad to know that I’m not the only one going thru this. I’m going to search for a new doctor today after I call my existing doctir’s office to see if I can see the actual doctor and not his helper obnoxous (misp?) helper.
I’ll keep praying for all of us.
