In dispair

Hi all,

It is a long time since I have posted (sept and nov19) when I was trying to get a diagnosis and had my first rheumatology appt. at that point they said pointed to PsA but couldn’t give a definitive diagnosis so no meds and go back in january. So I had an appt 13th January. Unfortunately whilst in the waiting room my neighbour called me to say my cat had been run over and didn’t survive. I spent the whole of my appointment sobbing and unable to fight for myself. Doctor said that he still couldnt give me a diagnosis. I was crying so much and so upset that I didn’t really question why not. He gave me a cortisone injection in my hip and said come back again in 2 months for a follow up. Then bang COVID and no appointment. Finally on 7th august the hospital called to say I will have a video appointment 13th august. The stupid hospital didn’t send the letter with instructions until the day of appointment so didn’t happen. I now have another video appointment on Monday. I have saved photos of me knee during lockdown which swelled to twice normal size (back down to ‘normal’ now) my skin in flaring so I have pics of that too to show.

I am so frustrated. Back in 2016 I was seen by another hospital for suspected RA due to pain and swelling and high inflammation markers. They said wasn’t RA and discharged but mentioned on the letter possible PsA. That’s 4 years ago - why am I still battling to get a diagnosis and treatment. I just don’t know what to do to get somewhere! Last time the rheumatologist gave me info on fibromyalgia. I really don’t think it is that. I have so many symptoms from PsA and not many of the fibro apart from the joint pain and occasional fatigue.

So I have pain definitely in the tendons/bursas in 1 shoulder, 1 wrist. They have been scanned and there is inflammation but no joint swelling. Restricted movement in both.

I had very physical swelling in 2 toes on one foot - the sausage look. Swelling went down after a couple of months but still have the pain and restricted movement.

Left knee, above the knee cap. Definitely had significant swelling (now gone down) but still swollen bursas.

Hips, right hand worse than left. He said there was swelling there last time. Gave me the injection and that definitely helped. It took a couple of weeks, but pain and movement deffo better for a couple of months.

Lower back and neck - very stiff a lot of the time!

I also have psoriasis, high cholesterol (even that I eat pretty well).

So after a long long post (as I am in despair) what would you recommend me to do during this video appointment which is a year from my first appointment with no diagnosis, no meds, increased pain and increased swelling?? Thanks all in advance ximage

I’ve no idea why in the UK (I’m in the UK too) it remains so hard for some rheumys to come to a diagnosis of ‘inflammatory arthritis’ at least, given the NICE treatment protocol to treat as aggressively as possible from the off.

So here is what I would do.

  • Google a body map, print it all off and show on there where you’re sore, painful, have/have had swelling, have/have had pain. It’s a great visual aid for a doctor to see.
  • Write down a full chronology of your symptoms giving dates as in far as possible or at least months and years.
  • Write down your full medical history and then what worked (as in the steroid shot) and what didn’t as in painkillers etc etc.
  • Write down all the things you can’t do on your worst day, from personal care issues right through to making dinner etc etc. Be graphic and to the point with that. If sometimes with your shoulder you can’t wipe your bum properly -say so for pity’s sake. Whether you can walk and if so for how long, can you carry shopping, drive a car, mow the grass, put out the bins, chop onions, mash potatoes etc etc.
  • List your relevant blood family’s medical history too.
  • List all the meds you take. (Incidentally - do you take statins? They can cause muscle pain too etc.)
  • List all your questions - ask why most especially the diagnosis is so hard for them?

Show all this on the video call and say you’ll post it all on to them for it be added to your file, to aid them going forward, given you’re getting weary of repeating it now.

A couple of indications to make a point on - you reacted well to the steroid shot which indicates possible inflammatory arthritis. Your scans to date indicate inflammation anyway. You’ve had the sausage toes. Swelling has been found by him too. You have psoriasis. So ask what then is the barrier to an effective diagnosis? Ask him to detail it coherently. Explain to him you’re at your wits end as to his reluctance to do what the NICE proptocol demands him to do given your presentation.

Treat the medical appt like a transaction if you can. Far too often we’re in stupid awe of doctors which I always consider is silly. It’s your appt, own it and control it and don’t let it stop or conclude until all your questions are answered. You’re there to access his expertise, not stroke his ego or be treated in a distainful paternalistic way.

I so hope this helps. Do bounce back and let us know how it went.


Thanks Poo. Just hope I can finally get somewhere. I have been suffering with widespread for over 5 years now! :weary:

I was going to r respond, but honestly, @Poo_therapy covered it all.

I hope that you can get a diagnosis this time. I know that there’s been circumstances that have slowed down the process, but it’s time for you to be able to start treatment. .

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Wow @Freyza131 , you’ve been through a lot, and @Poo_therapy gave you some great advice. I wish you luck in getting them to listen and get you in better shape. Hang in there.

Wow Poo…you really shine in giving good counsel! It would be worth hiring you as a personal medical advocate. I would encourage a second set of ears to be taking notes in the background as @Freza131 is going through the online consult. It frees one up to focus on the conversation not what needs to be remembered. All the best to you Freyza131, things could look up soon!


I second what everyone else has said - @Poo_therapy has given such excellent advice.

It’s so frustrating when you don’t get effective diagnosis and treatment, but if you steadily lay out all the information, be persistent in getting explanations for any diagnosis (or lack of), then eventually you should get a good outcome. You may need to go to more than one Rheumy (hopefully not - it seems pretty obvious in your case), but if you do, remember it’s just another step in the process, keep your momentum and keep going. Hope it finally goes smoothly for you,

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Excellent idea, truly excellent idea!

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I had my video consultation and after 5 years of battling I finally have a PsA diagnosis! Starting on a new anti inflammatory. Then I have to have some more bloods and a liver function test, a chest X-ray and if all ok I am starting on methotrexate. Not great to have this at my age but at least I finally have a diagnosis!!

Thanks all for the support and advice x


Great result Freyza131! Well, lousy diagnosis to have but a million times better than being in limbo.

Don’t be too worried about Methotrexate, I started it at around your age and 8 years later it is still serving me well. Plus chances are you will be eligible for biologics before too long and they are the gold-standard treatment.


Absolutely, diagnosis is huge conquest , as is methotrexate as initial and base therapy. Glad you got this far, it will get much better from here. All the best,


Before I start on methotrexate, I just wondered if anyone on here has MGUS? Does it cause any issues? X

Hi Freyza131,

So pleased you have a diagnosis and things are moving - go you!

I have MGUS. Mine is an IgA. Neither my Rheumy nor Hematologist were concerned about it and methotrexate, though you should talk to your own doctors.

My Rheumatologist and haematologist didn’t seem to be worried about biologics either - my gastroenterologist was more interested and decided to try a non-TNF blocker, I think partly because of the MGUS, but also partly cause two TNF blockers have failed me now.

@Jon_sparky might comment too.

I’m so pleased the limbo has finally ended for you. And you’re now on your way to be treated properly for it. I was diagnosed 4 years ago at aged 54 when PsA hit me all of a sudden and wiped out a lot of capacity. I have most of that capacity back now though given our meds. So pleased for you.

I don’t want to sound alarmist (we all have had enough of that this year) BUT I take MGUS very seriously. There has been some recent large scale studies done. Annual testing and follow ups is finally becoming important. The studies indicate that 1% per year of ALL MGUS patients progress to Multiple Myeloma (this is a more significant number thtn it seems.

Currently, only people who have a high- or intermediate-risk MGUS are recommended to receive annual follow-up tests to check for signs of progression. However, study investigators said that their findings support annual blood tests for all individuals with MGUS, regardless of their initial risk assessment. A potential benefit of annual blood testing is that it could lead to earlier detection of multiple myeloma, which could lessen or prevent severe myeloma-related complications like a bone fracture or kidney failure, Many times, people with MGUS are diagnosed with myeloma only after suffering from one of those complications.

Yes, @tntlamb makes a really good point.

The recent studies show very clearly that a person can change from low risk MGUS To high risk pretty rapidly over time, so annual tracking seems essential, regardless of the initial risk. Mine was medium risk at diagnosis, so I have always been tracked annually by a hematologist.

As tntlamb says, early diagnosis can help treatment before the type of complications (eg severe kidney disease) that will actually then limit treatment. There has also been a recent large trial suggesting that in ultra-high risk pre-Myeloma groups, a medication used for Myeloma can delay progression to Myeloma itself.

There’s also been some speculative research on the role of methotrexate in treating myeloproliferative diseases, but I think at the moment that is theoretical.

So when I say that my Rheumy and Hematologist “weren’t concerned” I mean about the combination of it and methotrexate (actually both of them acted like the MGUS was irrelevant too - but I think that’s their bedside manner - I was still doing 6 monthly blood tests and annual visits).

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IDK your age, but you mentioned

…I’m not sure you meant you’re really young or really old. Either way it sucks, but I feel bad for the young people who are having so many health issues when most people their age are in great health. It’s just not fair! But life isn’t always fair, is it?

I was so lucky only having psoriasis for 30 years before the arthritis started digging its claws in, so it wasn’t until my early 50s the aches and pains slowly took over. First my fingers, but then toes/feet, elbows, shoulders, neck and lower back. It seemed to be creeping around my body.

It was definitely my connective tissues, because the stiffness was my worst symptom. Seems like stiffness, oh well! But when you don’t move for 20 seconds and it hurts like hell to move again—stiffness is a big deal! I’m sure with the swelling of your knee and sausage toes, you know that pain all too well.

Good luck with the MTX…I can’t fathom what you went through and why it took so long for a diagnosis, especially if you have psoriasis! Hopefully your health will improve fast and you’ll be just like new in no time!

I am so sorry. It is not right and not fair and why do these things have to be so complicated - I will never understand. And this disease is hateful.

Im happy you finally got a diagnosis. When I finally got mine ( after about ten years), it was a huge weight off my shoulders. I felt like I wasn’t going crazy anymore! I hope you have great success with your treatment plan.

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