Feeling fed up!

[Freyza131]

Well had my long awaited rheumatology appointment today! Not a good day!! Just before I went into my appointment my neighbour messaged me to say my cat had been run over : (so was already crying before I even went into appt). Doc then said results of tests inconclusive so cannot diagnose. 4.5 years this has been going On and I am no further forward. I just don’t know where to go or what to do now!

He said if I do have psa I’m lucky because it’s not causing damage. I know this is going to sound stupid but I don’t feel lucky. Living with pain ever day is depressing and debilitating!

He said it could be fibromyalgia. He gave me an injection in my bum. I don’t know what it was because I was sobbing so much.

Said see if the injection helps with the pain and go back and see him in 2 months!!

Because I was so upset I could hardly speak to question him or say much! so right now I am feeling thoroughly fed up!! X

[michelle3]

I am so sorry. You’re right, not getting a diagnosis and treatment plan is awful. Pain is exhausting and depressing. If you do have fibro either alone or with psa, there are things you can do that help. Many support groups out there with support and suggestions. A silver lining here is you don’t have visible bone or joint changes. No nail deformity either it sounds like. I’m sorry about your dear cat. My dog was hit by a car on Thanksgiving when I was 15 and I’ll never forget it. Take care of yourself this week, surround yourself with things you love, comfort, good books, good foods. Pick up the phone and reach out if you can. I’ll pray for you as well.

[Poo_therapy]

Oh sweetheart poor you. I’m so dreadfully sorry about your cat, as a cat lover and animal lover myself, that’s just awful. Biggest hugs, lots of them. And it’s perfectly understandable that made you sob your way through your appt too.

The injection in your bum is likely to be a general steroid injection, commonly called a depo injection. If this is your first one, and you do have PsA it’s likely to help a whole lot within the next couple of days. This is because steroids help the inflammation PsA causes and if it works for you, it should last several weeks hence the appt in two months is kind of rational.

But there’s always buts. Steroid injections like this general one don’t work for everyone, they never do for me but steroid tablets do instead.So if it doesn’t work, it still doesn’t mean you don’t have PsA either sadly.

When you’re feeling slightly less emotional tell us what ‘tests’ he did? The problem is PsA tends to be seronegative, which means it doesn’t show up in any ‘test’, especially blood tests. It sometimes doesn’t show up on scans, MRI’s or obviously x-rays either. It doesn’t for me at any rate and yet I most certainly have PsA and am on my third biologic now too just to prove it.

The way an experienced rheumy in the UK should diagnose you is to do what’s called a PsARC physical examination. That is put you on the couch and examine every joint of your body starting at your jaw and working his way down to the last tiny joint on each little toe. Inflammation caused by PsA can be ‘felt’ by an appropriate experienced rheumy in this way and appropriately counted up. PsARC examines the 68 joints NICE believes is affected by PsA, although I believe that’s soon to increase to 72 joints. Did he do such a physical examination like that on you? If he didn’t we can help you prepare for your next appt with him. Because he ought to have done this as it’s part of the diagnostic protocol for PsA in the UK.

Sadly general hospital rheumys in the UK aren’t that appropriately interested or experienced in PsA. They prefer to treat RA which is much easier to diagnose. If you’re lucky you hit a good one at your local hospital but often times you don’t. I didn’t in Kent which is why I now travel to Bath to be seen a centre of excellence within the NHS for PsA. Sadly now given the changes in CCG rules it is harder to get seen within the NHS out of your Trust area too.

Also if he thinks it’s fibro did he even try the touch test on you? That doesn’t always diagnose fibro but it appears it does most times from what I hear.

I’m lucky too that my PsA hasn’t yet caused any serious damage. But that’s because I was exceptionally fortunate to be diagnosed early (3 months after it hit me) and then appropriately treated once I got over myself about the meds we have to take which sadly took me a year. So I was doubly lucky really given my delay.

In the meantime, catch your breath for a wee while. See if the depo injection works and bounce back then.

In the meantime lots more hugs for the loss of your cat.

[Sybil]

2 months sounds like a long time when you’re in pain. But in terms of rheumy appointments it’s not bad and in fact that’s a fair period for assessing whether the steroid injection helps. As @Poo_therapy says, it can aid diagnosis as steroids are more likely to help with an inflammatory disease such as PsA than with fibro.

Cats should live forever. I’m still mourning my ancient BF Milly who died before Christmas. That rheumy appointment must have been a very difficult one for you. Yet I think you actually did come out of it with something like a way forward.

Of course if you do have fibromyalgia you need a really clued-up doctor too. My daughter-in-law seems to have got on top of it and then some after years of severe fibro-induced disability and misery. The key was her, obviously, but as I understand it, a very good doctor helped her to help herself in exactly the right ways.

Which hospital do you go to? You’re in Bedford, right? Could be that you will need to seek a second opinion / new rheumy. I had an excellent rheumy in Hereford and, since moving house, I go to Bath just as Poo does. Travelling is a pain in the neck but can be worth it. If you do decide to move, post on here for recommendations. I think there are some London hospitals who serve PsA patients very well.

You may feel that you are marking time and indeed 4.5 years is way too long without a firm diagnosis. But at the moment the ‘steroid test’ sounds appropriate. The injections in the bum have always worked for me, I think they’re great.

Final thoughts: do you get a thorough joint examination? And, also, how do they know that there’s no damage?

[Freyza131]

Thank you all. A little less emotional today. I managed a good night sleep…was exhausted.
Tests…he did blood tests for inflammation, CRP & ESR which are raised (not massively but consistently since 2016). He did an RA test which was slightly raised. That’s it as far as him doing tests is concerned. Before I got the referral to him I had a few xrays and ultrasounds as a result of referrals from my GP. Results of those:-

swelling of left wrist. synovitis at base of thumb. awaiting a guided injection for this. saw them in July last year and still not received an appointment through.

ultrasound on shoulder - trochanteric bursitis and inflammation in right shoulder.

when I was seen by the rheumy on 14th October at initial appointment, he examined shoulder, elbow, wrist, knee, ankle and toes. Findings:-

pain and swelling over left third MTP joint. swelling on wrist, pain in both knees and right hip. right shoulder movements limited at glenhumeral joint.

that is all that I have had done.

He gave me an 80mg of Depo-Medrone in my right shoulder at that appointment which eased a little to start with but back to how it was before now.

slightly positive, my hips seem less tender/stiff today following the injection yesterday.

[Sybil]

Those blood tests are the standard ones. Just wondering, what are the CRP or ESR numbers? As regards ESR, ‘normal’ varies from person to person quite considerably. I would have thought anything over 30 (I’m guessing) for some considerable time would suggest an inflammatory condition. And yep, I am just guessing based on the fact(?) that 20 or so can be normal for some people especially as we get older.

The trouble is that you are unlikely to know what your normal is … mine would seem to be 0 - 1 but I didn’t know that until I got treatment that worked!

Glad to hear you seem to be getting some relief already from the steroid injection. Quite apart from the physical relief, it could provide a breathing space from which you can assess where you go from here.

[Poo_therapy]

First I’m delighted your hips seem a little easier - that’s a big positive. Having had hip bursitis myself any hip pain relief is so welcome.

I’m not sure why he thinks those tests and symptoms are ‘inconclusive’ though, that doesn’t make sense to me. Your symptoms are worse than mine was at my first rheumy appt and it seemed clear at the time PsA was what I had and sadly 4 years later still have without a shadow of a doubt.

So he did a rheumatoid factor blood test - did he? And it was slightly raised. I was initially RF negative and now I’m RA slightly positive. Too slight to indicate anything rheumatoid though and low enough to continue to positively diagnose PsA. In real terms it almost doesn’t matter as the treatment protocol for both RA and PsA is exactly the same. Both indicate an inflammatory process going on that’s due to an abnormal immune system. Both require aggressive treatment - not a wait and see approach. And initially most certainly, the meds for both are exactly the same.

Swelling of a wrist, synovitis of your thumb base, shoulder bursitis, swelling of MTP joint, pain in knees, pain in hip are all very common in PsA and would appear to be indicative of an inflammatory process being out of control. There’s nothing there that would indicate it’s ‘inconclusive’ at all. Rather it indicates the opposite. More expecially as it’s not just in hands and feet too.

However as @Sybil said it’s always so individual and you don’t yet know your ‘normal’ as regards ESR since you presented with inflammation in the first place. I still don’t know what my normal is as we simply pay no attention to my blood tests anymore other than to ensure the meds I’m on aren’t affecting kidneys, liver etc.

I so hope the depo shot continues to work for you. Hope it does give you that breathing space.

When you’ve caught your breath a little more. Start researching your rheumy for PsA experience. Just google his name. If he’s not written and published medical papers on PsA, talked at meetings or symposiums concerning PsA, been involved in NICE approval for new PsA drugs etc - ergo he’s not a PsA specialist at all. At least see if he has even an ‘interest’ in PsA. It’s likely he doesn’t if he’s dismissing your present symptoms as inconclusive.

And sadly this is really common up and down the country in the UK. So then under the NHS you have the right to request a second opinion. However the best way to do this is to research yourself the person you wish to see and present that name to your GP, rather than expecting your GP to do the research for you. GPs simply don’t have time for that any more. So we need to help them help us far more now. Yes we really do have to become our own best advocate sadly.

You can get lists of rheumys in the various hospital websites for hospitals in your area. And repeat the process above of googling them in order to find one who at least has an interest in PsA and work it from there.

Hope this helps.

[Amos]

Thanks for sharing your experience with us, not only will you get a compassionate ear from this site but more health experience than most doctors will take time to give. Also, WE learn from your sharing and it helps me to know I’m not the only one frustrated. I just learned from Poo Therapy that there was something called “PsARC”. I’m convinced that my rheumatologist has never heard of it either! I feel that I have wasted a year with very mediocre attention from a system in which a diagnosis is based on 20 minutes of time with an expert every 3 months. While my rheumatologist constantly bashes steroids, at least they worked when I did use them either by injection or orally. Prednisone, (last taken 9 months ago for 10 days) reminded me what it feels like to get out of bed and just feel great! Hopefully you will encounter some great days ahead for in them you find a better perspective, clear head and a break from the daily pain! Press on…there is enough reason to hope that better days are a real potential for you…but it appears from everything I’ve read, we are in a long, slow process. Even the “nothing found” seems to be part of the mysterious Psa diagnostics.

[Sybil]

@Amos

20 minutes of time with an expert every 3 months

Blimey, aren’t you the blue-eyed boy! 6 months in my neck of the woods (7 in reality). Of course I get it though, truly I do.

The steroids … chances are that your rheumy is right on that score at least. Long-term steroid use messed up so many people before the ‘new’ drugs came into play. But I totally agree that steroids can be a great rescue remedy at times. And seems that what you need from your rheumy is a more proactive approach to using those new drugs!

[Poo_therapy]

@Sybil

The steroids … chances are that your rheumy is right on that score at least. Long-term steroid use messed up so many people before the ‘new’ drugs came into play.

Amos @Sybil is so right on this one. Steroids are a tremendous rescue remedy. But I’m a life long asthmatic. Developed it at 18 months old. Nearly died a couple of times of it as a child. Classically and even today steroids are a proper wholehearted rescue rememdy for asthma at a dose far higher than what’s given for PsA. And also some inhalers contain low dose steroids too.

I’m nearly 58 now so over the years I’ve had several bashes of high dose steroids. I’m grateful my asthma generally was very well controlled with even decades at times causing no issue.

Then 4 years ago along came PsA. Steroids again were obviously the rescue remedy initially. In 2017 I mysteriously developed 2 stress fractures in my pelvis for no reason. Gosh was that painful. Last spring I mysteriously developed hellish back pain, turns out I had 3 compressed lumbar vertebrae. And gosh was that painful too. Turns out I’ve got osteopenia almost at the level requiring treatment for osteoporosis and with that history definitely requiring treatment for osteoporosis. Steroids can leech the calcium from your bones. And obviously they have for me as there’s no family history of osteopenia or osteoporosis.

Believe it or not I’m presently in the middle of a temper tantrum about the osteoporosis med the NHS demands I try first being the cheapest of course. The reason being is that it can corrode my stomach and I’m kind of ‘done’ presently on med induced side effects and awfullness, given various relatively uncommon issues I’ve encountered over the last 4 years with PsA meds fighting eachother and then me.

However initially at any rate with PsA, I couldn’t have managed without steroids. I certainly wouldn’t be here today without steroids for asthma either.

My mother had COPD, indeed she died of it but at a grand old age too. Steroids are obviously used for that too. I become like ‘positive Pollyanna’ on steroids. Everything is so incredibly wonderful altogether. My mother got ‘roid rage’ so badly that plastered all over her medical notes was a prohibition on giving her steroids. They really did mess her up from a daily living point of view.

So steroids like most meds come with issues. Some very serious indeed. Therefore caution is always required and a lack of caution from any doctor about them would concern me greatly.

Incidentally though all is not perpetually horrid on either PsA or its meds. Number 3 biologic - Cosentyx is presently working extremely well for me with zilch side effects other than I sleep incredibly well the night I take it once a month. A result of a rheumy determined to get me living my best life. I’m 2 and bit months into now. I can climb steps again and walk my dog for longer and do it faster. I’ve energy again. I’m working better at my job. I’ve energy to sort out normal household issues better. My home is tidier and more organised. I’m on top of things and planning stuff coherently again. I can make social dates organised some time ago without crying off on the day.

We’ve just booked two holidays for this year. Both with a relatively high physical element. We’re taking a barge for a week on the English canals to cross some viaducts I’ve always wanted to do which are incredibly high up a valley in Wales/Shropshire. Just the two of us plus the dog. We’ve got to operate the locks on the canal too, a first for us. And then later we’re off to the Lake District which primarily a walking based holiday. Although I won’t be climbing the high fells/mountains, like Alan will, I will be walking arounds large lakes virtually every day or walking the fabulous beaches up there. So please have hope, as I persistently do. There is life with PsA too - really there is. Or at least I’m damn well going to ensure there is for me.

[Bern]

Hang in there. It took over a year for me to get diagnosed. 8 years later I switched my care to Ohio State University and was told I had at least 3 of thr 5 kinds of psa plus probably an autoimmune disease with no name yet. It shouldn’t affect your care as there are protocols that the rheumatologistS follow. You should still be able to be treated.

[Bern]

I have to use steroids at least 2-3 times a year for flares.

[tamac]

Blood test don’t mean much. If your doc is depending on them for diagnosis, start looking for a new doc now. Not suffering any damaged? Horse s–t! PSA still hurts like hell even though it is slowly eating away at your joints. None of us are lucky.

Sorry about your cat, that really bites. My sweetest litte cat is over 18 and I am about to lose her.