Confused and upset

[Tinat3]

Had a hospital visit yesterday with my rheumy nurse, has now been 4 weeks since starting the mtx.

I have been struggling again with pain and stiffness in both knees but more so the left one as usual. Have previously had a steroid injection in this one which did help for a few months but has worn off.

I do believe that because of the pain that I am in this has not helped with the severe stiffness, pain and slight swelling that I have in my left hip as I feel that when walking I am over compensating hence the hip troubles. Am I making sense????

So upon examining me the nurse was quite concerned about the level of pain and stiffness that I am still in so decided to call in a consultant to take a look at me.

He came in, quickly examined me by rotating my knees and had a quick look at my blood works in particular I think was the CRP levels which I think monitor inflammation. These have always been low as well as my rheumatoid factor hence the diagnosis of Psoriatic Arthritis.

He then quickly questioned me about when I felt worse which is always upon getting up in the morning, after sitting for long periods, driving etc. I told him that although I have had only 3 major outbreaks of psoriasis in adulthood there has not been a lot else.

Basically, he was concerned that as I had not begun to react to the mtx he was questioning my original diagnosis more or less saying my symptoms were not consistent with PsA. He went on to say that as my blood levels were low and I did not display any redness or heat on my joints I may have something else. He thinks that as my symptoms of pain began around November it may be a calcium deficiency and has ordered a blood test for this. As well as that he would like me to have an ultrasound of my ankles and possibly mri of my hips. Having done my homework on PsA I do believe my symptoms are consistent but feel at a total loss now and totally bereft. Are anyone else's crp low all the time or is it just me???? I know that I am not imagining the pain and stiffness. My hands do swell,my ankles are still swollen and have been since September. My knees are puffy and i do experience pain and stiffness throughout my whole body. Strangely enough the nurse actually said that she could feel the beginnings of nodules on my thumb although i havnt noticed.

So im lying here wide awake and its 4.04. I feel totally rock bottom again and just feel like throwing the towel in!

[Mimi21]

My markers are always low too even when I think I'm having a flare or lots of mini flares. I get swollen joints everywhere but I don't always have redness, and each joint usually only lasts 1-2 days. I am currently having bad knee trouble that virtually came on this bad overnight . It's in both knees but particularly the left and I've been struggling to walk. Have seen doctor, and rheumatologist who gave me a steroid injection though not in joint . Also increased my mtx by 5mg. This has almost calmed down the rest of the body but I ended up taking myself off to a physio about my knees. He didn't feel it was just the RA and have me exercises to strengthen knee support and taped then knee which has helped immensely. I can now see that I have been compensating for pain and either adjusting walk, stand , and even sleep positions which has weakened other parts of the body. Hospital appointment next week so it'll be interesting to see what consultant thinks!

[Tinat3 in reply to Mimi21]

Pls do let me know how you get on mimi. Its reassuring to know that other peoples experiences are similar to mine but so frustrating that the consultants do not get this! Good luck x

[Hidden]

Oh you poor love it's so horrible to be this unwell and not to be believed. I think your instincts that this is inflammatory despite the low inflammation markers will surely right. If it was all osteoarthritis as your rheumy is maybe thinking then you wouldn't get the swelling in your hands I feel and having psoriasis seems key even if it is quiet just now.

I am lucky because my inflamnatory markers are always somewhere between raised and high. But many others here have low inflammatory markers despite pain and are seronegative for RF as I am too. They still get RA and sometimes it is erosive. The PsA people I know generally have very high infkammation markers though but I'm sure this isn't a rule.

Also MTX tends not to make a difference for about 6 weeks up to 3 months so it seems a bit soon to be writing it off? My RA got worse before it got better so a month in I was flaring like mad. It did work eventually but not for ages. DMARDs tend not to be so effective with PsA anyhow I've read. If your rheumy decided that you don't have inflammatory arthritis but have OA instead it will be on the strength of the MRIs and other tests j would think. At least he is checking all this out now. If you aren't happy with this decision you can ask for a second opinion - this is your right in the NHS. PsA is often misdiagnosed because of the seronegativity.

I too get a lot of stiffness and locking in my lower back after sitting for any length of time. They tell me this is post menopausal wear and tear but others older than me don't have locking bums so they can barely move after being still for any length of ?! I've never had any imaging of my lumbar region or psoriasis but often wonder if I may have some PsA too as my toenails have gone yellow and my RA isn't classic at all anymore.

Please try not to despair - hang in there and fight your corner if you have to. You aren't alone.

[Tinat3]

Thanks TT. Some of my toe nails too have become very soft, thick and brittle too. This has been happening for about 18 months but way before any other symptoms. I have no choice but to hang in there and will live in the hope that the scans will at least show something.

Have a good day x

[Jacki08]

Hi--- so sorry you are stuggling and in pain--- it's horrid. My bloods have never been anything but normal--- making diagnosis difficult--'it took 4.5 years actually. My RD was only confirmed after having a scan of my hands which revealed the inflammation. Good luck ☺

[Tinat3 in reply to Jacki08]

It's terrible that your diagnosis took so long Jacki but im pleased

that you were finally diagnosed.

My biggest fear is that they will stop my medication as I am in a lot of pain. Lets hope the same happens for me with the scans x

[Jacki08 in reply to Tinat3]

I forgot to say that it took at least 9 weeks to get even slight improvement on mthx. Now on injections -( going up to 25 mls next week) and feeling much better. Hang in there chick😊x

[Livingston]

I completely agree with what others are saying. Standard advice is to allow at least 12 weeks to begin to see improvement with MTX & it does seem strange that your doctor is looking to maybe ditch it already.

I generally have low inflammatory markers too and it can be a real struggle sometimes to get across to them that you don't necessarily feel what they think the numbers say. I was a nurse for a lot of years and the best consultant I ever worked with was a haematologist. When doing ward rounds he used to berate medical students who started off on a recitation of the patient's 'scores' for this, that and the other test. He always used to remind them that 'We're here to look after the patient, laddie - not the numbers. How does the patient feel?' All test results need to be given context. I was hospitalised at one point when I went from being able to walk to not being able to weightbear at all - overnight. The consultant rheumatologist I saw then was careful to note that although my ESR was only moderately elevated, it was 4 times what it usually ran at and he took that four-fold increase to be very significant, even though the absolute figure wasn't that alarming.

I suppose what I'm trying to say is that doctors aren't always spot on. Hang in there. It took me years & years to get any sort of AI diagnosis (and even then it was the wrong one) - I thought I was going mad because nobody got how awful I felt. If you see him again & you still feel he isn't helping, you could always ask for a second opinion - you are absolutely entitled to one.