Update on what are the odds.

Barbieg

just got back from hubbies appointment this morning with the rheumy consultant and sad to say we are no further forward, in fact it was a complete waste of time. The consultant we saw last time told us the tests definitely showed he had inflammatory arthritis, but the tests to find out which type were contaminated so needed to be re done. This one today informed us he didn't have them, but luckily I had got a copy of them with me so had been able to see them. 2 of the tests showed raised levels and actually said so, but the consultant looked at them and promptly told us they were normal !! Considering he had been on steroids and still is, and he had been given a booster at his last visit, wouldn't they stop anything showing up with these later blood tests? All he told him to do was to slowly come off the steroids and see what happens! I feel so let down. We are in the process of transferring to another hospital. How can one consultant tell you , you definitely have inflammatory arthritis, and another tells you , no you don't? What do we do now? Sorry for the rant.

dreamdaisy

I've had this said to me before, it all comes down to personal interpretation and opinion on test results. The first rheumatologist I saw dismissed me out of hand, the second referred me back to orthopaedics who promptly (well they were prompt to reply, the appointment took another six months) referred me back, which led to another six wasted months. It is very frustrating but we have a complicated condition which does not necessarily present as it should. The steroids will mask things too, which doesn't help. I am sorry, this must be so annoying for you both. DD

stickywicket

It can be very disappointing when things don't go as hoped but these auto-immune arthritises are sneaky diseases. Some of us have very clear cut results immediately but for others it can be very much a case of yes / no / maybe.

I'm not going to speculate on what effect the steroids might or might not be having as I really don't know though I've a feeling some docs prefer not to prescribe them before diagnosis. Who gave them to your husband, the GP or the hospital? Maybe they were given because I think you said he has COPD so NSAIDS might be contra-indicated.

Sometimes borderline results can be interpreted different ways. I get the impression you feel that, if you'd opted for your own hospital in the first place, your husband would now be settled onto DMARDS but, as the song goes, it aint necessarily so.

One thing that arthritis teaches all of us is patience. There is a great deal of waiting and seeing. It's very frustrating.

As5567

Sorry to hear you have had a disappointing appointment. My only suggestion would be to keep some sort of diary of his day to day symptoms and level of stiffness/pain. I know its not medical proof but at least it can give who ever you see next some insight into what's going on without having to rely on just blood tests.

Barbieg

I've calmed down a bit now thanks. Of course I would be delighted to learn he didn't have what I have, I just feel cross to be told by one consultant that he definitely had inflammatory arthritis, and the next time you go to be told no you don't. It was the hospital that put him on prednisone when he went for his first appointment as his hands were so swollen then, and it was the consultant who insisted he had a steroid injection at his second appointment. The steroids worked as far as the swelling, but not the pain, so I feel in my mind that having the second lot of blood tests 2 days after the steroid injection wouldn't show any inflammation then. He now has weeks to slowly stop the steroid(prednisone) and see what happens. At some point this morning he mentioned PsA as hubby had psoriasis about 30 yrs ago. It only lasted about a week and was diagnosed by our Dr. ( Strange I know ) he said it could stay in the body? At the end of the day we will have to see what happens when the steroids have gone, so to speak. He did say he would write to my consultant to expedite the transfer over. Patience is called for I think.

dreamdaisy

In my experience steroids have not done anything to relieve my pain but the tablets conned me into feeling 'better'. Psoriatic arthritis begins (traditionally) in the smaller joints of the body such as fingers and toes: because mine didn't I was eventually 'diagnosed' as having an unspecified auto-immune inflammatory arthritis: when my psoriasis decided to put in an appearance the medical penny dropped but nothing changed treatment-wise.

I have a family history on both sides of auto-immune conditions but my parents dodged the genetic bullets they donated . I was born in '59 with eczema and developed asthma aged seven (courtesy of Ma) and Pa's mild psoriasis rolled up in 2006 but by then I'd taken it a few stages further. DD

daffy2

As DD so rightly says diagnosis isn't as objective a process as we might like, not helped by the fact that as humans we are all individuals. Sometimes 'normal' is down to the opinion of the medic on the day, which is why another may disagree at the next appointment, but an added difficulty is that what may be normal for the majority may be not normal for the individual. The GP told me I wasn't anaemic after my son's birth because my results were within acceptable levels, but the midwife ordered him to look at what my usual levels were, at which point he changed his mind. Similarly, if my daughter's BP is 'normal' it means something has raised it as she has low BP.
Seeing the patient as a complete, unique, human being isn't something the NHS is terribly good at, so it's no wonder that with tricky conditions such as these it can take time to sort out what's what. I do hope you get some answers before too long.

Barbieg

This forum is wonderful. Thank you to all who have replied to my rant. It helps a lot. I suppose I was too optimistic today. I really thought he would have a definite diagnosis. It's been such a roller coaster of emotions.