Change of diagnosis

Tiswas

Well, it's been a bizarre 2 months. All through October I 'struggled' with very painful ankles. Then in the 3rd week my right knee came out in sympathy. All this came in the wake of an annual appointment with my rheumy the previous month when I told him that things were pretty good. A bit stiff in the mornings, the occasional bout of pain. But, in general, not bad.

At the end of October I was having great problems walking with swollen ankles, feet and my right knee was twice its normal size. So, on the 30th (Fri) I phoned my Rheumy Nurse and she got me an appointment for the following Thursday.
As usual things had calmed down a bit, but they still decided to give me a Steroid injection to my knee. They also wanted to get some fluid out of my knee but didn't succeed. The following day I was walking well and by the Sunday I ready for the Grand National.
Two weeks later and I had another massive flare up which affected every main joint except my right knee and my right arm. I was so bad that I wore the same socks for 3 days because I couldn’t reach to get them off. I couldn't reach my my mouth whilst holding a fork in my left hand, I had to use a shopping trolley as a walking aid! And boy was I feeling down... I phoned the Rheumy Nurse up and she said “we can't have you like that, can you get here tomorrow at 2.00?”. I got there allright and she gave me another Steroid injection, this time in the bum. 2 days later I was right as rain.

Just over month on and I had a follow up appointment yesterday with a different (to my usual) rheumy. I told her that I am very stiff in the mornings and had a few aches, pains & clicks. But, “I can live with this”.
She looked at my blood test results, looked at me quite concerned and said “Oh my, was you really poorly at the end of October, your inflammation was sky high”.
She said that as the steroids had worked, she would like to get me onto some other medication in addition to the Sulfasalazine to try and stop these flair up's. But, didn't know what to give me as she wasn't sure what they were dealing with. Inflammatory Rheumatism or Gout.
She then, after consulting with the other Haematologist (the one who had in fact diagnosed me) in the next room , told me that at the next flair up I must phone them and they will get me in ASAP as they want to see my joints when they are swollen. Seems sensible to me!

I do feel that I am getting some great & speedy treatment at the moment. But, what concerns me is that after being diagnosed by one Rheumy 2 ½ years ago with 'Sero Negative Inflammatory Rheumatism'. I am now being told by another that they don't know what it is definitely. I'm not sure whether this is a good or bad thing.

I would love to hear anybody else’s opinions.

daffy2

I'm not sure whether this is a good or bad thing.

Neither, would I think be the answer to this! Diagnosis can be a lengthy process, with wrong turnings along the way sometimes. On the plus side you are now on the radar as far as the appropriate medics go, so with any luck they will be able to sort out a treatment route for you even if the diagnosis remains open to discussion or revision. I hope things stay manageable for you during the festive season - it would be tiresome to have interesting joints when there's no-one available to look at them!

Tiswas

Hi daffy2

Thanks for your reply to my lengthy post.

I think your comments make a lot of sense. Like you say, I'm in the radar and have the 'Hotline' number.
Just hope that I don't have to use it. Now that would be a result!

Regards

stickywicket

To be honest I don't think it matters much. The treatment is much the same. You are being dealt with. That's the important thing. Please let's know how you get on.

dreamdaisy

I recall we had a wheel-chair-bound member on here a few years ago who lost five stones: that taught me that if there's a will there's definitely a way. There are around 300 kinds of auto-immune inflammatory arthritis so narrowing it down can take time but the meds stay the same. The main thing is that medical people know you are 'around' and may need their help, in my experience that's usually a good thing. I wish you well. DD

barbara12

Oh tiswas I fo feel for you, I am sort of in the same position they say one thing then change there minds...its awful not knowing what is going on, at least knowing what you are battling can help a little
I do wish you well , like you say you do seem to have a good team around you..hopefully they will come up with some answers..

Tiswas

She then, after consulting with the other rheumatologist (the one who had in fact diagnosed me) in the next room, told me that at the next flair up I must phone them and they will get me in ASAP as they want to see my joints when they are swollen. Seems sensible to me!

Sorry for reviving an old thread. But, it has all of the history and stickywicket did say "please let us know how you get on" plus I need more advice.

It was 13th November that I had my last steroid injection (just over 2 months ago) and things have been 'ok' up until Wednesday (Jan 27th) when I noticed that my feet had swollen. I also drove to the shops which is something I never do.
By midday my feet were painful & stiff so I phoned the Rhumie Nurse and left a message. She didn't phone back, which is unusual.
To cut a long story a bit shorter... I called again later and twice on Thu & Friday. Everytime leaving my name and number. This, is not normal!

I resigned myself to a weekend of 'self' treatment. I have in stock Sulfasalazine, which I take daily. Co-codamol, which I take as and when. Something else I have, to take at the start of a flare-up or if things get a bit rough is Naproxen (500mg).

As things were getting steadily worse I decided to take 1 Naproxen (Omeprazole first) on the Friday and as I had a comfortable nights sleep and was walking a little better decided on 2 tabs for Saturday thinking that maybe they were the cure after all.

Blow me I woke up at 1.00am with pain in my foot at a level that I have not experienced before! No matter where I put my foot I couldn't settle.
I did doze off occasionally, only to be woken by my foot.

I never been in so much pain before. It has spread to my knees, left wrist, elbow & shoulder and the base of my spine.

I couldn't get out of bed until 1.10pm as prior to that it hurt so much when I tried. I then started to cry... saying stuff like "what the hell have I done to deserve this".... etc. It took me a further 10 minutes to stagger into my armchair, were I am now giving you good people an ear bending!

I have had a Naproxen along with some cereal (I have a fridge within arms reach).
One question that I have is "do you think that it would be OK to have some Co-Codamol (30/500) along with the Naproxen? Do they mix?

I can just about cope with the other pain in my body, but need something to calm the mixture of sharp & burning pain in my feet.

One other symptom I have is 'shivering & goosebumps' whilst in a very warm room... anyone else had this?

Regards All

stickywicket

I'm a bit pushed for time so please excuse me if I'm brief. I don't mean to sound rude or uncaring.

1. The steroid injection lasted just over 2 months. That's sounds about right to me.

2. The rheumatologist wanted you in at the first sign of a flare but no-one from the helpline got back to you. What rheumatologists want and what the NHS can provide don't always tally. I know some helplines are only manned a couple of days per week. Keep trying and emphasise the rheumatologist wanted to see you in a flare.

3. 'cure'. 'CURE?' Wash your mouth out, Tiswas. No such thing.

4. It's OK to mix cocos and nap. Cocos are paracetamol + codeine and nap is an NSAID. Don't mix cocos with paracetamol products though.

5. 'shivering and goosebumps'. Pain does strange things to us. It could simply be that. You might also be harbouring a virus of some kind. A raised temperature often sets off a flare oin me. Also, when we're on DMARDS (sulph) viruses take hold before we're aware of them. Today, after all my years of experience, I'm not sure whether I'm going down with something or having a post-meth day. Time will tell.

I hope they get back to you soon.

Tiswas

Thanks Sticky for answering at all, let alone each point, considering how you where stuck for time. How thoughtful.

I was aware that the steroid injection was at the end of it's life, but I wasn't expecting such a violent flare so suddenly.

I won't be complaining to the Rheumies when they do get back to me. I've had some pretty quick treatment during 2015.

Thanks for the advice about the co co's. I needed some reassurance. You made me chuckle with the 'cure' comment!

What's a post-meth day?

Once again.

Thanks!

dreamdaisy

When I was taking naproxen it was on a daily basis - I was told that to take it as and when doesn't help it to help you because it doesn't have time to build into the system. I am now able to take diclofenac as and when because my inflammation is very well controlled by my triple therapy of injected humira, injected meth and tablet sulph. I also take four co-codamol 30/500 every day to keep pain at a bearable level but I still get the feedback that it's time for a break. I have an auto-immune and OA plus fibro. A 'post meth' day can happen one or two days after a dose when you might feel tired or sick. Steroid injections do not address the root cause of the trouble, they only mask the symptoms - you haven't 'immediately' flared, it was rumbling on all the time but the steroid had lost its ability to mask. (I remember my consultant telling me this when she put me onto prednisolone.)

If a patient presents with exactly the right symptoms in precisely the right places (and RF is present in the bloods) then diagnosis can be a fairly straightforward process. I didn't do any of that and the medical penny didn't dawn until I was four years in - the 'label' changed from 'auto-immune arthritic' to PsA (psoriatic arthritis) but the meds didn't. In the weird and wonderful world of auto-immune arthritis the label is not the main thing - taking the best meds to help one is. DD

Tiswas

Hi DD

Thanks for the info.
I'll ask about the Naproxen when I get to see the rheumy.
As of last Wednesday I am self treating and will take anything to stop the pain. A friend gave me 2 Tramadol, but I haven’t taken them after what I read about them on the internet.

I understand what steroids do and how they work and was ready for it to stop 'masking'.
What I wasn't ready for, was how quickly & violently it happened.
Within about 6 hours from having achy swollen feet I was immobile!
Suppose it's a bit like banking pain. Pays back with interest!

Monday noon and I still can't get through to the Rheumie Hotline. The only difference is that it is now ringing out no reply. Something is definitely amiss.
I've tried the main switchboard and it's the same for them. They have tried Paging the nurse and also their own direct line to the Rheumatologist Department. No Response...
In the end they put me through to PALs. Guess what.......Answering machine and I'm waiting a call back.

Regards
.

dreamdaisy

Re the steroids, I recall taking my first dose of 20mgs thinking 'Here goes nothing' only to easily get out of bed four hours later. At the time I'd been off everything for a while and was really struggling so it goes both ways!

Whatever we do the pain does not stop, it can be dulled but no more than that. The tramadol and its stronger cousins will remove YOU from the pain which to my way of thinking is not an answer. The body also adjusts and people find they need more and more to gain less and less. I know that life became easier for me to manage when I could no longer remember being pain-free. DD

PS Never take anything medicinal that friends give you apart from brandy.

Tiswas

There has been an additional 180 views to this topic since I revived it. So come on you voyeurs, join in! (Its a good job that I've had the 2 best on here already )

UPDATE
Yesterday I searched the Internet for 'Rheumatology **mytown**' and came up with an alternative number at the hospital I attend. I phoned it, and whilst I was told that I had the wrong number he was very interested to hear my tale and would email the Rheumy Nurse and ask her to call me.
He (the random person) called me back to say that his email had been replied to by an automatic Out of Hours message saying that the Nurse was away on holiday until next Monday (another week away). So, he would collar the Rheumatologist asap.

I got another phone call from the Random Man this morning to update me and basically tell me that I was right in that the Nurse had gone away, nobody else had checked the answering machine and it was full up by Friday and ringing out 'no-reply'. He had drawn up and printed off my last appointment letter and given it and my tail of woe to the Rheumatologist who had promised to sort it all out.

At 12:00 I got a phone call from the appointments team and I'm in tomorrow at 10:00

Things go wrong and I'm pretty sure that lessons will have to be learnt from this.
But, wasn't Mr Random FANTASTIC! I'll do my best to meet him eye to eye & shake his hand!

'

stickywicket

Wow! I think you've had both the worst and then the best of the NHS now. What a great bloke! I do hope you can manage to thank him as who knows what a major difference he might have made to your life? Please keep us updated. I hope the appointment goes well.

dreamdaisy

Good luck for today, I hope it goes well - and thank you for the compliment! :oops: DD

PS In your shoes I would ring that number again and, if Mr Random answers, ask him for his name then fire off a letter of praise to the powers-that-be.

stickywicket

Good luck from me too

theresak

Hello Tiswas,

I hope your appointment went well, and you have some of the answers you need. I agree with DD that finding out Mr. Random`s name would be a good idea - he sounds a gem!

Apologies for not posting on your thread before now, but not been a good couple of weeks health-wise.

Onwards and upwards.

dreamdaisy

Hello again, how did it go? I hope you have some news for us whether it be good, bad or indifferent. DD

PS I've a modified form of onwards and upwards - I say onwards and sideways.

daffy2

And doesn't this demonstrate that however good/experienced the medics are, if the admin side doesn't work then patients are going to lose out and money be wasted. Frustrating for everyone and also unnecessary, but sadly, in today's manager led target driven climate, inevitable.
Yes I agree a thank you letter is in order - if you can't find a name then giving dates & times & dept contacted should help to get it to the right person. I also think that a letter to management and PALS is in order, not a complaint as such, but just to ensure that someone knows about this . There are 2 problems with this sort of incident. One is that those in charge may be genuinely unaware that there are problems as no-one has noticed and/or told them(increasingly common in the today's climate of auto-reply emails which are not followed up), the second is that staff may well be constantly informing management of problems but until a patient complains nothing is done.This second situation is a universal one and not unique to the NHS - it was a constant bugbear when I worked on the deli counter of a well known supermarket, that unless a customer made a (preferably written) complaint then issues were just ignored.

Tiswas

Hello All
First of all a BIG APOLOGY for not responding sooner.
On Thursday I couldn't be bothered with anything except sitting in my chair watching telly! (I'm sure that you've all been there).
On Friday I got 'tied up' with our local club and yesterday my WiFi played up!

I got Mr Randoms name on his second call, so I'll be able to get a proper credit awarded to him. As for PALs, they also decided that I wasn't worthy of a return call(s).
On the day, a friend gave me a lift and helped my to the clinic, but had to leave me and go to work. This was met with disgust by the Nursing staff.

The Rheumy called me and as I was opposite his door he saw me struggle to stand and make my way towards him 6 inches at a time with the help of a single stick. He stopped me in the doorway and asked where it hurt. I told him both feet, right knee and my lower back. He asked where in my back, I pointed just to the left of my lower spine, sort of at the top of my Buttock.
He said ''you need to go straight to X-ray. I'll get someone to take you''.
This was met with more complaints from the nursing staff who took me (we shouldn't be doing this, not after last time & that man had a chorony , why are you on your own? how are you going to get home? etc, etc.)

They X-rayed my back and both feet and when I was whisked back (at breakneck speed, with a running commentary of complaints) to the clinic the Rheumy announced that there were no breaks in my back - good grief!

They (2 Doctors now) drew quite a large amount of (Kermit Green) fluid from my knee and injected some steroid in. Inspected my feet and decided that my right one in particular was very hot and swollen, also that I had an infection which probably brought the flair on.

I went away with a prescription for: Amoxicillin, Celecoxib & Omeprazole and Tramodol (which I didn't actually get because there was a 'boo-boo' with the prescription and I ended up with Co-Codomol, (told to still take the sulph), a referral to Physio and a follow up appointment next Thursday.

On Friday I was moving about with acceptable pain / stiffness. This (New) pain in my Buttock has got gradually worse though and kept me awake most of last night and I'm struggling to walk today!

Ho Hum!

stickywicket

Wow! Full marks to your rheumatologist. That was an amazingly ad hoc thing to do and definitely the right one if he thought your back could have a fracture. It's not always that they do steroid jabs on the day either. Often it's a case of make an appointment and wait and, yup, the fluid that comes off is very nasty-looking. I think he's been very thorough and I hope next week's news is good.

To be fair, it's not the nurses' job to wheel patients to x-ray. That's for porters.

Do you manage to stagger your pain relief so that you can take some going to bed? I find that helps a lot. Much easier to put up with it during the day.

Tiswas

Hi SW

Yes they were pretty thorough.

I have been taking the co-co's at 6 hour intervals. ie: 5pm, 11pm, 5am, 11am. So they should be working all the time.

Regards

dreamdaisy

I think he did the right thing in referring you for an Xray but getting hold of porters is not always easy. It's a shame your lift had to go to work, it may be better for you to arrange hospital transport, they will collect you and take you home but some waiting around will be inevitable. Or if you are close enough take taxis, I did for my recent midday rheumatology appointment because I knew there would not be any disabled parking available at that time - and there wasn't!

Increase your water intake (and fibre too) because one of the effects of cocos can be 'blocked drains' What strength are they? I have the 30/500 and they are pretty good at dulling the sharper edges. DD

stickywicket

How is it now? Did you get a better night? If you're taking the cocos regularly they shouild start to make a difference in time.

Tiswas

dreamdaisy wrote:

Increase your water intake (and fibre too) because one of the effects of cocos can be 'blocked drains' What strength are they? I have the 30/500 and they are pretty good at dulling the sharper edges. DD

Yes.. I have had them before, but only took them as and when needed. At the moment I need them all of the time.
They are 30/500. The only thing is that they zonk me out

stickywicket wrote:

How is it now? Did you get a better night? If you're taking the cocos regularly they shouild start to make a difference in time.

Things are better than last week and I am moving about now. Also, sleeping better.
The only thing is that my left knee (which was OK B4) has come out in sympathy :roll:

Appointment Thursday. So, things could be worse....

Regards All

dreamdaisy

In my many years of being arthritic I soon learned that taking things 'as and when' they were needed did me no good at all because it gave everything the chance to build to such a degree the pain meds didn't help. I began with 8/500 (pointless), developed to 14/500 (ditto) but the 30/500 version only truly hits me at night, so I will take two around bedtime (anywhere between 20.00 and 21.30) but not to be repeated after 04.00 because then the dreams are dreadful. A morning dose between 09.00 and 11.00 is enough to see me through the day but I am fortunate in being female: we have less pain receptors than males, for obvious reasons.

Finding what suits us and our needs is far from easy and can take much time. I wish you well for Thursday and please let us know how you get on. DD