Update following rheumy appointment

Mat48

Hi - thought I'd do a quick ( :oops: :roll: :P - when have I ever been brief?) update.

As a few of you will know I had my rheumy appointment yesterday. I did take a typed list of new symptoms and things I always forget to mention. I also attached photos of swollen soles/ toe pads, face spots/ uticaria and white toes. He asked if he could keep these having glanced through the sheet briefly. His first quest was to locate my ANA results off the computer, which were negative three months ago. So he felt that made all the secondary possibilities such as Sjogrens and Raynauds and Lupus more unlikely.

I emphasised that I was getting increasingly perturbed by the icy cold numb sensation legs and feet but he didn't comment on this. He examined my hands and upper body (i.e touched shoulders and looked at hands) pretty quickly and then took more heed of lower body - knees and feet especially. He found my toe pads swollen and my metatarsals very tender. He quizzed me about how I had got on with the month long course of Prednisolone and wanted to know if there was a dosage level I had found that worked well. I said 10mg felt pretty comfortable although my feet were sorer on this than at 20mg - which I found hellish in other respects.

We discussed what next and he agreed with me that re-introducing Hydroxicholoraquine was a good idea as he felt it bought us some time at least. He said I should take Naproxen and pain relief as and when needed and he said he would see me again when he's here in January.

He did explain that I wouldn't qualify for anti-tnfs yet because my DAS was influenced by all my problems currently being in my feet and ankles - which included with the score for RA DAS for some reason. I suspected this outcome but it was good to have it confirmed. He said he would be fine about putting my case forward for Biologics outwith the DAS but he and the physio (who acts as rheumy nurse here) both were quite sure this would be rejected by our health authority so really no point. I agreed because I don't feel that I actually need the stronger drugs yet either. He sent me off to have my feet x-rayed and I got tipped off later at my choir practice that the x-rays looked clear of erosion and "unremarkable" to them both - although they have to be sent away for a radiologist's check at the main hospital.

So I'm hoping that the Hydroxy sorts the inflammation in my feet out and brings my ESR, currently sitting at 52, back down to the 20s again where it was when I was taking Metoject and Hydroxy this time last year. I think, because we both realise that the icy numb legs could still be a hangover from the methotrexate I took for 20 months (failing to find any other reason for them), he is keen to keep me away from drugs like Leflunomide - which we discussed too. He said that as I have a delicate tummy it would probably be better if we stuck to Hydroxy - and if things worsen we should aim for anti-tnfs instead of trying yet another DMARD and risking more side effects. At least I think that was the gist of what he was saying.

I am still a bit worried (being the world's worst worrier) about the ESR being raised again and the all over tingle and worsening circulation issues too - but I'm trying my best to just accept that this is complicated and to trust his judgement. I've started the Hydroxy again already as had some left over from March and have let the GPs know re prescriptions. And I'm back on Naproxen again so hopefully my hobble will lessen as feet calm down a bit.

And it's great that I seem to have no erosions in hands or feet yet so maybe my RA is just a gentle beast after all? :?

barbara12

Hi Mat
That sounds like a good rheumy appointment..I think.. its good when they listen and so all the xrays and such..I am glad to hear that they dont show up any damage..the pred seems to be doing its job for you..hopefully it will continue then you can stay clear of the stronger meds for now
What a good idea taking pics of your joints....so I suppose you will have to wait till they look at your Xrays...good luck with it all x

Mat48

Thanks Barbara. Yes photos are a good idea - even if the best ones are of facial spots (wasn't sure what rheumy would make of these!) but he asked to hold onto them and said they were useful. I should have been clearer - I'm off Pred agaiin now and my GP doesn't want me to take it again because of the insomnia. I'm just getting a good sleep pattern back with help from Amitriptyline! So it's Naproxen, co-codimol, Hydroxichloraquine, Amitriptyline, Levothyroxine and AdCal D plus the odd Zopiclone for me for now.

I forgot to add that my rheumy agrees with my GP's position on vitamin D and thinks that normal range will vary from place to place and there's too much testing and supplementing going on in general. Interesting hearing his point of view but not sure I agree - not for me anyway.

barbara12

Oh sorry Mat..its my brain I read things then somewhere done the line they change... the Amytriptyline really helps me get a goodish sleep....
Well at least he has held onto the pics..and not just glanced at them
I have just started taking vitD..these GPs have such different views on things..mine told me i should be very careful not to take to much calcium,I never did ask why :? x

Mat48

My rheumy went off on one when I mentioned that I'm on AdCal D having had myself tested privately. He explained that he and his wife had had a family "crisis" the previous night when they had been told their 20 year old niece had been put on vit d supplements by the campus medical centre at her uni because she's studying sport science and her coaches want to optimise her health for short term competitive purposes - not because she needs it. He explained that vitamin d is actually a kind of hormone and you can have too much which is harmful - same for calcium.

I don't think his ideas apply to me though as my Vit D was very low as was my calcium level. But people should check that they have a deficiency before taking supplements - especially if they have a pre existing health condition. Pharmacists could probably advise and its possible to buy home testing kits too. Mat x

barbara12

Thanks for that Mat....think I should get tested...suppose it does make sense..I will ask at the chemist that is always my first port of call.. x

Mat48

Yeah good thinking Barbara. I know its a hassle but unless there's some reason why you can't get out much or need to cover up it should be very possible to get all the vitamin D your body needs by getting outside and exposing yourself to sunshine during the day and eating sardines. I do both but while I was taking methotrexate and had these facial hives I kept myself very well covered because of the increased risks of skin cancer which my mum suffered from. Also I live in the very far north of Scotland. Otherwise I tend to agree with my GP and rheumy that it is about making lifestyle adjustments. X

dibdab

Sounds like a good appointment- I always take a list of symptoms and questions which my rheumy keeps on file- I've got a head like a sieve and end up cussing myself for forgetting stuff if I don't write it down :? .

My GP prescribes Adcal with vit D because she says I'm at higher risk of osteoporosis with all the disease activity, meds etc-but I find them a struggle to swallow-I'm on the 3rd different form of them, but I guess like all the other meds, if they help I'll persevere.

Deb x

Mat48

Yes this is what I thought too re drugs and disease activity and vit D. But aren't your AdCal D3 meant to be chewed Deb? Mine are. I've just had one as I read your response actually having forgotten yesterday!

I think it was quite good appointment really. I'm not quite sure what happens if the numb icy legs and feet continue to bother me and the ESR carries on being high but I guess that's for him to worry about really.

The Naproxen is working wonders because I so rarely use it and it means that I can synchronise the pill taking so Naproxen twice daily alongside Hydroxy with meals. I realise this is nothing compared to lots of people here but it's quite a lot of pills for me - around 10 tablets a day. Mat x

Starburst

Hi Mat,

It sounds like you have a plan, which is always good. I wouldn't worry too much about your ESR, it's a very inaccurate method of measuring recent inflammation. I also have a high ESR but my clinic don't feel it's relevant. Measuring CRP is the best way of assessing RA activity.

All the best,

Sophie

dibdab

Hi Mat,

I started with chewable Adcal-they made me heave :oops: , so then we tried dissolvable ones- but 2 huge glasses of fizzing lemon calcium a day was more than I could cope with, so the lovely lady gp suggested trying the caplets which are swallowed whole! They are enormous-but I manage to get them down- I really want to avoid osteoporosis if I can- got enough trouble with RA and associated lung disease without anything else!!!!!!!

Deb x

Mat48

Firstly Sophie - lovely to get your comment thanks.

I know you are right about ESR but my surgery refuse to take CRP because they don't see that it is relevant to RA - although the truth is more likely to be that its more expensive! I suppose, as I've said here before, my ESR is the only thing that seems to consistently represent me in terms of something I can actually see in print. I'm very mistrustful of my own responses to pain and often feel I haven't got much wrong with me even when my medical team say that I have. Its crazy I know but I think its something to do with having been made to feel a bit freaky as a kid when I was covered in all too visible (and painful) eczema and my hair all fell out periodically. Not a cool look when you're a school kid 8)

So this childhood stuff has given me the idea that invisible conditions can be believed in with others but I never really believe my own aches and pains much and get little visible swelling. So being sero negative my raised ESR is all I can rely on to let me know something is going on. I start CBT/ counseling in a few weeks time and hoping this sorts my head out a bit re RA and drugs etc.

I can relate to not being able to swallow tablets Deb. I got almost to that stage when I was taking 8 methotrexate tablets and would feel almost instantly sick as soon as they were down the hatch. I have a small mouth and find swallowing pills hard but I like things I can chew or suck better. I agree who wants osteoporosis on top of other stuff! X

Starburst

Mat48 wrote:

Firstly Sophie - lovely to get your comment thanks.

I know you are right about ESR but my surgery refuse to take CRP because they don't see that it is relevant to RA - although the truth is more likely to be that its more expensive! I suppose, as I've said here before, my ESR is the only thing that seems to consistently represent me in terms of something I can actually see in print. I'm very mistrustful of my own responses to pain and often feel I haven't got much wrong with me even when my medical team say that I have. Its crazy I know but I think its something to do with having been made to feel a bit freaky as a kid when I was covered in all too visible (and painful) eczema and my hair all fell out periodically. Not a cool look when you're a school kid 8)

I do totally understand how you feel and what you mean. Interestingly enough, my ESR also roughly reflects my disease activity. They test it every 6 months or so (because I insist on it) and when I've been bad for a long period, it's high and when I've been 'good' (haha!) for a long period, it's lower but still not normal. My previous rheum said persistently high ESR with normal CRP is a very strong indicator for systemic lupus, my current glossed over it and said it's seroneg RA.

All that said, given I have been told it's RA, I often have visible inflammation and normal CRP which baffles the medics. I think inflammatory makers are a load of tripe!

Mat48

Oh that's interesting Sophie because my CRP was about 30 when I was first diagnosed and has been taken 3 times since - last taken during an overnight hospital stay a few months ago when it was only 10.7 whereas my ESR taken a few days earlier was 44 and I definitely felt the ESR was more representative. So I now discount the CRP as representing me in any way.

Re swelling - both my sons broke wrists in their primary school playground. The first went without x ray on the grounds of no swelling for 48 hours - the youngest was never x-rayed despite repeat visits to a very patronising locum GP and a hospital doc - finally he gave a scream four weeks later when his brother pulled his arm and went white so our GP sent him for an x ray and lo and behold he had sustained a full fracture the previous month which, thankfully, had healed naturally. Some very embarassed doctors had much apologising to do though! So I always wonder if they would only use ultrasound on me here (they don't even use this method in the big hospital let alone here) what they might find!

My rheumy didn't say that his diagnosis had changed - he just said that he wasn't sure if the extra symptoms were because of extra autoimmunities. I think they are though because I'm hypothyroid too and I got my antibodies checked privately at same time as Vit d and got a clear positive so I think it all crosses over as mixed connective tissue stuff somehow.

Hope you are feeling less fraught now following your own rheumy consultation? X

Boomer13

Hi Mat;

I'm glad to hear you had a good appointment, and have follow-up in January.

Hoping the naproxen works on your feet and other trouble spots.

Take care of yourself,
xxAnna

Mat48

Hi Anna, thanks. Naproxen works well for me always but my GP says I should only use it as and when I have something I need to be reasonably well for or if flaring. I love it but after a few days I bloat up on it so when the concert I'm singing in is over tomorrow night, that's it for a while. He says the reason it works so well for me is because I only take it occasionally. And also I think anti-inflams make my hives worse too as my face has gone itchy. Ah well life is full of double edged swords! X

Mat48

Ps in fact its more than a double edged sword - my chronic hives are multiplying all over my face now so I looked this up on NHS uticaria and the first thing it says that may make them worse or trigger them is Ibuprofen and Naproxen!

Boomer13

Oh dear! Sometimes we just can't win with these autoimmune problems. Best wishes for tomorrow night.

xxAnna

stickywicket

Good luck for tonight, Mat

Mat48

Thanks Anna and SW. Unfortunately youngest son plus friends needed collecting from a country party in the early hours which has meant that I didn't get as much sleep as I need currently! So I'm a spotty itchy mess today but hopefully the adrenalin rush will kick in for tonight. I'll take you with me in my pocket if that's okay?! Should sound nice in there and you can shout at me to pull myself together if I start keeling over!

Mat xx

stickywicket

Of course it's OK, Mat, but bring a gag to silence me if I decide to join in. My enthusiasm exceeds my musicality

Mat48

Actually so does mine sometimes SW! But luckily I'm surrounded by pro musicians and just have to focus on blending nicely where possible. And my horror would be if my fellow first alto had phoned or emailed to say she has one of her episodes of laryngitis because I'm covering for her big solo. And so I'm feeling confident that she's on fine form and that's a huge relief - especially if you're in my pocket as the terrified quaking might have thrown you right out of my pocket in front of the audience!
Mat x