Update

Mat48

Hi - I haven't been around the site at all lately due to new work which is meaning I've had to travel a great deal for training. Sorry if lots of things have been happening to everyone and I've missed being here to give support and hugs etc.

I had a rather unsatisfactory rheumy appointment three weeks ago. I dragged my husband along for the ride and told my consultant for the third consecutive time over 9 months that I am still suffering from nerve pain in my legs and feet which had escalated so I wasn't sleeping well and was getting very down about it. After examining me and finding out that I had stopped taking Hydroxy due to face and lips swelling horribly after four months of 400mg per day - he just shrugged and said he didn't think the burning nerve pain was an RA thing or even related to rheumatology. I was rather dismayed as it is the only type of pain that I have that I just don't seem to be able to shift.

My husband mentioned that my peripheries are often discoloured and very cold these days and that I am constantly fatigued. Again he shrugged and said this is just part and parcel of having RA and also he felt I should have tried halving the dose of Hydroxy first before stopping it completely. I tried to explain that it wasn't a planned exit - I just stopped taking it one night in desperation to find my my face un-swollen again the next morning.

He asked me what I wanted to do next and as I had a severe reaction to Sulfa and came off MTX injections after 18 months because of this neuropathy we seem to have reached an impasse as I don't meet the criteria for anti-tnfs yet apparently. I explained that my toenails and finger nails are all changing but he wasn't interested, I told him about the itchy spots/ hives on my face neck and chest and the nose sores and bleeds but he still wasn't interested. It was all a question of blood tests (equivocal autoantibodies). He did want me back on a DMARD however because of the leap from 17 back up to 36 in my ESR and the fact that I still have some tenderness and a swollen knuckle (at least I assume this as he didn't mention why he thinks my RA is still active).

So I left with a plan to return to MTX as "better the devil we know" for me and my allergies. I took this to my GP the next day and we discussed it. He decided to put me on a drug for Raynaud's as he felt sure the burning nerve pain was because of this. He felt we should postpone the MTX until it's clear that I need it - checking my ESR and keeping an eye on joint pain.

So after 9 months of horrible sensory discomfort and pain I have found that taking vasodilating drug called Nifedipine is working pretty well - after a few teething difficulties and adjustments in dosage. The pain and hot/ cold sensations haven't completely gone away but they are very much less of a problem although my BP is pretty low so I have to be careful that I don't keel over after activity!

I am delighted about this of course but also really mad with my rheumy because Raynaud's comes under the heading of rheumatology and I have shown him photos of white toes and purple feet etc. So we decided I should seek a second opinion from someone more interested in connective tissues diseases and vasculitis. So I wrote to my rheumy and he has recommended I see someone exactly as I suggested so my GP has referred me to this other chap I'm now waiting to hear news. I don't mind going back on a low dose of Methotrexate but I would really like to know what disease process it is meant to be addressing and not forever be assumed to be an RA patient with all the other symptoms shrugged off as irrelevant.

Meanwhile my eyes continue to need drops all the time and my skin is still suffering flares of hives or rosacea or whatever it is - and the itching and stinging around my ears, neck and chest is driving me mad. The antihistamines make me feel really strange now - having had them all my life with no problem previously. But if I stop taking them my skin gets even worse. My scalp is also terribly itchy and I have a really painful shoulder and my ankles ache. This could all be down to exhaustion from to-ing and fro-ing for training which involves flights and hotel stays each time. Hopefully all done and dusted for a bit so back to a world of finishing art commissions now.

I still just don't know whether to go back on MTX now or wait for the second opinion - which might be months away? I have arranged to get my ESR checked tomorrow - keep hoping things will become clearer and I will know what to do. My GP is fab but he is very over stretched and I don't want to become more of a doctor botherer if I can help it! Mat x

Ho hum - well that's my very longwinded news anyhow!

barbara12

Hello Mat
That is one of those appointments we all dread, I am disgusted that he just shunned off what you were saying, and your husband come to that.
I would ask to see another Rheumy...a second opinion is your right..
Sorry I cant advice on the meds ..but I do wish you well with whatever you decide..x

Mat48

Barbara many thanks for your response. It was so depressing. My husband was livid on my behalf. But I wrote a fairly forthright but non-confrontational letter to him (sorry if I'm contradicting myself here!) which my GP read first and so we heard pretty quickly that he's happy for me to get a second opinion and even recommended someone who sounds very promising. I just don't know why he didn't suggest Raynaud's himself though?

He said the dry eyes were just rheumatoid with no suggestions about types of eye drops or questions about whether this was affecting my vision etc. I thought Sjogrens and all these connective tissue things were stuff that rheumies deal with all the time? Instead I just came away feeling fobbed off under the impression he couldn't give a fig about me being in constant pain. But I will only see this other chap as a one off and then have to get back to the present guy so can't afford to fall out with him. Mat x

barbara12

Mat I have had appointments like this so really do feel for you,I have also had a second opinion, and it was scary but it turned out to be such a good appointment and can I tell you I had to see the same consultant again..the one I didn't like and he was a different man and couldn't do enough..you make sure you take a list of anything you can think of and don't come out till they have listened..it does take practice I'm afraid..but you can do it..its only being on this forum for 4 years that gave me the confidence to do this..good luck..x

Mat48

That is so reassuring and kind of you Barbara - I do hope the same thing happens to me. I've waited for months to see a dermatologist and still no appointment so I think I might be in for a long wait to see this specialist for a second opinion. I'm lucky that my GP is being extremely supportive. Matx

dreamdaisy

In my seventeen years of LWA (twelve of those under the care of rheumatology) I have discovered that rheumatologists do nothing to help with the pain because there is nothing they can do apart from prescribe dullers. If the patient doesn't react to the big-gun meds as wished (and I have no idea how many do because why would they need a forum?) then there's not much else to be done. It's always a trade-off between whether what helps the arthritis is worth it compared to living with any side-effects. I am lucky in that I have very little trouble with side-effects but there again the meds don't do much.

In the early days it is very much a case of trial and error ergo many errors and much in the way of trials. If you are not bad enough as yet for the biologics then thank your lucky stars - they are not pleasant drugs. Cutting back on your workload may also help your body find some recovery and recuperation time: arthritis hits all aspects of our lives, I became sick and tired of battling to do less and less so stopped - it's helped matters. DD

Mat48

Thanks DD. Unfortunately I'm not in a position that I can afford not to work just now. My husband is struggling with his job and I need to pull my weight as he is getting unwell now too. So I am training in a new area in the hope that I become more employable. It is actually very interesting work but the travel is very tiring so I end up suffering rather after each stint of time away from home.

I don't expect my rheumy to find a cure or even take the pain away but it would be good if he opened his mind to other possibilities as RA is only one kind of inflammatory arthritis of many and autoimmunity can take many forms.

If he hadn't been so fixed on his original diagnosis and preoccupied with blood markers for ANA - if he had actually listened and considered what I was telling him about my symptoms 9 months ago then I might never have felt the need to come off MTX. If he had just acknowledged Raynauds as a possibility and tried me on this drug then I might not have had such a hellish time wondering if this nerve pain was all in my head. Also the way that RA is assessed for active disease is somewhat different to the way PsA or other connective tissue diseases are assessed and treated. So if I were to be rediagnosed with Sjogrens or Lupus or PsA or some type of Vasculitis or a mix of all of these perhaps, then the drugs are pretty similar but the method of assessing active disease is different and nose sores and peripheral neuropathy etc are all more relevant to the way the disease process is measured. It is a basic human need to feel believed.

I don't claim to be particularly unlucky. Everything is relative and I'm usually the first to acknowledge that others have things far worse than I do. But I don't think putting up with 9 months of excruciating nerve pain 24/7 is exactly lucky and nor do I think that having a rheumy who only acknowledges RA problems is that lucky either. So you can thank your lucky stars for being able to tolerate drugs well and I can thank my lucky stars for not having an aggressive enough arthritis to warrant biologic drugs but I'm not sure either of us are really that lucky overall. Mat

dreamdaisy

Of course we're not lucky - far from it but with my twisted view on life I regard myself as being fortunate in that I can tolerate the drugs (although I am the first to admit that I feel much better in myself when I have to stop the junk when I get properly ill so much so that sometimes it's hard to resume it).

I wonder if your rheumatologist sees you as a 'threat' to his expertise - you have read widely, researched much and seem to always be suggesting new reasons for what is happening to you - he's male, yes? In my experience of male rheumatologists (three to date) they don't like having their knowledge questioned or rejected. My female rheumatologist is far more amenable to my comments, questions and thoughts.

Work-wise I reached the point when I couldn't cope with working at home - the commute from the sitting room to the 'office' was just too much. Arthritis demands much and gives little. DD

Mat48

Yes I think the male part is relevant in this instance although I have friends with women consultants who are brisk and resentful and the next person I see for a second opinion is also a man - but someone I know with Lupus says that he's almost "touchy feely" and open to discussion and new ideas because he's at the research end of things. So largely I think it's about personality types.

I actually get on fine with my rheumy and respect his experience but I feel that he's stopped trying to look for new possibilities and become rather too into fine dining and being lauded. Probably a risk any consultant in any field or of either gender can fall into.

At one of my training sessions there was an anon quote on one of the presentations which went something along the lines of "you won't be remembered for what you say or do - but it is how you make others feel that lives on". Not that people necessarily want to live on in the minds of others but I think the same goes for the present tense. If a patient walks out of the consulting room feeling dismissed and miserable then it is a job badly done. It should be possible to make everyone feel that their symptoms and pain are being taken seriously - even if privately the clinician has some doubts. He obviously thinks I have something inflammatory going on or he wouldn't want me back on MTX - and I trust his judgement. But if a patient is naturally enquiring and has learned a lot about their condition then that should not pose a threat - but should be a bonus surely. Mat

dreamdaisy

Usually I would agree but I think it's a different ball game with the medical profession, especially in the days of Wikipedia and the web. Far too many patients walk in and tell the doctor / consultant what's wrong with them and what needs to be done (I was a teacher so I continually received 'helpful' advice from non-teachers). I tend to do it the other way round, listen to the doc then go home and find out a little more (but only a little because I don't want to become obsessed by something I cannot change). As far as I am concerned I have two forms of arthritis and they will do what they will do despite the best efforts of my docs and me; a danger comes in relating everything else that happens to the arthritis or the meds, sometimes other rubbish rocks up just because it can. DD

Mat48

DD I don't ever go in and tell my doctors what is wrong with me. I do research because, unlike you, I have symptoms that don't fall easily into the two types or arthritis - or even one type. I have symptoms which I have learned could more easily be linked with Sjogrens or Lupus than with RA, which I am diagnosed with.

If you are lucky enough (and I use the word "lucky" in the relative context we have already discussed) to have symptoms which have led to a diagnosis you agree with then that is fine. Many don't and doctors aren't Gods, tempting as they sometimes seem to feel it is to present themselves as these. The patient knows their own body and lives with symptoms so they should always be listened to. I just try to provide mine with the clues and see them as the very well trained and handsomely paid detectives who should be piecing together these clues I'm providing in order to justify their long training and handsome salaries.

Teachers..well I've come across some inspiring and dedicated ones but also some appalling ones. If they can teach then great but if they can't then they shouldn't. Being trained, qualified and experienced is no guarantee a person can do their job in any profession I have found. I'm an artist by training but if someone dislikes or doesn't understand what I produce then I take that on board - especially if I'm being paid to produce art for the public sphere or am commissioned. Otherwise if it's art I'm making to express the way I perceive the world simply for my own pleasure and to stay vaguely sane then it's up to me to decide what works or what does not.

dreamdaisy

I didn't say that you were one of those who tell their docs what's what and many of us have symptoms that don't 'fit' with the standard view of how conditions present themselves. My 'accurate' diagnosis took nine years and I didn't start any meds until I was five years in (and even then the docs were reluctant because they felt I didn't have any form of inflammatory arthritis, they changed their minds however when my right knee joined the party in 2003). Thanks to that delay I'm wrecked but at least I know why - that kinda helps.

I'm struggling at the moment because my stupid body has actually gone and done something right and done it very well. Talk about a kick in the teeth.

Mat48

Poor you DD. Nine years is a long time to wait for a diagnosis and I know you feel "wrecked" in lots of ways. Is the bit your body has done right and well a reference to your broken arm perhaps? - sorry for my ignorance but I've been away a while so please bear with me if I have catching up to do.

I'm starting to accept that a diagnosis that feels right to me may never come as rheumatology is so complex. I only want my consultant to follow the advice he gave me when he diagnosed me with sero-negative RA "keep an open mind - things can change and it's important to report all new symptoms". I guess I've taken this very literally but things have changed so much - some things for the better (joint pain) but other things for the worse (nose bleeds, neuropathy, dry eyes, fatigue and hives).

However I'm sorry if I get so defensive about my strange symptoms and am a little paranoid that people will just think I'm making a fuss about nothing. Most of the time I think I'm imagining things so it's very easy for doctors to dismiss my symptoms or make me feel a hypo and I'll just sit there and take it. It's only afterwards I realise that this has actually happened - especially with a rather outraged husband in attendance this time

However I have no regrets about doing all the research rather obsessively because it has made me more aware of the many awful things people have to put up with from autoimmunity in general and simultaneously makes me realise how lucky I am in many ways. But even hives (especially on the face and neck so very visible :roll: ) and fatigue can make me quite grumpy and occasionally I just want to vent to people who I feel will understand. Mat x

dreamdaisy

Yes, it's the arm. Doing what I was told to do rewarded me the best possible outcome. DD

Starburst

Mat, I have been/am in a similar position. I have sero-negative rheumatoid arthritis. I have 2 close family members with inflammatory bowel disease. Apparently it is common for patients with sero-negative RA to have a close relative with IBD (or similar) or have it themselves. So, in a long roundabout way, I am saying that RA (particularly seroneg) often presents alongside other autoimmune problems.

It has been suggested I have either PsA, seronegative SLE or Sjogren's Syndrome and/or RA over the years. I panicked when my rheum suggested anti TNFs but the nice people on the helpline told me that no matter my dx, if my autoimmune disease is due to TNF activity, then the anti TNFs may work. I can link to something scientific if that helps?

I do think there is a fine line between being an informed, active expert patient and perpetuating the worry of the unknown. I totally understand why but sometimes it's easier to let the doctor put the puzzle pieces together. Our role as patients is being able to give them all the puzzle pieces as we are the experts of our symptoms and experiences. My experience in questioning rheumatologists (seen 4) is that very few people have a clear cut dx due to symptoms waxing and waning and the common overlap in diseases. There are more people in the grey area than you think and often they put someone in a diagnosis box because their symptoms are most like X, Y or Z rather than they 100% have the condition. Doctors are flawed humans, like us all.

Best of luck with everything. x

Mat48

Hi Sophie. I think I must be giving the impression that I'm in denial or somehow rebelling against my original diagnosis of RA? But I'm not I promise - I'm just wanting the new symptoms acknowledged as relating to my presentation of RA or whatever it is I have. I'm actually beyond even needing a name for it and if my rheumy had said "this neuropathy is caused by your RA - take this treatment and it should improve" then I definitely would have done so with eagerness!

But the nerve pain/neuropathy has been so intense over the past months compared to my joint pain, that to have it dismissed as nothing to do with RA or rheumatology has been a really difficult thing for me to take on board. I have frequently woken with severe nerve pain in my feet and legs over the past months and not been able to stop myself from crying out or get back to sleep. The icy, wet sensation in my legs with burning nerve pain has caused me to be quite low. And my GP was sure this pain was caused by Raynauds and this has been confirmed by the success of a drug that opens up the blood vessels.

Which is why I'm seeking a second opinion - because the experience of the past 9 months has made it harder for me to trust a consultant who dismissed the pain I was in as not within his remit. I know it probably is secondary to the RA I have been diagnosed with - but he should have made the effort to work this out because I gave him all the clues over three consultations in the form of photos of white toes and discoloured feet and deep horizontal ridges on my toenails and descriptions of white fingers.

And yet in each of his letters he states that he doesn't feel the sensory issues I'm describing are his concern. And I don't think I ever even suggested to him that this could be Raynauds or Sjogrens - I thought it was his job to work it out and treat accordingly so I avoided appearing the "expert patient" because I knew he wouldn't like this. Instead I got described as "anxious" (neurotic!). But having pain dismissed in this way is enough to make anyone anxious I think! Mat x

Mat48

Ps I agree about anti tnfs - was not suggesting they don't work for many who take them. I have even been told that Rituximab is being used for people with Sjogrens with success. But my rheumy said I don't have enough joint swelling to qualify for them yet. So the only options open to me were either to return to MTX or try Leflunomide and he felt (and I agreed) that the MTX was less likely to cause me side effects because the dosage is much more flexible. I don't take issue with any of this at all.

stickywicket

Starburst wrote:

I do think there is a fine line between being an informed, active expert patient and perpetuating the worry of the unknown. I totally understand why but sometimes it's easier to let the doctor put the puzzle pieces together. Our role as patients is being able to give them all the puzzle pieces as we are the experts of our symptoms and experiences..x

:P 8 Sophie you are wise way beyond your years. Those lines should be written at the top of this forum. Well said!

Mat, I read your thread but just don't feel I have anything helpful to contribute other than sympathy and maybe just a reminder that we all get stuff entirely unrelated to arthritis or meds. I hope things go a little more smoothly soon.

Mat48

Yes it agree Sophie does have a way with words.

Thanks SW. I'm biting the bullet and going back onto injectable methotrexate as my rheumy advised. My ESR has drifted back up to 48 and this is reflected by an increase in pain and stiffness. Hoping that my GP may be right too that the hives are an autoimmune thing and will be modified by this drug as well. They have been around for two years but have multiplied since I stopped the MTX 8 months ago. Unfortunately Tuesdays are the nights that work best for me to take it and this Tuesday happens to be our 25th Wedding anniversary. Champagne followed by a lovely romantic injection or postpone by another week? Decisions decisions. Mat x

barbara12

Mat that is the good thing about this forum you can talk things over and you are not on your own with it...good luck with whatever you decide...x

Mat48

Thanks for being so kind Barbara. I've talked it through with my husband and have decided to do something lovely in the day time and then have a bottle of bubbly between us and youngest son in the evening and inject last thing before collapsing into bed at night. An interesting new romantic take on wedding anniversaries :roll: Mat x

barbara12

Mat sorry I missed that bit so read back..Happy Silver wedding Anniversary..yes a twist on a romantic evening but you enjoy the bubbly... xx for Tuesday that is... :? sorry blame the meds...

Mat48

Well if in doubt I do blame the meds for most things Barbara Mat x

dreamdaisy

Happy Anniversary for next Tuesday, I hope you all have a pleasant time and enjoy it! My psoriasis is well-controlled by the meth/humira/sulph triple therapy (as they are all immune-suppressants I guess that's no great surprise) so I hope the meth helps the hives etc. I remember that my markers plunged after my second humira injection, they fell from triple to double to single figures in a fortnight. Apparently they are still in single figures but the OA pain eradicates any physical benefit. Hey-ho, same-old-same-old, Daisy misses yet another boat.

Mat48

It sucks doesn't it I'm bed bound today - ankles are kicking off big time and the rest of me isn't very happy either. Thankfully OH on hand to walk the dogs while I get laptop work done and feel sorry for myself. My GP thinks I'm being "very sensible" biting the bullet before things really take hold. I know it shouldn't but somehow the thought of going back on a drug that played fools with my liver frequently and made me feel so sick is glooming me rather. Stupidly I scratched a couple of the itchier hives in my sleep and now have great red scabs by my mouth and chin and am a sight for sore eyes. Maybe I should paint them silver next week

Oh well on the plus side I've lost weight somehow despite being sedentary and not trying and that is a good thing as my Wii still tells me my BMI is way too high. At least when I'm over the flare I can go and show this machine a thing or two! Mat x

stickywicket

A quick word of warning, Mat. Have you never been told about the dangers of mixing alcohol and meth? I'm a regular offender :oops: but I have never had the least problem with my liver tests.

If you're going back on meth after a break and especially if you've had liver problems with it previously, I think combining your first dose with champagme would be asking for trouble. We usually advise new meth users to stay well clear of alcohol until several blood tests have shown no problem.

I really hate to be a party pooper, especially right now as I'm being a little less than sensible while staying with my son :oops: but I do know my regular bloods are good.. In your situation, with all your previous med problems, I'd find another way to celebrate and put the alxohol on hold. Sorry.