Back to the Rhuemy on Monday: I'm back to the rheumy on... - NRAS

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Back to the Rhuemy on Monday

6 Replies

I'm back to the rheumy on Monday after not seeing him for several weeks.

I'm now 7 weeks post knee arthroscopy & it is still painful.

My whole body aches & I feel unwell most of the time & am really fed up with it!

I think I need to go up to the next level of drugs, at present I'm on Sulfa & hydrochl & am hoping that the Dr will put me on MTX.

I'm still struggling with altered taste & smell & fed up with not being able to enjoy food & drink. I'm now waiting to be referred to the only Taste & Smell clinic in the country but there seems to be about a 6 months waiting list!

I'm hoping my appt on Monday (which I've got to pay for as I've run out of insurance!) will start to resolve some of my pain.

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6 Replies

Hi Pauline. Sorry things have been bad following your arthroscopy. I am interested in what you say about altered taste and smell because I've had that every since my RA started. It affects us horribly not being able to smell or taste food properly and I also find I have a really foul taste in my mouth a lot of the time too. I have assumed until recently that with me it goes with the drugs but lately I've become more aware of it because when I started on MTX by injection instead of pills it went away. This week it came back with a vengeance but I was too dispirited to say anything about it to my GP this time. Looking back i had strange things happening with my taste buds about 2 years ago and it was horrible when I took Sulphasalazine briefly.

People don't realise how horrid this problem actually is unless it happens to them - it affects my moods and my outlook a great deal. I hope you get that referral and please come on and tell us about it when you do.

I also hope things go well on Monday and your consultant puts you on MTX - it has completely sorted out my joint problems and I'm indebted to it. I don't get why you aren't getting your rhumatology on the NHS though - can't you ask to be transfered?

Hi thanks for your reply.

The reason I see him privately is that he he only sees complex cases on the NHS & I don;t fit into that category! He is a prof of rheumatology & works at 2 different hospitals as well as lecturing & doing research.

I trust him because he's been spot on so far. I did go & see another consultant who was useless & even though I had all the letters of proof from Prof this dr didn't accept that I had arthritis in any form! He said I needed

xrays done & he would see me again in about 10 months time!! I wrote & complained about him & went back to the Prof.

Once I'm stabilised I shall try & see another rheummy on the NHS.

Regarding the taste - I came off Sulfa for 6 months & nothing changed so went back on it.

I do find that it alters, at the moment things taste & smell like bad fish. It's better if I eat more savoury things & cut out carbs but even then I can't eat a lot of veg & hardly any fruit :(

I hate it!

in reply to

Yes mine is fishy too - like fishy garbage - so yiuk you have my complete sympathy from one sewer mouth to another. Could it be hormonal changes perhaps? I am post menopausal (I had an early menopause) now but I recall getting similar stuff going on with my taste buds each time I was pregnant. Good luck with your rheumy tomorrow - he certainly sounds the business and could perhaps recommend an NHS one to you at some stage?

Maybe he would also know more about the weird fishy taste? - do let me know if so.

shirlthegirl profile image
shirlthegirl

Good luck with your appointment tomorrow, Hope you feel a lot better soon Xx

cris1728 profile image
cris1728

Good luck with your appt tomorrow and hope you get some positive answers

cris xx

Well I had my rheumy appt today.

He acknowledged that several of the joints are inflamed especially the knee.

He wants to do xrays on my hands & feet to see what changes have taken place since the last xrays were taken 3 yrs a go.

He also wants to do more bloods.

As I've run out of insurance he will need to ask my GP to do them - that's gong to take some time to arrange I guess.

In the meantime he wants me to up the Sulfa and says that there are other meds to go onto once he's got the results.

Tilda - he made no comments about the taste/smell as he'd already ruled out drugs - but I think he hasn't got a clue really!

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