RHEUMY NURSE OR HELPLINE INFO: Hi Everyone I see a lot... - NRAS

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RHEUMY NURSE OR HELPLINE INFO

Garnacha
Garnacha

Hi Everyone

I see a lot of posts suggesting people get in touch with their rheumy team or phone the helpline, I spent about a year going back and for to the GP and seeing physio's etc and then asked to go private before getting diagnosed, it took from January last year till November for the consultant to diagnose PsA, I started on etoricoxib in February, then hydroxychloroquine was added in March and methotrexate in November I've also been prescribed gabapentin for the nerve pain that suddenly started in December, I also have amitryptaline and stronger co-codamol to take when needed. The consultant in January this year said for me to give the MTX another 4 weeks, he asked if I was on the NHS list which I said I doubt it so he's added me to it & said that currenlty the list is taking a year or more adding that I may need further treatment which could cost thousands, he didn't say what treatment and stupidly I didn't ask, he didn't say to make another follow up appointment after the 4 weeks so I've been hoping to see some improvement in the pain, it's now 5 weeks and still no difference (apart from one saturday when I woke up and felt pain free in my elbow for around half an hour) I'm thinking of contacting his secretary to ask what should I do next week, but, seeing posts about recommending people contact their helpline or rheumy team I was wondering if I could be missing out on this resource? I live in Wales so not sure if it's just available in England. Thanks for any advice x

15 Replies

Are you saying your on the waiting list to see an nhs rheumy? If so the rheumy helpline wond have any information on you until you have been seen initially, so they wouldnt advise you until after that I think x

Garnacha
Garnacha in reply to allanah

Hi Allanah, thanks for replying, to be honest I've no idea, I'm assuming that's what he meant but as I've been seeing him private for a year thought perhaps my details would be on the system somewhere as he writes to my GP each time I've seen him with whatever the latest is, oh well guessing I'm either going to have to wait or e-mail the rheumy's secretary to ask what I can do next x

allanah
allanah in reply to Garnacha

If its private then you can contact him directly or his secretary x

I agree with Allanah - you won’t be one of “their” patients yet. But do check up with GP that you have been referred to the NHS. Such a shame the GP didn’t do this a year ago! And you can ask your GP for copies of the letters so you know what is going on.

The consultant was probably talking about biologic drugs, which can only be prescribed via the NHS hospital teams and cost around £1000 a month.

What dose of MTX are you on? Is there room to increase this, or add in the third leg of triple therapy sulphasalazine? Could be worth asking?

Or perhaps ask re a steroid jab. Docs are v reluctant as does increase risks with Covid, but if you are desperate then push for it perhaps?

Or perhaps a change of anti-inflammatory as some people respond better to one than another...

Garnacha
Garnacha in reply to helixhelix

Thanks helixhelix, I'm currently on 20mg tablet form, it was increased from 15mg after 8 weeks to 20mg so been on it now in total for 4 months, I had 2 steroid injections in my elbow last February which helped and a steroid in my hamstring & shoulder in March, I then had another steroid injection in my inner elbow & shoulder in November and a steroid in my outer elbow in January this year, apart from my hamstring which the steroid didn't touch it seems as if it's only the steroids in my elbow / shoulder that do anything, I'm finding that the pain in my shoulder is coming back again so think for me they must only work for 3 months or so, I've had strange skin markings for a number of years and just thought it was dry skin, when the consultant saw these and my scalp he said that it was 100% psoriatic arthritis, if it wasn't for these skin conditions I'd be thinking they've got the diagnosis wrong, I've put the original photo of one of the conditions on my leg below which was healing up with solaraze that the gp gave me before my diagnosis, however, since starting MTX it got so bad it was like a big open ulcer so now have strong steroid cream to put on it, I didn't put 2 & 2 together that the skin problem was psoriasis till after diagnosis x

hi G - 5 weeks is really not long enough to see any benefits from MTX, or any of the meds. I have been told 3-6 months. the reason I have stopped is that not only has it not done anything, but pain in various joints is getting worse. I also have the elbow thing and the burning. My rheumy nurse told me that everything I described was 'mechanical' and that's why it wasn't working. She also told me that I was right not to take the steroids tablets I had been prescribed by rheumatology a couple of months ago for the pain and the burning! 🤔. I had told her I was too scared to take them and felt that because the pain was moving from one area to another month by month there would be little point: I wouldn't be able to easily tell if it was working or not.

I've been on hydroxy since March last year and MTX 1st October and in that time the pain in my neck and upper back have been excruciating for a few weeks and now much better, now it's the elbows with the right one being off the scale sometimes. I had something very similar in my right leg a few months ago.

Anyway, I left a message with the rheum nurse and told her that I wouldn't be taking any medication any more after her advice. I can already feel my black mood lifting; not constantly having to remember tablets, when to take them, booking blood tests, unnecessarily complicated repeat prescription process.

I've been in pain for so long that it won't make any difference being off the meds so there won't be any change there.

Really. my every day revolved around medication and supplements and exercise to keep myself from having heart failure or a stroke.

AM - before even getting out of bed: Lansoperazole to counter the effects of

Naproxen half an hour later, followed by

Riboflavin for migraines

Hyaluronic Acid for dry eye

biotin for hair

Vitamin D3 for everything

Hydroxychloroquine - with food, remember to eat

Painkillers for inevitable brewing headache

More Riboflavin

MTX once a week

folica Acid once a week but not on the same day as the above

2 or 3 times a month Sumatriptan injections sometimes more and within a forbidden time frame, massive heart attack risk

I had hoped that MTX and hydroxy might have helped with migraines had the underlying cause been inflammatory but nothing has changed with that.

Sorry - went on a bit didn't I?!

If you have been going privately to see a rheumatologist who does your fortnightly blood tests for the MTX ?

sorry again - I meant to say I am in Hywel Dda health board area. I have good access but it's been a bit clunky lately and have had to go through the booking line to get an appointment with the consultant who I haven't seen for nearly a year since diagnosis.

Garnacha
Garnacha in reply to Brychni

Hahahaha, I'm the same 😂.

I've been on etoricoxib & hydroxy since February / March last year & MTX since 13/11/20 so just over 4 months, the consultant did say it can take up to 12 weeks to see any improvement & at 10 weeks said to give it another 4 weeks, it's now 5 weeks and no improvement. I'm pretty similar to you with meds, AM 2 x gabapentin, 1 x B12, 1 x VD, afternoon 1 x gabapentin, PM 1 x hydroxy, 1 x etorcoxib, 1 x B12, 2 x gabapentin & once a week MTX & folic (not on the same day), I also have to use hylauronic eye drops morning & night and have sumatriptan as I developed severe migraines 2 years ago, I had over 50 migraines in 10 months and then they just stopped, I've had 3 this year but touch wood.

Apparently with PsA inflammation can occur anywhere in the body and doesn't have to stay in one area, with myself I believe it's enthesis / tendons that are affected, but also having a burning sensation in my left forearm hence the gabapentin, the consutant said it's probably caused by inflammation pressing on a nerve, my wrists & knuckles are also painful on occasion aswell as my right forearm (with burning) and my right wrist & thumb knuckle but in the main it's my left elbow, left hamstring (& now my left hip down to my knee) & right shoulder.

I've just spoken to the dr's receptionist to find out my folic blood test results and she said they were normal, I was hoping they weren't and that they'd increase this to counteract the sickness & tiredness from the MTX but, I suppose this could also be due to active disease as the last 2 weeks the pains been getting worse.

I've asked for a copy of my latest blood test results which they'll post out to me but were satisfactory, from what I can make out on the phone the receptionist said they only checked my blood count, I asked about my CRP level and this wasn't tested.

They've arranged for a telephone meds review regarding folic acid but the earliest this will be is a week Thursday, she said I could also ask then if I've been referred to the NHS as she has no idea & check if CRP can be checked at my next blood test.

Regarding my blood tests, when I was first prescribed MTX I had to pay for these myself (& the MTX), it was 3 lots @ £191 per test, I've now been put on shared care so won't have to pay for these anymore.😀 X

Hi, I really can't help you, Cocodamol helped to give me some pain relief until my Rheumy stopped the medication as it effected my liver and I was told not to take it again. That was many years ago.

Thank you for trying, I've got co-codamol and amitryptaline to take as and when, the pain seems to get pretty bad around 8 - 9pm (guessing it's from working from home sat at a computer all day using the keyboard) so I'm reluctant to take the amitryptaline as I know it knocks me out and takes around 12 - 14 hours to get out of my system which is a problem when I'm supposed to be working from home, but, I may just have to alter my work start time to fit it in if needed.x

Hi, I am retired thankfully as I am not on biological meds due to having psoriasis. I am being treated for psoriasis and have to wait until it is completely cleared per the Dermatologist specialist. I am unable to give you any information regarding amytriptaline as I have not been on that medication. Good luck with everything I hope you can get meds that give you the best pain relief and doesn't effect you working from home.

Take care and stay safe xx

Thank you, I’ve been diagnosed with psoriatic arthritis, if you have psoriasis, does it mean you can’t go onto biological meds? X

I have been on biological meds for many years, then I had 2 Kevzara injections 2 weeks apart plus bone medication in tab form, previously I had Prolia injections over 18months ago. I Stopped as the Prolia Injections can cause joint pain and I was on Rituxan infusions which I didn't know if they were working. Also if you need dental work, extraction it is difficult to get a dentist to remove the tooth. It was after the second injection that I had psoriasis. The Specialist Dermatologist does a great deal of research into which is the best biological medicine for me, he is discussing this with my Rheumy. I still have the psoriasis and I have been advised that I will be unable to start on a new RA med until it had cleared completely.Hope this info helps.

Wow you’ve really been through it, I’m so sorry. Thank you for the information & take care xx

Thank you, happy to help

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