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
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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
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
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...
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.
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, when I lived in the UK, my doctor had to specify ERA and CPR tests or they wouldn't include as they are expensive, as I was told. I have had RA for over 30 years and especially in the early months my ra pain kept moving all over my body.
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.
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.
Hello again, I just wanted to let you know I am feeling better since I had a Lidocaine infusion on Friday as I have fibromyalja as well as RA. I still have joint pain as expected but it has helped me get some relief. My anti-ccp blood test result was 300 which is high and showed I definitely have RA.
I will see what my Rheumy has to say on Tuesday. Take care, Suex
Thank you Deb, hopefully we will all feel better once spring arrives. I will let you know how I get on with with my Rheumatologist tel chat. Take care, stay safe. Sue x
Hello, just to follow up on my tel appt with my Rheumy, it went very well, he answered all my questions. The anti-ccp blood test showed him how bad my RA is and he is arranging for me to start on Cimzia injections, which are listed as ok and shouldn't cause psoriasis problem, also sent a prescription to my pharmacy for lefludima half the dose I was previously taking before which caused me side effects. Not sure I spelled that right. He is informing the Dermatology specialist and will discuss further in 2 mths. He suggested I don't have the AstraZeneca vaccine which they have stopped here for people 65+. He also said that the other vaccines were okay. I will have to wait awhile as it is 85+ that are having the vaccines right now. He sent a report to my family doctor same day. I am very impressed with my new Rheumatologist. I like the way all 3 doctors communicate together.
oh that's brilliant news! so happy for you that the rheumy is so good and all parties are communicating together (that goes a long way in helping any situation), it's interesting that they've stopped the oxford astra zeneca vaccine for over 65's when there's been such a hype on the news and at the latest covid update on Monday where they said it's really efficient and France has also said they'll use it on over 65's. I wonder why they've stopped it.
Thank you, I haven't seen an explanation of why 65+ on the news here. I have 2 sisters in the UK that have had the 1st of 2 vaccines, both older than I am and okay. One of my sister's said that one of the vaccines wasn't suitable if you have an allergy to penicillin per a friend when she took her mum for her vaccine jab.
Hope you get things sorted with your doctor and the NHS. As you may know we don't have NHS here, my Rheumy has to apply for Gov cover for my biologic injection approval. The cost is very expensive. The Kevzara was covered and he is now applying to get the Cimza covered. Things are done differently over here, some for the better. I was saying to my family that I am really lucky that I have been well looked after medical wise.
I wish you the very best and hope everything goes well for you.
Hi Sue, not sure if you'll see this post twice, it disappeared for some reason 🙄.
I e-mailed the consultant yesterday to explain all the issues I was having and the increased pain, he rang me up and said to stop MTX as it didn't seem to be working and was making me ill, I've got a face to face appointment to see him next Wednesday, he said he'd give me different medication, when I asked what was he thinking he said possibly leflumonide.
Hopefully things will get better after whatever new meds he prescribes, I live in hope😀.
That's great glad to hear you have a face to face appt with your Rheumy.
I was on Leflumonide 20mg several years ago, my Rheumy decided to try me on 10mg in the hope it won't effect my tummy.
Oh, by the way I came back to live in Canada with my son and family. I lived with them for about 6 months until I found a place of my own four and half years ago, very close by and they help me a lot, shopping etc. I like to be independent. It is north America but things here are a lot different here than the USA. I am sure you will have heard about what's happened there, hopefully things will improve now Biden is president. I read a previous blog of yours, I didn't know you were having such a lot of pain, you too are going through it. I feel sorry for you, I do hope you have a good meeting with your Rheumy on Wednesday I will be thinking about you. Fingers crossed,🤞 I will try, my hands fingers are deformed and where I have the worst pain.
It is my twin grand-daughters 15th birthday today and my son asked me to come for dinner. 😊 I had better go and have a shower and get ready for when he picks me up.
Aaw Sue you’re so lovely, wow I bet it’s fabulous living in Canada & especially having your son & family close by.
Thank you for your good wishes with only being recently diagnosed (in November) I’m still trying to understand it all, it was such a relief to actually have a diagnosis albeit not to be diagnosed with something you have to get used to for the rest of your life 😔
How wonderful to have twin granddaughters 💕, I’ve got 3 sons one of which has 2 daughters who I absolutely adore, one is 4 (5 this year) the baby will be 1 on the 28th of this month, I’m in seventh heaven when they’re here but very tiring lol.
Hope you have a lovely birthday meal tonight & yes will give an update once I’ve been.
It is a great country to live in, but very cold in the winter and hot in summer. I love the fall most of all. I have a wonderful Daughter in law and she is a great mother to the girls, it was lovely to go out for a meal and they always behaved and many times people would come over and praised them and mum and dad on how well they raised the girls. I sat there feeling very proud. 😊
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