Update on f2f (being called to the headmasters room) :) - NRAS

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Update on f2f (being called to the headmasters room) :)

Garnacha profile image
28 Replies

Hi Everyone

Just thought I'd give an update on my f2f last Thursday.

A bit of background, started on 90mg of etorcoxib January 2020, 200mg of hydroxychloroquine added in March 2020, diagnosed with psoriatic arthritis November 2020 and 20mg methotrexate added, March 2021 leflunomide added at 10mg, September 2021 leflunomide increased to 20mg. October caught a bad cold and chest infection so advised to stop methotrexate which was now being taken by injection, developed severe pain in side, back & front of ribs on left side, sent for urgent chest x ray after antibiotics didn't work, then a CT Scan, all results normal.

Also been suffering with pins & needles in feet & legs, spoke to private consultant who said the pain in my side etc sounded like a trapped nerve caused by inflammation, he also said that the pins & needles could be caused by leflunomide and to reduce dose to 15mg. December 23rd rang GP as the pain in side was so bad I couldn't face Christmas suffering, prescribed prednisolone at 20mg, this dramatically improved the pain so it was only a niggle.

Eventually saw NHS rheumatologist in January 2022 after a year on the waiting list, ran through everything that had happened over the last 2 years including the pins & needles and pain in side, he said the pain in side could be muscular, I had my doubts about this but............ he arranged for me to have neuropathy tests and a spine & hand x ray.

Had neuropathy tests and saw rheumatologist again in March, the neuropathy tests were pretty normal along with the x rays, I told him how my right shoulder was starting to hurt again and he offered a steroid injection but said he thought it would be better if I had an ultrasound guided injection and would refer me for this.

I told him how ill metoject makes me feel, nauseas, brain fog, giddy, like wading through mud and he said I could stop it but it was up to me on which was worse, the pain or side effects. After the appointment I could have kicked myself for not standing my ground on how bad metoject makes me feel.

On my birthday in March whilst away in the New Forest caught covid, was supposed to be given anti virals but an absolute nightmare being referred from pillar to post, spoke to rheumy helpline to said to stop metoject & leflunomide until testing negative and feeling well again, went nearly 3 weeks without both drugs and oh boy could I feel it by the end of the 2nd week.

Went for ultrasound injection Friday 13th May (I know lol) but the radiographer said he couldn't do it as there was a small tear in my tendon, he said I needed to be referred to an orthopaedic surgeon and would write to the rheumy advising this and for me to telephone the secretary to also let them know what the advice was as my next appointment wasn't until September.

Rheumy rang me and agreed I should be referred, I said that the pain in my side was back with a vengeance, unable to sleep as my shoulder was also giving me so much pain, he agreed to give me 10mg of prednisolone for a week then to taper off to 5mg for a week. 10mg took a slight edge off the pain in my side but it was still excrutiating, rang helpline a couple of times and eventually a nurse rang me to say the rheumy wanted to see me, felt like a naught schoolgirl being called to the headmasters room!

Anyway, saw him last Thursday (we were on our way to Birmingham for Gardeners World) all my usual suspect joints were hurting which as daft as it sounds I was glad of so he could see, he said my recent blood tests were fine (CRP <1) and I replied that with psoriatic arthritis I understand bloods can show as normal, I also took the document Hidden kindly shared which described the pain in my side to a tee, the rheumy said he'd checked back on all my tests and spoken to the team including a muscoskeletal radiographer who all said there was nothing to show, he did say however that he believed me regarding the pain and said he thought it might be beneficial for me to have a full bone / body scan which would show cartilages & tendons so waiting on an appointment for this as well as orthopaedic surgeon.

He said again regarding the side effects of metoject I could stop it if I wanted to but didn't offer any alternative, when I asked what do I do in the meantime as missing just a week of metoject my other joints were flaring up he said possibly biologics but I would have to meet NICE guidelines, he said I'd already had sulfasalazine which I replied I hadn't so now I'm giving that a go, I was so relieved I didn't have to take metoject anymore, it has really helped (not completely, but better than I was) but the dread every week before I used it was getting worse and worse as I knew I'd be feeling rotten again for 5 - 6 days and just wanted some sort of normality back, it's bad enough being in pain but feeling like you're losing your marbles too was too much.

When I asked if I could take prednisolone too for the interim he replied that if I really wanted it he would give it but, the scan wouldn't show up any inflammation if I did, we agreed that if it gets too much I can ring him and he'll do me a prescription, I am a bit worried as starting a new drug which can take up to 3 months again to work and wondering how much pain I can put up with before I crumble but I'm going to give it a go, the worst part is the not sleeping and having missed one dose of metoject my shoulder is starting to play up bad again.

Fingers crossed I don't have to wait too long for the body scan.

Sorry the post is so long winded, after we left the hospital we had to drive to Birmingham getting back Sunday and I look after my granddaughter on a Monday, I also needed to get my head around everything discussed, back to fortnightly bloods and only recently got to 2 months.

I had a letter this week to say following my recent clinic appointment I'd be getting an appointment with a drug monitoring nurse, can anyone tell me what this involves please? previously all my meds were prescribed by the private rheumatologist and I only had to have fortnightly / monthly blood tests.

Deb xx

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28 Replies

Wow

I can empathise totally, I hope sulfasalazine works for you. Let's hope it kicks in quickly and you get some relief, bloody arthritis, would love to kick its ass.

I would definitely keep in mind the offer (even if a bit feeble offer) of biologics from your consultant, good to start looking into things. I've read cosentyx is a good one for PSA, think some biologics work better depending on the subtype of arthritis you have.

I hate with a passion when medical staff say "but your blood work is fine" its like they are gaslighting you and make you feel like its all in your head 🙄

I have no experience of having a nurse solely for the purpose of checking bloods, I just got to me GP.

Good luck x

But your blood results are fine - picture of someone waving and drowning
Garnacha profile image
Garnacha in reply to Marionfromhappydays

Thank you 😊 oh definitely re biologics, when I first saw him in January & mentioned that the private consultant had said I'll probably need biologics think I got his back up 🙄🤣 but now 6 months later think he's realising they will be the next step.

Yes me too hoping they work quickly, said to hubby I've stopped taking around 40 tablets a week now without metoject, no sickness pills 3 x a day for 5 - 6 days, no folic acid needed either & I also stopped the b12 ones 3 x a day as I'm 99.9% certain my levels drop because of lefluminode (which is also the culprit for my pins & needles) but, the last couple of days been feeling really sicky, & one of the side effects from sulfasalazine is nausea 🙄 so I'm back taking those hopefully it's just whilst I get used to them.

Love the photo, very apt 🤣

How's things with your dad? How are you? Xx

Marionfromhappydays profile image
Marionfromhappydays in reply to Garnacha

Thanks for asking.Not so good, but 1 day at a time!

Garnacha profile image
Garnacha in reply to Marionfromhappydays

😘😘😘 x

Chrissycl profile image
Chrissycl in reply to Garnacha

I'm on sulfasalazine and barictinib was told to take 5mg a day of folic acid as the sulfasalazine stop it being absorbed properly easy said but also not to take it until a couple of hours after taking the sulfasaklazine and I forget.

Garnacha profile image
Garnacha in reply to Chrissycl

Oh thank you, nothing was mentioned to me about continuing folic, will ring the helpline this morning x

Chrissycl profile image
Chrissycl in reply to Garnacha

I noticed it on the leaflet that came with it and asked my practice nurse and she had to look it up.so its not that well know,probably me being a bit obsessed about what I take.

Garnacha profile image
Garnacha in reply to Chrissycl

Lol, I'm the same read the whole leaflet first 🤣 I rang the helpline this morning & still waiting for them to ring back but, dr Google says yes take folic, with methotrexate you take it 6 days a week so not on the day you have methotrexate, with sulfasalazine do you take it for 7 days? X

Chrissycl profile image
Chrissycl in reply to Garnacha

Yes I take 5mgs daily

Garnacha profile image
Garnacha in reply to Chrissycl

Thank you x

Leics profile image
Leics in reply to Marionfromhappydays

You’ve summed up how I feel to a tee Marionfromhappydays.

AgedCrone profile image
AgedCrone

As your doctor mentioned complying with the NICE regulations the nurse will probably go through your drugs to check if you qualify on the number of DMards you have taken and failed, before you can be put forward for Biologics…& she will allocate your Disease Modifying Score.You said your drugs have all been prescribed by a private rheumatologist…..he cannot prescribe Biologic drugs …..they have to be described on the NHS….so that is probably the reason for that referral..

So definitely take up that appointment with the nurse otherwise you won’t be able to be prescribed Biologic drugs.

Garnacha profile image
Garnacha in reply to AgedCrone

Thank you, yes was going to go even just to see what it's about.Yes, I'd gone private initially as no idea what was wrong & not really getting any help from gp, it was the private consultant who said he'd write to gp about getting me on the NHS list as he couldn't prescribe biologics.

I remember seeing a post on here a while ago on NICE lowering the benchmark for biologics, will try & find it later as I didn't really take it in at the time 🙄

AgedCrone profile image
AgedCrone in reply to Garnacha

It depends on your local health authority whether you need to have failed on 2 or 3 Dmards…., one of which must be Methotrexate…but the guide lines are much more relaxed now the costs have come down.With the arrival of Bio similars ….. very few people are refused funding these days.

If your present Private rheumatologist doesn’t have an NHS list..you will need to find a NHS rheumy to prescribe Biologics for you….GPs can’t prescribe them.

I don’t know the ins outs if you are prescribed Bio injections or tablets ..I have infusions & the NHS Rheumatology Department at the hospital deal with them…& keep track of blood tests.

I hope whatever is prescribed helps you…but do take the Rheumy’s advice…even if you have never heard of the drug…there are so many appearing these days the unknown may be just what you need.

Garnacha profile image
Garnacha in reply to AgedCrone

Thank you, yes when I initially saw the private consultant I didn't have a clue what was wrong, I didn't check if he worked for the NHS & when he said I'll probably need biologics & he'd ask to get me referred to the NHS was when I found out he'd retired from the NHS 🙄I'm now under an NHS rheumatologist.

I do find now that whenever you see someone in the NHS they ask you what you think, most of the time I reply that they're the specialist & I'd prefer to follow their recommendations x

AgedCrone profile image
AgedCrone in reply to Garnacha

I know it makes me smile when they keep saying “Is that OK”?I think it’s just the way of the world these days…many people would be quick to complain if they weren’t asked every single time!

helixhelix profile image
helixhelix

It did take me a few months to get used to Sulpha, as it upset my stomach in a hugely embarrassing way. But worth it as was effective for me.

Did you ever try MTX injections? As make the nausea side effects diminish as bypasses the stomach. Also curious about why you were advised to stop MTX straight away rather than overlap by a few weeks to give the Sulpha a chance to start working? Was that not mentioned as an option?

Hope the Sulpha works, and beware the orange wee!

Garnacha profile image
Garnacha in reply to helixhelix

Thank you, I've been on metoject since last October but didn't really make a difference, plus the hangover feeling, brain fog, mouth ulcers etc also lasted 5 - 6 days.

I did ask if I should continue with it as a bridge till sulfa started to work but he said if the effects are too much to just stop & it stays in your systemfor around 6 months, I do have 2 left & will see how I go but the pains already starting to increase, I wouldn't want to leave using them though for longer than 3 weeks as I'd be worried having g 20mg without any build up could make me feel really ill, I'm going on holiday in 3 weeks so will have to decide whether to take them with me, sods law it couldn't have happened any other time so I could at least have contacted the helpline for advice (I mean when I'm on holiday in zante) 🙄

Lol yes I've already noticed a change 😅 I've got dry eyes too so waiting to see if they turn orange 🤣 x

Sheila_G profile image
Sheila_G

I hope you get sorted soon and the right drugs are found for you. Don't despair, they are there it can just take some time to find what works for you. All the best

Garnacha profile image
Garnacha in reply to Sheila_G

Thank you x

Mmrr profile image
Mmrr

I do hope things improve for you, it can be along and winding road to get appropriate treatment. But stand you ground, there is absolutely no need to stay on meds that are making you feel so ill. None.

Biologics are not the answer to everyone's problems, but you do deserve to be given the option for a more appropriate treatment.

I found keeping a journal and providing a summary at each appointment, asking for to be scanned into my notes a real boost to my quality of care. Best wishes.

Garnacha profile image
Garnacha in reply to Mmrr

Thank you, yes I took notes with me but tbh he wasn't that interested however, I took your advice & stood my ground, it was who can speak the loudest & I know I won a few times 🤣 x

Deeb1764 profile image
Deeb1764

I went thro 4 drugs as MTX made me I’ll so did Benepali sulfasazine and lefluomide however all I did was call if after days or weeks (super sensitive to drugs) if everything was bad. My RA team then got

Me on biologics.

So my answer would be if the next drug does not work or it makes you poorly as some do from side effects chase for a swap. Now this is not easy as it took me over 3 years of nothing working or making me I’ll with side effects but I was pro active in the changes but my Ra team were also aware of issue from migraines to higher blood

Pressure etc.

We have this illness but we also need to make sure we get the drug that suits us. We are all different so I did keep a diary of each new drug kept monitoring BP or side effects so I had info to hand if asked.

Baritcitnib has been my drug that sort of works but i still need pred

Good Luck on the journey of battles x

Garnacha profile image
Garnacha in reply to Deeb1764

Thank you, yes wish it wasn't such an uphill battle all the time, just want to have my normal life back, I'm not sure if sulfa is going to suit either, had to start taking the antisickness pills again Thursday & keep getting awful shakes in my hands, just hope it's my body getting used to it & it all settles down soon x

Deeb1764 profile image
Deeb1764 in reply to Garnacha

I always tried two weeks to adjust and if still rotten would call and tell them how bad I was . Though one drug day 4 and I was so I’ll with it even they were stop stop now😂

Leics profile image
Leics

I’m sorry to hear you’re having to have such a battle with meds and being listened to. If it was me I would definitely find out how long the wait is for the full body scan as I’m having to wait for 4-5 months for a ultrasound and currently not on any treatment although I did have a depo last week which thankfully this time seems to be helping. Sulpha worked well for me initially until I developed a reaction to it so had to stop. No one will ever know your body better than you but sometimes you have to be proactive and fight your corner don’t always rely on what they think is best push for an alternative if their current recommendations don’t help. I hope you find that sulpha after a few weeks really helps you but if it doesn’t then doubly make sure they know about it whoever is treating you be it GP NHS or private.

Garnacha profile image
Garnacha in reply to Leics

Thank you, when I asked how long it's likely to be he couldn't say 🙄 I also asked if he had an idea of when I'm likely to see the orthopaedic surgeon, again he couldn't say except that as I'd been referred from rheumatology it wouldn't be as long a wait as someone being referred from a gp as I'd already had an ultrasound scan.

I'm going to keep a log of the side effects etc & will ring them if needed, I did ring them today to ask if I should still be taking folic acid tablets which I stopped as I'm not having metoject anymore, still waiting for them to ring me back but checking out dr Google think I should be. You'd think they would have mentioned this at the appointment, I've got blood tests Wednesday so be interesting to see the results 🤔 x

Leics profile image
Leics in reply to Garnacha

As far as I’m aware you don’t need to take folic acid unless you’re on methotrexate. But I’m not a doctor so hopefully they’ll let you know soon.

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