So fed up but hey ho

[Garnacha]

Hi everyone

Haven't posted in a while as been feeling cr#p

Since the introduction of lefluminode in March in addition to the MTX, hydroxy aswell as the etoricoxib, the consultant also gave me prednisolone to hopefully tie me over till the lefluminode kicked in, initially 20mg pred for 2 weeks, then 15mg for 2 weeks down to 10 for 2 weeks.

The first 3 days of pred I was literally bouncing off the walls & only had about 8 hours sleep in 72 hours, i tried only 15mg but jeez the pain came back tenfold, went back to 20mg as couldn't cope with the pain & spoke to drs pharmacist after you lovely people suggested I try reducing the pred by 1mg eg try 19 or 18mg

Reduced the pred by 1mg every week but as soon as I went below 10 the pain was back, emailed consultant who said to stay on 10mg, I'd also said how sick I was feeling for 5 - 6 days after taking mtx & he said he didn't want to take me off it, I mentioned to him at my last appointment how I'd read on here people take folic acid for up to 6 days a week but he said it doesn't make a difference 🤔 so am still only taking 5mg once a week.

Tried 10mg again for a week but pain still bad so tried 15mg, this seems to work but the gp said to taper off again by 1mg each week, I'm currently on 13mg & pains working its way back 😢 I know like other dmards lefluminode can take between 6 weeks to 6 months but so fed up, I also get the hangover feeling for 4 - 5 days, terrible brain fog & really giddy like I'm drunk for 3 - 4 days.

On top of all that (if that's not enough) I've had a sore on my leg near the crease where you bend, prior to mtx last November I was given solaraze cream to use as the Dr said it could develop into skin cancer, this seemed to start clearing it up until mtx was introduced & the consultant said to stop hydroxy, this was when I went downhill rapidly with a massive flare (never had one before) & hydroxy was reintroduced, ever since then things haven't improved & the sore on my leg got worse & worse, I was given steroid cream for 2 months, that didn't work so given stronger steroid cream, this also hasn't worked & the sore is spreading & so so painful I want to cry, sent the gp updated photos, he rang me last werk to say he was referring me urgently to dermatology & I should hear within 2 weeks, not heard yet but 2 weeks is up next Tuesday so fingers crossed

I've also got similar sores on my hands, to be honest, not thinking I was out in the sun a couple of weeks ago & being new to this didn't give it a thought that my skin would react to sun especially on my hands from the medication, everything just takes ages to heal now & being on my hands prone to knocking them so they don't heal

I was diagnosed with psoriatic arthritis when I saw a consultant privately last year, he said that I'm likely to need expensive treatment so guessing this could mean biologics & he'd ask my gp to refer me to the NHS, this was in January, I found out in March the gp hadn't done this! A letter was sent on 3rd March, I still hadn't heard anything to say I'd been added to the waiting list & eventually managed to get hold of them, the confirmed I was on the list but it was at present 77 weeks! So maybe a year Christmas I may see someone

I asked if I was able to access the rheumy helpline in the meantime, no, as I haven't seen "their" consultant this option is not available 😢

So fed up of it all & just needed to get it out xx

[allanah]

I found dermatology amazing. Sorted me right out !! Hope you find it the same x

[LoneEra in reply to allanah]

Likewise. Always had a good experience with dermatology. They actually DO something to help

[allanah in reply to LoneEra]

Yes i though oh... just cream that wont work but no i got a dynamic consultant who was enthusiastic and great!

[springcross]

Hi Garnacha. This sounds like a horror story and I'm so sorry to hear that you've been going through this nightmare. I'm afraid I can't help you with the medications as I don't have much knowledge with that unlike many others on here but I can tell you that when I was on Pred and had to reduce (bearing in mind that I had to reduce from only 7.5 mg starting off with a Depo Med injection), my rheumy told me to reduce by 1 mg per month. I did this and even then had about a week each time of discomfort which eventually settled. I know others on here have been told to reduce by 1 mg per month too. I really hope you can get some relief from this nightmare soon and also can get your skin problem sorted out. Thinking of you. xx

[Wobbies]

What an awful dilemma you are in. You have all my sympathy as it must all feel too much. When I had oral steroids I had terrible trouble coming off them with palpitations and had to reduce by 0.5mg. per month. Trouble is the pain all came back once I got below 10mgs. and now take Meloxicam as my painkiller in addition to biologics and MTX. Still in pain though unless I have a steroid injection which I try to avoid.

[Neonkittie17]

Sorry to hear you are feeling bad and no surprise. Could the behind the knee sore actually be the psoriatic arthritis? My cousin has this under control in adult life but in her teens she had sores behind her knees and crook of arm especially. My friend has non arthritic psoriasis and her troublespots of flaking sores are always those same places too. I hope you can soon see an NHS rheumatologist. It’s awful waiting and I hope your GP has highlighted the need for you to be seen soon. X

[Garnacha]

Thank you everyone for your kind words, this is the skin condition, it was nothing like this in September & has gotten so bad, the drs are going to ring me tomorrow morning to discuss but I'm not sure if its actually infected now too 😔 just seems that since being on all the different meds everything's gotten so much worse. If I'm prescribed anything at all & then it's stopped for whatever reason including antibiotics my body just goes 10 steps backwards x

[Flor1rence]

Hi, just read this post. What an awful time you are having. I have psoriasis mainly on hands and feet, a rare dermatitis but once I was referred to Dermatology they have been marvellous. I am very lucky as it is pretty much controlled by MTX, I have odd flare ups. Hope you get to see a Dermatologist as soon as possible to help you manage your symptoms x

[Marionfromhappydays]

You've been through so much and your sore does look sore !

All this inflammation can get us in a right tizzwas cant it; I'm a bit new to all this so not the best person to help but I just wanted to say I hope you get the right help and get some relief from everything. It can really get you down cant it, when I don't keep myself occupied my mind can wander and it does me no good so I know how you feel x

Massive hugs x

[Moomin8]

Morning. I'm so sorry to hear what torture you're having to endure at the moment 😓 Personally, I do my Metoject injection ((20mg MTX) on a Monday and then take 5mg Folic Acid from Thursday through to and including Sunday - so 4 x 5mg/week. Do you have MTX tablets? If so, you could ask to go onto MTX injections which are called Metoject. I found that I felt quite unwell taking the tablets - but that's just me, of course. I too hope that you get some relief very soon.

On the NHS link below, it talks about starting on one 5mg tablet and possibly increasing it up to 6! Personally, I think you have a very good argument to ask again to increase your folic acid.

nhs.uk/medicines/methotrexate/

However, this study suggests 5 - 10mg of Folic Acid is sufficient to take each week.

ncbi.nlm.nih.gov/pmc/articl...

[Deeb1764]

Just sending a hug as it sounds like you are going thro a battle lately and just over it. Keep pushing for treatment even if you are over it all as you need to be listened too. x

[Kim-NRAS NRAS]

Hi there, I'm so sorry to hear you are going through such a rough time. I note that you aren't able to access the rheumatology helpline, so please do consider giving the NRAS Helpline a call (if you haven't already), they are available on freephone 0800 298 7650 Monday to Friday from 9:30am-4:30pm - even if all you need is someone to be a listening ear for you. Take care.

[Garnacha in reply to Kim-NRAS]

Thank you Kim x

[LoneEra]

To be honest, I have just called rheumatology departments before - even before seeing “their” consultant - and talked them through the issues I’m facing.

Sometimes you get hold of a really nice person who bumps you up the queue or listens at least. It’s worth trying to speak to them again.

Be really honest about where you’re at and how much you’re struggling xx

[Garnacha in reply to LoneEra]

Thank you, the lady I spoke to was very nice and sympathetic to me and said all she could suggest was to ask the GP to send another letter asking if they could speed it up a bit but added, whether they'd take any notice or not........... not sure if she meant the GP or rheumatology. reading what some have said on here about their experiences with dermatology, at the moment I'm pinning my hopes on them and hoping they'll be able to help in some way, if not, I may try and speak to the rheumatology department again, but twice when I've rung it's an answerphone and I don't think they're responding to some messages left, especially to those who aren't on their "books" so to speak x

[LoneEra in reply to Garnacha]

Ok, so there’s some specific wording the GP needs to use to them. Firstly that you need an “urgent” appointment and secondly that they are requesting “advice and guidance” while you wait to be seen.

The latter means that rheumatology will write back to the GP with suggested tweaks to meds while you are on the waiting list.

I’d recommend putting this in an email to the GP. Come back to me if that doesn’t make sense 🙂 xx

[Garnacha in reply to LoneEra]

aaw brilliant, thank you so much, I've got a medical review on Tuesday and was told by the lady who books blood tests this morning to speak to them about chasing up the referral, I'll make a note (along with all the other things on my notepad) to say exactly what you've said, fingers crossed this will work xx

[LoneEra in reply to Garnacha]

Good luck! This worked for me. A 37 week wait turned into an appointment in 3 weeks. Fingers crossed xx