NHS Rheumatology Appointment At Last πŸ˜€: So excited but... - NRAS

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NHS Rheumatology Appointment At Last πŸ˜€

Garnacha profile image
Garnacha
β€’24 Replies

So excited but full of trepidation, just had a phone call from NHS Rheumatology department to say they've got a cancellation appointment Thursday! 11 months waiting for this, wait soon over.

I'm excited to be actually seeing an NHS consultant, this will give me access to the helpline which I've been unable to use since a private diagnosis nearly 2 years ago.

I've been keeping a diary (lapsed a few times) of what's been going on which I'll type up tomorrow & try to keep as brief as possible & take all the letters I have from my private consultant.

I've been putting off making an appointment with the private consultant as I know I'll have to stop the lefluminode due to peripheral neuropathy, the only other option he could give me was sulfazine which I understand is not as strong as lefluminode & can take up to 6 months to work, the consultant believes I'll need biologics which he can't prescribe.

I was going to post 2 weeks ago as I'm finding as the week goes on from having my weekly 20mg of metoject, I get more & more of a brain fog, really bad memory, can't remember what things are called & unsteady on my feet, I had to ring 111 the other weeks as I took 2 lefluminode, as soon as I took the second one I realised & panicked, I'd now taken 40mg! Anyway after speaking to 111 then having to ring out of hours drs, them having to check with the poison unit, everything was OK.

Ive read on here numerous times how a lot of you on mtx take folic acid up to 6 times a week, when I've mentionedit to the consultant hes always said one a week is fine.

As I'm still feeling sick for 3 - 4 days after metoject I decided to try folic for 6 days leaving out metoject day to see if it helps with the sickness, brain fog etc. I bought some from a supermarket last week, I only started taking it last Thursday so not sure yet if it's making any difference, although I've read that peripheral neuropathy can cause the above too.

Fingers crossed the NHS consultant will be able to help. X

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Garnacha
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24 Replies
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allanah profile image
allanah

Great news good luck. You sound well organised for it xx

Garnacha profile image
Garnachaβ€’ in reply toallanah

Thank you, just said to hubby I'm all of a dither now 🀣 I was wondering whether to stop my meds, the lady that rang said she didn't know she just makes the appointments, I've decided to not take any between now & then as I'm worried if I go & not in any visible discomfort or pain he might not believe me or think it's not as bad as its been πŸ™„

The last few days my left hand & thumb joint has joined into the party πŸ₯³ πŸ™„ . I doubt 2 days without any meds will make much if any difference either way....... x

allanah profile image
allanahβ€’ in reply toGarnacha

Yes just tell them what you have been taking I think ! Glad you got that list ready, don't forget to add all the " bad impact on my life and mental health and physical coping daily " you need to ouch it I found

Garnacha profile image
Garnachaβ€’ in reply toallanah

Ooh thank you, never thought of that, I haven't been able to work since Dec 2020, either through pain or effects of the meds, also, (sorry, I know you don't need to know all this but it's helping me think of things I might not have thought of 🀣) not being able to turn over in bed, flush the toilet or anything that involved extending my arms, also, the pain in my back, side & under front of left ribs which the consultant said over thecphone sounded like spinal inflammation & root nerve irritation. X

allanah profile image
allanahβ€’ in reply toGarnacha

Exactly !!

So pleased x Glad you are prepared, hope you can convey everything you want to and you get answers and the treatment you need x

Garnacha profile image
Garnachaβ€’ in reply toMarionfromhappydays

Thank you x

springcross profile image
springcross

That's great news Garnacha, I hope it all goes well. x

Garnacha profile image
Garnachaβ€’ in reply tospringcross

Thank you x

AgedCrone profile image
AgedCrone

Unfortunately the Folic Acid you can buy over the counter is nowhere near as strong as people on Mtx are prescribed…..so don’t be disappointed if you don’t feel any benefit from it. Maybe when you get your NHS appointment you could ask if you could get the prescription strength to see if it helps your symptoms.

Garnacha profile image
Garnachaβ€’ in reply toAgedCrone

Thank you, I did wonder that so will definitely ask Thursday if I get chance, not sure how long a first appointment normally is x

AgedCrone profile image
AgedCroneβ€’ in reply toGarnacha

Arrange your list of questions in the order you feel will help you most….I usually end up deciding that in the waiting room!

Hope tomorrow goes well. Let us know what happens and how you get on.

Garnacha profile image
Garnachaβ€’ in reply to

Thank you & will do x

STILL-I-RISE26 profile image
STILL-I-RISE26

Ok Dear the folic acid you are taking is not really going to work. You need a prescription for the stronger dose. Which is 5mg each.

Garnacha profile image
Garnachaβ€’ in reply toSTILL-I-RISE26

Thank you, I've put it on my list of questions for the consultant tomorrow :) x

Lolabridge profile image
Lolabridge

Good luck with your consultation tomorrow - hope you get all your questions answered.

Garnacha profile image
Garnachaβ€’ in reply toLolabridge

Thank you, butterflies already πŸ™„ x

How did it go ? OK I hope x

Garnacha profile image
Garnachaβ€’ in reply toMarionfromhappydays

It's tomorrow at 2.15 but thank you 😊 x

Marionfromhappydays profile image
Marionfromhappydaysβ€’ in reply toGarnacha

LolMy brain fog is strong today 🀣

Good luck x

Garnacha profile image
Garnachaβ€’ in reply toMarionfromhappydays

πŸ€£πŸ˜‚πŸ€£πŸ˜‚ & me, I had to think twice if I'd been πŸ˜‰πŸ€£ x

smilelines profile image
smilelines

hope all went well and you are all straightened out. It seemed like you really needed the extra care because taking extra folic acid seems very straight forward yet you were not told to take it!

Garnacha profile image
Garnachaβ€’ in reply tosmilelines

Thank you 😊 the appointments this afternoon so hopefully will have more info then,

I was told to take folic but only once a week, whenever I've asked if it could help with sickness, brain fog etc always told no, I even asked the local pharmacist who said I'd need my bloods checked before taking more, had this done & as everything reported ok still not prescribed more than once a week so decided to buy some, from the above comments I don't think shop bought ones would make much if any difference but hopefully will find out more today x

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