NHS Rheumatology Appointment At Last 😀

[Garnacha]

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

[allanah]

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

[Garnacha in reply to allanah]

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 🙄

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

[allanah in reply to Garnacha]

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 in reply to allanah]

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 in reply to Garnacha]

Exactly !!

[Marionfromhappydays]

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 in reply to Marionfromhappydays]

Thank you x

[springcross]

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

[Garnacha in reply to springcross]

Thank you x

[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 in reply to AgedCrone]

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 in reply to Garnacha]

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

[Hidden]

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

[Garnacha in reply to Hidden]

Thank you & will do x

[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 in reply to STILL-I-RISE26]

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

[Lolabridge]

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

[Garnacha in reply to Lolabridge]

Thank you, butterflies already 🙄 x

[Marionfromhappydays]

How did it go ? OK I hope x

[Garnacha in reply to Marionfromhappydays]

It's tomorrow at 2.15 but thank you 😊 x

[Marionfromhappydays in reply to Garnacha]

LolMy brain fog is strong today 🤣

Good luck x

[Garnacha in reply to Marionfromhappydays]

🤣😂🤣😂 & me, I had to think twice if I'd been 😉🤣 x

[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 in reply to smilelines]

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