Why are we waiting?

[RootsToots]

So they gave me my last infusion of rituximab in June 2023. They made no difference to my pain or blood levels. I had zero follow up calls and no further offers of help.

The rhemy nurses at the hospital say they won't answer emails or phone calls unless its between 10am and 2pm three days a week.My experience is they just wont reply unless your bloody lucky.

In July my Dr doubled my pain meds because pretty much every day before 9am and after 2pm I am in such pain I cant operate normally.

In October after being rushed to A&E because of symptoms it now turns out are related to long covid, they finally got involved and said no more rituximab. They recommend "tocizulimab" or something like that.

So for the last 12 weeks I have been really fed up. Waiting to find out about the drug they are going to try next. Unable to have anything like a normal life.

In the last year my feet have become badly deformed along with my hands. To the point where its taking me alot longer to work my keyboard or just stand up.

Everything just feels so slow 🐌 😕 and I can see myself deteriorating.

Anyone else having the same experience with the NHS? Any advice on how to not get really angry and depressed ?

[J1707-]

I’m lucky I got seen quite soon after my infusion as sadly it made things worse I was told if not working after 3 months it’s not going to. I’m changing to a Jak soon .

You’re not getting the care you need . If it was me I would contact PALS and your MP. I had to contact my MP for something else he was brilliant got it sorted when I was getting nowhere.

Good luck you deserve better.

[Annlesley]

So sad for you not getting help quickly. I should contact PALS they are really helpful and quickly help you.

[cathie]

you don’t say where you are in U.K. it feels as though it varies quite a bit from place to place.

[Jillyanne]

definitely contact PALS but my rhuemy team work at a snails pace which is very annoying , I have contacted my rheumatologist secretary and even she doesn’t answer 😡😡🤷‍♀️

[Samwise91]

Really sad to read your email. I also am having dreadful problems too and finding daily living - and sleeping - with pain and disability almost impossible. Hopefully when dealt with 'daily living' 'challenges' I'll write too. Your email makes me fell less alone - so I thank you but really hope you get good advice and help very soon. I so wish I could help myself and also get publicity and better treatments for all those suffering. Keep going spring is coming and the grey skies will go...

[Samwise91]

NHS getting more and more incompetent...Proof in many of these emails...

[cathie]

I am reading rituximab and covid in the same sentence. As someone being administered ritux I know that we're less protected by the vaccine when on ritux and more vulnerable. Could that be connected to your problem?

I wish people would stop criticising the NHS - there's a lot of good things about it and we do rely on it so best not to undermine. Although not uncritically.

[Retirednhs]

No wonder you are feeling low if you have been in hospital so ill. Your notes will have been with you on the ward and your RA consultant may be unaware of your admission unless that consultant got in touch with the RA dept. I had to ask why l had not been called for some results of a scan last October and the consultants secretary who was unaware of now discharged status asked for my notes now and l see that consultant next week.Sometimes you have to be pro active and seek help as you can be lost in all the workings of non communication. Hope this helps and you get sorted

[AgedCrone]

Please don’t blame the rheumy nurses…….the hours they can take/make calls will be a hospital decision ……probably by a manager who has no idea that a rheumy nurse helpline could save needing an appointment. …& help balance the budget!

It happened at my hospital about 2 years ago…..we can only call between 6 & 10am…..then the number of rheumy nurses was reduced…because not as many people were calling! I wonder if management are up making calls that early?

But until management positions are filled by somebody with an ounce of common sense..money will be wasted paying six figure salaries to the wrong people.