RA: Hello everyoneHope you are all doing ok? Well... - NRAS

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auldreekie2 profile image
14 Replies

Hello everyoneHope you are all doing ok?

Well yesterday I got my phone call appointment for rheumatology, from my consultant. I was not expecting what she said to me, and that was to tell me that we have come to the end of the line, of help. As no tablet, infusing and injections have worked, all together 14. So we are going back on a tablet I was on at the being but this time it will be injection, that I take every fortnight, she’s not giving much hope for it, but it’s worth a try.

I mentioned the new drug don’t know what it’s called, she said they have had a meeting about it, as it has not been passed yet in Scotland.

So that was it, I’ve still to stay on methotrexate and get a course of steroids.

So that was that.😭

14 Replies
Mmrr profile image
Mmrr

There is never an end to the road, just a different road.

Do you know the name of the med you are going to try again ? Maybe it will hold things for you until you can try one if the new meds coming into the market ?

Don't give up.

Personally I think because of covid and subsequently people suffering from long covid more research will be concentrated into immune system medications and this will help us.

As Mmrr says it's a different road, our bodies change and as some medications stop working for random reasons maybe the reverse will happen and one might work for you x

Take care

Pippy25 profile image
Pippy25 in reply to Marionfromhappydays

I feel similarly about all the research concerning Covid and Long Covid that they may actually find some connections with other auto immune diseases which may lead onto better treatments, management, a better understanding of and ultimately a potential cure....now wouldn't that be good.

OzarkLdy profile image
OzarkLdy in reply to Pippy25

Isn't it crazy (sad not yay) how covid seems to hit like a rapid AI that just blows up so many people's lives!?! :( I too think with cytokine storms, pulmonary embolism, etc they will fight harder to make autoimmune a priority.

In the US I'm in a 'red zone' - masks are tyranny and you can't take our freedom, it's just like the flu, hide in your basement if you're so scared.... sighhhh. I have to write HIGH RISK on my masks & it helps keep people from attacking me the rare times I do go out.

Pippy25 profile image
Pippy25 in reply to OzarkLdy

I am so sorry to hear on the rare times you go out this happens to you. We are in lock down again here until 2nd December...or maybe longer if the infection rate doesn't go down and cases continue to rise. All four countries within the UK currently have their own measures in place. So time will tell how effective it has been for each measure. Let's hope that there is a break through in all the research that is being done on Covid that a better understanding of the immune system means more openings to unlocking the complexities of auto immune system disorders. Take care and stay safe x

springcross profile image
springcross

That must have come as a bit of a shock to you auldreekie, it would have to me. I hope you eventually can get some satisfaction but of course, all these things take time. All the best to you. x

Pippy25 profile image
Pippy25

I am so saddened to hear this auldreekie and echo what Mmrr and others have said. Sending you some warm and supportive wishes right out to you. Keep hopeful and let's hope the new drug is passed and you are given that opportunity to try it, Take care xx

Neonkittie17 profile image
Neonkittie17

Sad to hear too that you’ve had so many changes. Let’s all hope this new one .. will be the one. 🤞🏻

Amy_Lee profile image
Amy_Lee

I have no experience on Mtx injection so I can’t comment. However, I have some friends here who can’t tolerate oral Mtx and go into injection, they said they can tolerate better.

Don’t worry too much over it yet, I am sure your rheumy knows what is he doing. Injection may work well for you.

auldreekie2 profile image
auldreekie2

Thank you everyone, for your kind messages. Things might change further down the line, as they are always finding out new things.

So I’ll not be doing any marathon’s or dancing along to strictly.😂

stbernhard profile image
stbernhard

Please don't lose hope. New drugs are coming all the time. There will be one that you can tolerate. It's a shame that your consultant is not including you in the decision making and explaining why and what. If you write down all the questions you have, then on the next call, ask for answers to all of them. Don't let them fob you off, but be prepared and insistent. I wish you all the best.

Wobbies profile image
Wobbies

So sorry and shocked to hear that. Always presumed that you just keep trying different things and one will suit you. How demoralising for you.

Adnil53 profile image
Adnil53

Sorry it seems like nothing working for you!

Maybe you could look at pain management they may be able to help x

OzarkLdy profile image
OzarkLdy

Hey, auldreekie2 , so sorry your body is being so stubborn! One of the most maddening aspects (besides hearing: but you don't look sick) is there are as many specialized combos of 'magic' as there are AI Warriors! I pray this is your magic bullet or at least a hanger on until you can try the new!

I've heard the injections come w/less side effects than tablets so that may be of benefit. My doc forgot to put me on folic & I didn't know any better. Besides being sick as a dog 5-6 of the 7 days between doses, I lost 60% of the volume of my hair & all my beautiful teeth. Now I take 10,000mcg of biotin as d-biotin (Puritan's Pride is the brand I'vehad the best results with) & 1000mcg of folic acid daily (right now I'm on a 1,200mcg s/l folic trial but it doesn't seem to be working as well so as soon as the GNC 1,000mcg is available again I'm going back to it) so at least I don't lose ANYMORE hair & don't have NEARLY the nausea issues! I've been off mtx for 8 years (thank heaven) & off prednisone for 5 years except rare extreme moments of massive 'I gotta keep functioning' bring on the devil's tictacs for a day or 3.

I don't know if you're into Facebook but there's a massive Rheumatoid Arthritis support group that has so many people and has been very helpful over the years for me. Best of luck! Hugs & Spoons

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