Hospital update

Woofy

Hi peeps.

Had my follow up appointment on Wednesday at Yeo old rheumatology dept.

Having an increase in my methotrexate, and Leflunomide added. My Mex will now be by injectables, which I will be doing myself as from next week. Something to do with better absorption. Bit nervous I won t lie, but the video on how to inject looks fairly straightforward 🥹I have in the meantime been put back on steroids, and reducing at a much slower rate this time.

The lovely registrar thought I was ripe for biologicals, but alas the head honcho said not before trying the combo, I kinda get it, it’s pretty expensive these biologicals.

if the combo don’t work, at my next appointment I will be going on to the biologicals.

How is eveyone else.

noddingtonpete

Hello @Woofy you might find the following of use

https://www.versusarthritis.org/research/research-achievements/anti-tnf-the-inflammatory-arthritis-treatment-revolution/

BettyMac

Hi Woofy

I’m on Metoject too and have found it really easy to self-administer - and that’s speaking as a former needle-phobic! I use the fleshy bit of my thigh, right one week, left the next.

I usually don’t feel the needle going in but there is a tiny, wee nip afterwards. It really is minor. I inject last thing at night before I go to bed.
I still get a bit of nausea the following day but have found that upping my fluid intake and keeping myself busy and occupied/distracted go a long way to alleviating this.

I’m also now on a biologic, having shown that the MTX on its own wasn’t enough, and having previously failed to improve with any of the other stuff.
Biologics are expensive and are fairly “hefty” drugs so it’s understandable NICE needs all other avenues to be explored first.

I find the biologic more difficult to self administer, because the mechanism is different, so I get my husband or another family member to do it for me each week.

Hope the Metoject does the trick for you - and if not, there’s still that other option.

Woofy

Hi BettyMac

Thank you. Similar situation for me. The hospital want me to try the tablet and injection for 3 months, I have an appointment for August, it will be biologicals after if it doesn’t work. I’ve tried two other DMARDs one of which gave me horrible side effects, so this is my last shot if you pardon the pun. I’m on steroids again, to help get things under control. It’s been two and a bit years to get to where I am now. Thank you for the tips about the injection, I’m ok with needles, but haven’t ever injected myself, but the pen mechanism seems straight forward. I also take my methotrexate of an evening, so will stick with that. I’ve been ok on the tablets, I have more problems with the omeprazole that I take with the steroids. Are the biologicals helping you?

Woofy

https://community.versusarthritis.org/discussion/comment/722936#Comment_722936

so interesting. Thanks Pete.
I especially like the success stories it gives me hope.

BettyMac

Hi again, Woofy

I did really well on methotrexate for a few years - then I didn’t - so they started me on Benepali. It was an absolute game-changer for me and I was symptom free for several years, classified as “in remission”.
If that drug had been available when I first started having problems, I might not have had to retire prematurely.

I was toddling along very nicely - until I caught Covid last December, after not masking at my son’s wedding. Since then, I’ve been flaring on and off.

Had to come off the DMARDs until I got over Covid - then was just getting straight again when I caught 2 more viral infections, one after the other. The Benepali does seem to render me far more susceptible to infections than MTX ever did. It’s a two-edged sword!

I hope that’s me back on the straight and narrow, with help from the steroids, because I am officially Fed Up of it all.

I had relaxed my Covid vigilance quite a bit over the last six months - it’s boring and isolating - but if I want to stay well, I’m going to have to be more careful again. At least the better weather will allow me some outside socialising when I can get away without sitting in a mask.

I’ve been lucky with the Omeprazole and haven’t noticed any side effects - though I know other people have problems.

Woofy

Hi Bettymac.

Thank you for the input. I know with the methotrexate and Leflunomide combo I am going to have to be more aware of infection.

And I think endless broken sleep at night leaves you a little rundown too. I finished work last last year, I had a small dog walking business, and it was almost impossible for me to continue. I used to soldier on through the pain, but it really became too much, so I had to retire. I have hated the physical restraint that this condition puts on us, I know probably most on here feel that way.

I was very active. I’m going to be 66 in a couple of months, and I never thought in a million years I’d be struggling to put my underwear on some days. I am stoic though, and refuse to let this completely consume me. Sometimes though it very nearly does.

I have been doing a bit of gardening this past few days, whilst the steroids start to kick in, and I’ve enjoyed that. Must remember to pace myself, which is not always easy for me. I was very surprised to find there isn’t a local group to me for Arthritis sufferers, so I am so grateful that we have this community. I have learnt so much.

Lau

hi Woofy, the self admin injections are really easy to use pens. And as they’re subcutaneous there is v little discomfort. Helpful if you find a comfy spot in your tummy and try and relax as much as you can, some breathing exercises help.
I hope it’s ok for you- practice makes perfect. BW

Woofy

Hi Lau.

once I get the first one out of the way I think I will be fine. The Rheumatology nurse said to inject the thigh, so that’s what I will probably stick with that, until I run out of places lol. Do you use the injections too?