Injecting Methotrexate/biologics

[Eve]

Had a rhumo appointment earlier and it's still not getting under control on the 20mg per week oral methotrexate so I've got to go back in a couple of weeks for my rhumo nurse to go through injecting myself with the max dose of methotrexate then when settled they are going to look at biologic drugs and mentioned something about an Act Taper (?). Sounded like something to do with a trial and I'd be referred to a different nurse.

Thought I'd see if anyone who has experience of them has any tips for questions to ask etc... as I'm notoriously rubbish at remembering to ask things in appointments as they are always so busy so thought I'd go in with a list of any questions.

Having pain meds upped too but seems like options are shorter due to kidney issues. Hopefully things will be a bit easier soon. Am trying to fill in my DLA form at the moment, OMG it's long!

[nungate]

Those forms are a nightmare Eve, stick with it, it's worth it in the end. Best thing to do is keep it simple, just give them the facts. I had help from the C.A.B with one of these forms and they told me to keep it simple (it saves time) as I do tend to waffle at times

[wolf63]

DLA form - I filled one in and got it. You have to overstress how the illness causes disruption to your life. Don't assume that the person who will be reading it knows anything - coz they won't. They are horrible forms but, normally, the CAB will help you out if you get stuck.

I know what you mean about the drugs - Frankie gets a steroid injection for his asthma every month. It is not doing his body much good but the Vet says to balance up your current (complete brain freeze as to what she said) but it was along the lines of his quality of live now versus long term problems that may/may not happen.

Good luck with the form. Ten years since I stopped slaving away for DWP so it has probably changed since then.

[bednobs]

hello jenna :)
firstly, you must persevere with the DLA form and do it quickly - DLA for new claimants will cease to exist from the beginning of april, and it's my understanding that PiP with be more stingy and harder to get.
secondly - in a way it's good news you've been given today, biologic drugs are probably going to be very helpful for you i think. I think it will be important for you to know which one you are going to be on - because there are different things to think about. For example, is it going to be a regular infusion (such as infliximab) or injections you do at home (entanercept). Your post makes it sound like it's going to be enbrel but you have to think about stuff like how you are going to manage getting deliveries, as it has to be kept in the fridge (same with methotrexate)

[bednobs]

ps i used to have it delivered to my work, because i wasn't at home during the day to let them in, but that was ok cause i worked in a clinical environment where they didnt mind having cytotoxic drugs in their fridge, but although i think you work for the NHS i don't think it's clinical is it?

[Eve]

Thanks all :)

Hiya :) Errr I'm not sure work would be too impressed haha! Not that I'd want to put anything (other that my sealed lactofree milk for brews) in the work fridges - the state they can get in is disgusting!

Thanks for the tip, definitely a big question to ask.

I think once I get going on the form I'll be ok. Just did some stuff to see if I qualify for a disabled bus pass which would be a godsend as I could use the money it would save for some help with cleaning and home food deliveries and such. It would also help me use trams and such round the city centre without shelling out silly fares and save walking.

She didn't say what - it was quite quick really, was a nurse apt but she brought my consultant in to look at me and it was all a bit what??? Will hopefully get more info when I go see my nurse so she can take me through injecting myself. She didn't mention any names of drugs.

I need to just get a shift on and get the form done, just been getting home and wanting to switch off but have made a start. That will give me a spur on it they are changing it!

[Eve]

On a hopefully brighter note though, they are keeping me away from the orthapedic surgeons for now to see if things can get settled RA wise in case they go operate and it doesn't help or makes things worse.

http://www.theanswerbank.co.uk/Body-and-Soul/Health-and-Fitness/Question1223050.html

[Giggsie]

Hi Eve my brother is really struggling trying to get his rheumatoid under control some days he is really bad and next not. He struggles to live on his sick pay £71 a week wonder if he could apply for DLA could you help me find out?thanks Sorry to hear you are having it bad I too have it but mine controlled now 20g methotrexate also hydroxychloroquine and sulphasalazine mixture of the 3 seems to work for me.

[Eve]

Hi, I went to here and had a good read through - https://www.gov.uk/dla-disability-living-allowance-benefit/overview

Glad yours is under control :) I couldn't tolerate sulfasalazine, it just made me ill. They took me off hydroxychloroquine thinking it was causing blurred vision though it turns out it's arthritis related dry eye (ironic huh!), meiboiam gland disease and possible Sjogrens causing the blurring.

My hands do seem better though my consultant said they are still hot etc... though it's all kinds of other bits which are going a bit wrong!

I'm struggling working but it must be horrendous trying to scrape by on low sick pay, I really feel for him. Get him to go see his local CAB, see if they can help him in other ways too.

[Giggsie]

Thanks Eve he was in hospital twice with sulphasalazine did not agree with him at all still they tried it again. Yes I feel for him too as he has worked hard for the last 45 years. It is a horrid disease he has been off work a year now some days we can't even get him downstairs. Will try and get him to read that link thankyou. Hope you get sorted soon take care x

[Eve]

It took a while before they said I could come off it and switch to something different. I hope he gets it more under control soon, it really is a horrid disease.

I've been cracking on with my DLA form today, determined to get it sorted and in asap.

[PringlesQueen]

There are a few newer medicines on the market called TNF-a inhibitors: Adalimumab (Humira), etanercept (Enbrel), infliximab (Remicade), rituximab (MabThera), and abatacept (Orencia) are possibly one of the drugs that were mentioned by your rheumo nurse.
If it is one of these class of drugs they will need to be administered in a hospital setting. Your rheumo team will have a wealth of advice on these drugs.
There are many clinical trials including some of the above drugs. Without having a crystal ball it is diffficult to know what your treatment plan is going to be.
Good luck with the DLA form - hard going, but worth the effort!

[bednobs]

also meant to say that there is one of the drugs that you are not allowed to get pregnant on for 2 years after you stop taking it, so if that's a consideration for you, you need to know

[Peter Pedant]

try goggling 'self administer mtx' and you will see that it seems much simpler.

Keep on with the DLA form and be quig!
I have already had my PIP conversion letter.

and remember in filling out the form (keep a copy) it is what you do every day - and not what you could do on a good day with the wind behind you.

[NoMercy]

If your condition is not being well suppressed on monotherapy, they Will look at biologics and cytotoxics.

Enbrel, if well tolerated, can give good benefits.

Mtx can also work well with Sulfasalazine and Hydroxychloroquine.

Are you on any Prednisolone at present?

[Eve]

Thanks all, that is definitely the kind of question I need to ask bednobs, thanks. Much as I seem to be terminally single at the moment, I'd like to have a family. Similar with hoe they are administered, thanks PringlesQueen.

Thanks for that info Peter, will have a google. I'm ploughing through, just seems to be questions breeding questions! Getting a big shift on to get it in with the changes.

No pred at the moment No Mercy. Was tapered off the last lot not that long back after a horrible flare got me put on it. I've had steroid injections in both hips recently. IV Kenalog I think?

I can't tolerate sulfasalazine, makes me ill. Hydroxychloroquine was ok save them taking me off it for blurred vision though it was my arthritis/gland disease/possible Sjogrens causing the blurred vision. Not sure if they would put me back on though due to my eye problems.

Have to go back for bloods Monday as the ones they took Monday came up with raised potassium so my nurse called earlier ad got to have more bloods done, hoping it's not my kidneys playing up again as my kidney function had seemed to be improving. Fingers crossed it's a blip.