MCTD Newbie - any advice about Methotrexate / PIP / PaH appreciated :-)

Hello - Newbie here!

I have a recent diagnosis of mctd, with muscle inflammation, severe raynauds and hand stiffness, pulmonary hypertention and palpitations, and have been quite ill recently... with a ten day stay in hopsital for severe odema.

I had a follow up with my consultant today and have finally been told i'm well enough to start taking the Methotrexate, which i'm nervous but happy about.

I've been told it will take about 3-4 months to really work, and that I probably won't get back to work until at least August or September.

I'm also still on a high dose of steroids - 40mg daily.

So, my questions for you lovely people are:

Anyone else out there with mctd? I would love to hear from you!

How has anyone else got on with Methotrexate? I'm aware of some of the issues and don't want to pre-empt them, but i am a little nervous.

Steroids - Same really - i see to be okay on them, but am a little worried about long term usage although i'm told this will be reduced in time.

I'm now on SSP at work - this is not much money!! Has anyone managed to claim PIP sucessfully or am i kidding myself??

Does anyone else have PAH or Heart failure?? I have an appt at Papworth on Friday but i feel anxious about long term heart medications....

Thanks in advance!

14 Replies

  • I got PIP anyway .....🌈

  • Hi Lupiknits - is this because you are off long term sick, or to help with living / mobility needs?

    Good to know that it can be done!

  • My PIP is for help with extra costs of living and mobility. I took early medical retirement from my job and have a pension from that. For PIP, I found a Welfare Rights Officer from my council extremely helpful. She came and filled in the form for me ( knowing how the system works) and then checked to see what other benefits I might have been eligible for. I'd suggest you try your council in this way - PIP is a very stressful process I'm afraid.

  • Thanks for the tip - not sure if my council has anything as helpful as that, but i will investigate.

  • If they don't then it may be worth going to your local Citizens Advice Bureau as they often have someone who can do this.

  • Hi runalong

    Sorry to read how poorly you've been but glad your getting good help and will be starting Methotrexate soon!. It's a good drug specially for the arthritis. I expect you've had explained about routine blood checks fortnightly when started and then monthly if all ok. Hope they've said about folic acid too!. It will help you reduce the steroids because 40 mg is a high dose that you can't stay on. Hope you have a good plan for reduction when the Metho starts to work!. Must do it slowly for your bodies sake!.

    It certainly is possible to get PIP with your health conditions. I'd suggest you go to a Citizens Advice drop in session or ring them and they'll tell you whether you could claim or not. They will also run a benefits check to see what other help you might be able to get as your on Ssp. They will help you claim as they know how best the forms need to be filled in for maximum chance of success!.

    Hope that's helpful and good luck with your new treatment, do hope it works, keep us posted. X

  • Thanks Misty14. I have got regular blood tests booked for the next few weeks and also have my folic acid ready to take on Friday! I don't actually have arthritis (one of the few things i haven't got lol!) but i hope it starts to address some of my other issues, which i think the steroids have been masking but not treating.

    CAB is a good idea - I will phone them this afternoon and see what they say. It's a bit of a shock to suddenly lose more than half your income and I would be stuffed if I didn't have a husband with a wage coming in. I'm quite good at form filling, but the DWP are notoriously tricky.

    Thanks for your help - much appreciated.

  • Good luck runalong with the CAB and starting methotrexate. Hope both will help you. Keep us posted. X

  • There's a site called Benefits and Work.

    This site helped me complete my PIP and I received enhanced Mobility and Care.

    It also has a wealth of advice on all the benefits and changes

  • If you are a member of the charity Lupus UK you can access the benefits and work guides ...

    For PIP it's about what help you "need" (even if you don't actually have any help) They will "score you points" for what help you need to assess if you are entitled ... This is a link to how the points are scored

    They are strict on how they asses you (I couldn't get PIP even though I do get some ESA as I was medically retired and don't work, I think for me I don't fit PIP criteria because I can do things and look after myself, as long as I pace myself well ) Things like pain fatigue and wether you can do things "reliably and repeatedly" should all be taken into account in the assessment, so make sure you highlight that side of things. Also I've found council welfare rights much more use than Citizens advise when doing any benefits stuff.

  • Oo thanks Dawn - all help appreciated here!

  • Thanks fabwheelie as well - don't quite know why everything has to be so complicated but i will definitely look into the Council help side of things... I didn't know this was offered but that's two people who have mentioned it now.

  • I've started methotrexate a couple of months ago. I was quite wary of starting it because of the side affects. I have been really lucky and not really had any. I got a sore throat just after taking it, but that was going round anyway. I also have bad mouth ulcers, but I get them anyway so not if it's the methotrexate or just the lupus. I take folic acid 3 times a week, but it can be increased to 6.

    I'm only on 5mg of steroids but want to come off them so hopefully once the methotrexate kicks in I can lower the dose.

    I know a few people have said that they are alright the day after they have taken the methotrexate but the following day they wiped out, for this reason they take theirs on a Thursday to give them the weekend to recover. I take mine on a Sunday so I can enjoy the weekend with my children.

  • Hi Nikki,

    Thanks for your reply - i've now taken two doses and have noticed a couple of little mouth ulcers come and and go but that's all so far.

    I've also heard that people time their doses according to their own week - I would hate to lose the weekend as i've got 2 teenagers! Something else to think about.

    Really appreciate your input - I hope you start feeling better soon xx

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