Help for hubby!!

Hi all

Been a while since I've been on here, last time was when hubby was newly diagnosed with RA and fibromyalgia.

Well we've had one major change...we'll two actually...1st was change of consultant (who diagnosed fibro without doing any basic tests!) and the 2nd was the new consultant who did basic tests and ruled out fibro!!

Anyway...hubby is still in immense pain. Joints, bones, muscles, migraines. The lot. He looks grey with the pain. He is suffering terribly and his mental health is on a downwards slope.

He feels the meth isn't working and the gp he saw today believes he may have to go to hospital weekly for meth administered via a drip (or something like that!)

I've been reading up on here and see lots of you have the injections. Do you administer them yourselves? And is that intravenously or intramuscular?

How much of an improvement did you see when you switched?

I'm trying to search for a bit of light to give him as he believes this is it now. That this is life with RA.

I keep telling him there's lots of other drugs out there but he's on a massive downer.

He's around a year post diagnosis with no improvement.

Any help or advice is appreciated.

11 Replies

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  • I've always used subcutaneous MTX injections. It's an easy shot that I give myself. I use a prefilled syringe but I believe there are also auto click pens. Super easy to use and the nurse will show him how to do it.

    Does he not see a Rheumatologist? Just a GP? Has his doctor adjusted the dose?

    There are many different medications that he can try and quite frankly if he is not feeling better after a year and hasn't been offered to try another DMARD along side MTX then perhaps it's time he asks to see a Rheumatologist.

    You can go with him and ask the doctor what his goals are for your husband and how he plans to reach those goals. If those goals don't match yours then find someone else.

    Does your husband take prednisone? I only ask because for some people it can really bring on mood swings.

    Mental health is really important to look after with a chronic illness. Perhaps you can suggest he find someone to speak with as they may be able to give him helpful coping tools. I'm sure there are also groups he can attend and meet others for support or he call the hotline for help.

    I wish you the best.

  • Hi Lucy

    Yes he's under a Rheumatologist although he's only seen her once which was the last time she ruled out the fibro and he hasn't been given a follow up appointment with her.

    He is on prednisone but also, I'm not sure if the causes additional issues with the RA, but he's had a chest infection for about 3 or 4 weeks now. He was given antibiotics which didn't help and he's now been given different/stronger ones.

    According to the gp he is on the highest dose of MTX although I beg to differ having read some posts on here. I don't know what mg of tablets he takes but he takes 7 weekly.

    He was given a steroids 'plan' last time he saw the rheumy nurse who started him on a low dose and increased gradually to a peak and then gradually reduced it again. And of course once he decreased and came off of them he complained of immense pain returning.

  • Hi I'm on the metro jet pens and there really easy to use but before that I was on the tablet form and just couldn't take them as I was sick all the time, but we are all different some can take it and some can't and that's why this disease is so complicated it's a merry go round until you get the right combination that works for your husband xxx

  • Hi

    I'm sorry you're hubby is still suffering so much. This is a miserable condition when it's not controlled. I may have misread something here, but it seems to me your rheumy is not being pro active in searching for the right drug combo to help get things under control quickly.Has an increase in mtx been suggested? I started with 2 weeks on 15 mg of mtx so 6 tablets then up to 25, so 10 tablets. 7 tablets seems low to me if it's not working. We added in leflunomide a few weeks later and within 8 months and that combo not working, we added in a biologic. There is light at the end of the tunnel, but it can take quite an effort to reach it and you need your rheumy team working with you.

    Did you get a phone contact for your rheumy nurse? If so, I would contact them and have a chat about the future......your H needs to know there is a definate plan in place to work towards getting things under control.

  • This is extremely poor treatment! He shouldn't get down but get angry that the consultants haven't looked after him properly. And start to push hard to be monitored better.

    Many GPs know little about RA and the drugs, so you really do need to get proper attention from a rheumatologist. If it's 7 small yellow tablets then that's only 17.5mg, which is not the top dose unless your OH is very frail or has other health problems. And yes my hospital does have a weekly injection clinic for those who can't do it at home, but generally it's self administered - and very easy! They are only sub-cutaneous injections.

    But if he really has had no improvement on MTX then not sure changing to injections will be enough. Have his blood test results shown improvement?

    It's also not good practice to rely on prednisalone long term unless everything else has been tried and it's the only option. And as others have said it can affect mood.

    There are loads of other drugs. And for the vast majority of people life with RA can be ok. It took me a year to find the right mix of drugs, and I am on three different ones now but it works. I'm generally in remission and live a reasonably normal life.

    Reading your story makes me angry that you've had such a poor treatment. I want to stomp into your hospital and shout at your useless consultant! Although I have learnt that getting angry doesn't help - what worked for me is being politely assertive and not giving up. Please tell your OH that this is NOT what it should be like....and get him to push his GP, nurse and consultant harder.

  • So agree with all you say HH.......with RA we just have to be proactive. On the whole I think rehumatologists are so overworked that unless the patient appears to want to take on board all that is available & try not to be too reliant on Prednisolone , medics just " go with the flow" & continue to prescribe it as for most people it does mask the pain.

  • I'm sorry to hear that your hubby is still so poorly. What medications is he currently taking?

  • Hi there.

    As helixhelix says, if Methotrexate isn't working then injections are unlikely to make any difference. The usual reason for switching to the injectable form is to avoid the side effect of nausea.

    Sounds as if you weren't quite sure what the GP was getting at, so it could be he was thinking that your husband may have to go on biologic drugs, some of which are administered by infusion at a hospital. But usually people start on Humira or Enbrel or one of the other biologics that are self-injected.

    Without so much as a glimpse of light at the end of the tunnel, living with the disease is likely to be very depressing. A skilful rheumy who is on the case can provide that ray of hope and he doesn't even have that. Thank heavens he's got you!

    Even now, years after diagnosis, I feel a sense of disbelief when rheumatology services let me down badly and when they let others down. Something ingrained in me says 'I am being looked after, I just don't appreciate it'. But the truth is the service is very over-stretched and occasionally there's incompetence or disinterest too. Your husband needs a treatment review ASAP. In his shoes I'd ask the GP to arrange an appointment / make an appointment myself, whichever applies. Then I'd document exactly what has been going on, length of time on Mtx, symptoms, exactly how the symptoms effect his ability to do things, the mental health issues, everything. And then get it down to a concise and clear list.

    helixhelix has already summed up the approach that works best in this struggle, 'politely assertive and not giving up'. That approach does seem to be the best way to access decent treatment within an overstretched service.

    There are drugs which can make a huge difference. Things could really turn around for your husband, but it may well take a bit of work and persistence.

  • You lot are all bloody amazing! You've all confirmed what I was thinking!

    My gut told me this isn't right but every time u try and drum that into my OH he tells me 'the Drs know best!' Or words to tht effect.

    He doesn't suffer nausea with MTX his body has coped ok in that respect.

    He called for a follow up appointment and was initially told the next appointment was in October!!! But he pushed and managed to get one in May so that's good at least.

    I'll never give up on him...as difficult as he is at times!

    Just checked his mess and he is on 7 x 2.5mg weekly so 17.5mg

    The battle continues! 👊🏻💪🏻

  • Hi michb90~I think you're pretty amazing yourself!! I would like to add that until I was diagnosed with this RA 9 years ago that I too thought the Drs. knew best. Some do but sadly many don't. I've done a lot of my own research out of necessity and have 'suggested' to my Drs different options that are now working pretty well (still not in remission though). I'm on Orencia infusions once a month given at the Drs office. Although prednisone did help me tremendously at times, I gained 50 lbs and am having a really hard time taking it off. Even being totally off the pred for 8 months now. There have been many days that I really want to go back on it (when I feel dreadful) but I'm told I'm better off if I can stay off of it. This disease is so unpredictable and everyone is different, so I think being well informed of all options and finding what works is exhausting but important. Your OH is most fortunate to have you and I hope he appreciates that!!

  • Hi so sorry to hear about your husband it's an absolute horrible illness really gets you down. Query sulfaszine and hydrochloroquine I personally think they are good mixture and starting to work for me. Wish you both the best

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