Methotrexate injections

[sash1985]

Hi, I'm new to this site and was hoping that I could get some feed back about methotrexate injections vs oral methotrexate. I was diagnosed last April, I took leflunomide for a month but discontinued due to side effects and then started methotrexate in June with hydroxychloriquine and sulfasalazine added shortly after. Last week my hospital confirmed that I had met their criteria to officially prove that I have failed to respond to treatment and that I should now be put forward for the biologics. The problem is that my inflammatory markers are normal so I don't meet the criteria for the biologics. However I have been taking prednisolone daily since April, prior to this my esr was 30 and the pain in my hands, feet, knees and shoulders was such that I was struggling with daily activities. The hospital first suggested that I stop prednisolone completely, which I did yesterday and have already noticed an increase in pain, and wait for my inflammatory markers to increase or they're offering me methotrexate injections. Has anyone failed to respond to oral methotrexate but had improvements with the injections? Also on a separate note has anyone else been refused treatment and successfully appealed the decision? My consultant took my case to a hospital panel meeting but they have upheld the decision not to try me on biologics. I'd be really grateful for any feedback as I don't know anyone else with this condition to ask. Thanks

[JuneRose]

I can't take MTX had dreadful side effects how dare these NHS play with our lives I sticking with Leflunomide and waiting to hear if I've been accepted for the BIp trial at Guy hospital London. Because I failed on the tablets my Rhumey didn't want to try injections good luck I hope you find some relief. X

[farjer121]

Hi there and welcome!

Biologicals can be trial and error as there are three (?) sorts... Humira, Golimunab and another (these are trade names).

I lasted a little over a year on Humira before it slowly stopped working and now on Golimunab which is so slow to work... But that's just me.

Been a long term Pred user on 20mgs daily... So took the decision myself to try and come off as long term use is Not good.

I know it's not a ideal but perhaps it's time to come off the Pred (short term), let your markers go up and qualify for the Biologicals?

Really do hope you find a compromise or the Health Panel over turn their decision.

Kind regards,

Farjer

[helixhelix]

How stressful for you! i changed from oral to injectable MTX to deal with side effects (which it did), but I did also if find that it was more effective as use a lower dose now than I did on tablets and with better effect.

I do find it so awful that we are supposed to live for weeks and weeks in severe pain just to prove that we need biologics, but I have heard several times of that being necessary to win the funding decision. Can't advise on appeals, but have you phoned the NRAS helpline? They usually have useful experience and advice. Polly

(Oh, and I do hope that you have tapered off pred and not gone from high dose to nothing in one go?)

[denvajade in reply to helixhelix]

hi there just wondering what side effects you had on the tablets please! cheers

[Rosie_rabbit]

I was just about to say what Polly added at the end about coming off preds slowly. I'm sure your hospital will have given you the correct advice but if you've been on them that long it will probably take a while to taper the dose down. If you don't come off slowly you can get a rebound effect and it may make your symptoms even worse.

It is such a horrible position to be in and I really feel for you. I know there was a thread on here a week or so ago with someone starting mtx injections and they reported a dramatic improvement, perhaps you could try and find it and pm them.

Good luck and let us know how you get on if you can appeal. Nras helpline is a great idea to help with advice on that. Rx

[Hidden]

Hi - just to reiterate what others have said re symptoms almost invariably returning in the form of a flare when you wean off steroids. However hopefully it will be shortlived.

Although I'm off it now I was switched to Methotrexate by injection and found it made a big difference to my RA. The consultant explained that 15mg injection was the equivalent in effectiveness to 25mg oral MTX. I do hope it works well for you.

Incidentally, although it has come right down just now, I had a high ESR for ages but because I don't show much swelling and only my feet and ankles were painful I didn't fit the criteria for Biologics either. He said that anti-tnfs would be the next step if I were to get more widespread joint inflammation again. Hoping very much that I won't of course but it sounds like you need them much more than I do. It seems so wrong to assess you by blood results in this way. Tilda x

[julie_warwick]

just to say it makes me angry that we have to make ourselves worse to qualify for the drugs we need, I have a friend who has crohns disease and is now living a normal life taking humira aand has been told that he will no longer get funding for it as he has no inflammation so will have to stop it to become ill enough to qualify !!! madness !!

[sash1985 in reply to julie_warwick]

Hi Julie. My consultant said to me when I was diagnosed that if I responded well to a treatment and my symptoms disappeared for a year that I could then come off treatment to see if it had gone into remission but I would have thought if the symptoms came back I would automatically be put back on whatever was working. I'll check with my nurse but from your friends experiences it sounds like if we respond to treatment it gets taken away as we stop meeting the criteria which I agree seems like madness. I'll let you know what my Trust says but that's a horrible situation for your friend to be in.

[julie_warwick in reply to sash1985]

I agree , not that far down the line myself yet , been on mtx for a while , not working as yet. fingers crossed we all get the help we need x

[Judetheobscure]

Oral MTX didn't work at all for me but MTX by injection made a significant difference. The only side effects I had - slight hair loss (which grew back when I stopped taking it) and occasionally a suggestion of nausea which passed almost as soon as I had noticed it. Side effects or lack of them vary from person to person. Hopefully it will help you. To meet NICE requirements a biologic should initially be used in conjunction with MTX so it's a step in the right direction. Don't worry if MTX is not for you, you will still be allowed a biologic once it's 'proven' you need it.. Agree it's hard being put through the extra pain and exhaustion just to meet the criteria. Best wishes Jude

[sash1985]

Thanks to everyone who has responded its been really insightful. I have stopped pred completely because I only have a small window to manage the potential pain this will cause because I'm a final year nursing student and I have all of my deadlines in May and my final placement after this, otherwise I would have reduced it slowly. Surprisingly the pain isn't as bad as it was when I dropped the dose too quickly in the past but then this is only the 3rd day I've been off them, swollen fingers crossed it doesn't get too bad as I still have a month left in my current placement. If not its good to know methotrexate injections have worked for some who have not responded to oral doses.

[emmajj1971]

I was on mtx oral and for 8 months i felt wonderful, then i had the worse flare up in year so i have gone onto injections and after 2 weeks i am feeling better so i would say it is worth trying. Xx

[Titchyj]

Hi Sash1985, I wanted to stop taking prednisolone in December, only taking 5 mg per day, but consultant sent me for a blood text first in order to find out if the adrenal glands were producing their own steroid, the result was that they weren't and that my steroids had to be increased to 7.5mg. If you have stopped them without tapering them off slowly or you are not producing enough of your own steroids this could be very serious for your health.

I would seriously get your GPs help with coming off these the correct way, they are not a drug to go messing around with. Hope all goes well with your Nursing exams in May.

Jan

[sash1985 in reply to Titchyj]

The hospital consultant and my nurse suggested coming off them completely and nothing was mentioned about my adrenal glands, my nurse said after that I could take it down slowly but only because she thought it wasn't fair for me to come off them completely because of the potential pain, she didn't say there might be other risks. Do you know what blood test measures the adrenal gland I've had loads of tests done recently, maybe they've already considered it but not mentioned it? I have a telephone appointment with my GP today so that's a really good question to ask, thanks.

[Tessthomy]

I am finding injectables are generally better than oral but still get episodes of nausea but I don't think as much as when on the pills x

[Titchyj]

Hi Sash1985, the blood test I had was called a synacthen, you can read more about the adrenal glands and this test here endocrinology.org/policy/do.... Hope this helps in some way. It involved have bloods taken, then an injection of a substance to stimulate the adrenal glands and then waiting 30 min and having another blood test.

Jan