Mtx injections & Plaquenil

Scarlet

Hello everyone, hope you're all well.

It's been a very very long time since I posted on the forum, but I'm here in search of advice!
I was diagnosed with RA nine years ago at the age of 20. I was subsequently put on methotrexate which was great, it made a massive diference (i.e. I could actually walk again!!) and I tolerated the drug really well. For the past few years I have been taking 20mg weekly in tablet form, and although I'm not pain free, it has made a significant difference and I've had no reason to complain.

However since Feb/March I have been experiencing a really bad flare-up, affecting my right wrist and both knees and hips. My joints have been incredibly swollen, stiff and painful. It left me exhausted, and I wasn't sleeping well at all as I was waking every half hour in pain. It seems to have improved over the last fortnight, but things aren't back to 'normal'.
I had a long overdue appointment with my consultant today and he has suggested switching from tablets to injection for my mtx, and starting me on Plaquenil (hydroxychloroquine) alongside my mtx. I'm also going to have a second steroid injection in my wrist, having had the first one in May last year.

I think this is a great plan. I normally just accept that I'm always going to be in some sort of pain, but my consultant is really keen to 'attack' the RA as best we can, so my health is the best it can be, to try and limit joint damage, seeing as I am young (ish!) and will have this disease for a long time to come.
I'm just looking to reach out and hear everyones experiences of injecting, and taking mtx and plaquenil together. If anyone has any thoughts it'd be really appreciated. Thanks in advance :-)

dibdab

Hi Scarlet,

I've had RA for around 6 years, started on plaquinel, then added in sulfasalazine, I'm now also injecting meth at a low dose. For me switching to injected meth was a real step forward both in terms of less side effects and how well I responded-the rheumy nurse explained that you absorb it more effectively when it's injected. I've done some reading around combined therapies, and there's a body of research which suggests strongly that combined therapies are more effective, or at least as effective, as some of the more aggressive therapies available.

I guess what ever we can do to control our disease effectively gives us a better long term outlook, and for me at least it helps.

As far as self injecting- it's fine, they train you for several weeks and won't set you free to do it alone until you feel confident. The modern needles are really fine and sharp and it isn't painful, certainly less than the regular blood tests we need.

Hope you get some relief from the new meds.

Deb x

stickywicket

It does sound like a good plan and it also sounds good that you have such a positive attitude, scarlet. That should help too.

I've never done injected meth but, from what I've read on here, it appears you 'get more for your money' in that the same dosage packs a bigger punch than oral meth. I have, however, been on hydroxy all the time I've been on meth (about 15 years). They're often prescribed together. I've never had any problems with it.

I do hope the combination works well for you. Good luck

dreamdaisy

I'm on injected meth but don't bother too often with an anti-inflammatory because pain is pain is pain and nothing eases it. I understand that the meth, humira and sulph are controlling my PsA (my bloods are lovely) but I don't feel any real physical benefit due to my OA (caused by joint damage). We're all different and you won't know until you try. I wish you well and please let us know how you get on with it. DD

Scarlet

Thank you all for your speedy replies.

Deb - I've heard the term 'combined therapies' and never really realised what it was. It's encouraging that your findings suggest this option is so effective. I might look into it a bit more myself.
When I saw the consultant we discussed so many different things but I forgot to ask about the injection side of things. I've known for a long time that injections are more effective than tablets so I was really pleased he suggested switching. Can you tell me more about the injections themselves? Do they come 'ready loaded' if that makes sense? And where do you inject?

Stickywicket - thank you, I think after nine years I have gone through the denial and the 'why me' stages and now I'm just doing everything I can to not let this disease get the better of me! So yes I think having a positive attitude (most of the time!) is the way forward.

DD - your messages always make me smile, thank you :-) you may or may not remember giving me a well-deserved ticking off a couple of years ago when I was a bit naughty about taking my mtx and having my bloods done :? safe to say things are very different now! I hope you are keeping well
Scarlet

toady

Scarlet wrote:

Can you tell me more about the injections themselves? Do they come 'ready loaded' if that makes sense? And where do you inject?

Just to butt in slightly, as I was passing.. the injections I have (currently 'metoject') are prefilled and with needle attached, you inject in thigh or stomach - the syringes can be 'self-plunge' as mine are, or there is an automatic pen thing that some have, not sure if that is down to area which you get offered. Good luck with the subcut & the new combination.

Scarlet

Thank you toady, and you're not butting in at all, I welcome advice from everyone :-)
Been taking the plaquenil for 4 days now and no side effects yet, so far so good, I take my mtx tonight (i'm still on tablets while I wait for them to sort out the injections) so hopefully all will be fine tomorrow :-)

dreamdaisy

Ah yes, Miss Scarlet, I do remember the ticking off and hope you are now better behaved. It sounds as though you are and that is a good thing.

Meth does not sort the problem, rather it slows the development of the problem. All forms of arthritis are progressive and degenerative but the rate of those two things is as individual as us. It's not uncommon for further meds to be added to strengthen the reduction of the immune system, like many on here I am on a triple therapy which is helping my PsA but not the OA - once can't have everything! DD

Boomer13

Hi Scarlet;
I have PsA and take triple DMARDS, which include meth and hydroxy. I've never had any side-effects to hydroxy and been on it and meth for 1.5 years. I switched from oral meth to injectable this past January because I am being prepped for a switch onto a biologic and meth. Anyway, I receive about tem minutes of instruction in giving myself injections and was sent off after giving myself the first one at the rheum clinic.

It's been fine, other than some squeamishness at doing the injection myself :shock:. I had my dose upped recently to a full 1cc(25mg) and was squeamish again :roll: I can't inject under the skin on my tummy, that hurts! But under the skin on my thigh is fine and I don't even feel it. I was getting a bruise every time but slowing the speed I was pushing the med in has fixed that. It's really not that hard, a lot of my problems with it were in my brain. It's not painful at all.

Best wishes, Anna

PS. Bonus: the side-effects are less with injectable

fortuna

Hello Scarlet,
I will be following your updates as today my consultant wants to add Plaquenil to my MTX tablets. First though I have to see if my eye consultant agrees. (I have had type 1 Diabetes for 30 odd years and have had to have Lazer treatment for damage to the retina.)
She also upped my Folic Acid to one every day except the MTX day because of thinning hair.
I do hope the changes will suit you and help with the pain and make the future a happier place.
Good luck
aFortun

Scarlet

Thank you Fortuna, it will be interesting to see how we both get on :-) I've been taking the plaquenil for a week now and so far so good! Do you think the plaquenil has caused your thinning hair? My doctor did warn me that was a side effect, I have very thick wavy hair and so far haven't noticed anything different. I didn't realise that folic acid would help with that, so that's good to know.

Thank you Anna, it makes me feel much better hearing from other people who are injecting. I will remember that tip about injecting slowly. I used to be a student veterinary nurse so I have given lots of injections before, but I think injecting yourself is a whole different thing!

tenbury

Hello, I am very interested in this topic as I am on 15mg of injected meth each week plus plaquenil , I also take one folic acid tablet the day after my injection, my rheumatoid pain is so much better now and I am quite used to self injecting now even though it does hurt a bit so I am going to do it slower now and maybe that will be better for me( I am a bit soft though ) now my hair has gone thinner but I just use a volume mouse and that helps, maybe I should take two folic tabs a week instead of just the one, I was told that the folic acid are given to soak up any of the meths left in your system the day after the injection.....good luck Scarlet you will be fine.

dreamdaisy

Hello Tenbury, I was told that the FA was to help the body cope better with any side-effects. It's an odd thing, isn't it? It's taken by women before conception to help their bodies get ready for pregnancy and taken by us to help our bodies cope with a poison. It can be taken for six days per week if necessary but that has to be discussed with your rheumatologist. DD

tenbury

Hello DD, I have an appointment at the GP's next Friday I don't know why they just said it's to check up on my RA, so I will ask about upping my F A, I go up to Wrightington Hospital for bloods and I asked at the pharmacy there what the FA is for so it was them that told me it was to mop the poison floating about the day after injecting the meth' so I'm really not sure, my hair isn't to thin it just seems to have no body anymore so I don't know wether to bother, I seem to take so many meds I forget half of them

dreamdaisy

Ah, I know that feeling, it is so easy to forget what we take and why. My GPs ignore my auto-immune arthritis and my rheumatologist ignores my OA - alas I cannot ignore either of them. Never be scared to ask questions, OK?

it's worth remembering that hair is, essentially, dead material so I doff my cap to the shampoo manufacturers who persuade us that their products will bring the 'dead' back to 'life'. Nah, not in my book. DD

tenbury

Just deciding if I should just cancell my GPs appointment because I am under the hospital so why would the G P want to see me re my R A, maybe to reduce my meds, mmm .

dreamdaisy

I would advise against that, Tenbury, it would be interesting to see what he wants and you may be able to broaden his knowledge in some way. DD

stickywicket

tenbury wrote:

Just deciding if I should just cancell my GPs appointment because I am under the hospital so why would the G P want to see me re my R A, maybe to reduce my meds, mmm .

Maybe I'm just an inveterate optimist but I doubt that. They are supposed to review all the meds they prescribe, such as NSAIDS and pain relief, regularly. They can't alter the DMARDS or biologics.

In fact, my own GP sent for me some months ago 'for my annual rheumatology appointment'. I queried this, like you, because I see my rheumatologist regularly and have no problems. He explained that some GPs were now being encouraged to monitor their rheumatoid patient's progress and this would be a regular, though not frequent, thing. he noted that I'd had my RA for over 50 years, had had chemo and therefore an early menopause plus steroid jabs and pills occasionally so he sent me for a DXA scan which revealed I had osteoporosis. But for the impromptu check, I wouldn't have known. It's a plus as far as I'm concerned.

Scarlet

Hello tenbury, nice to hear from you. I take my mtx on a monday and my folic acid on a thursday, as instructed by my rheumatology nurse. I was told that folic acid will minimise side effects. Not sure about the 'mopping up the poison' theory, sounds like a bit of rubbish to me!

I've been taking the plaquenil for over two weeks now, and in the last week I have been suffering a bit of nausea, its very intermittent, and I've had a few headaches and dizzy feelings which is very unusual for me. I'm munching on ginger nut biscuits to help with the nausea (no idea whether that's just a myth but hey any excuse) and I have an appointment with the rheumy nurse in a couple of weeks so will discuss progress with her then.

Hope you're all keeping well :-)

fortuna

Hi Scarlet,
My FA is going up to one tablet daily for five days a week. The consultant said it would help with the hair thinning. I haven't been given the OK or the Plaquenil yet as she hasn't heard back from the Eye specialist yet.
Will get back to you when and if.....
Cheers
Fortuna

fortuna

Hi Scarlet,
I am still waiting to start Plaquenil as communications between 2 consultants do not happen speedily. But they have agreed that I should have it prescribed by my GP. So now have to wait for the letter saying that "I should make a non urgent appointment."
Hope you are doing OK
Fortuna

tenbury

hello again, well I did keep my appointment with the gp and he sent me for a DEXA scan, so glad I went now as I have O.A as well as my R A, nothing much they can do but at least I know.
I would like to ask if anyone suffers from swollen feet though as I have been troubled with them for about a month now, we went to Spain approx 4/ 5 weeks ago and it kicked of then, not sure if it was the flight or the heat.

stickywicket

My feet always swell on long haul flights but not short ones. Heat can cause it but so can other things including RA. Elevate them as much as possible but, if it doesn't improve let your doc check it out.

Scarlet

Hello everyone, thought I'd give you all a quick update! I've been taking the hydroxy for some time now and have seen a real improvement in my RA (aside from my right wrist, but I have an appointment at long last for a steroid injection to hopefully sort it). I saw the rheum nurse and she is happy, so she has started organising my switch from mtx tablets to injections.

The injections and associated paraphernalia arrived this morning (they are metoject pens). I'm now waiting to hear from a nurse to come and show me how to use them! It's all been done through Alcura Health - is anyone familiar with them? When they phoned to arrange delivery it was all a bit confusing - they didn't realise this is my first time injecting so said they'd have to forward the paperwork on and a nurse would contact me. The hospital have arranged a 12 week supply and then after that I'm to go to my GP for a prescription. Just hoping there are no problems, my GP surgery is not known for sorting my prescriptions in a timely fashion. It looks like Alcura offer a Boots Pharmacy collection service so I'm just hoping there will be good communication between all parties!
It's all a bit bamboozling but I'm hoping all will become clear in time! How is everyone else? :-)