FED UP!! Can't tolerate any DMARD....Should I give them up??

[ellilu58]

I was put on HDC when first diagnosed - couldn't tolerate it - then tried Mex tabs - ill as anything - then Sulph - which I thought I was literally going to die from the side effects. I didn't even get upto the full dose. Never been so poorly in my life!! had a chat with rheumy nurse and decided to give Mex another go but with injections. Worked great for over a year, then rheumatologist increased the dose ( went up to 25mg) and I ended up with five chest infections in 8 months ( including pneumonia) so said NO to anymore Mex despite going right back down on reduced doses. They messed about with the dose for about a year before I finally said enough.

Another discussion with Rheumy and decided to give HDC 200mg another go. The first prescription was from the hospital pharmacy - Plaquenil - which were absolutely fine- no problems at all but after that, I had to get repeat scripts from my chemist. Tried brand name by Quinoric and just could not tolerate it. So they've given me HDC by Zentiva. Managed three weeks with no side effects but now again, side effects are horrible. Fatigue, nausea, diarrhoea - all the usual stuff. I spoke to hospital pharmacy who said that Plaquenil were no longer being manufactured.

I seem to be able to take the Zentiva brand for three days before the side effects hit me really hard so stop them for a week before I try again.

Don't know what to do for the best. I know that my rheumy is starting to despair of me. I just want to be able to tolerate a Dmard or else I'm just going to give up and let this damn disease take control.

Has anyone actually given up a Dmard and been okay?

[Amy_Lee]

Poor ellilu58,

I am very sorry to know your situation. This will be very tough, RA is no joke. I hope you can find something that your body can accept. I am not in any position to advise.

[Hidden]

I have been going through the same and have told my rheumatologist I need a break they have sent me an appointment now to go for psychic counciling to encourage me to take the medication never heard of anyone having to do this before so I will go next week to find out more hope you get things sorted soon

[ellilu58 in reply to Hidden]

No Junebee, I've never heard of that before either! Can you let me know how you get on? Thanks for replying xxx

[Hidden]

Hi there,

Im sorry to hear you are finding it difficult to find a treatment that works for you . Has your Rheumatologist talked about the biologic drugs yet as you maybe eligible as you have tried more than 2 dmards. Here is a link to an article on our website that may explain it better : nras.org.uk/getting-establi... .

[ellilu58 in reply to Hidden]

Thanks Alison. I saw my new rheumatologist two weeks ago and he mentioned biologics. My old Rheumy was not in the least bit interested in trying me on them and kept insisting that I continued with the mex. Even the fact that I got pneumonia wouldn't deter her away from it. Whenever I mentioned them, she always said that my DAS was 1 point below the radius for it. I'm not that much flared up at the moment but just feel dreadful from the HDC....Would he consider me having biologics now do you think? I'm in Bradford so not sure how keen they are on the use of them in this Trust but my friend was put on humira and she's got her old life back...even back teaching which is what I want to get back to. I'm really at my wits end now....very very low at the moment. xx

[Hidden in reply to ellilu58]

Here is a link to our website which explains the criteria you need to be put forward for a biologic: nras.org.uk/patients .

Unfortunately you may not fit the criteria unless you have a DAS score of over 5.1 on 2 separate occasions. Occasionally in special circumstances they may put you forward but this is rare.

[ellilu58 in reply to Hidden]

Thanks Alison. I've only been checked once and it was 5. NOT one whole point under! ( No brain today )

I'll give my rheumy nurse a call on Monday - see if I can get an appointment with her soon. Many thanks for all that x

[farm123]

I went through many DMARD's and could not tolerate them but have had many years of relief from biologics. Unfortunately you need to be able to fulfil some criteria for them to be able to prescribe them including failing 2 DMARD's and a high DAS score etc. Do you have access to a rheumy nurse as sometimes it can be easier to discuss how you go forward with them. There is more info on the NRAS website. Farm

[ellilu58 in reply to farm123]

Cheers farm. I have a BRILL rheumy nurse and she was always quite keen to get me on them but my rheumoltogist at the time - she's left now - never agreed. Will call her on Monday . Many thanks x

[PFKAAde]

Like farm I have been through every DMARD (apart from gold) and either had no effect or had an adverse reaction (sulfasalazine was worst) and felt like I was going to die too.

Eventually I went on to Rituximab which worked great, until I had an anaphylactic reaction so got put on Enbrel, which did nothing and finally (for now) just as we were running out of options got put on Humira which had given me my life back for the last 7 years.

As mentioned if you can't tolerate or have had no joy with MTX and (I think two others) then you tick that box for biologics, and I probably shouldn't say this but they could easily make your DAS score 1 point higher! Sounds like they are being a bit tight to me.

I know they're expensive, but if nothing else works then IMO you should at least be offered a bio to try.

Keep calling and telling them how bad you feel, those that shout loudest tend to get most with the NHS unfortunately.

Ade

[ellilu58 in reply to PFKAAde]

Thanks Ade. I've never been one to make a fuss but I've seriously had enough now will defo scream loud - I may even enjoy it especially if it works. My rheumy nurse knows that I'm BAD when I contact her because I do very rarely and just struggle on. Hope you're okay x

[Someonesmother]

I live in Australia we still have plaquenil here. I am not sure why you don;t have it in the UK though. I have tried every DMARD bar gold injections and can't take any of them except plaquenil. Have you not been offered biologics?

[ellilu58 in reply to Someonesmother]

Hiya..no, not been offered biologics I really was tolerating Plaquenil until they stopped dispensing it here in the UK. Crap, eh? xx

[Someonesmother in reply to ellilu58]

Maybe you need to ask for biologics then. I hope they don't stop making it here or I will be going off it too as all I have heard is bad things about the generic.

[ellilu58 in reply to Someonesmother]

You would never believe a generic drug could be soooo different, could you but it is! I did great with Plaquenil - didn't even know I was taking it! But within a week of the first generic one, Quinoric, was really ill. Stopped that and got issued with Zentiva brand and I can take it for three days before vile effects kick in and have to stop it again. The drugs seem to be worse than the damn disease!! Take care

[Someonesmother in reply to ellilu58]

I have the most terrible side effects from generic drugs. A pharmacist explained to me it is because they have different fillers and coatings. I go for the real thing every time. If I can;t have it then I won't take it. I am sick of being so sick from drugs. I have a long long history of adverse reactions. I have liver damage from an antibiotic so can never drink alcohol again and have to monitor my liver functions monthly

[ellilu58 in reply to Someonesmother]

Oh god, I'm sorry to hear about your liver damage. That's terrible ...I didn't even know an antibiotic could cause that effect and I used to be a nurse!

But I totally understand you being so sick of being sick of drugs. Totally! I'm very close to just giving up everything I'm taking because of all the side effects. And painkillers don't work either...even damn morphine patches didn't help but just make me really sick and wiped out.

The one thing that I am trying that I think IS starting to finally make some indentions into my pain relief is Tumeric and Black Pepper capsules. Have a go with them. They take a while to kick in..I've been taking them everyday for about three months and I think they are about to kick in.

Really hope they don't stop Planqunil in Australia..cos the others are just crap and like you say, full of crap.

Big healing hugs coming your way and try and stay strong. It's the only thing we Rheumatoid Warriors can do. 😘😘😘

[Someonesmother in reply to ellilu58]

I didn't know antibiotics could do that either until it happened. It was erythromycin. Who knew. I am on enbrel at the moment as well as plaquenil but I suspect enbrel stopped working in April, I see the rheumy next week so I guess I will try another biologic. You really need to explore that option as when they work they are amazing. I did at least feel less fatigued for a while on the enbrel while it worked and that is a big bonus working full time. It never really helped with pain but I could deal with that as long as I didn't feel so exhausted all the time.

[ellilu58 in reply to Someonesmother]

Erythromycin? God, that's such a well used AB too, isn't it? And yes, good that you will get to try another biologic. I haven't met another who's on them who isn't tons better. And they all tell me - get on them! To be honest, its when I'm in pain AND fatigued that I really struggle. I can just about cope with the pain 'mentally' when I'm not wiped out but not both. That's when I want out of this disease. My rheumy nurse is calling me on Friday - she's lovely - so I will really push for them now.

Let me know how you get on with your rheumy and hang on in there!

[Someonesmother in reply to ellilu58]

Yes I had had it probably 10 times before in my life as I very rarely if ever got sick, or even took paracetamol for a headache before then, so it was a shock to the body when that happened. I went down hill after I had a hysterectomy and got a massive infection from the hospital that took two months to clear. I have a penicillin allergy and had eryc as part of that treatment towards the end of that time and wham.

Do push for biologics it will make a difference and I pretty much had no side effects from the enbrel, although I am getting them now that it isn't working. Some people apparently take it for years with wonderful results. The rheumy nurse said I have probably developed anti antibodies to it. Damn my body! hahaha

[saskia15 in reply to Someonesmother]

oh my word at last someone else who has had a dreadful time with Antibiotics. I have a long list of them that I can't take and the Erythomycin is one of them. My Kidneys went berserk on these and they are supposed to be for kidney problems. I was sure that I would die and beg another doctor to stop them.

[Someonesmother in reply to saskia15]

Eryc is the one that destroyed my liver. Who knew it was so deadly to some people

[Fruitandnutcase in reply to Someonesmother]

I take plaquenil and have just ordered a repeat prescription so it will be interesting to see what happens - I'll try and remember to ask the pharmacist what is happening with Quinoric when I collect my prescription.

[ellilu58 in reply to Fruitandnutcase]

My pharmacist was really helpful in regards to the Quinoric and she actually got into two different brands so have a talk with them and see what they say. Good luck! xx

[oldtimer]

I'm now on azothiaprine - an old fashioned DMARD - after failing on all the others through unacceptable side effects or allergies. This seem to be suiting me very well, apart from occasional flares (and the gut side effects which are tolerable).

I, too, came in often just under the criteria for biologics. This, coupled with my age, makes them an unlikely solution for me, although my sister, who also has RD, is much improved on a biologic (the criteria being different in France).

[ellilu58 in reply to oldtimer]

Thanks for that oldtimer.....I'll mention that one to my Rheumy nurse. Glad that you're okay with it x

[Chrissycl]

Yes I tried Leflunomide and Mtx and had bad side effects with both. Was then put on the biological drug enbrel and have been on it ever since. No side effects and the injections are simple to do. It works very well for me with no problems.

[Sheila_G]

Has your rheumatologist mentioned taking a biologic. It sounds like that should be your next move. As for giving up, don't do that. It would be great if we could deal with this disease without drugs but I am afraid it is stronger than we are. Good luck x

[ellilu58]

Okay.....so seen my rheumy nurse and the poor girl got a ''very emotional, at the end of her tether'' me! She initially suggested that I only take HDC three times a week but I've told her empathically I am NOT taking anymore DMARDS. Tried three unsuccessfully over the past four years - on various doses - and had enough.

So, she's phoning my GP now to arrange a Depo injection for asap and wants me to start on anti depressants. ( No clinic at the hospital till the end of the month to let me have the injection there and then!) Says to stop DMARDS and then, in a few weeks, have ultrasounds done on my hands and feet with a view to 'maybe' starting biologics. But I'm not hopeful... Even tho my DAS score is 28....I just think Bradford Trust won't let a 57 year old RA sufferer have it...

I'm totally flared up now - have been the past week but been worst past three days....think I've just cried myself into exhaustion....