Advice

[Angie2212]

Hi Guys,

Im due to see my Rhuemy doctor (not my nurse) on 16th and as I said in my last post I have taken the decision to come off MTX due to 7 months of feeling really unwell and having no quality of life. Even although the drug worked for my RA it had an adverse effect on the rest of me. I have been off MTX for 2 weeks today, as suggested by my Rhuemy nurse, and my quality of life has massively improved so I know for sure im doing the right thing. Although I now have a bad flare on my left hand and that pain is something I dont want to suffer through my body ever again.

Im really anxious about starting new drugs incase the horrid side effects return. Can anyone help me with alternative drugs they have that work for the condition with little or no side effects? Big ask I know, but surely we shouldnt have to comprimise our quality of life to be pain free.

My life as a newly wed since being on MTX has been hell. Im even on anti depressants to help with low mood. Feeling sick every day, weight loss due to no appetite, locking myself away from people, lumpy skin and generally feeling bleugh from morning until night everyday is no life and I desperately want mine back.

Thank you all once more for your kind words and support.

[AgedCrone]

Angie...you are in a place most of us have been & I know you want a definitive answer as to which drugs work & which don't & the truth is that they all work!

But the only person who can decide which one is likely to work for you is your rheumatologist.

I sometimes gasp when I read people praising drugs that have made me very ill....but we all have a different health history....& that has to be considered when deciding which drug your rheumy will choose to prescribe.

RA is a nasty vicious disease & the decision to stop taking Dmards will have dire results......so calmly explain to your rheumy how you feel.....ask him to explain why he is prescribing a particular drug,& if you don't like the sound of it, ask if there is an alternative...but please don't abandon all treatment.

Not want you want to hear I know....but anyone here will tell you.....getting settled on a drug regime that suits you long term can be a wearying process.....I do hope in a month or two you are in a better place.

Good luck on 16th

[Deniseelk]

I have been there, too. I tried Methotrexate for 5 1/2 months but couldn’t tolerate the side effects. My Rheumatologist also agreed that it wasn’t holding the Arthritis either.

I was then approved for Benepali and self-inject ( pre filled subcutaneous injector pen) once a week. No side effects whatsoever. Have been on it 3 months.

Difficult to tell if it has particularly helped yet. My situation was a little more complex as they detected latent TB ( you have blood screening for underlying infections before you start Benepali) so had to take 3 months antibiotics to kill off the TB. Very strangely, 2 weeks into taking the TB antibiotics I started to improve ( inflammation swelling down, more energy, hot joints cooled, far less pain as inflammation gone, no longer seized joints on waking, etc).

However, I am so, so much better so something is working for me.

Your Rheumatologist will support you and you have demonstrated that you have tried the Methotrexate . You will need to undergo a DAS scoring and need to achieve 5.1 or over for funding approval. Do you have a clinical nurse you can call to discuss as mine said to come off the prednisolone as they needed to see me in my true state to score. Any change in meds must come with medical advice, of course!

There are lots more drug choices out there and it takes time to find the right mix for you. Don’t suffer any longer. All the best.

[allanah]

I just had a chat with my rheumy who just said yep, I'm going to be seeing you for many years, you're gonna be on these drugs for a while , so let's try another !

Getting a good relationship where you can just talk to your doc and say what's working for both of you is ideal!

I'm sure he will have an arsenal if other drugs to help but a positive is your RA shows it can be improved.

Best the rheumy gives you choices on which drugs he knows will help your particular RA and inflammation than getting guesses here.

You could go on the NRAS website to see alternative smarts so when he mentions them you have some idea of the names. But do ask him for o d that he has seen experience that appears to cause less nausea.

Good luck and congratulations on your marriage. Xx

[sylvi]

Angie darling suggest to your rheumy leflumacide(not sure of spelling) That might be better than MTX . I can't add anything else as i have never had any adverse reactions to any drugs.xxx

[medway-lady]

I know its hard but reality is no one stop medications works for everyone. I was taken off MTX put on Lefludmide and it changed my life but it may not be the same for you. I have allergies and so believe not to put too fine a point on it it's ' pot luck' dependant in part on severity and type etc. Look up NRAS guide about drugs and don't read the PIL or listen to too many scare stories. If 10% get side effects then 90 % don't so your odds are good at finally getting a medication that works well just for you.

[Nettac]

Drugs are funny old things. Watchwords for one can cause horrendous problems in another. I'm much better on methotrexate. Sulfasalazine was a living he'll, and leflunomide did nothing.

I'm sorry to say, it's just a matter of trying different drugs until one sticks. I hope you find the right drug soon. I know how you feel. I've had three years of misery and agony up until this point.

[Ruth12345]

Im on methx (hair very thin because of it ), sulphaselazine (made me very sick but thats got better after a while), started hydrxhloroquine 4 weeks ago, folic acid, dihydrocodien & paracetamol ( x2 x4 daily for pain ), omeprazole, losartin (for raised bp now), and not in remission as yet. Got RA 15 months ago. To be honest without listening to people on here I would have gone bonkers by now as I realise that its a time thing. So struggling as just on last 2 days of another 6 weeks of steroids, thats the only time I feel I can function properly when im on them. Im much much better than a year ago but still have some way to go. Im 60 tomorrow and totally fedup. This was not the way it was ment to be.

So Angie I feel for you. Im saying all this just so you know people understand. Your Rheumy will find something that helps its just the time it takes is hard.

Take care. 😊

[helixhelix]

As others have said, there's no way to tell in advance which drug will be best for you. There's research underway to try to identify markers that will indicate which drug to choose for a healthy person, but sadly the results are a long way off yet.

The only advice I can offer is to pay attention to looking after yourself as much as possible, to help your body cope and tolerate the drugs. You want your metabolism to be on top form!

[Kathies]

Hi Angie, feel for you. It's a trying process to find the right combination. 2 years for me originally, and the rheumy took me off mtx last year, after 6 years, due to overwhelming nausea and put me on leflunomide which is ok, my GP really dislikes it though. I have flare ups and feel less energetic than I did, but no mind numbing pain, which is excellent. Feeling down is a huge mental battle, I was on anti depressants early on, that helped with the pain as well, but came off them after 6 months, didn't want to rely on another drug. It's said a lot on here, but be kind to yourself and patient with the drugs, there are downs but there will be more ups than you think. My husband says, cos I just asked him, that he learned more about himself and in a good way, by having to understand that this disease was his disease too however unfairly and the only way to deal with it is with patience and more patience, endless good humour and really making the most of the better days.

Good luck with the rheumy x

[nomoreheels]

Hiya Angela. I'm sorry but I agree with others who've said that unfortunately there's no way of knowing beforehand. I was always quite proud (I know one shouldn't say that about oneself!) that I didn't respond negatively to meds but 2 out of 4 DMARDs I've tried have proven me wrong. MTX hasn't been one of them, I've been taking it 8 years, but I can't say the same for sulfasalazine or leflunomide. The thing is presently there's no knowing beforehand & now you've had one negative response it's going to be mighty hard to get past the initial side effects of your body getting used to a DMARD to find out they'll diminish & you're going to respond positively in the longer term. But you'll have to suck it & see I'm afraid. One thing that you can take as a positive is even though the side effects haven't been tolerable it has worked for you. I'd take some solace in that, it could well be that your next will also work with more tolerable or no side effects. Fingers crossed for you. x

[Neverending63]

Hi Angie. I am 2 1/2 years since diagnosis and still trying to find the right combo. I am allergic to 3 out of the 4 DMARDS and currently on Benepali 50mgs and hydroxychloroquinine. Still not sure it is the right combo as still don’t feel right. However I also have added complication of PMR and osteoarthritis. It takes time and you have to learn to be patient very early on. Eventually you will get there. Good luck.