Can you change meds ?? Is this a valid reason ?? - NRAS

NRAS
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Can you change meds ?? Is this a valid reason ??

cpr02
cpr02

Hi

Wondering if anyone has ever had to change medication before? And if you have been listened to ? Were you encouraged to persevere ?

I feel I have to change due to thinning hair ... its drastically thinned

Nausea stomach pain and bloating

Tiredness

I'm not sure all of its medication linked but some of it def is and I just don't feel its suiting me

Is this a valid reason? Or will I just be told to shut up and put up if its doing its job and I'm not in any pain !

Thanks x

22 Replies
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Which drug are you on, and how long have you been on it? Some side effects do diminish over time if you are lucky. If the side effects are really bothering you of course you should discuss with your rheumatologist.

cpr02
cpr02
in reply to Bunty62

I'm on methotrexate and have been on it since October but its like the side effects are getting worse! X

Bunty62
Bunty62
in reply to cpr02

I'd chat with your doc if you feel rubbish. For some folks the injection is better than the tablet.

Swimming20
Swimming20
in reply to cpr02

I have just been took of it 3wks ago because of shortage of breath but am in quite a lot of pain now

It’s a fine line between giving things enough time to settle, and being too stoic! Also between what are acceptable and unacceptable side effects. My personal rule of thumb was to grit my teeth for 3 months before throwing in the towel. As it happened my hair thinning with MTX, and my nausea and diarrhoea with Sulpha both calmed down after 3 months. But my rheumy was prepared to consider changes and I did move from MTX tablets to injections because of mouth ulcers..

But it’s your life, so it’s for you to say calmly and politely, but clearly, if you find the effects unacceptable and ask to try a different drug.

No you won’t be told to put up & shut up.

It will depend to a certain extent on how long you have been on a drug ...if it’s under a month you probably will be asked to persevere a bit longer.

Drugs can seem to not work one day then suddenly do their job the next.

Talk to your rheumy nurse...she may be able to change your meds straight away, or if your blood work shows up anything untoward...she will get you in to see your rheumy.

I am sure there isn’t one person on this site who hasn’t had to change their drugs at least once or twice on their RA journey.

That is one thing we have to learn .....we have to speak up for ourselves because if you don’t tell the rheumatologist everything isn’t hunky-dory he isn’t going to go looking for problems!

I hope things sorted out pretty quickly

My rheumy says " well you've got to live on it for years , so let's get one that suits you, and changed mine" . I agree with him. Tell him your quality if life on it is awful, I think you have good reasons for changing!

Generally I have never had a problem switching meds if side effects were getting me down... my rheumy makes it clear that I am a partner in my own care. I have a say in what happens. Talk to your team, listen to their advice but make your own mind up. xx

How often do you take folic acid? Maybe an increase would benefit you?

cpr02
cpr02
in reply to poemsgalore1

Hi I take it every day but not methotrexate day x

Deeb2908
Deeb2908
in reply to cpr02

I am on MTX pills Late Sept to Jan then past 2 weeks injections. Nausea and diarrhea and just feeling crap worse on pills. So sticking on injections till April then review but nurse said just call if things don’t settle. So talk talk talk to Rheumy they would not want you staying silent.

It’s your body and your choice. Only you can decide what is acceptable and tolerable for you. However, you should consider making these decisions with your Rheumatologist, though I admit I didn’t always. At times the side effects became to much and I just stopped taking the meds and then told the RA team.

RA/RD is difficult enough, the path to finding the right treatment can be challenging. The 3 month rule is a good one, if you can cope but it’s not a law and things don’t always settle down

I’ve done the same as Brushwork- sometimes stopped or reduced doses and told the rheumatologist later. However I am not saying that you should do this as everyone has to make their own decision.

My RA is pretty much under control atm which means I feel that little tweaks to the dosage of sulfasalazine by reducing the 6 pills a day if I’m feeling nauseous or really tired is justified.

IMO it’s a balance between controlling the disease and living a reasonable day to day life and it seemed to me that the only way I could eg find an ‘acceptable’ dose of mtx for me was by doing this. Please don’t quote me though!

I was on MTX and Hydroxychloroquine

I had varying issues ..and I stopped all meds ( i had a few others) for six weeks.

I found that my blood pressure was far too high. This had been underpinning my moods / irrationality. I was given a small daily dosage daily tablet which has worked quickly. I ve been doing weight watchers and lost a stone, stopped alcohol and found myself feeling a lot better. I then reintroduced MTX and am back up to my four tabs per week.

I have no side effects at all now.. maybe a tiny bit tired on a monday eve after taking my tabs but thats it. 100% improvement.

So maybe, in a roundabout way - stop taking your tablets, get yourself checked out for anything else eg Blood Pressure... and gradually reintroduce the MTX. Give it a go and see what happens. If bad side effects then recur then raise it.

Oh, i deffo wont take the hydroxychloroquine again. I was worried about my eyes and sight is too precious to risk. I d had some issues there and these had not been addressed.

Anyway, see how you go.

Hi

Bless you. I would say definitely a valid reason. I'm met loads of people whilst having infusions that couldn't tolerate mtx.

There are lots of other meds out there.. To try, some work better with mtx, but they still do work.

If you are unhappy and unwell.. Talk to your rheumy team ASAP.

I am a lucky one that can tolerate.. I've been on it, since early 90s! But I do get stomach issues if I don't take probiotics, and now also ginger root tabs daily.

Hope you get sorted soon. Jo xx

cpr02
cpr02
in reply to jojo_71

Really glad it works for you xx

I've just asked to change biologic from Truxima. I have only had one round of infusions last summer but didn't get the slightest improvement, in fact, Sept/Oct was the worst I had been since before I started Enbrel in 2002. The final straw was the major deterotation in my knee and wrist joints in the last 6 months resulting in needing an op on both. Trying to fit in ops around 6 monthly infusions meant I wasn't getting one or the other in a timely manner.

I called the biologics nurse and asked to be prescribed a different biologic. She was sympathetic and is working with the rheumy team to see what options I can be offered. It's worth making the call.

I know where you are coming from. Have been on oral MTX and Prednisone for 8 yrs. Tried the injections but they didn't work for me. Just went back to the pills --the whole time my hair has been a major issue. I really am in dire straights as my hair just keeps getting worse, severe thinning and now bald spots.I do take folic acid every day except pill day. I've tried biotin, Viviscal,vitamin D and K and over 50 women's vitamins, you name it, I've tried it. Absolutely nothing is helping and I'm really frustrated and past concerned. I used to have beautiful hair and now look like a beggar, or at least that's how I feel. My fear is that if I change meds I'll start having bad flares and then have to go back to the MTX and the whole problem will just get going again.I kind of feel like I'm damned if I do and damned if I don't.And I guess that where I totally lost hair is not going to come back even if I stop the MTX. Does anyone know if there is a drug out there that does not cause hair loss for everyone ? To say I'm desperate would be putting it mildly.Let me know how you make out cpr02 and I wish great luck and a good solution.

I haven't been taking the mtx for a while now. The nurse asked me why not and (apart from thinning hair and feeling sick), my main reason is that I've just got a bit of a hang-up about it. I feel unhappy and anxious taking it. The nurse kept asking me what made me anxious but it's hard to explain an irrational anxiety. I have taken it for long periods of time before, and it doesn't work at all for me on its own or when I took it with sulfasalazine. I've always felt miserable taking it and I've felt much less depressed since stopping. Luckily the toc is working quite well for me so far, although I realise it might work better or for longer with mtx it's worth the risk for me. I've had long term depression and anxiety before and I'm very wary of anything that starts giving me those feelings. I can't say the rheumatology dept is supportive of my decision - they seem to think I'm silly and irritating tbh - but specialists often have trouble seeing the whole person and not just the bit they're treating in my experience.

Hi cpr02. If you are unhappy with your meds or their side affects you really should speak to the consultant in charge of your care or a specialist nurse if that is a quicker way to get to the consultant. There is certainly no point in suffering in silence. RA is bad enough without getting depressed by the side affects of the very drugs which are supposed to be improving our health.

Thanks everyone I'm allowed to stop it spoke to nurse today .... I'm assuming my hair will get thicker now ?? People who mention infusions apologies for my ignorance but what's infused ? Is this treatment for ra ? Thank you for your help xx

This is your body- your pain!

Do NOT be bullied by doctors. Be ASSERTIVE and make it clear to them how badly it is affecting you and tell them that you want to try a different medication

I have TOTALLY refused Prolia for my ostroporosis and have told my doctor that I want to help my bones by changing my diet. She freaked out and has refused to send me for the blood tests I have requested.

Be sure to do your own research on your illness so that you can make an informed decision.

Read posts on this forum and on the osteo forums or others that relate to your illness.

I hope you get the help you need!!

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