Scared of side effects

[Traveler5]

Hi, I am 29 and I have been diagnosed with RA 2 years ago, rheumatology is really bad in communication and advising what shoul I do, what should I eat is really poor. I have to do all the research on my own. after my last flare up rheumatology prescribed me folic acid 5mg, prednisolone 5mg, and methotrexate 2.5 mg. I am scared of side effects and thinking about alternatives. Does anyone has experiance with acupanture? Or some natural ways how to deal with the pain? Recently I tried CBD oil, which helps a lot, so I am thinking about not starting the medication as flare up is gone. Thank you for any advice.

[allanah]

I'm afraid to say there isnt a cure for RA and if your doctors have advised you have medication I would follow that advice. Mainly as my family had no medications years ago and as RA is a full body illness not just joints they got lots of illnesses and joing problems, it's a severe disease left unchecked.I'm so lucky to have the meds. You are checked with blood tests, xrays etc very very regularly and the docs change things accordingly. So be reassured. Do check if they gave a contact number you can call them on so it's easier for you to be in touch , it should not be difficult to reach them although that's what you are finding, you should call and insist on replies.

I have had acupuncture, it was great short term for pain but I wouldn't suggest that or cbd oil as a long term fix.

The fact your flaring could be you are on reasonably small doses of RA drugs and maybe your rheumatologist would review that for you .

Thinking of you

[Traveler5 in reply to allanah]

Thank you very much for your advice, I know there is no cure, but all the pills and their side effects truly scare me. After my x-ray I kept calling rheumatology for 2 weeks. I left them like 5 voice mails to call me back. It took 2 weeks to get in touch. They always promise to call back but many times they don't. Also my toes are very swollen, sometimes I can't even put on my shoes, but noone has physically seen my toes for 2 year. Sometimes I think about going private, do you think that the attitude could be better?

[helixhelix in reply to Traveler5]

You might get a better consultation if you go private, and more time to ask questions so if you can afford it then you could find it helpful. But likely to get exactly the same advice. Methotrexate is the best first drug, and gives the best chance of getting into remission quickly. Some people have even found that after a year or so they can taper off it and stay in remission.

There are some scary side effects from MTX, but you are well monitored. I’ve been on it 11 years with no problems whatsoever, and for the majority of people it’ fine.

Alternative treatments can help a bit to take the edge of things, but won’t stop your joints being destroyed in the background. And eating well is very important to help you tolerate the drugs and support your immune system - lots of veg and fish, not much fatty and sugary food and no highly processed food.

Try not to be scared, it really does work out with patience.

[allanah in reply to Traveler5]

You might get a better explanation but there is another way nras.org.uk have a fabulous helpline where you can talk about your worries, they cant help with meds but they can certainly ease your mind about side effects. The ones I had were a bit of nausea( changed the way the drug was delivered) some stopped working ( increased or changed my drug) but nothing major. Side effects of RA , well I bet you've researched that 😂 much worse than the meds! You can always ask to see a different rheumatologist or rheumy department, (ask your gp) it's not right they took that long to reply and I would complain loudly to them on patient liaison.(PALS)

You are the patient, the centre of care, the one they should be there for.!!! Sometimes you have to be your own ambassador and just tell them your unhappy and worried.

We were all worried initially and if you google it will make you feel worse. So chat with NRAS, chat with your rheumy department, get on a drug that suits you and controls your flares properly and of course keep chatting here 😍

[Lolabridge]

Hello and welcome. I think you will find we are all anxious when first diagnosed because the prospect of having to take some of the medication for RA is very daunting. But, if you are in extreme pain and struggling to function (as I was and many of us are initially) you will take what is offered and not allow what you read about side effects put you off. There are side effects to taking paracetamol but we all do when we feel we need it!The NRAS website has a huge amount of very useful information about the various different medicines and lots of advice on how to manage your active disease and it’s symptoms. Trying to reduce your stress and resting if you can is important, as is eating healthily (the Mediterranean diet is recommended) and getting exercise. Do take a look at it the website.

Some people experiment with alternative remedies with varying degrees of success and you may get some replies about their experiences.

Good luck on your RA journey.

[Marionfromhappydays]

I can only echo whats been said already.

It absolutely 💯 % sucks having RA and it seems like we have to weigh up the medications with the disease itself .

I was going around and around in circles kind of beating myself up about taking this medication but one night I was up sat on my living room floor crying with pain and tiredness and came to the decision its about quality of life and without medication RA kicks my ass.

My rhematology department has a psychologist and when i was diagnosed last year I was referred (I've still not seen them yet and its nearly a year!) But I'm going to attend and chat things through when my appointment arrives. Maybe yours has someone you could chat to?

Rhematology as a whole ive found very slow but with current covid times its worse I guess. It does sound like your medication isn't sufficient enough to control your RA. I would keep on trying to talk to your team.

People here have said to me being diagnosed with RA you go on a journey, from shock, anger etc to eventually acceptance (hopefully), im still a long way off from acceptance!

Take care x

[Traveler5]

Thank you for all your advices. It makes me feel better already. How ypu all said, what I can find online is mostly bad reviews, but people usually don't bother to write good ones. Thanks a lot

[allanah in reply to Traveler5]

That is SO true. You find people when well on their first drug dont need to come to a support group so good luck on your journey x

[LoneEra]

Believe me, I know how you feel. I’ve been there - diagnosed in my mid-twenties and hating all of the drugs. I also went years without taking any disease modifying drugs...because I felt awful on them and I couldn’t cope mentally with the hair loss I was experiencing from methotrexate.

For years, I “managed” by sticking to a healthy diet, no alcohol, plenty of exercise, managing my stress, resting when I needed to - as well as physiotherapy and acupuncture. And steroids during flare ups. It was ok for a while...

But then things started to go badly wrong. I needed knee injections, then a knee operation, and another knee operation. I also have irreparable damage in my elbow. And where I left myself with unmanaged pain for years, I now have a central nervous system that is haywire.

It’s the unseen damage that is the worry here. You’re young and you have an opportunity to get on top of the disease before it gets the better of you. Yes the drugs can be nasty, but the untreated disease can be much much worse.

By not taking the drugs, you’re denying yourself the chance of living the best possible life. In the words of ice hockey legend, Wayne Gretzky: “You miss 100% of the shots you don’t take”.

[GinnyE in reply to LoneEra]

What a very pertinent reply.

[Boxerlady]

I was also diagnosed with RA nearly 2 years ago and tbh I didn't hesitate to take any medication offered. I've been very lucky in that my rheumy team is great - a nurse always calls me back on the same day as I leave a message so I'm sorry to hear that your team isn't as supportive.

It may be partly because I'm older but I didn't think of researching the medications prescribed that much, I just trusted the experts and took their advice but then, the nurse gave me very good pamphlets from Arthritis Research UK (there are great ones on the NRAS website too) about lots of things like diet, exercise, pain management etc and I was able to go on a short course in the department where there were talks given by various therapists so I felt reassured that I was in good hands.

There's a great NRAS helpline where you can chat to someone and you'll find lots of support and advice here but personally I would encourage you to take the medication as you really don't want to risk long term joint damage and if those particular ones don't suit you or aren't effective, there are lots of alternatives.

[Hessie5]

Hi Traveler5 - you have been given some great answers here! Do take them on board. I can resonate as someone who would refuse to accept even paracetamol!

There are side effects with eating processed food - it’s all about balance - you are going to need to have a quality of life - this worked for me:

1 - creating a good team; both NHS and private, to help you (I went private if things were too slow)

2 - be your health advocate - insist, insist, insist! On getting things you need, i.e. scans, check-ups etc. don't suffer in silence

3 - get the right meds (don't stress on side effect; focus on how they will give you your life back and prevent further damage from happening ) - besides, if they don’t work, you can always stop - you are going to find one that works, be patient

4 - incorporate a good diet (ditch the processed stuff use as a treat if essential) and get a good exercise routine - that could be simply walking, stretching - just gentle movements

5 - use this forum - for help, vent, share your journey, ask for advice -we all started where you are now!

Remember -we are so blessed and fortunate to have suitable RA medication and a healthcare system to monitor us. There is light at the end of the tunnel. 🌈🙂

Things will get better, try not to stress, take care for now- best, Hessie x

[Madmusiclover]

Reading the list of side effects on any drug would scare anyone. I took the view that if they didn’t suit I could stop them. I tried 7 drugs, some twice, until I got to one that suited. In the early days I was in denial and thought I didn’t have RA. I’m glad I started drug therapy. It wasn’t pleasant having side effects but they didn’t kill me and enabled me to get to one (an expensive one) which works and on which I have no side effects. Take care.

[Brushwork]

Sadly, many of us have tried all the alternatives and some have paid lots of money for the privilege (I didn't - I'm a Yorkshire lass 😂), only to find they don't control the RA. In the early stages of RA you may flare and then go into remission naturally and sometimes the remission coincides with trying an alternative, be it diet or supplement. This gives a false sense of cure or control.... Sad, but experience confirms the truth of this.

Fasting can stop a flare, it really does. It does not however, stop them recurring. If you are prepared to fast whenever you are feeling rubbish and in pain, well, it is up to you. I tried it but honestly when I am hurting I don't want to starve myself.

So, the RA is a disease that must be controlled. The only effective way to do that is with medical intervention. Many of us also follow a super healthy eating and general lifestyle to give our body the best chance of being ok.

Sorry Traveler5 but I would strongly urge you to take your consultants advice and agree a treatment plan that suits you.

[runningbracken]

I echo everything that's been said. I looked at lots of alternatives when first diagnosed. But to be honest i was so glad to be given the RA meds. God knows what state i'd be in without them. I've had no side effects except my hair has really thinned.I take supplements drink lots of water and eat best i can and been on Mtx since the end of 2017. Still get light localised pain day after being at work and still like my afternoon sleep. But all in all am much better than i was a year ago. You'll find what works better for you. Best wishes

[SueBaker]

I guess you need to make that decision for yourself- the rheumatology teams have been very good with me and the drugs you mention have worked very well with very few side effects, for me. Everyone is different. But once you have joint damage you can't go back and that is what they are trying to prevent, permanent disabilities and pain in later years. It's up to you whether you take medical advice or not.

[Anniebl24]

It seems to me that better confidence in your rheumatology team would help you. I was not happy with my first consultant and got my GP to refer me to a different hospital in a neighbouring county. Just a point to consider.

[AgedCrone]

Sadly with RA we do need to take a Disease Modifying Anti Rheumatic Drug like Methotrexate, to make sure the RA is controlled & we really do have to accept that all the methods you have mentioned will not help without the DMards. You really do need to come to accept that without these drugs you will not get the relief & control that you need. As you know rheumatoid arthritis is an auto immune disease and acupuncture ....unless for nerves affected by joint damage will not really help you longterm.

Personally I eat what I like.....thankfully I enjoy healthy non processed foods...with the odd naughty.....& unless you have another condition that means you need to exclude something from your diet you can eat a normal healthy diet. The only real NoNo is smoking... alcohol is best avoided until you are settled on drugs that are really helping you.... but then as long as your rheumatologist agrees ....alcohol in reasonable quantity is acceptable.

There is no clinically proven diet recommended for rheumatoid arthritis.....so your rheumatologist is not being negligent by not giving dietary advice.

Not all rheumatic drugs have side effects ....so speak to your rheumatology nurse or your rheumatologist and explain your present drug regime isn’t helping you enough.......so could they maybe tweak it a bit so that you are more comfortable.

Most people here have accepted that to lead as normal a life as possible we do need to take these drugs......it would be lovely if we didn’t .....but the key really is accepting that they are necessary.

You are unfortunate having been recently diagnosed with the present NHS situation ...Rheumatology has been hit really hard & we are not getting the regular appointments that are really recommended.....so we do have to do some research ourselves.

If you have a look Top right on this page you will see TOPICS...click on some of those headings....you will find lots of good advice there.

[EmmaSpicer-NRAS]

Hello Traveler5, thank you very much for sharing your experience with us.

To echo what a few other forum users have said, NRAS has a wealth of information online. You may find this section on our website, about diet, helpful nras.org.uk/resource/diet/

And this section about pain management nras.org.uk/resource/managi...

If you would like to speak to someone over the phone, out freephone helpline is available 9.30-4.30 every week day nras.org.uk/helpline/

I hope you find this helpful, Emma

[Hidden]

You need to get aggressive treatment started as soon as possible to prevent damage to your joints. Don't be sacred of the drugs you have been given You are on extremely low doses. Possibly you should be getting more MTX.

I'm more than 40 years older than you and have been on higher doses of Pred and am currently on four times your dose of MTX. For a while I was on ten time your dose of MTX. The only side-effect was a reaction in my liver that was easily sorted out by dropping the MTX for 3 weeks and then going on to half the previous dose. I'm not saying it would be the same for you, but there's every chance ot could be. Many people do really well on MTX. It's the gold-standard treatment. It has been used for a long time and is well researched. Acupuncture and CBD oil will not cure your RA. Nor will MTX, but it will control and subdue it and in all probability make life very much more bearable for you. It takes up to 12 weeks for MTX to be effective. You need to get started asap.

I'm sorry if this sounds harsh. I do understand your fears about the drugs. I and many other people had similar feelings at the start, but please don't just read the about the downside. There are many success stories too. I hope you will be among them.

[Flor1rence]

Hi Traveler5, I have been on MTX for 6 years now and have to say it has proved very successful. Initially was on a much higher dose in tablet form and then for about 19 months now on injections. I understand it doesn't suit everybody but I would try it, don't worry about the side effects you will be carefully monitored with blood tests etc. good luck 🍀