Treatment or no treatment?: The more I read about RA... - NRAS

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Treatment or no treatment?

Evaibrahim60
Evaibrahim60
27 Replies

The more I read about RA treatment the more I feel hopeless 😩 sorry for being like that. I have learned about mine more than three years ago but couldn’t start treatment due to other medical conditions has to treated first. The information about the medications on offer for me has bad news other than good like: it will stop the bending of the fingers but wouldn’t stop the Bain nor the inflammation! For me that is not good enough. The bad side effects of this are more than the benefit. If I’m going to be in pain any way, I can’t bring myself to get to the idea of starting that treatment! Any advice please?!

27 Replies
oldestnewest
Sockknitter

I think you might have misunderstood. All treatments for RA are directed at reducing inflammation in the joints to prevent permanent damage. A side effect of this is that pain levels drop too.

Look at the NRAS website. They have loads of information. Also I think you need to speak to a Rheumatologist to discuss your options.

Don't despair, there is hope.

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Evaibrahim60

Thank. what I was talking about the options that my rheumatologist has given me!

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helixhelix

I would commit serious assault on anyone who tried to take the drugs away from me! They have completely given me my life back and the idea of being without them is horrendous!!😱😱

I have virtually no pain, and normally only from my osteoarthritis not the RA. I have no inflammation. I can do most things I want to do and live a 95% normal life. I have no side effects either.

Some people struggle with them, but most don’t. And you could easily be someone who doesn’t have a problem with them like me.

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Pollyannie

Hi there. You sound so positive about your meds, you've really cheered me up,thanks for that as I'm struggling at the moment. It's nice to hear about some that are working well.. I've had severe allergic reactions to 3 of the dmards and now about to start on amgevita. In the meantime, my RA is going crazy. I just hope to find some that work and my body will tolerate. Take care.

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woodstar1

Just to add, when I was first diagnosed I struggled to walk to the ensuite!! A few years on and with treatment, I exercise 5/7 days a week and due to work I walk miles daily!!!

It's finding what works for you. I was terrified of the meds at first but I saw how not affected my uncle, and I knew I didn't want to end up like him.

It's hard but there are lots of us well under control, simply due to our treatment.

Good luck, hope you feel better soon.

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Pollyannie

Hi, thanks for that, you are helping me alot with your positivity. I'm starting amgevita tomorrow and very scared. Trouble is I've reacted badly to Sulphasalazine and hydroxychloroquine (not sure if that's spelt right) in the past and wasn't much better on methotrexate, although I did stick it out for 18 months. You were so right in saying that it's finding the right treatment that is the issue. I hope you continue to do well and improve. Take care

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oldtimer

If the drugs prevent the inflammation and damage to the joints, then they will also prevent the pain. It sounds as if you haven't received full information about the choices offered to you? Perhaps look at the medication pages on the NRAS website for more info?

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Evaibrahim60

Thanks my information is directly from the page about the medications.

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medway-lady

I feel lucky we have treatment my mum did'nt and sufferred a lot. I was in remission and even now with kidney failure I can take medications. Yes a few side effects but so do most drugs. Try Fosfermyacin for urine infections, if you want side effects just make sure your near the loo with a bowl in hand but it works!

I know ts hard but no medications for me would be just stupid, the handfull of pills I take 4 times a day mean I will never again run a marathon but can walk albeit slowly.

RA is treatabale even if it takes time to find the right approach, their is no miracle cure or one size fits all but in time with patience you'll be fine.

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nomoreheels

Hiya Eva. Treatment all the way for me. Do you have problems with meds? By that I mean side effects.

The info you were given wasn't correct, that is if they were DMARDs that were being discussed. They are designed to help pain & inflammation, possibly not enough to warrant another prescribed pain reliever or anti-inflammatory (NSAID) but certainly will go a good way, more than opting out anyway in my view. They change the course of how RD works, this is why they can protect joints & form a crucial part of disease management. Whilst it's true none are side-effect free but you're not odds on to have any, or if you do they may well be tolerable. Even paracetamol & aspirin come with a list of possible side effects, possible, that's the thing, all side effects found in 3-stage trials have to be listed by the med manufacturer by law. If you do decide to opt for proper RD med treatment try to focus on the positives, that they will slow down or even halt the disease & not side effects you may never experience.

In the 11 years since diagnosis I've very little joint destruction apart from my feet & I don't need any replacements. My fingers are OA affected but unfortunately there are no meds to stop that happening whereas we do for RD!

Maybe this from NRAS would be helpful in explaining nras.org.uk/getting-establi...

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Evaibrahim60

Thanks a lot for the words of encouragement.

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Lyndy

Hello.... those long lists of side-effects each worse than the next would put anyone off! But don’t be deterred... it is often trial and a bit of error until you find the one that works for you. I haven’t continue d with those that gave me bad side effects and now have a regime that I hardly think about day to day.... best of all no pain! Give it a try and see....you can always stop if you don’t like the meds xx

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Evaibrahim60
Evaibrahim60
in reply to Lyndy

Thanks 🙏 a lot for the supporting words.

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AgedCrone

Who gave you that information.....or is it just something you have read?

Everyone on here has RA and we are not all crippled with pain 100% of the time.....yes we have our ups & downs ... but we are a lot better than we would have been had we refused suitable drugs.

I’m sure we have all had our doubts when we have read the patient information leaflets, but I’m sure the majority of us are pleased we take the drugs we take.

Our rheumatologists prescribe suitable drugs and suitable analgesics so please do go back to your rheumatologist and take his advice. It is not an exact science, & sometimes the first drug doesn't work....but there are many options these days.

A lot on this forum ....me included .....have been taking Disease Modifying Drugs for 20+ years, & many of us have the disease under good control.

Please don’t suffer unnecessarily.....get some help.

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Rheumagal

There are a lot of treatment options for RA. And I’m sure you will find what works for you. It can be a bit of trial and error but you’ll find one that’s right for you. Most if not all of us have tried many medications before finding the right combination that works well. Along with a healthy lifestyle and good support. Don’t give up hope and hang in there. ☺️

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Evaibrahim60

Thanks 🙏 a lot.

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Lolabridge

Love my drugs! They enable me to function independently.

Had problems with the traditional DMARDS and now on a biosimilar. Had NO side effects with my first cycle of Truxima but, as my disease is so aggressive, effects of it are wearing off in just under 6 months. Soon to have my second cycle of that drug that my consultant says should work even better than the first so hopefully I can start a steroid taper programme. I don't like having to take the steroids but they make daily life bearable for me.

Don't give up hope, I feel sure there is a wonder drug waiting to find you.

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Evaibrahim60

Thanks 🙏 a lot. I believe for me steroids are out of the question because it will make my platelets count shout the roof because of other condition they already high. I do understand there are many options but because of the patient information leaflet they seem to me as unsuitable. Thanks to all who gave me support on here, I’m now going to give it a try when I visit my rheumatologist next week. I pray for all to keep well and 😊

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Simian

i felt the same for a long time. Nothing helped significantly, side effects were awful and i struggled along for 9 years. However, the last 2 years have been a revelation, I finally got on a cocktail of drugs that worked, i've gone from having 20+ flare ups per year to 2 so far this year, the symptoms have receded to a small ache in 1 or 2 fingers on occasion and my elbows, knees and hands are otherwise free. I'm able to pick up my 3 year old daughter proper for the first time and i cant tell you how much that means to me.

finding the right treatment may take some time but there will be something that works for you, keep at it and things will improve.

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Evaibrahim60
Evaibrahim60
in reply to Simian

Thanks very much.

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Cwendyn

Are you in the US? It seems there’s a lot more fear around drugs than the UK and it’s left to the patient to make a decision?

I’ve been on various DMARDS for over three years with no side effects. Added in a bio similar a year ago and it changed my life.

Try not to be frightened of the side effects as they most likely won’t happen to you. Untreated RA is far more dangerous and you deserve to enjoy your life 💕🌻

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Evaibrahim60

Thank you very much. I’m in the down under ( Australia). And yes they give the information and leave the final decision to patients. I have a liver condition and she wants me to have one that’s manly effects the liver !

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Mall
Mall
in reply to Evaibrahim60

Be guided by your rheumatologist. Many of our stronger drugs can affect the liver as the liver is the organ that processes everything that enters our body and bloodstream. Those taking drugs that can impact the liver have their livers monitored closely through regular blood tests. If there are any changes to liver function the drug is stopped before damage is caused. I am sure your rheumatologist would have come across lots of patients with liver issues.

There are risks with all DMARDs and biological drugs. These we have to weigh carefully against the severe irreversible impact that untreated aggressive RA has on our joints and organs

If you have a mild form of RA then may be you can consider alternatives to DMARDs and biologics.

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Jackadoodle

Hi, for a number of years now I have been on MTX and Benepali I am pain free at the moment but do get the odd aches and pains when the weather changes, you do get side effects from this medication but I have found that I have a better quality of life rather than being unable to do the every day chores and going for walks etc.

To put it bluntly your life expectancy may be shorter but you have quality of life without pain.

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Hessie5

Drugs are derived from plants albeit altered. Everything in life has side affects, from the air we breathe to the use of our mobile phones. We just have to weigh up the pros and cons. If you are going to get a better quality of life, are able to move with the help of medication then I am choosing that route. Who knows the meds could be that prop to help you into remission. 😊

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Troygirl
Troygirl
in reply to Hessie5

FYI RA Biologicals & Steroids are not derived from plants!

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Hessie5
Hessie5
in reply to Troygirl

I should have separated biologics - thx

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