About RA meds.: Would be very interested to hear how... - NRAS

NRAS
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About RA meds.

Agoodlife
Agoodlife

Would be very interested to hear how many of you have been on RA meds since diagnosed? hoping I won’t be to intrusive.🤓

87 Replies
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I have.

Off them now.

Luna20
Luna20
in reply to Bunty62

What were you going n? How long for and why did you come off them? If you don’t mind my curiosity...

Bunty62
Bunty62
in reply to Luna20

I tried all dmards and 1 biological, plus intramuscular steroid shots. The side effects of the drugs were awful. Some drugs actually made things worse for me, and caused other health issues on top. Out of all of them the steroid was probably most helpful.

I still have some pain, and I'm quite stiff if I stop moving, and my legs don't always do what I want them to do, but I'm no where near as bad as I was. I've no idea of course if things will get worse. I guess I will deal with that if it happens. At the moment there is no sign of current inflammation, only of past damage.

I am

I have, from the beginning, and now on my second biologic .... which is working! Hooray 😀

Could you tell me how they have helped since you started? And what your overall health feels like now at present? No need to answer 😊👍

I was almost completely incapacitated with onset of aggressive sero positive RA in May 2018. Had serious side effects and reactions to Sulphasalazine and Hydroxychloriquine which put me in hospital for 10 days. Subsequently MTX gave me chest infections and a partially collapsed lung so taken off it. Benepali did not work sufficiently well so was switched to Truxima (Rituximab). Was on Prednisolone throughout with occasional steroid injections too (into shoulders and IM). After second cycle of Truxima have minimal pain except lower thumb/hand joints and ankles and latter can swell. (Not on MTX with it. Still on Prednisolone but have started taper programme from 10mg daily and now down to 8mg. Rheumy has told me not to try to go below 7mg.

No way could I have coped without the meds prescribed.

Thank you.

Yes, I've been on MTX since diagnosis.

I have been on RA meds since diagnosis. They've changed over time and biologics added, and I've tried tapering but it's always returned. It used to be thought RA/RD would burn itself out not sure if that's still current thinking. Had it 34 years and still hopeful.

Depends what you mean by RA meds, there are so many varied types. I started on NSAIDS (Diclofenac) which aren't used as often now. but are still useful. Moved onto DMARDS which I am still on. And also used a biological and Pred. So yes, I've been on them since diagnosis in 1987.

Immunosuppressants in particular.

They were all immunosuppressants except for Diclofenac. Which I don't count as I was only on it alone for 6 months while I was referred to rheumatology. Then I started DMARDS.

Right you are but their effect varies widely . Too much to go into each one explicitly. There are RA meds , especially those that are cytotoxic like Mtx and those that prevent certain functions of the immune system like biologics of many kind. These are the ones that I perticularly refer to.

My Rheumy won't let me have anti TNF biologics because I've had cancer. And because of other health conditions (too many to list) my options are limited.

Having had cancer isn’t always a NoNo for RA drugs.

I had breast & skin cancer & am now doing well on a Biologic..(..but I don’t have any other health conditions)

It was only anti tnf(TNF?) she said no to AC. I'd have to research it. 😳

Definitely worth investigating if you aren’t happy with your present meds.

Poems, I wonder if your lung disease is why anti TNFs are not recommended for you. Since my lung diagnosis, I was taken on anti TNFs and told they are not to be used for me anymore.

Hezekiah
Hezekiah
in reply to Agoodlife

"Cytotoxic drugs (sometimes known as antineoplastics) describe a group of medicines that contain chemicals which are toxic to cells, preventing their replication or growth, and so are used to treat cancer. They can also be used to treat a number of other disorders such as rheumatoid arthritis and multiple sclerosis. Once inside the body, their action is not generally tightly targeted, and they can produce side effects both to the patients and others who become exposed."

from hse.gov.uk/healthservices/s...

Agoodlife
Agoodlife
in reply to Hezekiah

Exactly. Killing cells always cause side effects. Like a Pharma person said: Without side effects there is no effect”The side effect effects It effects all ways the immune system in one way or another. In your case you still feel the good effect.

Hezekiah
Hezekiah
in reply to Agoodlife

What do you happen to do for a living Agoodlife, if you don't mind me asking?

Agoodlife
Agoodlife
in reply to Hezekiah

I am a psychoanalyst psychotherapist with long scientific training in searching the human mind.When I became ill I started searching other sciences that were part of the AI puzzle,as well as RA.

Hezekiah
Hezekiah
in reply to Agoodlife

Thanks for the reply, Agoodlife. When you say AI, I take it you mean Artificial Intelligence? If so, I don't really see the connection to RA/RD.

Agoodlife
Agoodlife
in reply to Hezekiah

Sorry this is not what I meant. I mean Biochemistry, Human metabolism everything that take care of human functioning

I think AI is autoimmune Hezekiah.

That makes much more sense - thanks nmh.

You probably know my story by now after all these years! Anyway, about a year with symptoms pre-official diagnosis, and by time that arrived I was completely incapacitated and housebound. Started meds on diagnosis and have had a v. positive experience with all of them. Now pretty normal with no negative side effects.

Thank you HH I will get back to you. Yes I have followed your journey and your fiight with RA. I do have some reflections. And the post was to you not me!

I’ve been on them since summer 2017, after a June diagnosis of RA. They started me on Methotrexate tablets, wasn’t on those for long when they said have to start Methojet injections. I was terrified of injecting myself, but you have to get past that & it’s a pen type, not needle used for blood tests, relief😀 Consultant was pleased with improvements, inflammation down etc. But then that changed & he suggested we try biologics, another injection, Benepali. That one is delivered through a private company who deliver them, not happy about that at all. The other downside for me is every time I do this one, it stings like heck. Have tried suggestions from others on here, but hasn’t resolved it. The consultant was very pleased at the rapid improvements from this other medication.

alsmum
alsmum
in reply to Shamrockgirl

Hi Shamrockgirl, I also had stinging with Benepali and I found the pen injections really painful. I had to inject one time in front of my rheumy nurse and she could see what agony it was. I now inject Erelzi by syringe, so much more control and I don't dread meds day. Good luck. Fi x

Diagnosed Sept 2019 and been on MTX tablets with daily folic acid since. Resulted in 95% of my agonizing bilateral shoulder pain disappearing. I can sleep on my sides, I can once again wear collared shirts or scarves or a hoodie (as I am now). My fingers have not quite settled down, still stiff and tender for several hours in the morning. And my ankles and wrists feel very weak at times. But otherwise, I do think the MTX has improved things. No side effects -- that I'm aware of, at least. That's been a pleasant surprise.

Agoodlife
Agoodlife
in reply to lily2003

How I see it is that your whole immune system has slowed down, your bodily needs are right now not so intense your body is still coping but at the same time the needs that the underlying problems that lead to the disease are not addressed and new needs appear and new meds are needed for these and for what they cause.

i agree. medicines are only covering symptoms but not resolving the under problems, for example, why our body attacks itself. I was diagnosed RA last month and had flareup... then i stop eating sweets, carbs and eat clean and drink cold press organic juice... restrict myself by doing couple of time fasting from 24 hours to 36 hours... I found my body react nicely... Autophagy is a good one to let the body do self cleaning and re-set immune system... Hopefully, i won't have to touch those strong drugs...i also use infrared light to help warm up my body....

Good for you👍👍You have started turning the vicous circle towards health and listening to your body and its needs! But I’m not with you on “ the body attacking itself” It’s trying to tackle a situation that has become overwhelming for the immune system to handle.

Taking away Naproxen away was my first move as well when I started my research.But it was a long process to find what was making it hell for my immune system!Lots of new knowledge was needed!

lily2003
lily2003
in reply to Agoodlife

Agoodlife, I’m not sure I understand your reply to my answer to your original question. Are you saying that my body has “new needs” and that the protocol I’m following does not address “underlying problems”? Just want to fully understand you.

Agoodlife
Agoodlife
in reply to lily2003

What I mean is that when you take Mtx symptoms are relieved for the time being, you are answering thus a need : suppressing the need for the immune system to fix the situation. The immune system tries to make you know what the body needs and goes on working its way around Mtx, I hope it clariftyes something of my view..? Do ask more if sounds muddled 😉xx

lily2003
lily2003
in reply to Agoodlife

Hmm, perhaps I should conference call you into my next rheumatology appointment. I've been reading this forum for a year and a half and I dig where you're coming from AGL/Simba. Of course, I will consider what you write as I progress along my journey.

Been on numerous RA meds since been diagnosed in 1996 for 23yrs. Think I’ve tried them all, as the drugs have improved over the years and my RA has declined, I’m currently taking Baracitinib and 🤞it’s working up till now. 🤗X

I have thank the Lord for the NHS !

I have. (4 years) Mtx (12.5 mg) since diagnosis and sulfalazine (3g) since Oct 19. Previously on hydroxychloroquine from Feb 16- June 18 but stopped due to eye problems.

Dx 1971, taken drugs ever since.

Hi I started on ssz which worked for a while then put on mtx which I couldn’t tolerate (liver said no !). I was then given quite a few others including leflunomide, hydroxy. etc these didn’t work for me. I was then started on rituximab infusions which didn’t work either well did but only for about 3 weeks. My consultant then gave up on me the rituximab knocked out my immune system and I was left for 6 years in agony being told I couldn’t be treated. The consultant retired horray and I now have a new fab one who has given me hope and started on baricitinib 2mg with added low dose prednisone just to try and reduce symptoms and inflammation the lack of treatment has left me with. It’s been a bit of a rollercoaster and I tried to up the baricitinib to 4mg and ended up with two nasty viruses so back down to 2mg and so far so good. I’m still very sore and have some active inflammation and my immune system is still pants and will never recover but at least I’m not completely housebound and not able to function.

I had symptoms for at least 7 years and received homeopathic treatment via my GP. I was very reluctant to start DMARDS when I finally ended up at rheumatology and it was sometime later I started MTX.

I have CD, so I was already GF, but I tried an elimination diet with little effect. I also investigated helminths, but by that time I was too far down the conventional medication route to stop taking meds.

The usual combination of SSZ, HDRX, LFM didn’t work and I’m now on Rituximab (2yrs) which has been effective. My life is radically improved. I had Palindromic RA as well as RA and those absolutely terrible flares have almost disappeared.

Of course I have joint damage. There’s no knowing when this occurred but I wish I’d received treatment earlier. I was completely ignorant of the untreated effects of RA.

I don’t like taking immunosuppressants and of course I’m anxious about the future - the lack of long-term testing of the newer drugs mean the side-effects are not fully understood. I’m also aware that RTX might not work for me forever and I’ll have to change drugs. So many unknowns...but the real point is that I would not have wanted to carry on as before, without them.

I have been on Mtx (tablet form ) then injection since 1996. Tried to stop many times. But the last flare a year ago was too scary so now it is fairly controlled on Mtx, Meloxicam and blood pressure and cholestrol checks.

Diagnosed in February 2019, started methotrexate and folic acid in April 2019. Was also on prednisone from February 2019 until December 2019. Now I just take methotrexate and folic acid. I had a two week hiatus from the methotrexate in November 2019, after I had a flu shot.

Hi goodlife. (I like your name.. 😁)

I read below with interest, the mtx is cytotoxic.. I didn't know that, considering I've been on it since early 90s!!

I think I've probably been on most.. As my juvenile ra started so early.

Had a few different anti tnfs, and biologic, currently on ritux.

I know from 80s when they didn't have anything to help, what the difference is between being controlled (well.. Mostly) and having it raging through your body.

Even those first few years of not being controlled has led to me needing 17 ops.. To replace, fuse and generally pin me together. Lol!

They've never advised me to try reducing meds, I don't think I would ever dare try.. I just want to remain as well as I can.

I hope you are well controlled, are you on meds,?

Kindest regards. Jo x

Thank goodness I have since 1999.........no joint surgery.....& no special diets......can’t imagine the state I would be in without them.

May I ask why you are interested?

Hezekiah
Hezekiah
in reply to stbernhard

I sure hope you get a reply stbernhard....

I am sorry if my answer have taken time. I am interested to follow my process to get better without meds, if it is possible?!

I'm sure it is possible for some people and I wish you all the very best.

Have been on meds since diagnosis 40 yrs ago, lots of different types that I can't remember 🤭 you name it I had it, but finished methotrexate 7 yrs ago, now on leflunomide and small dose of prednisolone 😊

I started on meds age 37. They said I was in remission in my fifties - 'burnt out' is the expression they used, but at age 65 I had a major flare and been on medication ever since.

I was diagnosed in 2007 and have been on Sulphasalazine since--- 8 tabs a day. occasionally taking Hydroxychloroquine, which effects my dry eyes so do not like taking this. My sero positive RA has caused the lung condition Bronchiectasis, which is most challenging for me. all the best x

I wonder if being sero negative makes a difference? Although I certainly experience pain and stiffness I'm kind of OK (for time being at least) without drugs. That's not to say being sero negative is less agonising and damaging. The damage to my joints is very evident, and the pain horrendous. Seems to have died down a bit.

wishbone
wishbone
in reply to Bunty62

I read somewhere that people who are seropositive have more chance of contracting intererstitial lung disease and wouldn't be surprised if the same goes for RA related heart problems as well.

Bunty62
Bunty62
in reply to wishbone

Seronegative at risk of heart disease and type 2 diabetes and inflammatory bowel issues. Not sure about lung issues. All sucks though don't it. I did wonder if seronegative folks can maybe go into remission more often than seropositive people. I've got a vague memory that one of my rheumatologists mentioned something about this. Although I could have dreamt that!

wishbone
wishbone
in reply to Bunty62

I did not say that seronegative people were not at risk of RA related heart problems, or other internal organ disease, including ILD. But if, as I read, seropositive have a higher risk of ILD then it may be the case with RA related heart issues too and possibly other internal organs. Of course I may well be wrong as could the article I read about seropositives having more chance of getting RA related ILD. It also stated that ILD is more common in males than females... just my luck! :-O As you say...it all sucks, big time! :-(

I wonder if the results of any surveys exist. I'd be surprised if there hasn't been any research into it.

crashdoll
crashdoll
in reply to wishbone

You’re correct wishbone, ILD is much rarer in seronegative patients. I was under the impression that other organs are less likely to be affected if you’re seronegative but I could not be as sure.

wishbone
wishbone
in reply to crashdoll

Thanks for the confirmation crashdoll. I suspect the same goes for other organs too.

Mmrr
Mmrr
in reply to Bunty62

I think a lot of beliefs about seronegative RD being less problematic on many issues associated with RD are being dismantled.

I'm seronegative and struggle to find anything other than prednisolone which improves my quality of life.

Bunty62
Bunty62
in reply to Mmrr

Steroids were the only thing that have been beneficial for me too. I've simply given up with other meds. They either didn't work or caused worse problems. I suspect it may have been drugs I took for another issue that triggered an autoimmune response in the first place. Whilst I'm in no way anti drugs I find it worrying that folks are on so many. I was on a whole cocktail at one point. Unless things get worse, I won't be taking seriously toxic medicine.

crashdoll
crashdoll
in reply to Mmrr

Mmrr seronegative RA is a tricky one to treat. Anecdotally, I think many people do not respond as well to the drugs as the vast majority of clinical trials are done on seropositive patients. As a general rule, seropostive is more aggressive but it’s no consolation if you’re in the minority of seronegative patients (like you and me) who do have aggressive disease. It’s a tough one.

I have been on RD meds for 30 years since being diagnosed in 1989, I have only had one bad reaction to one and I have been on lots of different ones. Some helped, some didn't at all. It is almost like 'Do you like Marmite'; some people respond to the RD meds some do not.

However, I must thank the Rheumatology Consultants (NHS) except for one year 2008/09 have kept me going enabling me to stay at work until I retired ( an Office Post). I do get flares which can last for what seems ages but manage to keep on top of things. Take Care.

That's really positive to hear that you managed to keep working until retirement. I was diagnosed last Feb with seropositive aggressive early onset RA and been on MTX and hydroxy ever since. Still trying to get the dose right, but there's no comparison with where I was a year ago when everything became a challenge. When reading up on the disease it seemed almost inevitable that at some point people with RA are unable to work, which quite frankly terrified me. I still haven't disclosed to work I have RA, as it's mostly managed. Sport used to be a big part of my life and friends and RA has stopped me doing triathlon, but I need to work, not just financially, but for my mental well being. Really heartening that you did it.

Thank you for your reply, maybe try a bit more swimming; swimming is so good for RD. Like me you are so right 'for my mental well being'. Due to the fact that that my body was 'slow' I did a degree in my late 50s early 60s and I loved every minute of it. Not easy, I had to come out of it for a year 2008/09 as I couldn't hold the books open. Also my colleagues at work knew I had RD as walking became a challenge. My diagnosis was 30 years ago when medication for RD was not anywhere as good as it is now. Take Care.

Since first appointment over 20 years ago x

Agoodlife
Agoodlife
in reply to Nyreedw

How are you now.?

Nyreedw
Nyreedw
in reply to Agoodlife

I'm brilliant. I don't take any pain meds for RA, I'm working full-time still and fully active. I travel and live life as normal. Only problem I have is with my hip and that is osteoarthritis but is being operated on soon so I will be back to normal. Although still having that didn't stop me climbing to the top of the Tower of Pisa last May. Life is what you choose to make it. I do not take pred either. X

Agoodlife
Agoodlife
in reply to Nyreedw

What other meds do you take? How are your other organs doing?

Nyreedw
Nyreedw
in reply to Agoodlife

All great. Had pre op last week for my hip and I'm absolutely fine. I was on sulphasalazine mtx and plaquenil for 15 years now for past 6 years Humira and mtx. No side effects whatsoever with any x

Agoodlife
Agoodlife
in reply to Nyreedw

Then there are Those that never needed meds at all and an immune system and it was not touched by them.Then you were one of the few lucky ones,in my view 😊

Hezekiah
Hezekiah
in reply to Agoodlife

Agoodlife - I really don't understand your reply to Nyreedw at all. You couldn't perhaps re-visit it and maybe amend it to be more readable/clear? (Sorry)

PS I guess you are aware of the More "button" which allows you to change /edit posts?

Agoodlife
Agoodlife
in reply to Hezekiah

I am sorry if I have mixed things up😟I feel I am learning though. I would gladly try to answer the question I have failed on😨Tried to find it but couldn’t.

Hezekiah
Hezekiah
in reply to Agoodlife

Agoodlife, I was referring to this reply (see above) "Then there are Those that never needed meds at all and an immune system and it was not touched by them.Then you were one of the few lucky ones,in my view 😊 ". I don't understand what you are trying to say.

Agoodlife
Agoodlife
in reply to Hezekiah

I am really trying 😰 believe me! May I try again when I’ve slept on it. My brain energy is nearing zero, ?

I have too

What is it you're attempting to glean from all the replies you've had Simba? Just interested, no hidden agenda. Do I take it that it is for your own info?

Just to see the slow process of treating MY RA without RA meds.

KittyJ
KittyJ
in reply to Agoodlife

I don’t understand how knowing we have all taken meds on diagnosis helps you to see the slow process of treating your RA without meds Agoodlife? You have only asked a few people questions after their reply, what about the rest who replied?

Ah, I see. Though not too sure how others responses has much bearing, those who are taking & have taken cDMARDs & bDMARDs since diagnosis, only saying from the perspective of you not being newly diagnosed really. Unless you feel you've explored all avenues & you're in the unfortunate position of needing traditional meds now. Anyway, if I am understanding correctly I’m sorry as I know how strongly you felt about traditional meds, deciding to choose a "less toxic" route initially & tried minocycline, diet, supplements & vitamins. I hope you aren’t needing to throw the towel in?

Are you still taking LDN?

No longer Minocyklin. A tetracycline that can in my view be used sporadicly to kill certain gut bacteria.Otherwise too many side effects.Take Doxycycline 1-2 times a year.(low dose 50mg))

LDN certainly helped me certainly helped me with my pain and sleep.Helped. Me get away from anti inflammatories.At present I do not use It.

I suppose any antibiotic can could have undesirable side effects long term, used regularly to treat RD. Obviously if all other meds have been considered/tried without success & they're the only option then that's a different story. It's opting to take them rather than meds which are known to work well on RD I don't understand. We're bombarded with info (rightly so I think) that taking antibiotics too often can result in them not being effective if genuinely needed to fight a possible life threatening infection.

I'd be interested to know why you don’t take LDN anymore Simba. Only from the point you discussed it regularly here & often suggested it as something for members to consider as alternative to traditional meds.

I don’t know if you're aware that, even though you take doxycycline infrequently, like minocycline it is also a tetracycline?

I know it’s a tetracycline but has less side effects and has shown t have an effect as well on RA together with low dose Pred that I’m still forced to use.. My stomach reacted t LDN. This is why I have a pause. This is me not everyone else. I have less pain and don’t need help with sleeping, with meds.

I was diagnosed with RA shortly after my 21st birthday and started on hydroxycholoroquine straight away. It didn’t work and I was started on MTX around 5 months later. I’ve now been on MTX consistently for almost 10 years. Due to my age, the fact I had a full body bone scan that showed inflammation absolutely everything and very high inflammatory markers, I was started on treatment immediately. Evidence shows that early treatment means a higher chance of remission/reduction in disease which means you can reduce medications in the long run,

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