Interested in your med journey with your med journey ... - NRAS

NRAS
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Interested in your med journey with your med journey with RA.

Agoodlife
Agoodlife
50 Replies

When did you start with Mtx, how old were you. How long did you take it?Did the side effects stop you?Have you taken biologics? Which for how long During your illness have you had surgery? Have the meds helped,if how and which way?A bit bewildered ?

50 Replies
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KittyJ

That’s lots of questions 😊

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Stayloose

I think that would be an interesting survey but so many variables! Most research is very narrow and specific. You could get as many different responses from the over 65s as there are over 65s.

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Agoodlife
Agoodlife
in reply to Stayloose

This question is relevant in my view since during my time following I have been told once and once again that those having erosion and symptoms and joint replacements were because these new meds did not exist . Then I read all the more often that young people have a hard time with these meds and have eventually come to the same replacements not only this but other problems caused by the meds. I have also read of studies that say that mtx is not a effective on young people or on elderly.So why are they pushed on these groups ? Perhaps they in fact prolong the illness, minimize suffering but still keep young people working getting money flowing? It would be interesting having research running along side people taking Ra meds and those not taking them.One result could very well be that this brings in more money but does it really bring less suffering?

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Stayloose
Stayloose
in reply to Agoodlife

I guess in the NHS money will always be a huge factor. NICE recommend a protocol of who gets what when. Hospital don't have to follow it but usually do.Even if it was shown that starting with biologics first was better, the bill would be huge so even if it saved money long term it's unlikely to happen. The DMARDS are more of a known risk. With Newer drugs less is known about long term effects.

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Bunty62
Bunty62
in reply to Agoodlife

Drugs certainly made things worse for me (apart from steroid injections) into muscle. I've opted now for IM steroid only when needed and no other drug. I'm hoping I won't need any more shots. I'm certainly much improved and only take paracetamol now. I was previously taken shed loads of opiates.

I seem to have faired rather better than some folks who have stuck with conventional medicine. Perhaps I'm just fortunate. I do still have a sneaking suspicion that I'd be in a worse place if i stuck with meds. I'm quite sensitve to drugs.

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Lyndy

Hello... started mtx after about 4 years on other meds. Struggled with nausea and‘hangover’ symptoms although it did work. Got on to enbrel alongside a small dose of mtx . Then I got cancer. After chemo I couldn’t take even 2.5 mg of mtx. Now on Retuximab and supposed to take 7.5mg mtx alongside... most weeks I can’t face it. xx

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nomoreheels

I started MTX in 2009 when I was 49, a year after diagnosis & I'm still on it. Obvs tolerated side effects so haven't stopped me. No biologics, no surgery, not on joints anyhow. Yes, MTX has helped, as not having biologics or surgery proves. Unsure what you mean by if how & which way.

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girli1969

I’m 50, diagnosed in my early thirties, took hydroxychloroquine sulphate only for many years. Methotrexate added 3 years ago (increased symptoms following surgical menopause). Changed to injection methotrexate to reduce nausea. Fatigue is ongoing symptom, sometimes very debilitating, but no surgery.

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Cwendyn

Mtx injections from day 1 4 years ago. No side effects. Took along side hydroxy which did nothing. Then sulfasalazine which did nothing.

Little improvement over 2 years and taking prednisone low dose so moved to biologics October 2018. Came off Pred at last. Much better. No operations. No side effects.

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Amylau

I'm 24, diagnosed at 16 with ra only in my right knee which fills with fluid like a balloon. Took methotrexate as my first medication, had nausea and migraines so stopped taking it. Tried sulfasalazine and hhydroxychloroquine, didn't work, then onto biologics. Humira for 6 years then stopped working. Tried etanercept (Enbrel) but found them so painful to inject and it didn't work. Tried humira again But didn't work. Now I'm on tocilizumab (Actemra) and it's on and off working. On the waiting list for a synovectomy to see if it will help.

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Bacharia
Bacharia
in reply to Amylau

Hello Amylau,

I believe it's unusual to have RA in only one joint. Coincidentally, mine started in my right knee, but spread to other joints. All those joints are very good now, but the right knee, although improved, just refuses to get completely as it should be. Does your swollen knee ever return to normal?

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Amylau
Amylau
in reply to Bacharia

Hello! Yes it goes back to normal if it's drained and given a steroid injection but it then usually quite soon fills with fluid again!

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Hisue
Hisue
in reply to Amylau

I also started RA with one knee joint swollen & huge baker’s cyst in back of knee. Sudden onset RA- totally immobilized one morning.

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TheBoys

Hi..see my separate post but i finally got onto MTX.last june i think. 《Three,once a week)To be taken with one hydroxychloroquine daily.

It was increased to four ,once a werk in October... since then have had negligible RA pain..but increased mouth ulcers and three bad cold sores. Terrible fatigue and anxiety/morbidity obsession thats frightened me. I ve also had about four bad bloodshot eye episodes and have been diagnosed with blood pressure. Since the mtx, i ve become lethargic as well so am prone to eating more cakes and sweets.

Now have decided to take a break ftom all the meds and lose weight. To see what that does.

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Angjoplin

I'm 40 and was diagnosed in my 20s. I've had mtx, sulfasalazine, 6 different biologics and waiting to start jaks. In all those years non have worked and completely controlled my RA. I now have permanent bone damage and they are talking about possible replacement.

For me starting biologics earlier probably wouldn't have made any difference because they can't get one that works or I'm not allergic too.

Would I still be here working if I hadn't had any of these drugs? No. I think I would be completely disabled.

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lucymead

Hi I started MTX when I was 70. had weekly injections along with Sulfasalazine daily and one folic acid day after injection. I was on this regime about 7 months. I felt better and had less swelling, The Problems started about 8 weeks in I was dizzy and falling over all the time. The Rhuemy stopped all meds and my GP did bloods my body had been stripped of FOLIC ACID. I had to take high dose for6 months to get it back to normal. I will tell you about other Drugs another time

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Hezekiah

Hi, Agoodlife.

I'd be interested to hear more about your experience too (when were you diagnosed, which meds have you taken, joint damage,what age are you now, etc) if you were happy to share this info.

I guess other people may know it already from your Simba1992 posts?

But you might consider whether it might be worth putting some of it on your profile??

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oldtimer

Unfortunately it is a balance between the best care and what can be afforded...

And Rheumatoid Disease is a different condition in so many people. Until it is sorted out which part of the immune system is causing the end result of damage, mainly to the joints, but to other areas as well, there will be no rational treatment. At present it is trial and error, and until the correct treatment for that person is found, damage continues. And then, the body may respond by changing, and that drug no longer works.

So, at present, it is impossible to tell if current protocols are the best policy, but it's the best we've got until new research helps to make better decisions.

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poemsgalore1

Diagnosed with RA and Sjogren's Syndrome 1987 aged 36

started MTX 1999

dose increased after 1 year

changed to injections 1 year later

Leflunomide was added

Stopped MTX 2012 as started chemotherapy for cancer

kept Leflunomide on

diagnosed with Vasculitis

High dose pred started for Vasc

restarted MTX for Vasc

Got Osteoarthritis and Osteoporosis 2017-18

Lots of surgeries but not for RA.

Now can hardly stand or walk, aged 68.

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J1707

Diagnosed aged 48 now almost 53

On methotrexate tabs 15mg till July 19

Increased to 20mg then changed to 20mg injections September 19. No sickness but lots of bloating and reflux worse Headaches and bruising on 20mg tabs to begin with.Hangover the next day on injection.

September 17 tried hydroxychloroqine.... allergic

Sulfasalazine in December 19 ..... Allergic.

About to start etanercept or bio similar in January 2020

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Agoodlife

I think you are right in I that RA is different in différèrent people.But l also think that as the Ra meds as the same time as they take away symptoms they hurt the immune system causing new problems that require new meds.I think the meds are really not helping the immune system but making it HARDER for the dysfunctional immmunesystem. This way research you could be seen going in the wrong direction( ?)

You are also probably right in that this has carefully been calculated which is more profitable.Money always speaks the laudest . The individual is no longer what medicine is trying CURE.Not only this but patients and doctors are forcing patients to follow gold standards.

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Hezekiah
Hezekiah
in reply to Agoodlife

That's an interesting post Agodlife. I doubt anyone would dispute that RA/RD comes in a 1,000 different varieties so that different meds seem to help different folk, and dietary changes can benefit some folk but not others.

It might also be true to say that the medical profession is only just beginning to understand a few minor aspects of the immune system (or should that be systems? is it possible that every one's immune system is different depending on hereditary factors, genetic history, life experiences, current environment?).

I think you may be right in that for some folk their meds could potentially further damage/upset their immune system though that would be an unintended consequence.

When you speak about gold standards, what do you mean?

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Agoodlife
Agoodlife
in reply to Hezekiah

Most countries in Europe follow recommendations for what meds should be given patients with a certain illness. And in what order. In France Mtx is a must if you want biologics. Other rules are the time and the seriousness of symptoms and so on. These are gold standards.I wanted to have joint surgery but could not have it because I hadn’t had Mtx.

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orange33

Diagnosed in middle 40s,

Had wonderful Doc and RA nurse who really took an interest in RA.

On Mtx straight away. Small dose, but very affective.

Fast forward now in 70s Periferal Neuopathy has kicked in.very severe so much need walker and buggy!

Did RA cause this or long term use of Mtx??

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BoneyC

I was dx. 1971 age 6. Started MTX orally age 16-18 in 1980's. Switched to injections about 3 years ago. Virtually no side effects and best drug for me.

Tried Humira & Rituximab neither worked, lots UTI's with Humira.

Lots of surgery, THR, infected THR, Girdlestone's procedure, THR other side, neurosurgery - laminoplasty and fixation C3-C6. Seeing surgeon for ankle replacement again soon and been seeing elbow and shoulder surgeon annually/biannually since 1998 but not had surgery yet.

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RAreyna

Tried sulfasalazine and my liver got inflamed. Switched to mtx and got better, but still having lots of flares. Switched to 25mg mtx injections once a week and 2mg of folic acid daily. That handles a lot of my pain and tiredness, though I still have what I call 'mini flares' where I am truly exhausted and joints swell & hurt.

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Bunty62

Diagnosed at 49, but think it had been rumbling long before that. 2 new knees. Started sulfasalazine (awful reaction) actually made pain worse and caused other issues. Tried leflunomide which did nothing. Then methotrexate both tablets and injection. Also bad side effects. Started benepali...ineffective and made me fedl worse.

I've also had quite a few intramuscular steroids at least 3 times a year. I have now refused all meds apart from occasional steroids. I'm perhaps one of the few who does better off drugs. The side effects and potential health risk of the drugs is not for me personally.

I can still feel the arthritis, but I'm not as crippled as I was. I get tired easily, and have the odd fall, but a huge improvement overall.

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Bookworm55

I started on mtx and hydroxychloroquine at diagnosis 4 years ago at the age of 60. I was also on prednisolene then as my RA had started very suddenly and painfully. Tolerated mtx (Oral) up to about 12.5 mg which I’m still on as any higher gives me side effects. Was on hydroxychloroquine too until 18 months ago when it was found to have affected my eyes so stopped. In June last year new consultant started me on sulfalazine (4x500mg a day) and this has further reduced pain and swelling. Have to say that the meds calmed the symptoms right down and that happened within a few months of starting in Feb 2016. I hope it lasts.

No biolgics or surgery. Still get very tired.

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JFlay

I was diagnosed a year ago aged 58 but had symptoms from my 40's really.

I was on MTX tablets for the first six months but just couldn't tolerate it, gut problems and migraine type headaches.

I've been on hydroxy alone for six months now, it's not perfect but it's working. I'm hoping that will be all I need to take! As far as I know I don't have any joint erosions but recent ultrasounds of my feet showed inflammation, my bloods are always 'normal' though apart from highly positive RF and high ESR.

It's a strange illness!

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Agoodlife

Yes it is a strange illness but it is however possible to figure out some things about how certain things may apply to you. If you are male you probably should keep to the lighter meds. Because you usually have an easier time with RA. If you have gut problems you should keep away from Mtx. If you are young Mtx is not as effective. If you are over 65 when diagnosed with other health problems immunosuppressants not a good idea. The elderly do not react as well to Mtx. I have found several other things that keep me away from this me. This of course are only my réflexions.

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ragurl

Great question!

Diagnosed at age 20. I am 50 now.

First few years:

Started on plaquenil and Motrin 800. Added Imuran.

Stopped plaquenil.

Added prednisone, Imuran and Motrin 800.

At 29 years biologicals came out.

I started on Embrel ( big bruises until I learned to inject myself better) got of Imuran and prednisone. Enbrel allowed me to go back to school. The pain was manageable.

Added prednisone periodically for flares and took Motrin 800 daily.

At 37 years old my stressed increased greatly with school and Embrel was not as effective. Two things contributed to this in my opinion first I was aging and my stress level was so big.

Rheumy changed my to leflunomide 10mg prednisone 6 mg then we added Humira. Worked great allowed me to complete my degree and become a teacher. I taught for 10 years and at 48 I got severely sick due to no immune system from medication. Stopped all meds.

Went on Celebrex and Xeljanz.

A nightmare, worse than ever the disease progressed greatly. My hands are deforming.

Went back to Humira, prednisone and Leflunomide.

Pain is manageable my life is quality. I am working full time again and grateful.

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Nuttyshirlz

Hiya I’m 54 I’m on Mtx being on it nearly 3yrs with the normal side affects and sulfasalazine also got psoriasis and Psa and OSA. I was told I had 3yrs ago but had pains for years I just put it down to over working lol. Had an accident on my motorbike about 15yrs ago

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Zoppy89

Hi!

I was diagnosed at 24 and am now 30.

As soon as I was diagnosed I was started on hydroxchloroquine, sulfasalazine and MTX tablets. Suffered bad side effects of sickness and rashes with the combination of all three but under rheumys advice carried on.

Luckily the RA went into remission within 2 years and has been in there ever since.

Managed to drop the hudroxchloroquine, and swap onto MTX injections.

Generally don’t have much pain and still manageable so hopefully it continues this way.

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Agoodlife
Agoodlife
in reply to Zoppy89

It May very well be that your immune system has been strong enough to overcome the negative effects of certain meds or needs or need weaker ones or in fact changed the immune response more confused.( Trieing to to find a new strategy).Then you are given new meds hoping this will help.Making the immune system even more confused. The immunosuppressive meds are not helping to correct the situation.

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Hocuspocus123s

I was diagnosed in 2014 at 58 been on mth

Ever since , also on folic acid and now benepali injection, I’m in constant pain and tired, have gradually got worse over years

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Agoodlife

So your immune system has not been supported by by the meds and the illness has been continuing and only perhaps arrested the bone erosion (?).

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Biofreak
Biofreak
in reply to Agoodlife

It is my understanding that the RA meds are designed to suppress the immune system not support it because it is an overactive immune system attacking your joints which creates the inflammation that damages your joints. so if a drug was developed to support your immune system at the same time it would negate the intended effect. I agree that not all the meds suit everyone but some meds work for a lot of people at least some of the time. Its not ideal but its all we have got.

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Agoodlife
Agoodlife
in reply to Biofreak

I among many knowledgeable scientist see RA as a result of a defect immune system where it can no longer fix the normal metabolic problem.In other words the inflammation continues and cannot be stopped. The immune system is NOT strong but WEAK. The immune suppressive meds WEAKENS even more the malfunctioning. Immune system. There are such a myriad of factors that in combination can help certain symptoms away.They do not cure but do spread a lot of destruction in the body.How our bodies cope is totally individual.

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Biofreak

So until we can find a cure we are stuck with what we've got. I know my immune system has malfunctioned since I was 21 when I developed type 1 diabetes. The only thing available then and now is insulin. I don't expect a transplant so all I can do is carry on injecting insulin. I think of my RA meds in much the same way. I think most medications can create or contribute to other conditions but at present unless scientists come up with alternatives we, as patients, follow medical advice unless we choose not to and prepare for the possible consequences. Just my opinion. I'm not trying to convince anyone.

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Agoodlife
Agoodlife
in reply to Biofreak

We have no way to know how different meds will effect our individual situation. This is not the target for research. The target is to find new meds that will for a while balance our situation and take away symptoms. A dysfunctional immune system in different AI diseases has different hormonal metabolic dysfunctions that have been thoroughly explored.Giving Insulin, is one way to replace the missing part, in RA we are shooting blindly. Depending on the individual situation there are different treatments, because lots more is known. But still lots more to learn about ways less toxic.

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Biofreak

That's what I meant when I talked about scientists finding alternatives. Alternatives that are less toxic.

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Spoofy3

Hi,I started methotrexate 12 years ago I still take it daily.It has helped somewhat.I took the Humira Injections twice a week for 2 years.It gave me severe migranes,nausea,and muscle weakness right away that continued to get worse.I was diagnosed with Chronic Myloid Leaukemia shortly after stopping the Humira,my Oncologist believes it caused it.Please consider the possible side effects before starting a biologic.I hope your journey will be different than mine.Best wishes!!!

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KittyJ
KittyJ
in reply to Spoofy3

You take mtx daily ?

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Agoodlife
Agoodlife
in reply to KittyJ

I have NEVER taken Mtx and from what I have learned from my 5 years of research I would never risk it .Taking into consideration my individual situation.

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KittyJ
KittyJ
in reply to Agoodlife

The reply was to Spoofy.

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Agoodlife
Agoodlife
in reply to KittyJ

Sorry

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Spoofy3
Spoofy3
in reply to KittyJ

Hi KittyJ,I have taken methotrexate daily for about 12 years now.I have RA,Systemic Lupus,Fibromyalgia and now Chronic Myloid Leaukemia.It seems as if all I do is go to the Doctor,now with each new appointment I just pray that everything is in check.When your auto immune system starts failing it seems like everything goes downhill from there I am trying to eat better and get plenty of sleep when I can .My heart goes out for everyone in our situation,it's hard to describe the pain,chronic fatigue,sleepless nights and mental state these diseases plague our lives with.This discussion forum helps me to relate to others.I am 54 with 3 adult children,and 4 Grandchildren I wish I had more energy to spend with them.I have been blessed with a good family and I am sure that God has a plan for me.I pray that I can be a blessing for others.I will keep you in my prayers🤲🏼

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KittyJ
KittyJ
in reply to Spoofy3

Thank you for explaining Spoofy, I’d just never heard of anyone taking it every day.

So sorry to hear that you have RA, Lupus, fibromyalgia and Leukaemia too now. I hope everything continues to stay in check. Having a good family is a blessing. 🤗

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Agoodlife
Agoodlife
in reply to Spoofy3

I am very sorry. Take care. Simba 1992

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