Advice re treatment: Hi all, new here after being... - NRAS

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Advice re treatment

Mia2019 profile image
39 Replies

Hi all, new here after being diagnosed with sero neg RA in April - this was after 2years of being told I have fibromyalgia. My joint pain is in my right wrist only which apparently is very unusual. First consultant suggested I go straight onto Methotrexate which seemed like a gigant lead as I wasn’t even taking pain killers at the time! I got a 2nd opinion and my current consultant gave me a steroid injection in the wrist which sorted out the stiffness / pain pretty much immediately. That was in April. Now pain is starting to return and I’m also very tired a lot of the time..some days better than others. Going back to see him again in a couple of weeks to discuss treatment options and I know he will want me to go on to Methotrexate which scares me stupid. I wanted to try Plequenil but Dr suggesting we might miss ”window of opportunity” as takes too long to work and he also says people who are treated with Mtx from the start do better long term. I’m really torn - want to give myself best possible chance of remission but at the same time terrified on short / long term side effects of these very strong meds..it’s hard to make the decidion to take them when I don’t even need painkillers to manage day to day..not taking anything currently. Any advice? Any good eperiences with Methotrexate? When I asked my Dr what he would precsribe if it was his own family he was treating, he said they would already be on Mtx...

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Mia2019
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39 Replies

I’m on methotrexate I’ve had no problems. It worked for 2 and half years now I need something else. Before I was diagnosed I rarely had any pain just stiffness and swelling but it was the fatigue that really got me. When I started methotrexate and things settled down the damage done was very evident

Mia2019 profile image
Mia2019 in reply to

Thanks! My main concern is lowering my immunity..have you found that you pick up more colds, bugs etc? I have 3 kids and work in an office!

in reply to Mia2019

I’ve been really lucky just one really bad chest infection in the Ist 6 months then nothing of significance since . Before diagnosis I had glue 3/4 times a year now know it was symptoms if RA.know the difference now.

dembonesDAMNBONES profile image
dembonesDAMNBONES in reply to

You had glue 3/4 times a year?

Do your family suspect you're a secret sniffer and how much did you put in the bag?

Yeah, yeah I know it was a typo, but it's just gone two of the clock, my window's open with a high wind out there and I think the elemental weather got into my head, so I'm having a mad moment.

Right, time to prowl among the other comments, see if I can't find more stuff to make me chuckle. Lol.

Mia2019 profile image
Mia2019

Thanks! That’s encouraging :-)

charisma profile image
charisma

Hi Mia, welcome to the group! If active RA shows eg on an ultrasound scan, with erosions, it would probably be best to hit it with MTX to damp down activity and prevent long term damage.

I have had MTX along with Hydroxychloroquine but my diagnosis is an aggressive case of double seropositive RA ie Strongly positive anti-CCP RA.

Maybe a few seronegative people with mild symptoms can reassure you more. But it seems you would be on a low dose of MTX is prescribed.

But your Doc should discuss it further and answer your questions. That might do much to help you decide for yourself what is best. At least you are getting offered treatment, unlike many seronegative people. That is great.

Mia2019 profile image
Mia2019 in reply to charisma

Thanks! Yes I think I have to go with what Dr has suggested and hope for the best..don’t want to get any worse!

Dobcross1 profile image
Dobcross1

Hi Mia, I dreaded going on MXT and really did not want to take it but I was in pain and, in the end, it's working for me. Although I'm not where I want to be I am getting there now. I use the injections which don't give me side effects as the tablets did. From what you've said it sounds as though you would be on quite a low dose to start. I completely understand how you feel as I was exactly the same but it hasn't been the nightmare I feared it would be and I'm 90% better than I was this time last year. Good luck whatever you decide.

Mia2019 profile image
Mia2019 in reply to Dobcross1

Thank you! 😊

dembonesDAMNBONES profile image
dembonesDAMNBONES in reply to Dobcross1

Do you inject yourself or is it administered by a nurse.

I have a diagnosed phobia of needles (have to have a general for dental treatment), so wouldn't be capable of self treatment.

FunBalloon profile image
FunBalloon

Hi I'm seronegative and only had some problems in my hands and feet when I was diagnosed. I was put on mtx and I've been injecting it for 5 years. My disease has progressed unfortunately however I'm certain that I would be in a worse state without the mtx. It's good to take it now before you really need more aggressive treatment

Mia2019 profile image
Mia2019 in reply to FunBalloon

Thanks. My Dr want to put me on injections too..

FunBalloon profile image
FunBalloon in reply to Mia2019

They are very easy to do. I started off on tablets and they made me feel very sick. I can cope with the nausea from the injections much better. So don't worry

Hessie5 profile image
Hessie5

Hi Mia2019 - welcome to a great community. I was diagnosed sero positive - I was put on mtx, but was somewhat in denial as only minor aches and pain I was confident remission soon. However, not to be. RA can quickly take hold - remember steroid injection also mask.

I was like you, never took a paracetamol, never smoked or drank, I thought I was pretty healthy. So RA was a blow as I didn’t want to put poison in my body. Now, if I didn’t take the meds I would never be able to function, letting RA run rampant destroyed my tendons in my ankles/feet. It takes over - so speak to your Rheumy and weigh it up. It’s your body and your decision all said and done. We are all different just try not to rule out drugs if needed. I hate taking mine but for now I must.

Re lower immunity yes - I up my cocktail of supplements.

All the best. Hessie 😌

Mia2019 profile image
Mia2019

Thanks Hessie - good advice!

Ruth12345 profile image
Ruth12345

I have been on methotrexate for over 2 years, also on sulphaselazine and hydroxychloroquine plus pain relief daily and other meds. I too was very resistant about taking meds. I had a hate hate relationship with the meds and constantly battled in my head. I now realise that without them I would be much worse. Would I rather not take them...Yes...do I want to function to best of my ability.....Yes..... So I take the meds and am grateful to function. I have had few side effects which have settled down. It is a hard journey and has been said you decide what you want to do after discussing with your rheumy. I am careful and dont put myself in a position (knowingly) where I may catch something. I go out. I always have hand gel and use it before having coffee out or when ive pushed a supermarket trolly etc. I have had very few infections since having RD. We are all different and I wish you well. This is a great forum so maybe see you again.

Mia2019 profile image
Mia2019 in reply to Ruth12345

Thank you! And good advice re hand gel - will make sure I carry it with me once I start treatment.

AgedCrone profile image
AgedCrone

Being practical if you have been diagnosed with RA .....the sooner you take a Dmard the better.....the damage to your joints needs to be controlled. You can’t keep having steroid injections & it’s much better if you don’t get hooked on oral Prednisolone

You will read all sorts of negatives about Mtx, but for thousands of people it is a very successful drug - protecting joints & enabling them to live a pain free life....you could be one of those lucky people.

Not everybody succumbs to every bug going when taking Mtx...I took it for years & had no adverse side effects....& 20 years after diagnosis I have needed no joint surgeries....& I honestly think I didn’t catch any more bugs than I did before taking it.

Speak to your rheumatology nurse...she will explain the possible outcome of uncontrolled RA.

Mia2019 profile image
Mia2019 in reply to AgedCrone

Thank you! Glad to hear it re infections! 😊

Cheylann profile image
Cheylann

I didn't know they treated fibromyalgia with MTX. I like you have never received a proper diagnosis. They thought I had psoriatic arthritis and prescribed MTX and then changed their minds about it being arthritis. Steroid inext ions worked well for me too.

Thank goodness I never took MTX as it's such a hard immuno suppressant and unless you have a definite diagnosis where MTX is proven to help I would not take it. I

Mia2019 profile image
Mia2019 in reply to Cheylann

Thanks. I have zero neg RA diagnosed - not Fibromyalgia. The Dr first thought it was fibro and fobbed me off for 2 years sadly!

Osc101 profile image
Osc101

I am on the maximum dose of MTX (injection) and have not had any more infections. I have 2 children and work in a school. 😊

Mia2019 profile image
Mia2019 in reply to Osc101

Thanks! :-)

Pawz4me profile image
Pawz4me

I'm sero positive and currently on a fairly massive amount of medication (methotrexate, leflunomide and Enbrel) and have almost no side effects. Sometimes the methotrexate will cause me to be just a bit draggy, my stomach to be just a bit off or rumbly, the day after I take it. It's nothing that interferes with my ability to function.

Yes, methotrexate and other RA medications can cause worrisome or even debilitating side effects. But many of us take them with little/no problem. So I wouldn't assume a problem before trying. And if a problem occurs--you can always stop the medication.

I've always had a very high pain tolerance. But the pain we feel at any moment is only part of the story. With RA treatment the goal isn't only to relieve current pain, but to prevent irreversible joint damage from occurring.

Mia2019 profile image
Mia2019 in reply to Pawz4me

Thank you so much - it’s good to hear positive MTX stories! 😊

pomagranite1010 profile image
pomagranite1010

well I dont have RA but I do know it can cause permanant joint damage (like when you see people with their fingers all curled up etc. ) you dont want to mess with that one. I also personally know someone who has it and hates the meds for it, he seen a naturopath which actually did help a lot . He was doing great, but fell back into old habits and now right back to square one.

Mia2019 profile image
Mia2019 in reply to pomagranite1010

Thanks - have tried lots of natural treatments too.

Lamc profile image
Lamc

Hi, I've taken Methotrexate for a couple of years with no side effects (like you I really didn't want to take it, but I'm a nurse and have seen what RA can do so eventually got on board with it!) I work in a hospital and have also travelled in India and had no issues with infections. My advice...healthy diet and keep moving! 🙌

Mia2019 profile image
Mia2019 in reply to Lamc

Thank you! Yes I’m determined to keep active even on days when I struggle with fatigue. I find getting out for a walk every day helps!

Nanna71 profile image
Nanna71

I am on 25 mgs MTX tablet form, sulfasalazine tablet form, prednisone tablets and have no real issue with side effects. A close friend of mine has had RA since a child and has badly deformed fingers, toes, and has had ankle fusion surgery plus 2 hip replacements plus extra surgery on the feet to be able to put shoes on. She has been without medication for many years because of having children and being under medicated and wrongly medicated. What I take from this is 'no medication' causes unbelievable health problems that Dmards actually claim to slow down and even stop.

My diagnosis for RA was November 2018 and I hope to escape the deformities.

Mia2019 profile image
Mia2019 in reply to Nanna71

Thank you! It’s good to hear that even with so Many different meds the side effects are not that bad. Your friend’s experience certainly puts me off delaying meds any longer! Next appt 4th September so will chat to my doc then about getting started with Mtx. Thanks again!

Mmrr profile image
Mmrr

I'm sero negative too and was diagnosed after several years of being told I had tendonitis/depression/ headaches. I was started on HDQ first with no effect, then SSZ then mycophenolate mofetil, by the time i got to MTX things had got bad. If the rheumatologist think MTX is best I would take it.

Mia2019 profile image
Mia2019 in reply to Mmrr

Thanks and sorry to hear you had to wait so long for the right treatment. Hope MTX working well for you now.

JEM95 profile image
JEM95

I’ve been taking MXT and hydroxychloroquine along with Naproxen etc for six years. I’m sero-negative.

MXT has given me back my life - I hated taking it and struggled with side effects for the first 6-8 months. But am fine now.

I’ve recently tried to reduce it (on two occasions) and wow what an eye opener. It is obviously doing its job as I felt so bad when it was reduced.

I’ve recently come off Naproxen and have different aches and pain like never before, so I’m probably going to try Arcoxia instead.

Stick with the MXT - it can take a while to make significant impact - hope it’s as good for you as it has been for me x

farm123 profile image
farm123

The disease progression is so different between people and not every treatment will suit everybody. You will be closely monitored with blood tests to check your body's reaction to the MTX. The infection threat is there although many people are not overly affected but YOU need to take more notice of your body and be ready to take action sooner than perhaps you would normally and it could take a day or two longer to get over colds etc compared to others. Being sero-negative does not always mean the disease is any less aggressive or it will not spread to other joints. Also bear in mind the MTX will not be a quick fix as it can take up to 6 months to work fully.

Hi and welcome to The Halfway House of Horrors.

Bottom line...you've been diagnosed with an autoimmune disease. :(

The big guns are employed to supress your immune system, thereby alleviating it from stabbing you in the back, as it's wont to do, but the result of the meds knocking seven colours of the smelly stuff out of your immune system leaves you open to infections.

No getting around that, sadly.

As others have wisely advised, take precautions around anyone you even suspect of being unwell, as it's you who will suffer more severe, longer term consequences.

A working environment poses problems, obviously.

A sharply pointed stick, jabbed near their faces, should help to reinforce your concerns to any disease-ridden individuals. :)

Kids, eh?

Hmmm, let me go down into the crypt and check the archives.

I may be some time....

Yes, as I thought, there's only one course of action and your very life depends on following it to the letter.

Clingfilm the little darlings, head to foot.

Don't forgot to leave gaps for their eyes, mouth and nose.

You don't want them knocking things over, as they fall, gasping for breath.

Some busybody would notice them missing and the last thing you need is Social Services on your case! :(

Oh, and leave gaps for their tiny ears, too.

They'll need to hear your cries of pain, chundering battles with nausea and your gutteral orders to conduct them in the day to day business about the home.

Kids catch stuff, what can I tell you?

Basically, joking apart, try not to catch things, don't neglect your meals, supplements included, rest whenever you can, trying not to over-exert yourself, when you can't and be very, very kind to yourself.

I'd also advise lashings of chocolate, but, personally, I find it, along with coffee, tends to exacerbate my conditions.

Others maybe luckier and you might be one of them, in which case I suggest emotionally blackmailing those around you by telling them your Rheumy has recommended it as precautionary treatment, thus ensuring you get dibs on any going via the guilt trip route. Lol.

I'm considering MTX next myself.

Bound to be a bundle of laughs. :)

Considering going on MTX myself.

Three months of churning?

Yay, something to look forward to leading up to xmas.

Better scrub barf bags off my wishlist, it'll be too late. :)

Dspooky01 profile image
Dspooky01 in reply to dembonesDAMNBONES

I just kept a bucket by the bedside, didn’t actually have to use it though!

dembonesDAMNBONES profile image
dembonesDAMNBONES in reply to Dspooky01

I'll buy one to match my decor. :)

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