Is it time to try a new med?: Hello everyone, I've only... - NRAS

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Is it time to try a new med?

Heraripley profile image
20 Replies

Hello everyone, I've only been here a few days but finding it really good to hear other people with RA, and it is certainly making me consider my own experiences.

I was diagnosed a couple of years ago but had the disease for more than 6 years.

At first I was resistant to diagnosis - partly I believed I could cure it with 'alternative' medicine and partly because I was in an abusive relationship where I was made to feel there was nothing really wrong and it was all in my mind.

Thanks to a very supportive GP and rheumy nurse, and to the fact I escaped the relationship, I have been on Sulfasalazine for just under a year.

A lot of the time I am fatigued but I'm learning to manage it through pacing and my joints are very up and down. As I have two small children that impacts it the most, so the less sleep I have the more pain and inflammation I get. And I have also been very very depressed, which i manage now with SSRIs.

Now I know everyone is different, in circumstances and in how the disease effects them, but I've been really surprised to read that a lot of people on here still work. There is no way in this state that I am capable of working, and although I would say the meds help a bit, I had just assumed that constant fatigue and pain and inflammed joints was my new normal.

Tbh the last time I saw the consultant, he mentioned methotrexate. I'm really resistant to taking it because I know how hard the side effects are, and being a single parent, I just can't cope with things getting any worse. But now I wonder if it is worth a gamble of they could get so much better.

I don't know, I'm scared and confused and just letting off steam really. I know none of you can advise me but it feels good to at least express all this to people who have a chance of getting it.

Thanks for reading

20 Replies
Dspooky01 profile image
Dspooky01

Hi,

Sorry to hear about your difficult start with RA, but thankfully you seem to be in a much better place now.

I’m on MTX having increase my dosage and moved onto injections and I’ve had very few side effects. Everyone is different but for me it’s been wonderful. If it doesn’t suit you, you can always come off it!

I hope that you also feel the benefits. Best wishes x

Hello and welcome.

So glad many positive things have started to happen for you.

I did work full time after I was first diagnosed and pretty much lived a normal life on methotrexate minimal side effects. I have written many posts on here about my year from hell last year 🙄🙄🙄🙄( went on a bit😁). I don’t like the fatigue my biggest problematic symptom along side stiffness ( I’m quite good with pain) . I’m on methotrexate injections now and I much prefer them . I honestly feel they work better than tablets and people on here say they cause less side effects. I’m not scared of methotrexate as we are so well monitored and as you already have a supportive Rhuemy team ( your one of the lucky ones) they will look after you. Listen to your team they can make life better for you. I have had problems with drugs and am now on methotrexate injections 20mg and just started a Biologic.

Me personally I will try these drugs to see if I get any benefit rather than just sit back and cope . I want to live and participate in life.

You have made some positive changes already.. this year could be better 😜

Please stay in touch . We don’t always moan 🤗🤗

Azzure profile image
Azzure

Hey your post resonates with a lot of people I would think. I was diagnosed about 3 years ago took sulfasazaline first was on 6 tablets a day big orange things. That wasn’t doing anything for me. After a year then switched to Hydroxychloroquine for a few months which never took effect. I was scared of Methotrexate and it wasn’t until I went for a private consultation that the Consultant said to me you have RA and you should be taking methotrexate. I was in such a bad way and only people with RA will know what I mean. I was crippled in the mornings my hands and feet were so bad I nearly took myself to A&E a few times. This was back in June I work full time and was off work. I started on Methotrexate in September tablets first 15mg but now I’m on 20mg injection. I’ve had no side effects whatsoever. My first 20mg was last week and I did have some nausea a bit like morning sickness but it went. I took my second dose of 20mg last night and I feel absolutely fine. I thought this morning at 9am wow I feel awake not fatigued and in good shape (no stiffness) and I feel it is the Methotrexate doing it’s job. I’m in work and I’m doing well.

There are risks with all different medications we just don’t know do we? I’m just so grateful that this drug is helping me at present. This is only my experience but I hope this can help you decide.

Good luck x

rab1874 profile image
rab1874

Hi there I’m on mtx injections and have been for 3 years now and cope well on them,I’m also on a biological drug called Toxilimunb and this is my 3biologic,I take mine before bedtime so I can sleep most off it off,next day after my jags im a wee bit tired but no more than that,hope you get the treatment fixed out,regarding work I had to leave my work and medically retired 4years ago as I just couldn’t continue and at 51 I made the right decision xxx

Gjkas profile image
Gjkas

I was on Methotrexate a few years ago.

I must admit that they did help my pain,but i had to come off them altogether because they messed my blood up. Was put on Leflunomide but because of the Side Effects i came off them.

My Rheumatologist then tried me on Sulfasalazine ,but they didn't help the pain either..So he put me on Steroids for 6 weeks..I am on a lot of other medications for several different medical problems. So it's hard to find the one that works better. But I know a few people that are on Methotrexate and they say that it's helped them. If you do decide to give them a try, Good Luck. I hope that they work for you..😚.Gjkas

Heraripley profile image
Heraripley

Thank you so much everyone, because of single motherhood I can't respond individually today, but your responses have made me cry, in a good way! It feels so good to have people who get it. I have some good friends in my life but I don't think anyone can understand what we go through unless they've been there.

The idea of being able to wake up in the morning feeling awake and not fatigued is my dream. I think I struggle because before I was ill I always avoided pharmaceuticals and believed in the holistic approach. I still do but it is something that I think is only acheieveable in a different reality, one where as I'll people we would be properly cared for and enabled to rest. It's dawned on me over the past year that tumeric and clean eating alone isn't going to cure me when I have to live as of I was a totally well person, with all the stress that puts on my body.

I also think all the holistic stuff has given.me a phobia of meds that I need to get over. Someone wrote about how monitored we are and that is so true. That's what all the blood tests are for, obviously!!

I feel like having RA is involving me doing a lot of unravelling of my own beliefs and assumptions. It can all be so confusing sometimes because of my.own irrationality 😵

Anyway I'm going to ring my rheumy nurse on Monday and move forward. I will keep.you all posted

Xx

Azzure profile image
Azzure in reply to Heraripley

Don’t worry about responding you have reached out and that is great. What’s important is you get your condition under control. I’ve been through the same doubts etc but I worked on acceptance and it has helped. You want to be well for your children and for yourself, that is the most important thing at the moment.

My friend mentioned to me last year about a lady she cares for who is in her eighty’s and she said she is on methotrexate and she is like a new woman. But my thoughts were I don’t want to take it! People don’t realise Asprin can be dangerous we just don’t know. But today I feel so much better in myself and it has to be the Methotrexate keeping my inflammation under control. You are monitored and I know from experience not a plant diet, not drinking, no sugar will NOT keep this horrible condition away. On Methotrexate day I drink plenty of water and afterwards, and I take folic acid for 3 days a week and I’m ok.

The other thing I rarely drink alcohol because for me I want my liver to not have any extra toxins to deal with. And the pro’s of that no hangovers, no dehydration and my body thanks me for it. If alcohol was invented today i believe it would be illegal like other harmful drugs.

Take care ! X

Gjkas profile image
Gjkas in reply to Azzure

I agree with you about the Alcohol. Its ruined many a marriage and ruined so many young lives. People go on about drugs and smoking ,but you rarely hear anything about the Alcohol until someone gets ill because of it. Then sometimes it's too late to anything about it. Alcoholism is an illness and should be recognised as one. People are given methadone to help them come off drugs. But Alcoholics are not given anything. Except for when they are given a couple of Appointments with Alcoholics Anonymous.

Oshgosh profile image
Oshgosh

I had loads of RA andlupus symptoms,was never diagnosed,just treated piecemeal.

I wasn’t diagnosed until ihad an emergency admission.was diagnosed with. NSIP 4 months later diagnosed with lupus and rheumatoid. Athritis . Currently on Myclophenate,feeling a little better.

Just hoping my liver enzymes dont get elevated .

I understand what you mean about the new normal.

I’m fed up of my new normal,I want the old normal back!,

Sulphasalazine was my first DMARD and it worked brilliantly for me. But nothing stays the same. Now on MTX, with Leflunomide and Pred 5mg daily. I waned to go back on Sulpha but rheumy thought i would be a step backwards.

Ruth12345 profile image
Ruth12345

Hello. I can't say I know what you are going thru because my children were adults when RD decided to join me in my life. However I just want to say from someone who would never take meds I now am on journey to embrace what can help me be the best I can be, which is a cocktail of meds. (I have a love hate relationship with them) I admire all of those of you that have this with young children and especially you with what you have shared. So...all I can say is well done you and there are wonderfull young women on here who will support you. So from a 62 year old diagnosed 3 years ago I admire you and encourage you to take all the support you can from a variety of areas that are available. Do not under estimate how well you are doing.

Lots of support on here and we are here to listen and rant away too.

sensibleshoes profile image
sensibleshoes

Hi think your post sums up what a lot of us struggle with. What is good enough? I’m nearly a year into my RA journey and currently on 22.5 Mtx injections few side effects and the mtx has definitely helped me get back on my feet after quite a few months of pain and fatigue. Rheumatology check up in a couple of weeks and thinking about adding Sulfasalazine to the mix. Feel a bit anxious about this but want to be the best I can so am going to give it a go. I’ve managed to keep working so far and am a single mum to three older teenagers so need to keep well for them.

Mmrr profile image
Mmrr

Welcome, RD can be difficult but your best chance of being as well as you can be is by trying different medications. If MTX isn't for you then you can stop taking it. Good luck with whatever you choose.

Brushwork profile image
Brushwork

Well done for coping with a difficult time in every respect. You will gain strength with every situation you overcome.

Medication, when effective gives you better quality of life. If it controls disease activity you won’t be fatigued, you will not be stiff, you won’t have swollen joints though you may still get some pain. The trade off is the side effects and these are different for everyone.

My approach has always been to do all I can naturally to support my body and add in medication, hoping to find a tolerable balance.

Managing RD takes time and attention but it is doable and you can hopefully, lead a full life.

Talk to your specialists and do lots of research. Stay positive and always have hope.

Xx

vonniesims profile image
vonniesims

I have been on Methotrexate for year and have had no problems. Try it and see. Good luck

HappykindaGal profile image
HappykindaGal

The getting the right meds balance can be pretty brutal. Having had RA for four years now, the balance is mostly ok.

I’m on bot sulfa and mtx with no side effects. I also take a biologic, benepali. The stiffness is still definitely there and walking isn’t easy, but no pain. I run a very busy business. I have had some time out of it, but generally I work every day. It’s not a physically demanding company which obviously helps. I do find I need to pace myself a bit more and the 15 hour days are a thing of the past.

Eventually, you will find what works for you. It may never be perfect, but you will be fine 🥰

TPaine profile image
TPaine

Hi as I read your post I was struck by how similar in some ways your start is similar to mine (meds not children!). I was diagnosed 14 years ago now and was started on sulfasalizine and the maximum dose of this did help. I stayed on this for 10years but always needed pain relief/anti-inflammatory meds too. My consultant nagged me about adding MTX for several years but I resisted and tried other DMARDS alongside instead, still needing pain relief. Finally I gave in because I could see things were getting worse all because I was being stubborn about starting this drug! I was scared of it just as you are..... I also enjoy wine so was reluctant to have to stop that which I can now see was silly, as you can still have a little so it isn't that restrictive after all.

The biggest push for me to change my mind was the very long flare that it seemed, would never end a few years back and my lovely GP supporting my fears. It was explained that in order to ever get the option of the new biologic drugs I have to try MTX so I was stuck in a hard place! I started MTX nearly 4 years ago now and was then on this with sulfasalizine. This helped a little but I was still in an almost constant flare and had to be on the max doses for both meds. I have to say the side effects of MTX were actually less difficult to adjust to than the sulfasalazine as that made me bloated, nauseous loads when started these. After a year of this regime my DAS was still not great so we began the road to proving I needed biologics, which were approved and started just under two years ago and this was the best thing for me, as this worked and now I am on the weekly injection of benepali and a very low dose of MTX and no pain relief anymore. Aside from some nausea at times minimal side effects.

The moral of my story is don't resist as actually all I did was restrict myself and my options when I could have felt better sooner.... however totally get the fear but mine hasn't been realised so maybe give MTX a go?

Pawz4me profile image
Pawz4me

I've been on methotrexate, leflunomide and Enbrel and various combinations of the three. I've never had any side effects that I consider to be significant. I watched my mother live with untreated RA, and so when I was diagnosed I absolutely knew that was NOT the road I'd take. But only you can decide. Do remember that if you try a medication and have bothersome side effects you can simply stop taking it. It's not like it's a lifelong decision to try one (or more).

Heraripley profile image
Heraripley

Thank you again everyone. I'm definitely calling my rheumy nurse tomorrow to start the path of methotrexate. It has been so valuable to hear all your input and it has given me some hope that maybe I can get myself in a better state 💜💚

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