Week 16.....still nothing

[Piglet007]

All x

I’m now 16 weeks into this triple therapy and worse than I was when I started four months ago.... nothing is working, 25mg methotrexate is making me feel ill, heart rate is getting higher each day, headaches, now both my hands are affected, it was previously just my right wrist.... and my shoulders are worse than ever... I can’t dress....I can’t sleep.... I can’t work..... I can’t lift my arms..... I cry constantly with the pain and utter desperation I feel every day living like this? I’ve asked to go back on oral steroids as they are the only thing that gave me any feeling of relief. My consultant says he’s happy for me to do this today, to tide me over for pain relief but still wants to wait until November to see me before thinking of a switch.... he feels the 25mg should kick in but it makes me feel crap? I worry how he will know if it kicks in when I’m on steroids and it’s only the steroids making me feel better. I don’t want this life, I hate it....sorry but I’m so low 😌

[Pippy25]

Oh Piglet I am so sorry to hear how you are feeling right now and while I can't speak of any experience of MTX and any possible effects, I am just so saddened that you are suffering and wanted to let you know people are here. Is there any way you could contact him or your GP for more advice and/ or any support that could be offered? Sending some kind wishes your way xx

[Piglet007 in reply to Pippy25]

Thank you Pippy. My rheumy nurse is calling me at 10.30 so I’m hoping they will help somehow. My GP is very understanding but does say they think the rheumy team are the experts and they will be the ones to get me sorted. Gp is happy to prescribe steroids too and feels this is right at this time?

[oldtimer]

It is worth taking the steroid course now to tide you over - you will soon know if the triple therapy is working (and it does take six months for some people) as you stop it. But right now the priority is to give you a break from the unremitting symptoms and give you some quality of life back.

The first months after diagnosis while treatment is being sorted out is terrible and you have our sympathy and support. Please feel free to post when you are feeling down about it all. We've been there too! It can feel as if there is no end to the pain and limitation of activity, but honestly there is. It just does take time to sort it out for each individual. But it is possible to return to a life, while not as it was before, is manageable and enjoyable.

[Piglet007 in reply to oldtimer]

Oldtimer thank you. Yes it’s a dark place I’m in and want to see the light I am told will be there for me. It’s just so hard to believe when I feel worse each day. My rheumy nurse has asked me to go in tomorrow first thing so she can look at my joints and as soon as she’s done that I’ll pop the steroids as she asked me to hold off just one more day and I too want her to see my swollen joints fully. I get my bloods done this afternoon too so they will for sure show my readings as high as last month my CRP was 35 and I’m sure it will be higher, surely that alone shows these drugs are doing diddly? Thank you for taking time for me x

[Mmrr]

A wee course of steroids might help you in the short term, but do stay in contact with your rheumatology team and let them know if things do not improve for you.

[rab1874]

Hopefully the steroids will make things that wee bit better,this disease really knows whereto kick us when we’re down Piglet sending hugs xxx

[Hidden]

I too landed going back on steroids for a short term dose when it was all feeling bleak in February. I get where you are coming from and decided to talk to my GP re mental health today and just doing that made me realize how complex it can all be sometimes. I also know I needed to say something to him when discussing issues with my 3rd drug and side effects etc. and he listened and said past year been a struggle and gave me some solutions.

So make sure you tell someone of struggling mentally too.

[Lolabridge]

Hi Piglet.

Get on those steroids PDQ! They will make you feel so much better quickly as clearly you can’t go on the way you are.

I was in a very similar position to you in the beginning whilst I tried various drugs till we found one that really worked. Now I’m feeling so much better, have little pain, my Inflammation is much reduced and I’ve started to reduce the steroids.

Have courage and hope; things will improve for you. Meanwhile take the steroids to tide you over. X

[Piglet007 in reply to Lolabridge]

Thanks LolaB. Consultant wants me take steroids for a month...tapering each week and that leaves a 2week slot until I see him, and if I’m back to being a painful miserable cow he will know that the DMARDS are not working as Effectively as he’d hoped?

[Boxerlady in reply to Piglet007]

It sounds like you've got a good team there so try to trust them and go with their recommendations. Waiting for medication to work is awful and it can be hard to believe that things will get better but they will and meantime take all the help on offer 💐

[Sheila_G]

So sorry you are feeling so bad. I can't give you any medical advice but sending love and best wishes for a better day.

[Monkeysmum]

Hi Piglet007, I hope by now you have had your visit to see the Rheumy Nurse and all has gone well. It sounds like you really have no option other than to go back on to the steroids for now. I know how hard it is to take one day at a time with this disease when you are so desperate for an improvement. Please keep talking to us here though, we are all here to support you. Big hug.

[Nik8210]

Hang on in there the triple therapy phase was helllish for me too. Unfortunately u just have to hang on in there until they figure out what drugs

will help.

There is loads of good advice on here just wanted to say been there and battled through. Make sure the doctors know how bad your feeling.

[Constance1937]

Hi I know the feeling Ive got RA Im on Methotrexate and Benepali but still my hip has become unbearable both my knees are the same and all three need replacing so the drugs haveant prevented that Im in so much pain I dont know if the drugs are working ot not

[Hidden]

I've been in just this state Piglet. I feel terribly sorry for you. Prednisolone pulled me out of it, but it took months to get off it. Your consultant has to abide by certain rules and I understand one of them is to give MTX six months to work. Hopefully it will. x