Three months of pain...shoulders and wrists CRP and ESR raised and antiCCP of >340.... today saw the rheumy and it was upsetting to say the least.....he did an ultrasound on my wrist and it was really clear to see the active inflammation...I’ve been on 15mg Pred for 5weeks still with pain and today he shot me in the butt with a months worth, to taper me off the 15mg oral and he has prescribed triple therapy..... folic acid too, OT and physio. I can’t believe how my life has changed in the space of lockdown but I want to stay positive. He has said I need to allow these DMARDS to get into my system and get everything under control. Any advice would be welcome.... my pain is horrendous in morning....eases around 1pm.... I feel ok around 6pm..... then bedtime I know it’s just gonna be horrendous again... the cycle.... I did however manage to get the methotrexate as injection which must be a good thing for my tummy?
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Piglet007
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Poor you. The meds take time to work unfortunately and all I can say is keep on top of your painkillers and anti inflammatories ice / heat packs. I wish there was more I could do to help. Methotrexate injections are absorbed much quicker into the system so here’s hoping things improve. Sorry I’m not much help
I'm so sorry you have been suffering but at least you managed to have a very productive consultation with a sympathetic Rheumatologist who has started you on a treatment pathway. It's good too that you have had a steroid injection to tide you over till the other drugs get to work their magic.
Staying positive is so important, as is being kind to yourself. J1707 has given you good advice and all I would add is to pace yourself, rest when you feel tired (fatigue is very common with RA) but try to keep moving too. It's good that you've been referred to an OT and physio as they can help a lot.
Hi piglet sorry to hear you are suffering I am newly diagnosed too ( just before lockdown) and have had similar experience just switched from oral to subcut methotrexate today and starting on biosimilar soon had to stop hydroxychloroquine due to reaction.
Still in pain and immobility but everything I read on forum gives me hope that things will improve I am sure we will get back to a version of us soon.
I was put on triple therapy after diagnosis, and it put me into remission and back to 95% normal where I have more or less stayed ever since (10 years). Sometimes I can’t quite believe how normal I am considering the the horrendous pain and swollen joints I had to start with.
It was slow to get there tho’. Took me a year. But then I started the 3 drugs one at a time so it was months before I was on all three.
Keep positive and look after yourself. It makes a big difference,
Thanks to all for your comments. I am Edinburgh..... 55years Young.... was a very active lady who loves the hills and my bike and in general a very outdoor girl.... I just don’t have the energy or inclination right now either and that’s odd!? Anyway, I do worry as I do get relief from the steroids oral, for the last five weeks of taking them but o noticed around two weeks ago they were having less impact on the morning stiffness and aches And it’s around 1-2pm before I can move my arms with no pain..and now he’s given me the jag on top I thought I’d feel wonderful in the morning.... and I don’t..... I’m looking forward to beginning the triplets therapy in the hope I can dampen this down! It’s good to talk with you all
Sad to say it takes time to get a regime to suit you. It can take up to six months(i am erring on the side of caution here) to get things worked out that suit you. What suits you might not suit me. Same drugs different reaction. I wish i could say you would get instant reaction and it doesn't work for everyone.xxxx
Hi Piglet, love the username as I too am a massive Winnie the Pooh! So sorry you have had to join us but a huge welcome to this great forum. It sounds really difficult for you. It can take time sadly to feel the full effects of the meds, but I hope that they work well for you. Sounds like you have a great rheumatologist which is great. x
A piglet with a license to kill! Sorry you have to join the club. In addition to all the good advice and support you already got. If you don't already know about NRAS, have a look on their website. You'll find an answer to almost everything there is to know about RA. They also have a help line and a peer to peer support line. I found that knowing as much as possible about RA, medication and self management was a great help to get back in control over the illness. Together with triple therapy of course. 11 years on and still in remission. All the best and stay in touch.
Hello Piglet007, welcome to the biggest support network 👍. I’m sorry to hear what you’re going through, I’m a newbie but all I can say is take comfort from everyone on here but also think about your own body. It’s in a kinda shock at the mo, had these tablets and injections to contend with and needs a breather to settle the new guests in to stabilise the unwanted guest 😊. Give yourself time, acceptance is a big thing , do what you can when you can but also rest up when you need to. Remember, you are shaken but not stirred piglet007 😘👍
Welcome Piglet007, wish you didn't need us, but this is a really supportive and knowledgeable forum, and usually someone can answer your question.
It's so frightening at first, but it sounds as if you have a good rheumatologist. Don't expect an overnight miracle, with RD the drugs tend to take time to work. If they don't do the trick, there are plenty more opportunities, don't despair.
There's quite a few of us in the Lothians, so you get the Scottish angle too!!!
Good luck, hope things improve. Remember, we're always here!
The steroid dose you were on was still quite low for the pain you are in. Sometimes the injection takes two or three days to kick in too.
Good that you have appropriate drugs, matter of time till benefits are experienced.
Meantime, if no change over the weekend, you might want to get back to your Rheumatologist by telephone to discuss better pain relief to tide you over. Stay safe.
Thank you all for welcoming me, with sound advice and guidance. It’s going to be rocky road for a few weeks but I’m gonna stay positive and keep smiling
Your OT and physio will help, I’m in Aberdeen and I must say I got individual Pilates classes to help strengthen my core. It is a nightmare waiting for everything to kick in but it will eventually. Remember be kind to your self and your body and if it’s telling you to slow down and have a nap there is no problem with that. I can empathise with the joint pain and know it’s more frustrating at the moment with lockdown but recommend hot baths or hot showers at bed time or a good old fashioned hot water bottle for joint pain. A good stretch with the yoga position of the cat is great too. That old thing of forcing yourself to do something you previously did doesn’t work here you will find your body rebels it’s a case of doing things when you are able and taking the odd painkiller when you need it. It will take a while for your methotrexate to get into your system but the bigger steroid dose will help but not make things perfect.
Thank you, and yes I want to stay ‘fit’.... but I can’t cycle or do my arm exercises as it kills my shoulders..... I’m feeling quite unsettled with this jag of steroids as I still have a lot of pain, dragging down my arms to elbows.... can’t pull a jumper over my head....I also feel foggy in my head since he shot me 💉😊...... ive been on steroids for 5 weeks.....and tapering now since he shot me, 10mg....was 15mg.... and I’ve always had pain so I dread to think how much pain I’d have without the wee blighters..... anyway, thank you for your guidance 😊
Know exactly how you feel I have days when I can’t get a bra on. Good thing about lockdown is I just call them days my pj days and lounge about. Speak to your GP about pain killers I have a supply of tramadol that I only take if it gets really bad but it is good knowing they are there if I need them. I find it difficult to sit at a table for dinner sometimes and the last 2 x Christmas dinners have been painful this year I’m having mine on a tray there is just no point in putting my body through the stress of it all. I’m here if you need to speak about it
Just hearing your bra escapades has made me smile..... that was the start of my problems.... wondering what on earth id done not to be able to get my arms to move and clip my bra.....
Yes no point stressing about it some days this 50 somethings has to go free and let nature do it’s on thing and if folk want to gawk at me well there is worse things lol x
DMARDS didn't touch my pain but I wasn't surprised. I'm a difficult person to treat for some reason! If you continue to show inflammation you might need a biologic. I was initially treated with MTX and Predisone. It took off a ton of fluid but my joints were still inflammed. She feels my joints and can tell. If you aren't on a pain management regime I would absolutely seek out a pain specialist
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