Aches and pains and rheumatoid arthritis

Hi Anna,

Sorry but Missyelliott and I seemed to have hi-jacked your post about RA.   I hope others will respond with some relevant posts.   

It's just such a huge topic this pain lots of us suffer from after all the other rubbish we have been through with this breast cancer.

I just hope we all can find some relief somehow.   Good luck with your pain relief.    And I'm not sure if it is muscular or bone pain - feels like both most of the time.

x

Not at all!! Tbh that was the whole point of the post, I’m not sure what the pain is that I’m experiencing so I wanted to hear your stories. I just feel so sad for you both how badly you’re affected by what you’ve been through, I just hope for better for you both and for me too!! It made definitely made me realise that this could be chemo SE but I’m now worried they could be permanent too. We shall see. It’s just rubbish what we’ve all had to go through, we must keep trying to find the positives but some days that isn’t so easy! Hope we all get a good nights rest and our aches and pains subside a bit x

Here's to a good night's sleep to both of you and some good days to come keep intouch let's see how we go good luck to you both all my love   

I have psorasisatric arthritis..similar to RA and have been on meds for about 15 years I am on methotrexate that I self inject weekly. I keep mentioning  this to every one involved with my treatment but have not been told to stop.  awaiting scan and staging results tomorrow. I am now worrying same may happen to me, I remember the knees wrists elbows pain when I was first diagnosed. with PA I Don't want to go back there!  let me know what the team suggest when you mention the joint pain. I am also on folic acid and celebrax. my body will get a big shock if I just stop everything.  Good luck with your recovery xx

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Hi hev999, ok! So I have RA/PA, a split diagnosis as I get mostly RA symptoms but also some PA symptoms such as the dactylitis, they are incredibly similar and my rheumatologist always says inflammatory arthritis’ often have crossovers. I never mention the PA as few people have heard of it!! I also was on methotrexate and other support drugs folic acid, etc. I met with my rheumatologist just before starting treatment and he said to stop taking methotrexate as the chemo makes it redundant, methotrexate in the doses we take it knocks back the immune system but the chemo does that job with bells on it and he didn’t want to complicate things for the oncologist. He said there have been cases where the RA/PA doesn’t come back after chemo, I did hope to be in that category!!! He advised me to go and see him after chemo and surgery. I guess talk to your rheumatologist about what he would recommend for you, nobody in oncology has a clue about inflammatory arthritis I’ve found.

I was in hospital today having herceptin and spoke to the chemo nurses, they think my pains sound more like RA than chemo issues but they couldn’t be sure. I have an appointment with the oncologist tomorrow so I’m going to talk to him too. Can’t get hold of anyone in rheumatology annoyingly!! X

hi,  the only trouble is since covid my PA is now being managed by my gp and I know he will say spk to oncology,...you know how it is.,my appt for ct scan results and treatment plan should have been today but rescheduled for Thursday #sigh# guess I'll just carry on until they tell me differently.  thanks for the info keep in touch x

Hi Anna, I'm am taking meds for RA, not had a definate diagnosis yet but joint paint has gone which is such a relief. I'm post op BC ER Positive and now Lymphedema, doing daily physio for that. Was prescribed Anastrozole, but the side effects left me in pain & short of breathe, so they've given me Exemerstane, which I haven't started, I'm scared too take them, due to pain & fear of breath issues. Two suspected chest infections, anti-biotics & then Dr said he thinks it could have been Pericarditis. Totally confused and feeling, is this physio going to work. IV heard other success stories, so fingers crossed. I think dealing with the BC is enough without the RA too, I continued with the meds for RA while having Radiotherapy, we follow the medics advice, but I do feel sometimes we need to stop, breathe & look at what our bodies are telling us too. Bless you, the constant pain is awful, draining. No contact from specialists isn't helping you either. I would ring your family Dr & ask if you can go back on your RA meds, to make you more comfortable. Best wishes & good luck xx

Hi Anna as you know I'm right behind you and watching yr progress and expierance with interest. Picc line In today...not fun...chemo Wed. praying I don't get the joint and bone pain....reminds me when I was first suffering from PA.  keep posting please! I have 8 cycles to get through. it's all very overwhelming  x

Well done for getting the picc in, hope it’s not uncomfortable, it should calm down soon if it is, mine was fine  well! I’ve had my mastectomy with diep reconstruction and axillary clearance and just been sent home today. Bit battered and bruised but coping ok. The aches I got on chemo were different to the RA/PA, some similarities but not as acute. When it fired up after I did know about it and when I went in for the op both my hands were fully inflamed, they’re calmer now thank goodness. I will get back on the mtx but I have to wait until my wounds have healed as it can affect healing and obviously the immune system as advised by oncology.  Hopefully in a couple of weeks. Luckily I’ve just been given tons on painkillers and the surgical team were very open to giving me more than enough to medicate the RA beyond the normal healing which was kind and saves me appointments. I’ll get back in nagging people soon! Thanks both for your thoughts x the RA completely disappears while on chemo, it’s amazing, but sadly I can’t guarantee you won’t still ache!! I’ll text more tomorrow as I’m wiped out xx