I hope this post finds you as well as you can possibly be today 🫠
I haven't been on here for a while; I've been busy sorting out a diagnosis of PLCIS (Pleomorphic lobular carcinoma in suti) after going for my regular mammogram visit earlier on this year.
Long story short - I had a lumpectomy (where my diagnosis changed from it's original 10 mm DCIS to 35 mm PLCIS) followed by radiotherapy. I had to stop all of my meds (Tocilizumab, Metoject and Sulfasalazine - along with other bits and pieces) about 4 weeks pre op, and I've only been back on them for one week - 2 weeks post radiotherapy. Just over 4 months off Tocilizumab and just under 4 months for methotrexate.
I know lots of you lovely people have had many battles, and would have had to postpone your meds for different reasons, so I'm asking for your help. I'm really, really struggling with my RA. I think I'm recovering from my op and radiotherapy pretty well, it's my RA which is the killer. How long did your meds take to kick in when you restarted?
After my op, I asked to go on a course of Prednisolone (20mg,15mg,10mg,5mg) over the month - that helped for a bit...but I'm so sore and so swollen 😫
Thanks for taking the time to read my post. Any help would be appreciated 😌
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Moomin8
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I’m sorry to hear you’re suffering. I understand the reasoning behind stopping the RA meds, but it plays havoc with your body. I spent 10 weeks in hospital last year and I wasn’t allowed to restart my meds for about 3 weeks after discharge. From memory it took about 3 months to get back to my normal. This year I was in for 7 weeks with pneumonia, I also had a pressure sore on my left hip, from the previous year. This was infected twice while I was in hospital and once more when I was home. This lengthened the time off methotrexate. This was all I was on at this time. I restarted the mtx 4 weeks from discharge, and started Cimzia 4 months ago. I’m just beginning to feel ‘normal.’ I hope you get sorted soon.
I can't help I'm afraid as I've no experience but just wanted to say I'm sorry about your diagnosis. Get well soon and HRT knocked my husband for six when he had it for prostate cancer before and after radiotherapy. I reckon it was a good year before the effects wore off. So once agin I'm sorry and praying you're feeling better soon.
I can’t answer sorry but I wanted you to know I think you’re very brave and sending you a gentle hug and hope your RA meds start working for you again. It’s a long time to be off the RA meds so no wonder you’re sore with your joints. Can you have another chat with your rheumy? xx
Thank you 😊 I had to fight so hard to get back onto my Tocilizumab, which worked wonders before I had to stop 😫, that I'm reluctant to say anything just yet. I had to send an email to say that I understand that I might get cancer by going back on it! It didn't cause what I had, so I don't understand why I had to do that, but I did. They were trying to get me to have a different biologic which didn't work the first time round 🙄😖
Have you been on a few biologics? I think Toc takes a while to build back up just as many of them (exception some anti TNFs) do. I wish I could wave a magic wand for you. We’re all here to support you, don’t forget that. Maybe the biologic they wanted you to have again was one which is known to give fewer side effects/more gentle on the body in general. If it didn’t work before though 🤷♀️ I’m glad though your med isn’t thought to have caused the cancer and I hope you can now progress in every way and get in control of the RA. Can you have a steroid general shot to tide you over until Toc kicks in again?
Yes, I think this is 6th. I've been told I'm at the end of my medical pathway! Which means it's going to be a big fight to get anything else. After my op, I had a steroid injection. Unfortunately it didn't (never does) touch the sides. So, I persuaded oncology and rheumatology to put me on a course of steroids. I've finished those a week or so ago. That's why my RA is kicking in even more.
Yes, you are feeling the steroid shot wearing off now. 😢 I know you’ve tried 6 RA meds, you said (all 6 were biologics?) Presume it is due to oncology issues you may not be allowed certain biologic meds. I do very much hope you’re soon feeling the benefits of Tocilizumab again. 🙏🩷
I had a joint replacement 3 months ago (prior to that two operations and a 3 week stay in hospital as it was infected). I had to wait for the replacement until all the infection was gone. I too was on tocilizumab but had to come off it when the infection was discovered. I'd exhausted all the other biologics but tocilizumab had worked very well for a number of years. When my ra came back I had the 20 decreasing to 5 of prednisolene like you but no relief long term. My consultant was reluctant to restart tocilizumab (apparently not as effective second time) but has put me on filgotinib (JAK inhibitor), too early to see if it's working as a steroid injection 3 weeks ago. However, I think that filgotinib is not prescribed if you've had cancer. Might be worth enquiring though? I've had other setbacks over the years and bounced (bounced might be a slight exaggeration!) back. Hopefully the filgotinib works works for me and they find something for you.
I can’t help directly with your question I’m afraid Moomin but just wanted to say how sorry I was to hear about your difficult year so far and to send a healing hug your way. 🤗
I’m so sorry to hear of the problems you have/had. It’s been tough for you. I’m on tocilizumab, have been for 6 years and it’s worked very well. About 4 years ago I had to come off it for about 3 months due to ending up in hospital with pneumonia. I wasn’t allowed back on it until I’d had a consultant appointment. Whilst waiting for this I did have a very big flare and was really struggling. Thankfully the consultant said I could restart the toc; it took about 4 or 5 weeks for me to really feel it was back in my system but since then it has continued to work well with just occasional minor flares. I only inject fortnightly as it does send my white cells/neutrophils low. Really hope you get some relief soon.
Thanks 😊That sounds promising 🤞 My neutrophils go low and my ALT goes too high! I'll have a blood test at the end of September to see how it's going 🙄 When I stopped all my meds, my bloods were the best they'd been for years! Apart my my cholesterol - that went back to being high (familial high cholesterol) so hoping that's improving now 😬
Hi, that's very sweet of you to check in on me 🫠I have a rheumatology appointment this Friday, I'll let you know how it goes. Unfortunately, my ALT (a liver result) is too high, so I'm hoping that they don't stop my Tocilizumab. 🤞
Hope it goes well. I've just restarted Methotrexate two weeks after radiotherapy. (Luckily, I didn't have to stop the Sulphasalazine.) I'm keeping my fingers crossed that it'll get to work soon!
The rheumatology appointment went well. I'll have another blood test at the end of November to check my ALT.
She suggested reducing my Sulfasalazine to one a day. I sniggered and fessed-up to already having done that for over a year 🤭She said we may as well stop it. We'll see how that goes. I'll continue with 15mg Methotrexate (Metoject pen) and Tocilizumab pen - both weekly. My ribs are still flaring (costochondritis) so my chest is sore, along with my breast recovering from surgery and radiotherapy. My rheumatologist suggested that as I've only been back on my meds for 6 weeks or so, that we should expect things to improve over the next couple of months.
I hope you don't feel too poorly after your radiotherapy. Sending a gentle hug. ✨️
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