Hi Peeps, I hope this UK sunshine has reached you over the last few days and that you are as well as you can be today.
I have been told to stop my meds because I have to have a lumpectomy on 8th May 🙄
I had to stop my Tocilizumab and Sulfasalazine 4 weeks before and my Metoject 2 weeks before. I also had to stop other meds too: HRT (for good) and statin. So basically I'm off all my meds after I stop my MTX on 24th April.
I have been diagnosed with DCIS - very early breast cancer. Yes, I'm worried about this, but I'm trying to be positive that all will be well. I think what worries me though, is that I will be off my RA meds until at least 3-4 weeks after my op and even more time than that. I have to contact my clinical team when I have the results of my lumpectomy (looked at under the microscope etc) and then if there is no more treatment for my DCIS 🤞I will then have to call and ask for an appointment, where they will reassess what I can and cannot take for my RA! I have pleaded that I go back on my Tocilizumab, because it has been my miracle drug, but was told that they can't promise this. My rheumatologist said that if/when I start to flare in this time, I can ask for steroids 😭I don't want them again.
I know sorting my DCIS out is paramount, of course it is, but I have been so 'well' on Tocilizumab for some years - we have got the concoction of meds right for me anyway - that to stop everything for such a long time (minimum of 2-3 months) is filling me with dread!
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Moomin8
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Sorry to hear about your diagnosis but at least they’re doing the lumpectomy quickly. Fingers crossed for you that all will be well and you can get back on the tocilizumab. It’s been my miracle drug too so I can imagine how badly you don’t want to stop it x
Actually, I have calcifications and no lump. It was found during a routine mammogram, thankfully. There's nothing to feel at all. Luckily I went for that mammogram 🙂
Sorry you've got to stop TOC and MTX for the time being and hope, when you've had the all clear, you will be able to get onto something that keeps your RA under control. If you do start to flare and it has to be a short course of steroids meanwhile, think positive, at least you know how to get off them again as you've done it before! Keeping fingers crossed for you 🤞
Hope your op goes well. Some biologics are not compatible with a cancer diagnosis, but there are others that can be used instead. Try not to panic. I have melanoma and it does mean only certain medication can be used. It really isn't the end of the world. Try to stay positive and I wish you all the best xx
It's tricky juggling multiple health demands. I had to come off my meds for an operation (minor one on my hand) and did have a flare afterwards, but I just had to deal with one thing at a time. It's settling down again now I'm back on meds. Good that they caught the dcis, hope the op goes well. Make sure you get lots of rest and take time to heal.
Hi, I had a kidney removed two weeks ago. My rheumatologist advice was to stop TCZ one week before op.and double my pred to 10 mgms one day before op and maintain for one week then back to 5mgms. .Resume TCZ two weeks after op providing all is well .That will be tomorrow.
I have not had any RA or GCA symptoms whilst off meds.
Wishing you well and hope it goes the same for you.
I have to say NHS was marvellous. Robotic op. in and out in threedays,nursing staff were great. Now slowly getting back to as I was .
Wow - a robotic op! So glad to hear you're on your road to recovery 😊 I wish my rheumatologist had a similar outlook, but like Gilliancheche said earlier, my meds might not be compatible with my diagnosis 🤷🏻♀️ I'm keeping my fingers tentatively crossed 🤞
I have been on sulfasalazine for 15 years plus and have to stop mine every time I get an infection, which last year was a chest infection (which I kept taking my meds) then I got pneumonia, so I then stopped the medication for 2 months, I then went back on it first week 2 tabs a day then 2nd week my regular 4 tabs a day, the stopping of the meds seemed to make no difference to my arthritis but did help with my recovery from the pneumonia (along with antibiotics and steroids), its really a choice of devil or deep blue sea buy when I kept taking my meds during the chest infection, it quickly turned to pneumonia so for me it was a no-brainer, stop the meds and get myself better which worked. I have both RA and OA (presently waiting for left knee replacement) which started when I was 40 so have had both for 28 years now and I think my immune system is very weak now after so long on medication. I wish you good luck in your operation and hope you make a full recovery X
Sorry to hear about your diagnosis. Hope the operation goes well and you can get get back on your rheummy meds as soon as possible. I wanted to go on HRT as I started the menopause but was told I couldn’t as my mum had breast cancer at an early age. I’m glad they found the jump early, mammograms are a really important diagnostic tool aren’t they.
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Stopping meds except pain relief.
Stopping meds
Meds.
