Post CRT treatment and Arthritis

Hi I’ll ask a friend Panch who is in a similar position. She should drop in with some help. 

Hi Lisa

T2N1M0 tonsil cancer 

I was taken off methotrexate (for psoriatic arthritis) prior to starting chemoradio in late March...no problems during chemoradio treatment or post chemoradio until about September/October then arthritis kicked in bigtime.... rheumatologist contacted.... who then contacted the oncologist... between them they decided it was OK to restart methotrexate, that was 5 weeks ago GP has also administered steroid injections which have settled things down....bloods done monthly for 3 month then back to every 3 months.

Hope this helps

Peter 

Hi there.

I had been taking Mtx for about 15 years pre surgery and latterly I’d had to add in a drug called Etanercept for destructive Psoriatic Arthritis 

I stopped both as soon as I realised that something was seriously wrong and didn’t get much serious pain for about 3 months.

Got a steroid shot to get me through Radiotherapy and then another for a further operation (unrelated).

I consulted widely before returning to a Biologic drug (which it sounds like you’ve not needed yet).

the problem is that oncologists have an IDEA about DMARDs & Biologics bug honestly, they’re not experts.

There remain plenty of drugs for you to try / tho I suspect Mtx might not be top of the list. Any of the Jak inhibitors would not be recommended either.

ill add you as a contact and I’m happy to give you the name of the rheumy I consulted privately - whose wife happens to be an oncologist!

Stessy/Panch

Hi, thanks for this both of you. I have been on MTX since 2012. I stopped taking it (before all this) because a) there was marked improvement with the arthritis and b) it was making me so unwell for a couple of days every week.  Went back on it in March 2023 but then off again when diagnosed with H&N cancer. Still being in recovery from treatment, I am not keen to go back on something that makes me feel so crappy! I'll see what they say tomorrow but speaking with another rheumy might be useful (I'll message separately about that). 

Thx, Lisa

Hi Lisa 

On Mtx since 2005...Sulfasalazine before that.

Yes Mtx has its downsides, I take 5mg folic acid daily to lessen some of them. Since restarting Mtx nothing out of the ordinary has surfaced, local GP and hospital are monitoring my progress, have an appointment with rheumatologist early in new year.

Peter

Hi  and Panch , saw my rheumy this morning.  Your responses really informed our discussion (so thanks for your inputs).  Asked to review my last set of X-rays (from April).  We didn't do this before as things were rather over taken with the cancer diagnosis. I also asked for a comparison to last set (from 2014!) too.  It seems there has been no deterioration in that time.  I was actually in remission for a couple of years, up until January 2020 when I had the worst flare ever and was put on steroids.  Then lockdown came and I again went into remission but this time all the misshapen-ness in my hands went away (something my Drs said treatment couldn't help with!). A couple of theories about the remission - I was doing less during lockdown, working from home so no commuter train/tube trips. Probably less stress all round.  The only other thing that was different was the Pfizer jab.  Interestingly, the last flare (end of last year) was after a Moderna booster! Steroid injection took care of  the flare and then subsequent jab was Pfizer again... and I'm still pain and inflammation free. Anyway, I said today that I didn't want to go back on MTX and feel rubbish for a couple of days a week when I am just starting to feel more myself after CRT treatment. So, we've agreed to stay off meds and review in 6 months (unless I flare) in which case they'll bring me back in immediately and treat accordingly.  In the meantime, I've asked for other meds to be researched/considered should I need to go back onto something.  They seem more open to this now (think it's the cancer) than when I've previously asked about coming off MTX. 

Hi Lisa

Glad things went well for you, being pain/inflammation free is tremendous. arthritis can be very debilitating.

I have my next appointment with rheumatologist in January may bring up the prospect of changing meds.

Had my second 3 monthly post CRT examination with oncology team today no one mentioned Mtx, told me I was healthy, no sign of recurrence, wished me Merry Christmas....70 mile round trip for a 5 min exam....but well worth it.

Have a lovely Christmas.

Peter.