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enzalutamide/ sulfasalazine

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User
Posted 08 Jun 2023 at 21:53

hello everyone,


I have been on enzalutamide for a year now as well as zoladex 9 years on and off mostly on, treating mets in various bones around the place. Apart from pretty awful fatigue, for around 6 months I have had painful wrists one of which swelled up putting me in hospital for a week. subsequently both wrists have been injected and not responded. The wrist issue ( swollen tendons ) is I am convinced an effect of the enzalutamide. The rheumatologist seems to think that my immune system is causing these swollen tendons and has suggested a drug called sulfasalazine. The ball is now in my court as to whether or not to proceed with this drug and possible side effects. Needless to say my oncology team have gone into hiding as per usual whenever I need to speak to them and they probably wouldn't  take ownership of any side effects ! My question is really twofold. Has anyone else had similar side effects and if so have they had experience of this sulfasalazine. Any feedback will be much appreciated.


All the best Nigel


 

User
Posted 09 Jun 2023 at 16:54

Hi Nigel,


I have been on sulphasalasine for around 40 years, with methotrexate replacing it for 11 of those years due to arthritis. Sulphasalasine is the least toxic of all the second line drugs for arthritis. I find I have tolerated it well. I have 12 weekly blood tests covering renal function, liver function, I immune system and blood count. My white cells, lymphocytes , neutrophils etc are on the low side as the drug does inhibit your immune system to dampen the arthritis inflammation. I was offered methotrexate again recently but declined, it is pretty toxic. Hope this is useful.

Ido4

User
Posted 09 Jun 2023 at 19:21
Hi Ido4, really appreciate your reply. I probably will go for it after hopefully talking to my GP next week. My wrists aren't getting any better and the fewer issues to deal with has got to be worth it.
very best wishes Nigel
User
Posted 09 Jun 2023 at 21:19
Sorry - John hasn't had sulfasalazine; he went straight onto methotrexate. Like Ido, he has frequent blood tests to check liver & renal function and gets regular reminders from the specialist nurse about seeking medical attention if he gets any infection. His immunity is certainly suppressed - any kind of cough or cold hangs around for weeks :-( On the up side, he is always prioritised for covid & flu vaccines!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Jun 2023 at 23:55
Thanks Lyn, food for thought.
User
Posted 10 Jun 2023 at 01:04
Just to be clear, he finds the occasional lingering cough is well worth the reduction in pain and increased mobility.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
 
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