Hello. I’m very worried about the future.

GregJ
GregJ Member Posts: 8
edited 28. Nov 2023, 14:10 in Living with arthritis

Hello, I hope you are keeping as safe and well as you can.

This is my first post on the community.

I was diagnosed with Psoriatic Arthritis in 2014. It became very debilitating quite quickly and unfortunately neither methotrexate or sulfasalazine helped. In fact the Sfz made things worse. I was taken off both of these and put on to an weekly biological injection, Enbrel.

Within the space of a few weeks Enbrel changed my life. It gave me mobility and reduced my pain considerably. I have now been on the injections for 8 years.

Unfortunately, just last week, I was diagnosed with stage 3 locally advanced prostate cancer. This was a real shock as investigations were being made for other health conditions and an MRI showed shadows on my prostate, which triggered a biopsy and then a cancer diagnosis.

As soon as I received the diagnosis my rheumatology team informed me that they would be stopping my Enbrel injection as it cannot be taken if there is any cancer in the body. Another shock for me.

I have been off my Enbrel now for nearly 4 weeks and already I can feel the arthritic activity increasing across my whole body. My joints are burning, hands, wrists, elbows, hips, knees and feet. I have trouble in my back but I think this is more osteo. than psoriatic. I had a full body bone scan yesterday to see if the cancer has spread (the first place prostate cancer spreads to is usually the bones) so that will be interesting from an arthritic as well as a cancer perspective.

My rheumatology team have said that as soon as I get the all clear from cancer they can put me back on the biological injection but I don’t know when this will be, could be 6 months or longer.

My worry is how am I going to cope with the effects of the PsA increasing again at the same time as going through cancer treatment.

I just wondered has anybody had to go through the same thing? Did you have to come off your biological and if so how did you find it?

Any info would be most welcome. Thank you for your time.

Take care

Greg.

Comments

  • Lane
    Lane Member Posts: 115

    Hello @GregJ welcome to our online community.

    I understand that you have Psoriatic Arthritis for a number of years. You found Enbrel to be very satisfactory for your mobility and pain. Unfortunately, you have been diagnosed with stage 3 prostate cancer and can not take Enbrel. You are very concerned about the affects of PsA on your joints and having cancer treatment also and want to know if anyone has a similar situation.

    It sounds like you are going through a lot right now and I am glad that you found us. Take a look at the links below which may be of interest to you:



    Best wishes.

  • Jennifer55
    Jennifer55 Member Posts: 4
    edited 29. Mar 2023, 15:20

    What a problem. Is this any use?

    I don't know. It seems mainly to involve people who have been treated.

    Nudge your doctor for a bit of urgency on a prostate operation. The NHS is so slow. Four weeks ago cancer found, only yesterday a bone scan. Cancer research uk says not to wait more than two weeks to get the result of the scan. I would try someone after a week.

  • GregJ
    GregJ Member Posts: 8

    @Jennifer55 That’s really interesting, thank you. I’ve always been aware of the lymphoma risk and had a scare about 12 months ago when my lymph nodes started to swell very large in my neck and jaw.

    Shortly after that the prostate symptoms started but as the initial blood test results for prostate cancer were well within normal range for my age tests did not go any further. So officially I have been having symptoms for nearly a year, it took many months to get a biopsy and another 5 weeks to get the diagnosis.

    Thanks again for the article, it reassures me that if/once I get the all clear I can safely go back to my biological injection to regain control of my PsA.

    Take care

    Greg.

  • jamieA
    jamieA Member Posts: 609

    Hi @GregJ

    I'm really sorry to hear of your diagnosis and hope you get treatment soon. My best friend was diagnosed with prostate cancer two years ago and was firstly given hormone treatment and then he had a course of targetted radiotherapy - 45 consecutive days of short bursts as an outpatient. He's cancer free now.

    Is it possible you could have oral steroids or steroid injections while you are off Enbrel to help with your PsA symptoms? Also maybe get external applications like capsaicin cream and lidocaine patches to see if they help.

    I hope you get treated soon.

  • GregJ
    GregJ Member Posts: 8

    Hi @jamieA

    Thank you for the suggestions. I’m definitely going to speak with my urology consultant next week and see if he can work with my rheumatology nurse to see if they can find a happy medium solution, just to get me through the next few months or however long it takes to be deemed clear.

    My rheumatology nurse has said I can definitely have steroid injections as an arthritis first aid and she was sure I can have them during any cancer treatment so I’m hopeful they can find something to help.

    I mention your suggestions to them. Thank you for taking the time to help, it is really appreciated.

    Take care

    Greg.

  • jamieA
    jamieA Member Posts: 609

    Hi @GregJ

    I was told that the norm is a maximum of 4 steroid injections a year but I had 12 in 10 months as well as 4 months of oral steroids at the same time when they were trying to get my PsA under control as I also had multiple bouts of pneumonia around that time. The steroids certainly helped ease the joint pain. I still use capsaicin cream and lidocaine patches when needed and feel they help also.

    Best wishes

  • GregJ
    GregJ Member Posts: 8

    Thank you @jamieA I will definitely ask about this in my next appointment next week.

    Thank you very much. 😊

  • stickywicket
    stickywicket Member Posts: 27,608

    You do need someone fighting your corner, @GregJ and I do hope rheumatology and oncology will liaise.

    As for steroids, i can see no reason why you wouldn't be able to take them orally or injected. I believe @jamieA was thinking of steroid injections into joints. They are definitely limited, usually to four a year, but the pills and general steroid jabs in the rear end are a different matter. In fact, after I had a mastectomy for breast cancer many years ago, I was given high dose steroids to build me up ready for the chemo.

    I really hope things go well for you but do be prepared to jog people along if necessary. PALS might help if they drag their feet

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • GregJ
    GregJ Member Posts: 8

    Thank you @stickywicket

    Yes my nurse was talking about injections into the backside so I’m hopeful they can keep me ticking along whilst I get through the coming months.

    I will definitely be asking the two departments to speak to each other if they can

    Thanks for your kind words and encouragement

    Take care

    Greg.