Dilemma over starting new drug...scared and confused

TrishaW Member Posts: 109
edited 8. Nov 2017, 18:42 in Living with Arthritis archive
I've been trying to discuss this with my family, but they tend to try and ignore anything to do with my health (and hope it will all go away I think) Also as I'm a recently retired nurse I think they feel I know best so don't offer opinions. So I'd like to share my drug dilemma with you lovely people.

Anyway the issue is, I've been waiting months to start a new drug for PSA , secukinumab.

I waited for NICE to approve it, then had the assessment, blood tests, XRay etc and waited weeks to see the nurse specialist to set the ball rolling.
Then came the wait for it to be delivered (it's now sitting in my fridge)
So now 3 months since I was told I could start it, all I need is the nurse to come round and supervise my giving the first dose. I've cancelled her twice due to being unwell.

However, this is my dilemma...

1. When I 'begged' for this drug a few months ago I was having a difficult flare, but my joints are currently the best they've been for years (off all drugs). I know the nature of my PSA is that it could flare again tomorrow, but it seems illogical to try a new drug when my joints are good (how do I know if the drug is working or if I'm ok without it?)
2. As with all these drugs, this one lowers your immune response. I am very prone to infections and have had an almost constant cold for the past 8 weeks (despite a flu jab) and I'm currently on day 5 of a bad cold/chest infection that has knocked me out completely. I have a 2 year old grandaughter who passes bugs on to me and I've been very 'infection prone' all my life. I also get lots of UTIs (which is why I was taken off Humira 5 years ago) I'm very worried I'd be even worse on this drug.....which if my joints were terrible would be worth the risk but as they're ok at present I'm panicking about it.
3. I know this is contraversial, but I completely changed my diet 8 months ago as I had very high cholestrol and was borderline diabetic, with bad indigestion and gastritis from years of NSAIDs . I saw a Nutritionalist and took all her advice (with my GP and Rheumatologists blessing) and have halved my cholestrol, normalised my blood sugars, no longer have indigestion (no more PPIs or Gaviscon) and had no more bloating. Part of the diet was also antiinflammatory to see if it would benefit my arthritis, and I was doubtful it was helping much at 5 months. But it's now 8 months since I started it and I wonder if that's why my joints are much better. It's so hard to tell as I flare and subside so regularly, and it's hard to know what is helping/not helping. But if I can achieve this result with diet alone I obviously don't want to take medication. However I could find myself flaring again and begging for the drugs!
Ideally I'd like to not take any drugs but then that's the same for all of us...we just have no choice. But I wonder what should I do?
I'm too unwell to have my first dose this week anyway, and my gut feeling is I should only take it if I'm actually flaring to see if it works or not. I'd happily stay on my diet for life if that's what I need to do.

I'd love to hear your thoughts...

Thanks for listening



  • trepolpen
    trepolpen Member Posts: 504
    edited 30. Nov -1, 00:00
    Trisha , non of us are qualified to tell you what to do , we all react to drugs differently & dont know anything about your medical history or drugs you are on

    I also just started a new biologic for RA , the one I was on rituximab worked well but last in the system along time & having infusions every six months but need several joints replaced & they dont want any risk of infection when doing the joints & for this reason was put on a tablet form that I take twice a day tofacitinib , the question you need to ask will this drug improve my health & should I take a chance because alot of people will get no side effects

    if you are worried talk to your Consultant/Nurse or any of the free helpline like Arthritis Care & National Rheumatiod Arthritis Society
  • palo
    palo Member Posts: 240
    edited 30. Nov -1, 00:00
    To me it is a question of risk. I will give you my example. I have a condition called myasathenia gravis. Prior to treatments being available for it there was a 25% death rate from it, now it is less than 5%. We would all like to be off the toxic drugs we take and all the consequent side effects and issues that result but I know that the risk outweighs the cost on my body of not taking it. But my long term goal is still to come off all my drugs at some point in the future if it goes into remission which can happen and I work to try and reduce my drugs as I can and am hoping to come off the steriods, after 18 years in the next few months.

    You have to consider the risk and possible damage that may occur from not taking the drugs and if that is acceptable and less than the risk of taking it then it is easier to decide.

    You know your own propensity in terms of side effects and issues you have previously had so will have some idea of how to manage and what issues may occur.

    Good luck, you will know what is best for you.
  • barbara12
    barbara12 Member Posts: 21,280
    edited 30. Nov -1, 00:00
    Hi Trisha
    I do wish I could offer some advise..maybe its just that you are scared of starting the new meds, I do hope that whatever you decide is the right thing..it is hard to talk to family, so you keep us updated then we can offer support...x
  • stickywicket
    stickywicket Member Posts: 27,553
    edited 30. Nov -1, 00:00
    Hello again, Trisha. I'm sorry I haven't replied until now but I'm currently in recovery from a major bowel op so I thought it safer for everyone if I leave the forum alone for a while.

    How is your cold / chest infection? Please don't do what I did ie nothing until I'd coughed myself into a hernia :roll: (That wasn't the major op - that was just my 'starter for 10'.) And remember, a flu jab gives no protection against the common cold only against the prevalent flu virus(es).

    Our meds are powerful things so we are all apprehensive about starting new ones and I can see that, because of all the time it has taken to jump through all the hoops, you've had more time than most to get apprehensive.

    Having said that, one line of your post stands out to me - ' I flare and subside so regularly'. That suggests to me that your PsA is not under control even though you feel better. This has never happened with me. Whenever I've flared it has only ever been resolved by a change or addition of meds. I think, when we flare, damage is being done so it's not a good idea to allow flares to happen often. How are your inflammatory levels?

    I hope you can come to a decision which you'll feel happy about and which won't endanger your joints. I'm glad the diet is helping but diet alone won't cut the mustard, alas.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
    I think Sticky has nailed the two important aspects of any decision you make. The PsA isn't under control, and diet alone won't deal with that.
    On the plus side perhaps, the fact that your general health is so much better as a result of the diet puts you in a much better position possibly in terms of dosage of drugs, the degree of side effects and your ability to cope with them. Even the 'success with alternative approach' story that appeared on the AC website a while back didn't involve doing without drugs completely but a rigorous multi-faceted approach did seem to reduce the quantity needed to keep the RA under control.
    As far as the succumbing to bugs goes if your GD is a prime 'donor', then apart from whatever self-help measures you already use(antibac hand gel etc), perhaps you need to try and avoid contact when she is germy. What is a passing nuisance for her could be far more serious for you.
  • TrishaW
    TrishaW Member Posts: 109
    edited 30. Nov -1, 00:00
    Thanks for all your comments and thoughts.
    I'm still recovering from this horrid cold at the moment -still coughing and also have sinusitis -unfortunately a common thing for me after a cold.
    Weirdly my joints haven't flared with this cold though maybe they will kick in soon.
    In answer to the question about my inflammatory markers, mine have always been ok despite my symptoms (I've always been atypical and hense it's taken a long time to get an actual diagnosis)
    I'm still pondering about taking the medication...part of me hopes I flare so I'll be wanting to take it, but part of me is obviously happy that I haven't flared since August (but I did have a Depo injection then....should have worn off by now though)
    Arghhhhh.....I keep changing my mind what to do!
    Best wishes to everyone here and thanks again for your support which is much appreciated.
    Love Trisha x