Hello - I’ve been taking Simponi (auto-inject pen) for about 4 years. It works pretty well, the arthritis symptoms reduced significantly and the psoriasis disappeared - at first. The psoriasis reappeared several months ago but the arthritis pain is still manageable. I was worried about Simponi and Covid 19. Simponi manufacturers Johnson and Johnson’s website indicates I should ask my doctor about the drug and Covid 19. I asked my rheumy and he literally gave zero advice. He didn’t say good, bad, plus, minus, positive, negative. He simply said, “It’s up to you.” So I am throwing this out to the group. What are you doing with the biologics? Are you continuing or discontinuing them, and more importantly, WHY? With no help from my rheumy, I’m at loss. I understand I am not asking for medical advice per se, I just want to know if you have more information than I can get from the manufacturers or my doctor. Thanks!
I live in the Metro New York area, so my area is pretty hot with Coronavirus right now. I am on Enbrel and I have been on it for about seven years. Because this is not a new medication for me, I have continued to take its with pretty minimal concern. I would not start a new medication right now though, because I would not know for certain whether that particular medication would cause me any problems in terms of increase risk of infection or infections that are worse.
You’ve been through multiple flu Seasons already on your biologic. To me that is sufficient evidence that it is not problematic for you. That said, the same rules apply. If you develop a fever you should hold your medication until your fever is gone.
Ultimately the choice is yours. As I said, I am comfortable with the decision that I have made.
I take the view that my biologic is helping to normalise my insane immune system. Because I have PsA that means I have an insane immune system. Covid 19 at its worst makes our immune systems utterly insane - that’s the main reason why people die of Covid 19. So I’d much much prefer to be on a medication that is helping my insane immune system be more normal, if facing Covid 19. As if I imagine what Covid 19 would do with an already insane immune system, it doesn’t bear thinking about. Does it?
But like @Stoney, I wouldn’t like to be starting a new to me med just right not either which is why most people aren’t being prescribed new to them meds presently.
Thank you for your responses. I have been through multiple flu seasons without getting the flu, but I also get a flu shot every year. I don’t worry so much about catching the virus. That is somewhat in control based on my behaviors (frequent hand washing, physical distancing, masking when in public, taking cleaning precautions on groceries and deliveries); as well as where I live. I’m in an area with a somewhat low death count (even one is tragic). I think my odds of getting the virus are the same as most people who behave with common sense and caution and live near other like-minded individuals who predominantly follow the science. My worry is more about having a greater chance of dying if I get it and increasing those odds by taking a drug that seems to negatively effect my immune system.
I like what you said about normalizing the crazy immune system. That makes a lot of sense to me. Thanks, again!
Right. Not exactly helpful.
Even though ultimately it is up to you, it’d be good to have a professional opinion. Can you contact him again to say that while you appreciate that you have the last say, you really could do with hearing the latest guidance on this from him. Even if he just directs you to a website, that’d be something.
I’m sticking with Imraldi as per the guidance I’ve had from my rheumy. I also take Mtx and that combination is thought to confer moderate risk. Based on past experience - last time I had 'flu was 2008 or 9, can’t remember when I last caught a cold - I suspect my true level of risk is small. But Coronavirus is an unknown quantity in so many ways so we do need our doctors to give us a helping hand with decisions.
Are you on any other medications?
I am eager for freely available antibody tests. Like many of us, I do have a fair few days & occasional weeks when I just feel generally lousy due to PsA. Therefore it’s not inconceivable that I’ve already had mild Coronavirus. Half my family are pretty sure they’ve had mild cases (they don’t live with me).
I’ve been on Cimzia for 2? years and it’s working well for me, I was previously on Humira for 5 years which worked well for that time.
I’m staying on Cimzia. In the last 7 years of taking biologics, I’ve had to go off them a few times for minor surgery etc, and what’s apparent is that my immune system functions much better on them, with hardly any symptoms from a cold or virus (with the exception of flu), and much worse off them. I even managed to get dengue for the second time (normally very dangerous to get it twice) whilst on Humira, and whilst I felt pretty awful, only had a couple of day’s off work. I also had Salmonella with only a day of feeling pretty awful. In contrast, long term steroids, which is been on prior to Humira, seemed to cause all sorts of weird infections - tropical skin infection, eye infection, all sorts of stuff.
In addition, there is no evidence that I’ve seen that that they increase risk of more severe COVID19 symptoms, and another member posted a link recently to a paper that suggested that biologics have not caused more severe symptoms in other Coronaviruses. This is of course balanced by the theoretical immune suppression that has led most health systems to stratify us as medium or high risk.
So, given that there is very little definite information out there, I’m going with my personal history of biologics not causing issues for me. Cimzia hasn’t been as great the last few months, and there was some discussion about changing biologics in February, but I said to the Rheumy I was reluctant to change it during the Coronavirus thing, and he agreed better not to if we could avoid it, on the same basis Stoney mentioned above.
The thing is for patients with PsA our meds don’t at all ‘negatively effect’ our immune systems at all. They would negatively effect someone with a normal immune system (whatever a normal immune system is) but how can they negatively affect our immune system when they help us feel so much better once we’re on one that suits and works for us?
So it’s misnomer and lazy labelling in my view to call our drugs immunosuppressants when the only reason we’re taking them is because our immune systems are insane in the first place. Yes I understand they affect TFNa or any number of interleukins etc etc but that’s solely to make our immune systems behave more normally.
However, say instead you have a cancer, there they have to do ‘suppress’, in the proper meaning of the word, the immune system in order to kill and exterminate the cancer cells. But with us they’re not killing parts of our immune system instead it’s a bit like giving Ritalin to a child with ADHD. That’s as controversial in many ways as us guys taking biologics too.
However my whole thought processes on our meds and why we have to take them, got a whole lot easier when I realised PsA is an insanity of my immune system and I had to try and make it more sane again, in order to get out of pain and incapacity. And I’m glad to say that on the whole our meds have worked for me in doing that. Therefore I remain of the view that my immune system is whole lot more sane and works far better when taking my biologic that if I was to stop it. Therefore I would prefer to be facing Covid 19 with some level of immune sanity than without it.
There is SUBSTANTIAL evidence that continued (Italy and UK) use of Biologics actually prevents the crazy things that happen to lungs that causes the deaths. The reaction causing the problem is very similar to what PsA does to our bodies - sending the immune system into overdrive. My rheumy group sent out a letter encouraging all to keep up their regimes if they had been on them for at least 6 mos OR were experiencing positive results. FWIW the new drug Remdesivir mechanism of action is similar to that of some DMARD or Biologics. That being said whats good for one doesn’t apply to all.
This answers the question I was about to ask. I was tested for COVID 2 days ago but don’t have the result yet. I’ve had a “head cold” and may have been in contact with a couple grandchildren who tested positive. I say “may have” because I wore a mask when with these grandchildren, but I was close to them for quite awhile (babysitting).
I normally would’ve taken my Enbrel injection yesterday, but held off…I’ll go ahead and take it now. I do agree it might subdue my immune system. I’m wondering if the medical community has mixed thoughts on this?
I’m crossing my fingers we (my husband and I) are negative!
Keeping fingers crossed for you too.
Medical community may have mixed thoughts to a certain extent but so far almost everything I’ve heard suggests that biologics are best continued and may indeed help to battle Coronavirus.
Keeping fingers crossed for you.
Have also just tested with hubby w the quick blood test, will have an answer on fri eve, contagion is rife in Italy so a good idea just in case.
When last year had serious respiratory crisis and possibility it was covid my gp told me to not stop methotrexate, indications generally appear to be not to stop treatments, if we will test positive we could double check with doctors and perhaps if possible also with rheumatologist.
All the best
Crossed fingers here too @Grandma_J.
Thanks @Sybil @letizia @Poo_therapy - we’re still waiting for our results. My head cold symptoms are less this morning, but I’ve been having some ice pick headaches off and on. We’re still crossing our stiff, crooked fingers and hoping the phone doesn’t ring with a caller ID saying CentraCare!!! (They call if result is positive—if negative, the results will be on our online charts… )
Negative here too, all the best