This may have been discussed and I apologize if so. I am 54 years old. I have psoriatic arthritis/psoriasis flare ups. The psoriasis for 35+ years and later the arthritis. I am also a 3x cancer survivor starting at 34 (out 20 years from first and 12 from last). I was taking Methotrexate for about two years. I made the decision to discontinue using it about a month ago as it weakens the immune system. During this COVID, I don’t want anything adding to the risk. The arthritis has been fairly decent but the psoriasis of course is back full force. I am considered an “essential” worker and am still out in the world daily. Has anyone else made the decision to discontinue the use during this time? I had normally taken it on Friday as it doesn’t hit me for a day or so and I don’t miss the part of it sucking life out of me. Stay safe everyone! This too shall pass!!!
I hope that you spoke with your doctor before deciding to discontinue it. I am not an essential worker, but my daughter actually is considered one as a grocery store worker believe it or not. I did a lot of reading on whether or not to continue taking meds. Everything that I saw recommended to continue taking meds as a flare would actually put me at higher risk.
I took myself off of the methotrexate figuring the same as you, that I need all the help I can get at this time of COVID. A week after I took my self off I asked my rheumy what he thought. He suggested I stay on the methotrexate. I didn’t. It’s been 4 weeks now and so far I feel fine. My psoriasis is a bit worse but manageable. As a side note, my GP agreed with discontinuing the methotrexate.
Sadly I’m of the view that taking yourself off any of our meds is NOT giving you the best chance to beat Covid 19 at all. Rather it’s making you more susceptible.
Looking at it rationally. The reason you have PsA and are prescribed these meds is because you have an ABNORMAL immune system. Our meds - all of them - work to normalise our abnormal immune systems, permitting them to stop their needless inflaming of our joints and tendons.
Covid 19 at its worst, they say, persuades our immune system to behave abnormally causing it to basically shred our lungs.
So for me I’d much rather be facing a Covid 19 infection with a more normal immune system thank to my PsA meds than a clearly unmedicated and therefore abnormal one by stopping my meds.
It does appear the world over that all the rheumys are united in their advice to us. Stay on your meds and stay at home. I’d rather follow that advice than the little scared voice in my head which might tell me otherwise.
Thank you all for your comments. Unfortunately, I am an essential worker keeping people alive so staying home isn’t an option. Employers don’t understand “I have an autoimmune disease”. We don’t get paid nor do our bills when we stay home. Please stay healthy and remember to never judge anyone’s decisions. Everyone’s medical issues/doctors are different. No two cancers or diseases are exactly the same. I am very adamant in my feelings that pharmaceutical feed off us. I have decided to take natural remedies which I am sure has kept me here after 3 bouts of cancer vs. traditional chemo/ect. Good luck!
My GP and other have both decided it was actually best given ALL my medical issues.
GP and other have both advised given my HUGE medical history that it is best right now. Keep in mind, your situation is not the same as mine. If anything, let this COVID help you to not judge. Unfortunately, when it’s over, life will go back to the way it was for most and most will continue to judge and be cold heartless humans that they once were.
Thank you! I also did lots of reading and researching. Please let me know which sites you researched.
@Warrior66 I’m glad that you worked with your doctors to make this decision. You are right that every situation is different. That’s why I wanted to make sure that you made the decision under medical advice.
I am completely out of work because of the shutdown, and was actually between rheumatologists when this started. I was able to see the new one last week, and she kept me on my meds. I had been looking at advice from the arthritis foundation, nyu, etc. What I was hearing was all the same advice. It’s safer to stay on your meds, but talk to your doctor.
What is the nature of your job? My teenage daughter is a cashier at a grocery store, and considered an essential worker in New York state
I can only speak for myself and my own logic regarding meds or no meds. When I think of how terrible I felt 18 months ago, I know that I don’t want to go back to that place. The fear of that place is far greater than the very slight chance of getting the C-19 virus. From my limited knowledge, it would likely take months of being off of MTX before really knowing the results and 3-6 months to get back to full benefit going back on it. When I consider the horrible months of high dose prednisone “bridge” while waiting for the Dmards to kick in…nope. I’ll stay on my course, and continue to hope for improvement as I slowly meander towards biologics. From the experience and wisdom I have found on this wonderful site, there is nothing instant about PsA. To quit meds today likely wouldn’t be of much benefit before the C-19 has run its course. But please correct my thinking if I am thinking wrong!
I am an LNA working with end of life care
You are definitely an essential worker.
I made the decision four weeks ago to stop Humira after consulting with me Rheumy. He said it couldn’t hurt. One of the things that led me to the decision was that I was put on Humira every week in mid-August. I cannot take MTX or NSAIDS and my one hour each way commute and travel, were really beating me up. I came down with Shingles 3 weeks after going EW and they lasted for a month and I was off the Humira until they were gone, I started back EW in October and within a few weeks was battling a case of light bronchitis, so off agian for two weeks. After that I was back on EW until four weeks ago. During that time I was in a lot of pain and constantly running a low grade fever due to the inflammation. I felt pretty beat up and whipped all the time.
When the COVID started being an issue in March I got worried. It seemed that since I had gone EW I was constantly battling some bug. When they decided I would be working from home, I stopped the Humira. I was a little worried about my immune system, but also wanted to see what the PSA did since I would not be commuting 12 hours or more a week and not traveling. By the time I stopped it, I was ready to turn in my retirement and disability papers. I thought I could tough it out for two weeks to see what happened.
The first week was rough, but things started getting a little better as I stayed home and worked. I am still a little sore, but last night I remembered it had been three days since I had had a pain pill. I usually take two or three a day with little relief. I am still sore, but not sitting in stop and go traffic for two hours a day has helped. Being away from some of the stress at work has helped, but I am working more hours a day than at work.
I told my wife last night that I was really getting used to not hurting as much because of not working and could get used to it. It will be May at the earliest before I have to go back to work. By then I may have decided it is not worth it. When I go back I will see if all the pain and stress returns. If it dies, I know it will not be worth it. I may try and hold out to October to get a bump in my monthly disability and then call it quits if things get as bad as they were. I just don’t think it would be worth for a few hundred more dollars a month.
This has been a real experiment in understanding what working every day is doing to me physically and mentally. I will probably stay off the Humra until things get better, but, I am not a physician and would not advise anyone to stop their meds. I know that the stress from the PSA pain will mess up our immune system more than the meds, but I wanted to try it for two weeks. So far, so good.
Always discuss such things with your MD.
I cannot imagine what sort of shape I’d be in now if I’d continued working. If it’s not absolutely necessary financially and it’s damn-near killing you - what’s the point?
There’s pride and the need for a purpose in life - but these things can be channelled in different ways. Really glad you’re carrying out this experiment - it takes guts.
I have also discontinued my medication due to the virus. I take cosentyx. I spoke with my rheumatologist and explained to him my reasoning and he said that was a decision I would have to make on my own that he completely understood why would be worried. I think it’s up to each individual person to assess their own situation and decide whether or not they need to discontinue or continue their medication. Good luck with everything.
I was off my biologic in Jan/Feb when I had a lapse in insurance but when I got back on my insurance in March I decided to hold off on restarting. I’m a physician and trying to get on the front lines and felt that I needed all the help I could get. It made a big difference with fatigue but had helped only mildly w pain. I’m surprised how well I’m doing actually, even though I’m still kind of looking forward to getting back on it. I hate being overwhelmingly tired so frequently. If I’m not seeing patients within 2 weeks I think I’ll start up again, if I can get approval from the patient assistance program (new insurance covers only 50%).
My rheumatologist did a telemedicine consult with me 3 weeks ago and she agreed with my decision to stop methotrexate. She also insisted that I immediately stop taking all NSAIDs, including my go-to diclofenac which helps my disabling PsA greatly. She said she is stopping all biologicals and most DMARDs for all her patients over 40 because of the increased susceptibility to infection. She said I could use topical NSAIDs for the joint pain only. The only DMARD she left me on was leflunomide, which I’ve been on for 8 months while showing no leukocytopenia or liver enzyme abnormalities on three successive blood tests.
With the doctor’s permission, I stopped my methotrexate about a year ago. After 6-7 months, it was clear I needed it with my Enbrel as I was having too many flares.
What I’m finding interesting with the treatment for the worst cases of Covid 19 is the reach by the medics for our biologic meds. When the ventilator is failing to help the patient and even when the ECMO machine is failing to help the patient, there’s now reports that they’re reaching for IL antagonists like Tocilizumab which hits IL6. The reason appears to be be because of the autoimmune storm Covid 19 causes in the lungs of some people and dumping this type of med appears to then aid recovery. Look at medical journals discussing treatment of Covid 19 patients in Washington State. It’s really interesting.
It certainly make me feel better I’m on a IL17 biologic that’s for sure.
Yep, Actemra is in phase 3 trials in China already. Fascinating stuff - makes sense though, as the cytokine storm is also the killer in many viruses with significant mortality (eg SARS, MERS , EBOLA)