So you’re still taking Leflunomide and getting on pretty well with it @PetieCue ?
I’m a bit confused because on the ‘Leflunomide and hair loss’ thread you don’t sound too impressed by it and say ‘… as the leflunomide washes out of my body, the rash is gradually subsiding.’
I daresay I contradict myself quite a lot but I’m not a health professional and everyone knows my views are just personal ones.
@Sybil very observant. And I can see why you’d be confused. I am, technically, a former health professional, though my license is still valid for now. I copy edit medical journal articles freelance now when I’m not writing fiction and poetry. I’m writing on this forum, not as a health professional, but rather as an individual with PsA who has a little more knowledge than most on how to interpret science research and medical statistics.
My timeline runs like this:
Aug 2018: Begin with new Rheum (Dr. G) in new city, after a year of peripatetic travel, taking only PRN diclofenac.
Sept 2018: Bloodwork and X-rays.
Oct 2018: Dr. G begins me on Leflunomide.
Dec 2018: Bloodwork shows neutropenia; hair loss begins in earnest
Jan 18: Leflunomide working well. Begin PT and adaptive yoga.
Feb 19: Bloodwork shows neutropenia gone, everything basically OK
March 19: Feeling great!!! Leflunomide is a miracle!!! Add modified weight lifting.
June 19: Develop neuralgia in feet, confirmed by Dr. G on exam
August 19: Neuralgia worsens; having trouble balancing in yoga
August 19: Dr. G takes me off leflunomide
Sept 19: Chest CT and bloodwork to rule out TB before trying biologic (living in TB-endemic area so this is standard of care). Getting set up on patient assistance program for Cosentyx.
<PsA worsening ow fck fck f*ck!>
Oct 19: 4 weeks of loading Cosentyx/secukinumab. PsA worse than ever by end of month.
Dec 2, 2019: Dr. G wheedles me into taking the first monthly maintenance dose of secukinumab. Immediate violent vomiting and diarrhea (mild concussion on toilet, that’s how violently I puked). Fever for 48 hours.
December 2019: Intermittent bloody diarrhea, 2 episodes of blepharitis (mistaken for pinkeye by me & GP at first)
Jan 20: Restart leflunomide. Move into new apartment. Switch gyms. Develop rash. Episodic blepharitis continues.
Feb 20: Rash continues to worsen as I eliminate environmental and then dietary allergens. Bloodwork normal except eosinophilia.
March 1 2020: First dose of methotrexate. Next day PsA pain is gone, but I sleep 18 hours/day for the rest of the week. IM to Dr. G who agrees MTX is probably not for me.
March 20: Due to Dreaded Plague, Dr. G sees me by telemedicine, takes me off all NSAIDs, leaves me on leflunomide (not connecting rash to leflunomide at this point, I don’t mention it’s getting worse) only one mild flare of blepharitis. Leflunomide not as effective as it was the first time, but hair not falling.
April 20: Finally dawns on me that I started leflunomide at same time rash began. IM Dr. G with photos of rash. She agrees that I should try stopping leflunomide.
Now: I am 4 days off leflunomide and the rash has stopped expanding to new areas of my body and affected areas are healing over. Interestingly, I’ve had 3 good PsA days in a row…probably a coincidence.
I feel like this is an overshare, but you did challenge my stories and I felt that merited an in-depth explanation. Hope this answers your questions.
This article suggests that IL-17 is probably not directly affected by the SARS-COV-2 virus one way or the other. IFN-γ, IL-1, IL-6, IL-12, the interleukins and that were elevated in severe SARS cases, didn’t overlap at all with the interleukins targeted by PsA drugs. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7079893/
On the other hand, a deficiency of T-cell response early in the illness seems to be a hallmark of severe illness
https://sci-hub.ren/10.1016/j.jcv.2020.104361
. Severe patients whose T-cells subsequently increased, (which would enable an antibody response), did better than those who never had a T-cell response and failed to make antibodies. Since PsA treatments are oriented towards blunting T-cell responses, It’s still to be determined whether our doctors should be taking most of us off our meds or not. One can say pretty certainly, this is not the time to be starting a new PsA med, since almost all of them frequently cause a dip in T-cells during early use.
I suspect it will turn out to be a matter of timing. There’s a rebound period after stopping some medications, most of our meds have a very long washout period, and the illness in COVID-19 is fast moving. I do know that, in general, MDs and medical researchers tend to have a blind spot surrounding the adverse effects of drugs on individuals and populations.
I know now from working at home for a month how much better my quality of life would be if I retired and filed for disability. Financially it is not an issue. Right now I am getting push back from my wife.
So where to go from here eh? None of my business … but wondering whether you and your wife can sort out some kind of new modus operandi … different use of space in house etc.
I really hope you get this sorted between you and your wife @tamac. Simply because really you need to be trying to live your best life after all this Covid 19 stuff instead of flogging yourself at work and living in such pain.
Precisely @Jen75. It’s utterly fascinating. Who would have thought the rheumys would be so needed in fighting this horrid virus. Not them I’m guessing either. But they are. I’m excited as to what will be learnt from it all going forward. Despite to abject horror and and sadness it’s created.
Tamac, I have to ditto what poo and Sybil are saying, I really do hope you can work it out and get that better quality of life.
I have stopped Methotrexate and limited the methylprednisolone during this time. I had just started Cosentyx as this Covid-19 was starting to come into the country since Humira stopped working for me and Embrel put me in a wheelchair. I was having some pretty annoying recurrences of skin and joint problems while my system got used to the new med, so my Dr added methotrexate. I have been fortunate to be able to work from home but my husband is a DOT worker and thus essential. My Dr’s office called about going for bloodwork and I let them know I was not using the methotrexate during this time but if I needed it I would inform them. When my flares start up I take the methylprednisolone. It also messes with the immune system but it is what I felt was my best course of action. My Doctor agreed for now. Cosentyx seems to be working pretty well, not as great on the skin but my joints are doing okay. I think at this time we all have to look to where we are and what helps the most with the least risk. Please be safe and thank you for being on the front lines of this war.
I thought I would check in. I have been working form home for 10 weeks. No plans to go back until at least July 6th. I have been thinking and discussing it, and I think I will retire and file for SSDI when I have to go back. I have an incentive to stay until August 1st, my annual bonus.
I have been off Humira for about 12 weeks now. I had a virtual appointment with my rheumy a week ago. I told him I was beginning to think I needed to start the Humira back up. I got really stressed out when I thought I was going to be forced to go back to work. The stress brought the pain back quickly and bad. I had a nice flare up. I worried about going back to work for two weeks and was miserable.
Rheumy said that since I was off the Humira, if I could get by, don’t start them back up now. I had a serious discussion with the wife about retiring during all that. I’m not sure she is ready for me to do that yet, but I am. I had about 7 weeks of little pain.
I went from taking several pain piils a day to one pain pill ever several days! Once I found out it will be a while before we “may” go back to work, the flare up has settled down some.
I am having to force myself to get and move and do a few things. I have been sitting on my butt for ten weeks running a computer and I am paying for it. I venture out to the store and it exhaust me. I am starting some projects for what is called Field Day for HAM radio operators. It is the last weekend of June. Everyone operates around the clock for 24 hours and sees how many other people you can talk to. With COVID, everyone will be doing it from home. It is an emergency drill practice and HAM radio clubs usually setup in a park and run everything off generators and batteries. None of that this year.
I have a bit of work to do to string some antennas through my trees. I hope I can find the energy to do it. I always enjoy Field Day.
So, I will remain off the Humira until…some point in the future.
Oh, I did talk to a disability lawyer. He told me something that will make it easier. I will draw a pension from my job, but was worried about social security dragging their feet to pay SSDI. Since I am 62, he said go ahead and file for early retirement, that would give me about 75% of what I should get on SSDI. Once I get SSDI, they will go back and pay the difference from the beginning and it will not effect my eventual SS retirement. That made me fell a lot better!
Wish me luck!
Now that sounds a whole lot better doesn’t it? And it sounds like you’ve now got to grips with what your commuting and working life was doing to you. And it seems you’ve seen your light at the end of that tunnel.
I’m not sure I agree with your rheumy saying stay off the humira though.
Enjoy the HAm radio Field Day but most of all best of luck with the retirement plans for later this summer.
Thanks so much for your check in Tamac. It was so good to hear how working from home has helped you, and I’m pleased you got the opportunity to do that and get a better feeling for retirement. Also that you got some good advice from a lawyer that’s reassuring.
I’m just so pleased for you that you can see a practical way forward. Keep updating us!