Rituximab covid paxlovid etc...

[irishponies]

Hello, I managed to get COVID despite precautions such as vaccinations, mask wearing, isolation, etc. I had a fever, and painful, loud breathing, etc.

Rheumatologist (phone consult) sent me to emergency dept at hospital. That doctor prescribed paxlovid for 5 days. Rheumatologist stopped methotrexate for 2 weeks and plaquenil for 1 week. Prednisone 5 mg daily continued. Last rituximab infusion was 6/22 (two total).

Question: Should discontinuing methotrexate be considered at this point? It has been 2 weeks since the last dose. It did not reduce joint/muscle pain at all and was ineffective in reducing "bad levels" in labs after 7 months (these levels increased). Prednisone started at 20 mg in Aug 2021, reduced to 5 mg in March 2022 (almost no taper). Started infusions, two total in June. Next appt with rheumatologist is September. He had "suggested considering" a reduction after the infusions. I do not wish to take methotrexate if it is not effective in treating the ANCA vasculitis.

Also, lingering sinus infection since COVID diagnosis/treatment. GP appt next Tuesday.

Thank you for your time.

[Grizzly-bear]

See how you go with rituximab as it can take a couple of months to fully work (it works immediately on blood but can take a couple of months to get into tissue) and you may find you don’t need an additional immune suppressant, but some people do. I’m on rituximab and 5mg prednisone, but my pred is always temporarily increased when I get an infusion and then I taper back down to 5mg from 15mg. Atm I don’t need anything in addition to this as rituximab is working well for me right now (long may it last).

Hope you’re ok with paxlovid and covid gets fully resolved.

[irishponies in reply to Grizzly-bear]

Hi Grizzly-bear! My question is coming off the methotrexate. I have been on it since December 2021, more than 7 months. It has NOT effected the pain level nor been effective in controlling the labs. It is not controlling the nasal issues. The methotrexate is NOT working except to give any and all horrible side effects that it can possibly give including frequent vomiting and my hair falling out. Yes, I am taking folic acid. The rituximab was added to the methotrexate and prednisone this June. But the rheumatologist has me on methotrexate 20 mg weekly. The methotrexate was only stopped TEMPORARILY for 2 weeks due to the paxlovid treatment. I am not asking about the prednisone nor the rituximab. Those two medications are staying the same. I am asking about coming off of an ineffective methotrexate but does one taper? I have been off it COLD due to the paxlovid treatment and I am hesitant about restarting it this Tuesday. The rheumatologist appointment is for the end of September. None earlier. Thanks for your insights!

[Grizzly-bear in reply to irishponies]

I’d imagine that you should come off the methotrexate now you’re on rituximab - my consultant just has me on azathioprine (similar to methotrexate) when my rituximab is wearing off and I’m waiting for an infusion, but as soon as I’ve had the rituximab infusion I come off the azathioprine.

[irishponies in reply to Grizzly-bear]

I hope so but the appt with the rheumy is Sept. I do not want to go back on the methotrexate. It made me sick and was ineffective. I feel less pain 4 weeks after 2 infusions than I did in 7 months of methotrexate. It's not good yet but it is not unbearable, crying in bed for days painful any more. Methotrexate did nothing but make me quite sick, I really do not want to take it. It also was completely ineffective in any blood marker reduction. Thanks Grizz!

[Grizzly-bear in reply to irishponies]

From everything you’ve said you shouldn’t be on methotrexate as it doesn’t work for you. Rituximab works for most and it sounds like you might be one of them. Fingers crossed for you, but being on a drug that doesn’t work is just adding unnecessary toxicity to your body so in my opinion should be stopped. I’m guessing you’re also on rituximab because there’s an acknowledgment methotrexate isn’t working so it should be discontinued.

[Investigator1]

Hi Irishponies. Blimey mate bit of a cocktail there. I run along the same lines as Grzzley here, when I was put onto Rituximab there were all sorts of options on the table, Azathioprine was ineffective but methotrexate was considered but was either or not both. I specifically remember asking the question is it both? And was told no need. So Rituximab it was and that was November 2020 and 6 months later the Pred was gone. It’s a question you need to ask if just for peace of mind. Take care. Nick

[irishponies in reply to Investigator1]

Hi, My question is coming off the methotrexate. I have been on it since December 2021, more than 7 months. It has NOT effected the pain level nor been effective in controlling the labs. It is not controlling the nasal issues. The methotrexate is NOT working except to give any and all horrible side effects that it can possibly give including frequent vomiting and my hair falling out. Yes, I am taking folic acid. The rituximab was added to the methotrexate and prednisone this June. But the rheumatologist has me on methotrexate 20 mg weekly. The methotrexate was only stopped TEMPORARILY for 2 weeks due to the paxlovid treatment. I am not asking about the prednisone nor the rituximab. Those two medications are staying the same. I am asking about coming off of an ineffective methotrexate but does one taper? I have been off it COLD due to the paxlovid treatment and I am hesitant about restarting it this Tuesday. The rheumatologist appointment is for the end of September. None earlier. Thanks for your insights!

[Mooka]

I only took prednisone when I was on rituximab but we are all different and can’t really advise you. As investigator1 said rituximab does take a few weeks before you feel better. I hope you get over Covid soon.

[irishponies in reply to Mooka]

Hi Mooka, My question is coming off the methotrexate. I have been on it since December 2021, more than 7 months. It has NOT effected the pain level nor been effective in controlling the labs. It is not controlling the nasal issues. The methotrexate is NOT working except to give any and all horrible side effects that it can possibly give including frequent vomiting and my hair falling out. Yes, I am taking folic acid. The rituximab was added to the methotrexate and prednisone this June. But the rheumatologist has me on methotrexate 20 mg weekly. The methotrexate was only stopped TEMPORARILY for 2 weeks due to the paxlovid treatment. I am not asking about the prednisone nor the rituximab. Those two medications are staying the same. I am asking about coming off of an ineffective methotrexate but does one taper? I have been off it COLD due to the paxlovid treatment and I am hesitant about restarting it this Tuesday. The rheumatologist appointment is for the end of September. None earlier. Thanks for your insights!

[Mooka in reply to irishponies]

I did understand what you were asking but didn’t phase my reply very well. I meant I didn’t need any other meds other than prednisone when I was on rituximab and maybe when the rituximab kicks in your doctor may decide you don’t need the methotrexate. I only took methotrexate for a few weeks when I flared. I stopped taking it because of the side effects and went back for more rituximab.

[irishponies in reply to Mooka]

That sounds like a plan! I feel less pain 4 weeks after 2 infusions than I did in 7 months of methotrexate. It's not good yet but it is not unbearable, crying in bed for days painful any more. Methotrexate did nothing but make me quite sick, I really do not want to take it. It also was completely ineffective in any blood marker reduction. Thanks Mooka!

[Johndeeregreen]

Similar path here too. I started with rituximab and 60mg prednisone and early relief was slow so methotrexate was added. I got covid after being extremely cautious, but I’m a health care provider so it was inevitable. I also have had all my vaccines and taken evusheld and still have acquired covid 3x over the last 18 months. I found out I had GPA 3 months after the first round with covid and 2 vaccines. I currently take methotrexate and it has helped control my bad nasal problems. Joint pain and fatigue is at a very low tolerable level and some nasal congestion persists from scarring. Rutixmab going to every 6 months.

I just ran a big 10k race, Peachtree road race, and climbed a 14,000ft mountain in Colorado with my daughters , so I’m proof we can over come. Hang tough and you control this crazy disease. Greg

[irishponies in reply to Johndeeregreen]

Hi Greg, My question is coming off the methotrexate. I have been on it since December 2021, more than 7 months. It has not effected the pain level nor been effective in controlling the labs. It is not controlling the nasal issues. The methotrexate is NOT working except to give any and all horrible side effects that it can possibly give including frequent vomiting and my hair falling out. Yes, I am taking folic acid. The rituximab was added to the methotrexate and prednisone this June. But the rheumatologist has me on methotrexate 20 mg weekly. The methotrexate was only stopped TEMPORARILY for 2 weeks due to the paxlovid treatment. I am not asking about the prednisone nor the rituximab. Those two medications are staying the same. I am asking about coming off of an ineffective methotrexate but does one taper? I have been off it COLD due to the paxlovid treatment and I am hesitant about restarting it this Tuesday. The rheumatologist appointment is for the end of September. None earlier. Congrats on your athletic endeavors! Very inspiring.

[Johndeeregreen in reply to irishponies]

I have come off methotrexate cold turkey with no ill effects when I had surgery. My rheumatologist took me off several times this past year for the various surgeries and withheld it fir 2 -3 weeks then put me back on it. Hard to say if it truly helps me but when rituximab was slow to take effect the methotrexate seemed to reduce my severe nasal symptoms in the past. Now that all symptoms are significantly reduced I do wonder if I should come off it altogether.