Covid positive, do I continue to take my hydroxy? No one seems to be able to tell me.

[Peacox]

Hello everyone, I haven't posted on here in a very long time, but I do read all your posts often. I can't find advice anywhere -- not from my GP (who didn't know the answer) and my rheumy nurse helpline is closed due to low staffing levels and I have googled like mad -- so I am here to ask your very sage advice. I tested positive for Covid yesterday. I currently have active disease (RA) but am only on the hydroxychloriquine (due to start Methotrexate soon) and have been on it for 12 years. The question is, do I keep taking it while I have COVID? I really can't find a simple answer and am starting to panic. Thank you do much. What a mess this all is. All best wishes

[Madmusiclover]

Try NRAS helpline.

[Peacox in reply to Madmusiclover]

Thanks. I did & although they can’t give medical advice they were very helpful & lovely.

[Lolabridge]

I'm sure I've read somewhere that if your RA is not well controlled it's best to continue taking your RA medication rather than skipping a dose(s). That may have been in the most recent edition of The Lancet Rheumatology.

Try looking on the NRAS or the British Society of Rheumatologists website or call the NRAS helpline tomorrow.

[Peacox in reply to Lolabridge]

Hi, thank you! I couldn’t find that specific advice on the websites. I did finally get an answer from Rheumatology after sending an email (as I said their usually telephone line was closed due to staff shortage). They said I definitely should keep taking it. Thanks so much for taking the time to reply.

[14bubbles]

I did when I had COVID couple of months ago, didn't even occur to me to stop taking it tbh

[Langers2]

I'm on methotrexate and continued taking it when I had covid, but I only had mild symptoms x

[Sheila_G]

I don't know is the short answer. I hope you get a professional response soon.

[LJS13]

The only thing I can say is , normally when you are taking your meds would you stop to get over an infection/cold or anything else? I know I’m on jak inhibitor and if I’m ill I would normally stop to get over an infection because if I carry on with my meds I struggle to get rid of the infection. I had a similar issue not long ago so I decided to go with the advice I had been given previously when on a different drug from my rheumi. I’m the same as you trying to get hold of a rheumatologist is like gold dust. Hope you feel better soon

[allanah]

Have you had infections / viruses in the past and stopped them? I just had covid and had to come off all ra , heart, stating, blood thinning drugs whilst getting the antiviral treatment.

I would ask your pharmacist if RA team not around x

[NTTD]

Hi, I have also been on hydroxichloqine for 12 years, I continued taking it while having covid without any implications, I was knocked off my feet with it for 2 weeks with the virus.

May I ask you a question, are you going onto to methotrexate due to hydroxichloqine not helping now? I have been struggling since December with flare in feet and hands with extreme fatigue, my doctor increased my hydroxichloqine which helped a bit but I have a feeling rheumatology are going to suggest methotrexate which I am petrified of taking due to it's side effects. My blood results and xray show no inflammation which is crazy when I have felt so poorly.

Hope you are not too poorly with covid and good luck with your new treatment x

[14bubbles in reply to NTTD]

Hi, I know this is off topic from the original post but your situation sounds very similar to mine right now. I've been on hydroxy for 7 years and for the last year or so it's not been as effective so at my last rheumatology appointment last month they suggested methotrexate...I've been thinking about it for a month as I was also concerned about side effects and things. My bloods and x-rays are also negative for inflammation but my arthritis is really not under control right now and it's causing me a lot of grief so I have decided to give methotrexate a try...need to phone the advice line today to get the ball rolling on it. I'd be interested to hear what you decide too if you feel you'd like to share your experience (don't want to pry if you don't want to share!)

[Peacox in reply to 14bubbles]

Yes, it’s very similar. I didn’t want to go onto methotrexate for all the reasons you state. I’m still very nervous about it. But I can hardly walk these days — I’m stick bound! As the pain is SO bad. My hands are also a mess, and that makes work difficult. So I’m left with no choice. Sadly my rheumatology dpt is in a bit of a state so I’m doing a lot of chasing up, for which I have little energy. But everything is chaos right now. So yes, we’re in quite the same boat, I think. The consultant (who is a stand in because the real consultant is still off sick after two years) said I should “feel the fear and do it anyway”. I wish you lots of luck. Please do let me know how it goes.

[NTTD in reply to 14bubbles]

Hi, your situation does sound very similar to mine. I would be interested to know how you get on with methotrexate and I have an appointment with rheumatology the end of this month so not sure what the outcome will be yet but happy to share what I decide 😊. Good luck with everything

[Peacox in reply to NTTD]

Hiya, I have had a bad couple of years. After having to have surgery to remove an ovarian cyst I went into mad flare up. They tried me on Leflunamide & Sulfasalazine, but both made me very sick. Then the pandemic hit and — because I’d moved house — I was referred to a new hospital and they kind of lost me in the chaos, so I’ve been left all this time. Recently been prescribed the Methotrexate but I think I may have been lost again as it’s been a few weeks and I’ve not heard back. It’s all been a bit of a mess tbh.

[nomoreheels in reply to NTTD]

Hiya NTTD. I moved on to methotrexate when hydroxychloroquine stopped working… it’ll be 13 years later this year, so safe to say side effects haven't been an issue for me. If your compare side effects between HCQ & MTX there's not a not of difference between the common ones, or severity of them & of course we are monitored on them. Is it reading here that's worried you? If so if you're basing the frequency of them off a forum such as ours then you're unfortunately not getting a true or general reflection I’m afraid. Most who use them are seeking help, advice or experiences when struggling whilst those doing well on it without issues are getting on with their lives. Have you discussed your concerns with your Rheumy at all? I'm sure he/she will be happy to talk through your concerns with you if MTX is to be the next DMARD suggested for you.

Unfortunately flaring is as you'll know due to lack of disease control & that's when things start to go awry.We are prescribed folic acid too, or can change to injections if needed or preferred. There are other DMARDs if MTX doesn’t suit you or you really feel frightened by it. Of course, we're always here to talk through any concerns that may crop up too. 😊

[NTTD in reply to nomoreheels]

Thank you very much for your post. I had never really thought of those who get on well with methotrexate as you mainly hear negative reports about the horrible side effects. I think for me as I have been feeling so unwell with my RA for months now I don't feel I could cope with any new side effects on top of that, but I may have no choice if I want to get to a better place and have a better quality of life . Unfortunately I find my rheumatology team difficult to talk to, I feel like just a number, not an individual and they have no empathy for concerns you may have about treatment and side effects. My rheumatologist actually turned his back to me once out of frustration because of my concerns about taking methotrexate, he snapped at me saying "why don't you want to take it" instead of being caring and understanding and trying to reassure me, I get very anxious when I see them. But thank you I will definitely think about what you have said, much appreciated 🙂.

[oldtimer2]

I was on hydrochloroquine for many years and was always advised to continue it if I had some other infection (which was quite often as I worked in health care).

[Peacox in reply to oldtimer2]

Thank you x

[Garnacha]

Hi I recently rested positive for covid & spoke to rheumy helpline, they said to stop methotrexate & lefluminode until I was either negative or symptoms had gone, I asked about hydroxychloroquine & etoricoxib that I take & they said to continue with them x

[Peacox in reply to Garnacha]

Thank you x

[nomoreheels]

Having active disease would encourage me to keep taking my meds, whichever they may be. I'm on MTX & pred & whilst it's best to seek advice from the original prescriber I’d certainly continue taking it until told otherwise. A flare on top of covid would be unnecessarily hard I would say.

I hope you find your answer, preferably from one of your Rheumy team. I hope you're not too poorly either.

[Peacox in reply to nomoreheels]

Thank you. Rheumy eventually called to say continue taking the meds.

[nomoreheels in reply to Peacox]

Oh good.