Cough cough cough - Methotrexate?

[JanetRosslyn]

I have PMR/GCA/LVV – all currently under control on 5mg Pred and 25mg MTX.

However… I’ve had a terrible cough for three weeks now. Thank the Lord for Tena Ladies!

I’ve gone through a bottle of Kovonia from the local pharmacist; a course of Doxycycline 100mg antibiotics from GP1 (telephone consult); a course of Co-Amoxiclav 500/125 antibiotics from GP2 (face-to face consult); and the cough persists. If I sit still I’m mostly fine, but if I move the coughing starts and I think the whole street can hear me! Five days into my second course of antibiotics I saw the pharmacist and asked if he could give me something to supplement them, to help clear what feels like mucus on my chest. He refused, telling me I was wheezing and that I needed to tell my GP the antibiotics weren’t working. I spoke to GP3 yesterday (telephone consult) and he has prescribed Carbocistein to loosen the mucus but says I do not need more antibiotics. I don’t have a fever and I’ve done four COVID tests from three different boxes, all negative, but my ribs are hurting from all the coughing and I’m feeling exhausted! Between coughs I’m fighting for a chest X-ray requested about a week ago by GP2, which the doctor's receptionist insists has been sent and which the hospital insists they have not received!

Questions:

(1) As my PMR/GCA remains under control I have not thought about ‘sick day rules’ and have not increased my Pred. I'd forgotten all about it and none of the three GPs I have spoken to have mentioned it. I’m tempted to just leave well alone?

(2) I have stopped my MTX for the past three weeks (all three GPs have told me this!) and won’t start it again until I’m better. However, as this has had no obvious effect on my PMR/GCA, I’m wondering how long it would take to notice any difference and if I actually ever need to restart it?

(3) I know MTX can damage the lungs – so I’m concerned my cough may be this – but as I’ve been taking MTX since Sept 2019 I’m wondering if it would have happened before now?

[PMRpro Ambassador]

Did you do LFTS for Covid right at the start? It is still possible it was Covid - my daughter did 3 negative tests over a few days before using a different batch and getting a positive - at the same time as a negative from the old batch (all issued to staff by the NHS)! They are very unreliable for the Omicron variant. There also appears to be a cold making the rounds with a very persistent cough, Do you have a fever as well? Have you got a pulse oximeter? Handy to check oxygen levels.

I think it is possible for such MTX adverse effects to take a long time to appear though it is rare. But according to the articles I have read methotrexate pneumonitis could occur at any time. I'm not impressed at their attempts to order a chest x-ray - is there not a walk-in centre near you? In that case the GP writes the referral and YOU take it to the unit. Can't get lost in the system that way - and the blame game has no place in this.

MTX stays in the system for up to a couple of months so you may not have lost its PMR effect yet. But I wouldn't be restarting it until a proper diagnosis has been made for the cough.

[JanetRosslyn in reply to PMRpro]

Thank you for your prompt reply

I remember reading what you'd said about your daughter's COVID tests, so I did mine straight away and have tested regularly ever since, using different batches - all negative. I ordered a new batch yesterday which I've just been informed will arrive today.

I don't have a fever - temperature 36.3. Pulse oximeter fluctuates 93/94 in the mornings and rises to 94/95 as the day progresses. Doctors are aware of this and aren't concerned.

Good news though... I've just got through to the X-Ray Dept and they've said that my request is now on their system and I can go there any time as it a walk-in centre!

I'll just finish my hot honey/lemon/ginger drink and then I'm off.... after I've rummaged around for several pound coins for the hospital car park.

[PMRpro Ambassador in reply to JanetRosslyn]

Our hospital carpark takes paper and gives change! Unfortunately, the police-run carparks in town don't take plastic yet despite the law being all shops/bars etc must take cards! But if I have no money (the usual status these days) I drive to the station and take the train which is already paid for with my Mobicard and which stops at the door of the hospital

[JanetRosslyn in reply to PMRpro]

It's not my usual hospital, so I'm not sure what the car park charges are or how you can pay but thought I'd prepare for all eventualities. Did think of taking the bus (I have a free bus pass) but I don't think the other passengers would be very happy with me coughing all the way there and back. I'm off now...

[MrsNails]

Hi Janet, good you’ve got your X-ray, any cough lasting longer than 3weeks needs investing as per the Advert on TV & MTX Users are prone to chest/lung issues.

I’ve not usually noticed any drop in the effect of MTX for about Four Weeks & l’ve stopped in several times.

Personally, l wouldn’t pull Suck Rules into play now unless your breathing deteriorates & then after a GP’s say so….

Let us know how you get on 🍀

MrsN

[JanetRosslyn in reply to MrsNails]

X-Ray done. Results to GP in 10 days

[MrsNails in reply to JanetRosslyn]

10days 🤦🏻

[JanetRosslyn in reply to MrsNails]

10 days. Hopefully that means 10 days and not 10 working days!

[MrsNails in reply to JanetRosslyn]

l’d ring the Surgery on Thursday maybe Friday & ask when the result might be back!…….

Do you have access to the NHS App because sometimes the Test Results are put on there once they’ve been read - you can’t see the results but you know they’ve been looked at 😉 so can then follow it up!…..

[PMRpro Ambassador in reply to JanetRosslyn]

I hope that if, when they look at it to check it is OK, they see something dodgy, they react!!!

[PMRrunner]

I stopped my methotrexate in July when I had shingles and was advised not to restart till I felt better, by which time I had caught covid for the second time. In total I didn't take my methotrexate for 8 weeks, I didn't notice any effect though I did go back up to 5 mg prednisolone. Before the shingles I had been on a slow taper to 4mg

[2013mayo]

hi,

I too had a terrible cough, it started with what I thought was a cold, then as it went on I thought it was covid, I too done several tests all negative, eventually I phoned the doc, at first it was tel call, she gave me a weeks supply of doxycycline which didn’t work, I then phoned doc again and this time doc wanted to see me, a different doc, she was excellent, I first got told off for letting it get so bad, she said as I was on pred my immune system was low and must always be seen at surgery ( not easy these days) anyway she then doubled my dose of doxycycline and put me on 30mg pred for five days, I then he’d another five days of high dose doxycycline which done the trick.

Hope you get sorted quickly as it’s very debilitating keep coughing.

Take care

[Karenjaninaz]

Are you taking any Bp meds? ACE inhibitors have cough as an adverse effect. It’s called the “ACE” cough; drugs ending in “pril”can be the culprit.

Another culprit can be allergic asthma from Fall foliage. My daughter coughed constantly when we went on vacation in VT. She has asthma and was allergic to the Fall grasses.

[JanetRosslyn in reply to Karenjaninaz]

No BP meds but thanks for your input.Never had allergies or hay-fever before either... but anything is possible.. The hospital are still doing more tests. Thanks again.