awful cough since starting suflasalazine alongsid... - PMRGCAuk

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awful cough since starting suflasalazine alongside methotrexate

alysonkerry- profile image
18 Replies

my husband was diagnosed with PMR over 3 years ago after a year of tapering steroids and also starting methotrexate he was still getting aches and pains and was given sulfasalazine which he has taken for a year or so and this has helped control his pains and inflammatory markers along side the methotrexate However after starting this drug he started to get a dry hacking cough which has progressively got worse. He has spoken to both the gp & rheumatologist and they insist it is nothing to do with either meds or the combination of them and other meds he is on for high BP etc. However when we look into side effects of both meth and Sulfa they say a cough can be one of many side effects and to get in touch with your DR. He has had a chest x Ray tried an inhaler and more steroids and nothing helps it is keeping him awake at night and embarrassing during the day as everyone thinks he has covid which he hasn’t. Now his latest blood test for the first time ever shows he has low neutrophil (type of white blood cells) we don’t know what to do next no one is listening or seems interested. He has now been told to not take his next dose of methotrexate and to have more bloods done next week he’s scared of stopping either drug without alternatives as he doesn’t want the PMR to return, does anyone have any similar experiences or advice please many thanks 😊

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alysonkerry-
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18 Replies
SnazzyD profile image
SnazzyD

How frustrating. Interesting thought process, because they have magic powers they know exactly that it isn’t the medication for certain but not magic enough to say what it is. Instead he’s been told to go away because of a clear chest x-ray, not their department. Not good enough to my mind, especially as it is a hacking cough not just a occasional little nuisance. Did the doctors hear the cough?

Is it productive ever or just dry? Where does it originate, throat or chest?

Did he ever have covid?

Does he suffer from acid reflux, especially at night? Have he tried taking a gaviscon before bed for a week?

How low were the Neutrophils?

What BP meds does he take?

alysonkerry- profile image
alysonkerry- in reply to SnazzyD

hi snazzy thanks for your prompt reply the cough is dry and originates from the throat I would say. His neutrophils were 1.49 and apparent should be 2 or above ? The cough is nonproductive but it does make him gag and even a little sick at times. He did have covid during the actual pandemic and thankfully wasn’t too poorly with it and he is fully vaccinated with covid and flu jabs. He does suffer from acid reflux and takes lansaprozole daily and the gp did give him gaviscon to take previously when he also told him to try an inhaler but it didn’t help. His other meds are losartan ezetimibe and allopurinol as well as folic acid and the methotrexate and sulfasalazine so he is on a cocktail of drugs. The cough didn’t start though until he added the sulfasalazine to the mix ? So goodness knows he has managed to get an appointment this afternoon with his GP but I don’t hold out much hope to any satisfactory conclusion. Really appreciate your thoughts and advice huge thanks 😊

SnazzyD profile image
SnazzyD in reply to alysonkerry-

I have had a lot of attention on my Neutrophils over the decades and 1.49 is not low enough to scare the horses. I usually coast around 1.2/3 and 2.5. 1 or under tends to raise an eyebrow. However, one reading alone, unless it is really low, is not as useful as looking at a trend over time. So repetition to see if it is continuing down and retrospective analysis if possible is important because he is not fighting fit in the face of it. Also, the other cells in the full blood count test are relevant to see if all the levels are lack lustre or whether the Neutrophils stand alone in being sub-par. If they are all a bit depressed or others raised, it may indicate other issues, the wider bone marrow for instance. In the case of his medications this is quite relevant.

alysonkerry- profile image
alysonkerry- in reply to SnazzyD

thanks again that’s really interesting and reassuring too, the rest of his white cell blood count is all in the normal range although one reading at the lower end apologies as dont have the readings in front of me at the mo. His iron levels are always a little outside the norm Ref range (very slightly lower) but that’s normal for him and the docs accept that rightly or wrongly. We’ll just have to see what the GP says today will post again with any further update moving forward but really really appreciate your replies Thankyou

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

My question would be what BP meds - I know from personal experience that a side effect of Ramipril is a cough….so other ACE inhibitors may react in a similar way… Although he may not have had a cough with just one, combined with other medication it might be an issue.

alysonkerry- profile image
alysonkerry- in reply to DorsetLady

thank you for your prompt reply he takes losaetsn ezetimbe allopurinol and lansoparole alongside his methotrexate and sulfasalazine so a cocktail of drugs. Like you say before the pmr drugs were mixed in he was fine but maybe the mixture is causing the problem which he has said to docs but they just keep dismissing him unfortunately :(

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to alysonkerry-

Sounds about right, but very annoying. Might be worth looking at the patient info leaflets [PIL] - and then if there is anything in them try again - or talk to pharmacist- they may be more helpful - and could suggest an alternative.

alysonkerry- profile image
alysonkerry- in reply to DorsetLady

Thankyou much appreciated

HalleysComet profile image
HalleysComet in reply to DorsetLady

Ramipril gave me a dreadful hacking cough that went on all night and day. My GP changed me to Losartan and the cough has subsided. I cannot take Amlodipine because it caused gum swelling that my dentist diagnosed as being a side effect of the medication.

After these episodes, I am now much more attuned to side effects of medications, particularly those for BP.

Any cocktail of drugs may result in unwanted side effects. I would always suspect this if one’s general health is not materially worse.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to HalleysComet

I was on Ramipril long before and during GCA/ Pred years and it gave me an annoying cough -but came off all BP meds for a while after knee surgery (2years after finishing Pred) as it went very low.

When I needed to go back on BP meds GP suggested candesartan - no issues to date.

PMRpro profile image
PMRproAmbassador

It took me 3 seconds to get this referance - and it isn't new.

ncbi.nlm.nih.gov/pmc/articl...

and this, which is really cheerful:

bpac.org.nz/bpj/2011/februa....

And since he is on a cocktail of drugs, even if they were right and they don't cause cough (which patently obviously they can) on their own, they cannot know what interactions there are once you are up to over 5 substances.

How on earth ANY doctor can tell me pred alone for PMR is more dangerous than giving MTX and sulphasalazine is beyond me!

No idea what option you have other than finding a chest physician or seeing a sensible rheumy privately.

PMRpro profile image
PMRproAmbassador in reply to PMRpro

PS - was the MTX started first snd sulphasalazine added later? How long after sulphasalazine did the cough start?

KASHMIRI1 profile image
KASHMIRI1

Good morning l am taking pred and methotrexate. I have been warned by my rheumatologist and a respiratory consultant that methotrexate can cause a serious lung problem that manifests as a bad cough and breathing issues. They both said it can start at any time from the first month or much further on. The respiratory consultant said that if it occurs you would know all about it as it is extreme. However he did add that in thirty years of practise he has only seen it a handful of times. It isListed in the leaflet with the drugs as a side effect.

alysonkerry- profile image
alysonkerry- in reply to KASHMIRI1

thank you for your comments and thoughts they’re much appreciated and not that I wish any symptoms on anyone it helps to know there are others with similar issues. Very frustrating when my hubbys rheumy doesn’t even acknowledge that the meds can cause a cough of any sort. Thankfully he saw an understanding GP yesterday has been for another chest x Ray this afternoon has to have a throat swab and she agreed it poss/prob is the meds that are causing the cough & issues. He hasn’t to take his next dose if methotrexate due to low neutrophils & is going for another blood test next tues also GP said to half his dose of sulfasalazine so we will just have to see how things go. Thanks again for thinking of us hope you keep well 😊

KASHMIRI1 profile image
KASHMIRI1 in reply to alysonkerry-

I hope you find help and answers to the problems very soon

Preacherball profile image
Preacherball

I am on tocilzumbab (Actemra) for GCA and on four occasions over the past 18months developed a terrible cough. This past occurrence I ended up getting a chest CT scan and this revealed mild bronchectasis, a widening of the bronchi in the lung which can lead to infection, cough, etc. So he's not alone with the cough issues on these medications and I know how distressing this can be. I have been given an antibiotic prescription I am to begin taking should I start experiencing these symptoms again. It took a full month for the cough to resolve this last time, including having to up my prednisone dose to 40mg. I wish I could offer you more solutions, but just wanted to let you know that there are others out there that are daling with similar issues. Hope he feels better soon!

PMRCanada profile image
PMRCanada

I know of at least one person on MTX that resulted in an ongoing dry cough….so much so, they were advised by their rheumy to stop taking it. As you’ve correctly noted, it is listed as a potential side effect.

If it didn’t emerge until he added in the Sulfa, perhaps ask his physician if he could hold that medication for awhile and note whether the cough subsides. I’m not familiar with Sulfa, but am on MTX and had to hold my weekly injection for a couple weeks while on antibiotics. My PMR symptoms didn’t emerge until week 3 without it.

It’s challenging when side effects from treatment/medication complicate our progress managing our autoimmune condition. There is quality of life to consider and it sounds like he is not getting any rest with the persistent cough day and night. Maybe there are alternative medications he could try.

alysonkerry- profile image
alysonkerry-

thanks for the info and your response. He saw a gp yesterday and he has to try half a dose of sulfasalazine has had a chest x Ray today and is awaiting a throat swab fingers crossed we get sorted soon. Hope you stay well & thanks again 😊

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