Medication side effects or infection?: Hi there, I was... - NRAS

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Medication side effects or infection?

Spaniellady
Spaniellady

Hi there,

I was diagnosed with RA mid Feb and put on Hydroxychloroquine, Methotrexate and Predisnone. 12 weeks later the swelling had gone almost completely. Amazing! (I was weaned off the predisone a couple of weeks a go.)

However I've had a sore throat, cough and tightness of breath (which has been getting progressively worse over the last eight weeks), In the last couple of weeks I have a shortness of breath when doing any mild exertion, for example walking up stairs, and breathing deeply causes discomfort in my chest. (This isn't normal, as I've always been super fit and very active.) I have been getting excruciating headaches on average 4 days each week over the last month, and have mouth ulcers at the back of my mouth, my tongue is swollen, and now have a bad (chemical) taste in my mouth. I'm also nauseous and am wretching. Nothing that I try to eat makes it better. The fatigue is overwhelming, comes with no warning, and hits me like a wall. In general I feel awful. I'm using all my energy to try to carry on working which means I'm completely exhausted afterwards. As a friend I've become completely unreliable and seem to bail on everything.

The consultant thinks this may be caused by side effects of the drugs and has advised stopping the methotrexate and waiting until the side effects stop then restarting at a lower dose, which makes sense. However, I'm wondering how do I know if it's an infection, and my body can't fight it because my immune system is being suppressed?

I'd love to hear from any of you who have had similar experiences. What happens when you get ill, and how do you cope with it. Many thanks

I'm using all my energy to try to carry on working which isn't entirely successful and means I'm completely exhausted afterwards. The last few weekends and every evening I've spent largely horizontal (and not in a good way!)

41 Replies

Hi spaniellady

You’re having a rough patch for sure! Blood tests are a good indication of infection since certain blood cells increase when fighting infection.

RA is difficult to interpret, for those of us who have it, seems like a guessing game.

If the symptoms reduce meantime then strengthen again when back on MTX etc, it would seem to support what the consultant says.

I find all DMARD drugs make me utterly exhausted. MTX also gave me strange chest sensations, dreadful headache etc.

Hoping you notice an improvement soon. X

Spaniellady
Spaniellady in reply to charisma

Thank Charisma7aj,

My Lymphocytes are low, 0.7 at the last blood test, but my WBC is normal at 6.2.

Hopefully will get better....

Did they check your ESR or CRP? As those a good indicator.

However methotrexate at the doses we take only compromises the immune system a bit, it doesn’t completely suppress it. And the normal WBC confirms that really. So if you don’t have a fever or any other signs of an infection then I would try not to worry.

Hi helixhelix, thanks for the reply. The last record of CRP and ESR were back in April, but were normal. I was on 20mg Methotrexate, but after a break will start on 10mg, so hopefully that will be better.

Methotrexate can be responsible for the cough and breathing issues you mention. I think your consultant is right telling you to stop taking it for now.

Spaniellady
Spaniellady in reply to wishbone

Thanks wishbone

Hidden
Hidden

Hi, Hydroxychloroquine is causing this. I have gotten negative remarks from suggesting this, but I don’t care if I think it might help someone. Check out free on line book Drugs.com and check out and side effects, also interactions with drugs you take, this I like because your doctor will not tell you this unless you ask!

Hidden
Hidden in reply to Hidden

I’m really not surprised you get negative remarks Maxbella you can not diagnose someone by what they are writing here and you shouldn’t. We are not here to diagnose as we are not medically qualified to do that.

Spaniellady
Spaniellady in reply to Hidden

Hi Maxbella1007,

Thanks for your reply, I'll look into this too.

Sorry to contradict Hidden but the more serious of the side effects you're experiencing, the sore throat/cough/shortness of breath... all are reportable side effects of methotrexate. I'd recommend you contact your Rheumy team (if you have a helpline to the nurses this should be fine). MTX can cause pulmonary problems & anything lung related, particularly if they've been around a while, need attention, firstly discussion.

Both hydroxychloroquine & MTX can cause headaches but the other more common side effects, nausea/vomiting plus mouth ulcers (folate deficiency usually, an increase in folic acid plus specific mouth wash ease them) are typically caused by MTX. It could be your Rheumy will suggest an increase in folic acid, a reduction in your MTX dose or more likely because of the lung related problems halting it for a while to see if the symptoms ease, maybe imaging (chest X-ray or other) to determine what's what.

The site suggested to look for side effects by Maxbella, Drugs.com, is a US site, for us here in the UK this is the correct link drugs.com/uk/

I hope once you've reported your problems & had the professional advice you need you start feeling better but without telling them they won't know how your meds are affecting you, they'll just think things are ok. Take care. Oh, just read your Rheumy has suggested halting MTX, maybe he's waiting to see if things clear?

Thank you. Yes the plan is to stop the methotrexate, then reintroduce once I have no symptoms. Been discussing the issues with a pharmacist, who says that I've been exhibiting classic methotrexate toxicity symptoms.

Fingers crossed things return to normal promptly. I wondered if that's the case, MTX toxicity is often resolved by halting it & when restarted it's a reduction in dose, if all is well often an incremental increase works whilst keeping you feeling ok, or as ok as we can expect to be. Also an increase in folic acid if you're not prescribed maximum dose (5mg 6 days). It isn't fully known how MTX works other than it interrupts inflammation process of RD but it can't determine which cells are necessary, there are others but folate in this instance, hence which we need to supplement the folate list with folic acid.

Anyway as I said I hope you feel better soon. Halving your dose is a good start!

Thank you!

Hidden
Hidden

I read the side effects in the book, I was suggesting to look in the book yourself.

Hidden
Hidden in reply to Hidden

I was talking about the first sentence of your comment Maxbella.

Hi Spaniellady. I could not tolerate Methotrexate. I got breathless, chest infections ended up with a partially collapsed lung. To be fair many of those symptoms can be the RA itself I think I believe but my consultant stopped me taking it.

I don’t know about hydroxychloroquine as I was only on it for a short time whilst also taking sulfasalazine. The latter made me very ill with and I ended up in hospital for 10 days!

Has your consultant suggested restarting the Prednisolone whilst you’re off the MTX? That would probably help you cope better with all the symptoms you mention.

Good luck!

Hi Lolabridge, thanks for the reply.

Wow, that sounds really serious. How quickly did the side effects come on?

Yes I've got some more Predinosolone, but the plan is to try and avoid taking it unless I need to. We want to see if the symptoms abate if I stop the methotrexate and if I take the steroids it will mask it.

I'm wondering if I should see my GP to check my breathing because the consultant didn't.

I think that’s a good idea. Your GP can listen to your chest and request an X-ray at least. That’s what I had and because of the result and because I had a chest infection I had antibiotics and then I then got referred to a Respiratory consultant.

I hope whatever is causing your breathlessness can be sorted quickly.

Thank you. Decided to go to A&E because it hurts to breathe and I feel completely lousy. So I suppose I'll find out one way or another if it's side effects or and infection.

Have you had your BP measured? The Pred made my bp soar and caused breathlessness. Though I never got the discomfort when taking a deep breath. There’s always something!

I think that’s the issue with RA, there are such a range of symptoms that it’s hard to know whether they’re caused by RA or something else. I hope you get it all sorted quickly.

Thank you

Hi,

I got pneumonia after trying

MTX—it lowers your immune system making it harder to fight off viruses etc—doc finally said it was MTX and I stopped it. Good luck—we are all different so hope you find one that helps.

Spaniellady
Spaniellady in reply to Wyaatch

Oh my goodness, that sounds serious. Have you managed to find a different treatment that works with your body?

Read up on MTHFR polymorphisms many people with autoimmune disorders can have one of the polymorphisms and Methotrexate can really make them unwell. And if you take folic acid instead of methylfolate you will feel even worse. Remember you have to take methylB12 or hydroxB12 not cyanoB12. The cyanide in cyanoB12 can also cause problems if you have issues with MTHFR enzymes. Everyone on Methotrexate should consider testing for MTHFR polymorphisms before starting. Maybe it is not your problem but consider it. Hope you've been taking a Bcomplex as well. Even if you don't have this issue Methotrexate is a strong medication no matter what dose.

Spaniellady
Spaniellady in reply to Tile

Thank you. Will do.

Wyaatch
Wyaatch in reply to Tile

Hello Tile—thanks for this tip

On MTHFR—I do have this and didn’t connect anything at first when I tried MTX and generic folic acid—except when I was wondering why I was so catatonic for 3-4 months, I finally asked the doc very late in the game if I could take the methyl folate—he said yes. I didn’t take any B’s as he didn’t prescribe them. I guess it was too late as I got pneumonia and he took me off the MTX. I missed about 6 months of my life—-would you know if this issue would apply to the biological and lefludamide too? I haven’t. Entirely further as I got so weak and tired. The ER discovered the pneumonia—not the RA doc or the primary I saw—I begged her to be sure as I didn’t want to end up in the ER at 2 AM—I did. Moving in. There must be a site I can google? Thanks so much.

Hi, I've only been on meths for a year but recently I've had a cough and shortness of breath. My GP gave me antibiotics and to have an xray and maybe a scan if my chest gets no better. Will let you know the results.

Hope you get better soon.

I've been to A&E today and have been given antibiotics for a chest infection. Hopefully that'll fix me.

Good luck. I hope the antibiotics clear it. So, does the Rheumatology consultant not deal with infection? I was really surprised that mine didn't listen to my chest when I said I was having difficulty breathing. Do I need to go to the GP if I feel unwell even if I suspect it's something to do with the treatment?

Yes, you should do whatever you need to do in order to feel well. You noticed that the rheumy didn't do much for your chest/breathing issues. Get a referral if you need to, or just go see your GP or whomever you feel will help you. Our goal is to feel well and live life in the best way possible. Use all the resources you have to make that happen.

I got the craziest rash last year and saw over 10 doctors. After 2 biopsies, a plethora of meds, and 3 months later, no one figured it out and it just faded away on it's own. My guess? It was probably stress.

Now that I'm reading this, it may not be the best example, but my point is I tried my best to figured out what was happening and saw a variety of doctors: GP, dermatologists (plural), rheumatologist, allergists, etc. Please be proactive, don't second guess yourself. Try to get to the bottom of things and strive to feel well again, if that means seeing another doctor, do it. Wishing you the absolute best!! Please let us know how you are getting along later, we're here for you!! Although we may have differing opinions and differing experiences.... Regardless, we are here for you!!! ♥️

Thank you. Got back from A&E. I've got an infection, CRP is up so have been given antibiotics. Hopefully they will kick in soon and I'll stop feeling so wretched.

Oh! Yes, hopefully relief is coming very soon!

Thank you!

Puzzling for me is trying to figure out which medication is doing what, especially when you are taking more than one. Also, the variable of what activity I did, for example, yesterday that could have caused my problem. Even, who had a virus that was passed on to me as I was in their company.

Methotrexate caused the mouth sores which I dealt with using salt water rinses and now that I have been on MTX for 7 months, this side effect went away. The hair loss slowed down too (or else, there isn't much left to lose 😁).

I had a bit of coughing in the beginning but that has sort of gone away. Perhaps I will get lung trouble as I am to increase the MTX from 15 mgs to 25 mgs (in a gradual way) but perhaps not.

As you can tell, side effects are different for everyone. I do recommend you getting medical help as it sounds like you are suffering overmuch. The stress you are having wondering, can cause more trouble for you with RA.

Weirdly enough, I have never had fatigue or exhaustion with this. Likely because I am still on plenty of prednisone. Maybe that will kick in should I ever get tapered off of it.

That's interesting so maybe it's worth persevering with it if the side effects get less over time. It all started to feel awful after I was weaned off the steroids.

I couldn't take Methotrexate, as I had swelling of the liver, and my tummy was hurting. Had appt at the hospital on Thursday, I was asked to take a drug Leflunomide and also asked to take Prednisolone . The nuckleson both my hands were swollen. I has made some difference, not 100 %, still being positive. But hopefully it will work.

Spaniellady
Spaniellady in reply to embroy

Good luck!

Had similar symptoms some time ago consultant suggested injecting methotrexate worked well. Took higher dose of prednisolone whilst I was off MTX for 4 months. I also took high count probiotic capsule supplements, and combined minerals & vitamins and stuck to a very healthy diet. Good outcome

Spaniellady
Spaniellady in reply to su-mo

That's interesting. So you had similar side effects and stopped the methotrexate for 4 months. When you reintroduced it, were you okay? I've got Predisolone in case the swelling comes back, but the plan is to try and avoid taking it so it doesn't mask the side effects when I reintroduce the methotrexate.

seems o.k. at the moment still taking sulphasalazine and small dose of prednisolone

It may be a high blood pressure tablet, I was talking was called Amodophine, which gave me swelling on all my body, went to GP, and it was the blood pressure tablet that was causing it. Maybe speak to your GP, it might help.

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