I'm wondering if you have experienced infections because of Methotrexate?
I have recurrent herpes as my immune system functions sub-optimally due to AI disease (Sjogren's Syndrome), which leads to recurrent herpes infections. I'm looking at starting Methotrexate and wondering whether it will worsen my herpes, or maybe improve it by helping my immune system function better?!
I appreciate it very much if you can share your experiences or opnions.
Rosegardens
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rosegardens
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I was told we've got an overactive immune system and the drugs we take bring it down to a normal level. This doesn't make us prone to catching things, but if we do our immune system won't kick in like others, which in turn takes us longer to recover.
I've had RA since 2008, been on mtx since 2010 and anti tnf enbrel since late 2012. In all that time I've had one uti infection, food poisoning (which I had to have antibiotics for), a cough virus that was going around and covid (caught it off my husband who was a lot worse with it than me). Husbands had a few bad coughs and colds since my diagnosis and I never caught anything from him.
I’ve been on mtx 25+ years and had no increase in infections. As previously said, mtx brings your immune system back to that it should be ( your immune system isn’t behaving sub optimally, more the opposite) you’re closely monitored with bloods so any problems it’s causing can be picked up. (Sorry I don’t know about Sjogrens specifically but I assume it’ll do the same)
Thanks very much for sharing your experience. It is very positive and has made me feel really good, I hope it will be the case for me too. I actually remember reading something like that or one of my rheumatologists commenting that the immune system functions better when AI disease is treated.
Hi! I am on methotrexate and have the recurrent Herpes infections like yourself. When it occurs I take aciclovir and stop the methotrexate until it clears up.
Hi , I have RA and began Amgevita injections ( had4 now). I had shingles about 2 years ago and a herpes infection in my eye about a year ago. I had to take aciclovir then. I have developed a chesty cough and tight throat plus my eye feels sore again . Do you think I could have herpes again? I’ve missed my last injection on advice of GP and Rheumy nurse and had antibiotics . Cough still no better. Thankyou for any advice .
Sorry for my late reply, I have had some medical stuff going on. I think it would be worth while checking with your GP or rheumy as I was told to stop methotrexate straight away if I had a cough. There are also some pretty nasty cold/ flu bugs doing the rounds at the moment. When I have had the herpes infection I didnt have any of the symptoms you describe and I didnt have it in my eyes.
Hi,yes I have had continuous herpes and shingles infections for quite a few years, had to come of methotrexate for a while and infections died down some, was just taking sulfasalazine, managed to get the shingles jab x2 and take Acyclovir more or less all the time, back on methotrexate now but at low dose of 10mg with sulfasalazine, things are improving so hope this is helpful for you, all the best Jeremy
Thanks very much for your reply, from what you said, I think I should try a lower dose of Methotrexate and go on anti-viral- daily if i can tolerate it..
Do you think 7.5 to 10 mg Methtrx can calm the overactive immune system a little bit?
MY MOST ABJECT APLOLGIES...Rosegardens. I have now deleted my post re herpes and citirizine...it is ACICLOVIR that I have prescribed, twice a day. I take it all the time, because as soon as I stop, the blisters come back (my mid to upper back is the target zone). It does the trick. It was only when I was pondering the problem that I realised my mistake. I'm very sorry for the misinfomation. Hope you can try Aciclovir and will see the benefit from using it. 🙃👩⚖️
Thanks so much, no worries, very nice of you to share all this information, take care. How long have you been using Aciclovir?
I have like you very frequent OBs, so demoralizing, can't enjoy chocolate, nuts, rice which I like the most. As soon as I eat these things they pop up and cause lots of swelling, lymph notes increase in size in groin, I think in nerat future I will consider taking it every day, but I tried multiple times Famir and Valtrex, I cannot tolerate either longer than 1 week, my body, face start swelling, can't urinate properly, feel fatigued and shortness of breath, then I have to stop it. The only one left that I did not try yet is Aciclovir. You are lucky that you can tolerate it.
Hi RG. I have been taking it for about six years now. I was getting down from repeated blisters on upper and mid back, lasting for a couple of months. It was wearing me out and interrupting my sleep etc. My GP at first prescribed as and when needed, but once a few blisters had formed it took ages before they cleared. He then put me on a for a longer period and because it worked I have stayed on it since. I didn't have problems prior to using Methotrexate, even when on other RA drugs.
I have checked up re the liver and can't see anything that is adverse regarding it, but have copied the info below.
The following side effects of acyclovir are rare. Trusted Source:
abdominal pain
dizziness and fatigue
hair loss
allergic reactions
anemia
anorexia
mood changes, such as aggression or agitation
confusion
angioedema, which is rapid swelling
bradycardia, which is a slowed heart rate
nervous system problems
serious blood clotting
coma
I hope that you will find something to help even if this medication isn't for you. Take care, God bless, K.
I'm not sure about liver enzymes RG. I have been on it now for six years...after my GP found that I responded well to it. I was at the point of feeling quite down in spirits with it recurring as soon as I stopped taking it. It's not a nice thing to have. I don't get any side effects.
I was on methotrexate for many years and eventually had to come off it due to contracting neutropenia. I also had chicken pox in my twenties which I had anti-viral tablets for and stopped methotrexate until it disappeared. I also had frequent UTI infections.
However, methotrexate is a great drug for many people, as others have mentioned and works effectively for their RA without any issues.
Often RA drugs work initially but then start to have less efficacy. Even if it works for a few years it's worth a shot and could be helpful. You will be closely monitored with blood tests, so any issues will be picked up quickly. Good luck with it x
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