Shingles and Methotrexate

Nnp

Hi Everyone,

I've been on Methotrexate for just under a year (8 tablets once a week), plus daily steroids and have just been told I have shingles, which is very painful and unpleasant.

They've given me antibiotics for this as it is super painful and I'm feeling very rough.

Has anyone got any advice or experienced this before, and around how long it took to clear up and feel better? (well as well as us people on MX can feel :-(

thanks

Nnp

Also have people paused their methotrexate or continued whilst they have shingles?

Eeyore

Hello @Nnp

So sorry you've got shingles, I have never experienced it but I know it causes a lot of pain.

My rheumy nurses have always told me I must stop MTX if given antibiotics.

Nnp

thanks Eeyore

noddingtonpete

@Nnp it is always best to consult your GP/Consultant before stopping or starting any medication as they will advise on dose, side-effects and compatibility.

Arthuritis

@Nnp I am so sorry you got shingles, been there, done that including the abject fear of what joint pain awaits if you stop MTX, vs the shingles pain. As others have advised, you need to consult your rheumy first, and your GP to figure out the best approach. My rheumy advised me to stop MTX when you are fighting an infection, as MTX suppresses the immune system and delays recovery. I do not know what antibiotics you have been given as shingles is a virus, and for that you need antiviral meds like acyclovir or valcyclovir. In my case the shingles took a long time to shift, months. In my view shingles appears when your immune suppression is too high for too long. Your rheumy will probably want to reduce your MTX & steroid doses.

However you can help yourself a bit by checking if your intense RA is due to a food reaction, which I have found increasingly the case. I have posted on this on the common culprits and the latest research. Sadly even after you change your diet, the effect can often take days or weeks to become apparent. I fasted (pain dropped like magic after a week) and I slowly added 1 food item back at a time to determine what was non inflammatory or non triggering.

For many people, including myself the top offenders are:

1. Soy protein and soy products, including soya lecithin found in many things like chocolate and biscuits. Only fermented soy was safe, like tofu. Meat from animals fed on cheap soy protein ie most farm animals like pigs & poultry, but not beef as it is a ruminant and ferments it’s food, including soy protein, removing the offending trigger proteins.
2. Casein - dairy products eg cheese, milk and milk chocolate
3. Gluten
4. Nightshade veggies- some varieties have sufficient toxic defence proteins to trigger flares these are bell peppers, potatoes (depends on variety, some worse than others, aubergines etc).

Try cutting out 1 , 2 and preferably 3, and grade your rheumatic pain after cutting.

Unfortunately your rheumy doc can’t advise you on nutrition changes, in their entire 10 years of medical school to becoming consultant, they only had 7 hours on food. Reasons why are not relevant to your immediate situation, but we can learn from each others’ experiences.

I hope this helps you.

Mojo12

started on methotrexate this week feel exhausted sick and getting lots of sweating , I wonder if it’s worth taking it with feeling like this plus have to taper off prelesadone over the next 3 weeks , I was diognoised with moderate RA , just feeling over whelemed about it all

iwannerbeme

I was advised by my rheumatology consultant, not to take MTX if i have an infection. I started taking it again once infection was cleared. Interestingly, I was advised to have the shingrix vaccine before I started MTX. Shingrix is available to those over 50 years in UK and anyone with a weakened immune system in the UK. it does require 2 doses 8 weeks apart, as i recall, i had a gap of 2 weeks after the 1st dose before I started MTX. I took it for a short while and then came off it a week before my 2nd dose and 2 weeks afterwards. This is because shingrix is a "live" vaccine. Apparently you can get shingles more than once and so even after you have it , you can still get the vaccine to prevent it in the future. I also had the pneumococcal vaccine in the other arm along with the first dose of shingix. They are both one off vaccines. The pneumonia one also protects against meningitis and sepsis. Its usually for those over 65 years old but also for those clinically vulnerable, such as those on MTX. My consultant arranged it through my GP surgery. I know not everyone wants a vaccine but they are available for those who do.

Nnp

https://community.versusarthritis.org/discussion/comment/735498#Comment_735498

Hi Mojo12,

When I first started Methotrexate, I felt pretty nauseous and exhausted for the first 24–48 hours. After about 4 to 6 weeks, the side effects eased when i took the meds (or maybe I just got used to them), and it became manageable, now its just some random times i get them. I started taking it on Sat afternoons so any side effects wouldn't interfere with work or social plans, i'd def recommend thinking about what day/time works best in terms of your social plans etc.

Before Methotrexate, I was on a daily medication (sorry I can't remember the name), but the side effects were so so bad I had to stop. That's when my specialist switched me to Methotrexate, which has been much better for me.

If your side effects feel unmanageable, I’d definitely recommend speaking with your RA nurse or specialist. That’s what I did, and it led to a much better treatment plan.

I know it can feel really overwhelming, but being part of this platform helped me a lot at the start and even now when something out of the norm happens. Even just reading others’ experiences made a difference, knowing I wasn't the only one etc. Once you find the right medication, things get easier. RA meds/side effects/lower immunity etc, might change a few things, but it doesn’t have to take over your life, it just working out how to tweak things a little.

Mojo12

thankyou I’m feeling much better today I spoke to my consultant and he told me to increase the folic acid 😁💐