Vasculitis Update: Methotrexate 

I haven’t posted anything about my vasculitis diagnosis for a while, and I’ve recently started taking methotrexate, so I thought it would be a good time to give an update. 
My vasculitis is classed as mild, meaning there is no major organ involvement, and is mostly limited to my sinuses.  It has been roughly 4 years since I first started getting symptoms, and for the last year I have been treated with prednisone (steroids) and co-trimoxazole (septrin). 

The steroids and septrin haven’t really helped, I have spent the last year feeling constantly exhausted, aching and have also gained around 4 stone.  The steroids helped in that they enabled me to get up off of the settee, and be more active, but beyond that I haven’t felt much better in the last year. This coupled with the weight gain has made me quite unhappy.  

Please see the inserted leaflet picture – it really winds me up that they only have these for Rheumatoid Arthritis and not Vasculitis…

Methotrexate is a standard treatment for vasculitis, but can be quite scary. My consultant advised me of the pros and cons of taking this drug, and then gave me a leaflet explaining everything. I was then given some time to think about how I wanted to proceed.  

I went away, read the information and of course did some googling. 

Methotrexate is used to treat vasculitis and also some forms of cancer (but in much higher doses) and works by dampening the immune system. 

Potential side effects of methotrexate include:

  • Feeling sick
  • Mouth Ulcers 
  • Thinning hair
  • Lung inflammation, coughing and Fever
  • Liver problems, potentially leading to scarring and cirrhosis 
  • Anemia and fatigue 
  • Low platelets – increased risk of bleeding
  • Low white blood cells – increased risk of infection
  • A slightly increased risk of developing lymphoma

When taking methotrexate you can’t try for a baby, because the drug can affect the foetus and also lead to miscarriage. I was told we can’t try for a baby until I have been off the medication for 6 months.  

When I decided to go ahead with the treatment I had a counseling session with the specialist nurse.  We went through the side effects, treatment plan, what do do if I have any problems and arrangements to monitor my well being. I have to go for blood tests every 2 weeks, and have my first check up with the Rheumatology clinic in 6 weeks. 

I have to admit, I am really worried about the potential hair thinning/ loss.  

I am to take the methotrexate once a week, 6 x 2.5mg tablets.  The day before I take 10mg folic acid, to help decrease the likelihood of side effects.  

I took my first dose on Thursday night; you take it just before going to bed, the idea being that you will sleep through the nausea. I took the medication, and went to bed. After taking the tablets I felt a strange burny  sensation in my throat, but I’m not sure if that was just because of knowing I had taken some strong medication.  

I woke up when my alarm went off at 4:30am Friday morning (early train) and tried to get out of bed. I found it difficult to stand I was so dizzy. I was desperate to go to the loo so I tried to make my way down the hall, but couldn’t really walk. Craig had to help me get to the bathroom and stay with me so I didn’t fall over.  I felt incredibly sick.  I thought I was going to pass out. I just felt awful. Apparently I looked pale and green. 

Needless to say I didn’t get that early train.  It took me about 4 hours to get back to sleep.  It felt like I was really drunk; the room was spinning, I found it difficult to settle, my thoughts were going round in circles and I felt like I was going to get sick everywhere. Craig got up to get me water at some point and then I woke up at 1pm. 

When I awoke I still felt weak, disorientated and sick.  I was also extremely weepy. I talked to my manager on the phone and started crying for no reason. I rang my GP and they said that these are pretty normal side effects when taking methotrexate. 

It’s Saturday and I’m still not feeling normal. I’m tired, weepy and have completely lost my appetite. Craig bought us a takeaway last night and I managed less than half of it, despite it being my only meal of the day. So far today I’ve had a babybel cheese and a milky coffee. 

This morning 4 coldsores had erupted on my upper lip, no warning just boom, coldsores. I also seem to have an infection in the top piercing of my scaffold bar. This healed almost 10 months ago but I changed the bar on Thursday and it is now throbbing, red and seeping pus. Nice. 

I am still on the steroids for the time being, lowered to 2.5mg a day, until the methotrexate starts to work. It can take up to 12 weeks to work, so I will then come off the steroids. Until then I can expect to feel like utter crap. So why take it? I have to hope that this will help me feel better. I can’t explain what it feels like to live with vasculitis, even a mild form like mine has me feeling like an 80 year old woman most of the time. I will post an update soon on my experiences with the drug, but please let me know your experiences and concerns in the comments below.


Stephani Xxx 

6 thoughts on “Vasculitis Update: Methotrexate 

  1. Hi Stephani, I too suffer with Vasculitis. 7yrs since I was discharged from Hope hospital MANCHESTER. What a life changing experience this has been for me and my family.
    I came across your blogs through a Vasculitis site and just found it all very interesting. We all suffer quite differently I’ve found but are left with very similar affects on our bodies and mind.
    I suffered 4 Strokes whilst in hospital in 2011 and have had to ‘re teach myself everything. At the age of 42 that hasn’t been easy I can tell you.
    It’s hard, and I totally get you about the fatigue.
    I am a Mother of 3 boys youngest is 22mths and he never bloody sleeps lol. I on the other hand could sleep for a week.
    If you ever need to chat or would like somebody else’s opinion on Vasculitis just email/Facebook me if you want as us Vasccies as a couple of us call ourselves are extremely Rare.
    You are doing AMAZING, just to be able to write your blog is an achievement in itself.
    Take care xxx

    Liked by 1 person

      1. Hi hun, yes I am a member of the forums on Facebook. Cannot remember where it was I saw your blog but recognised your pic ( photographic memory I guess just remembered I had seen you before). Am as well as I could be considering, med free now apart from my happy pills as I like to call them. Hope you are well xx


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