The whole point of taking methotrexate is to stop your immune system attacking itself, thus not having any flare ups (joint pains) the disease taking hold and in a nut shell your life being shortened. However what do you do when you get a nasty virus that gives you flu like symptoms and a high temperature?
Well, I didn’t know that answer either. No one had told me about these issues when I started on the drug and I was really unsure who to ask.
When I first got my symptoms back in the beginning, I had absolutely no idea it was going to be RA. So we used our private health insurance to find out what was going on. When I finally got the diganosis, I was coming to the end of my Bupa funds limit. This was thanks to the numerous blood tests that where about £250 a time and when the insurance money runs dry, it was leaving it down to me to pay for any other blood tests I needed, which would be every few weeks. So it was definitely time to get refered back to the NHS. Unfortunately for me it was with the same consultant. Oh great!
However, upon my first visit to the NHS to see Dr X, I never got any direction as to who I spoke to if I needed advice. I never got told when I should have my bloods taken as I needed to keep a close eye on my liver function. I never even got a prescription to keep the medication going. That is probably because the time spent in the appointment was all about anti cpp tests and trying to understand what and why this was all happening.
So when I got home, I was the one to set up my blood tests at the GPs and an appointment with my Doctor, so I could run everything through her.
In the meantime and while I waited to see the GP, I came down with this nasty virus. It completely wiped me out. I have honestly never felt so rotten in my life. It wasn’t flu, as I have had that bad boy before, but it sure did feel on par with it. As I lay in my sick bed, barely able to move, my worried husband called the rheumatology department at the hospital to see who we should be speaking to (as we were still unsure ) and what other medication I could possibly take to ease the symptoms. The hospital put him through to Dr X ‘s secretary to which I grunted from my sick pit to ‘hang up, you’ll get nowhere speaking to her or him’. Doing as he was told, he ended the call and decided to try the GPs for their advice instead. My usual GP called me back and said that I should only take paracetamol as I was not allowed to take nurophen, an anti inflammatory, with methotrexate (mtx). So all weekend I popped paracetamols in desperation, but it didn’t move me far from my horizontal state in my darkened bedroom.
Monday came round, which was the day to take the mxt and I felt so rotten that the thought of taking the medication filled me with dread. My poor battered body was in no fit state to be compromised anymore, especially with this virus taking hold and coughing 24/7. Also, the thought of popping those six little pills that made me feel so sick was not my idea of helping me get better. So, I decided to attempt to get connected to a rheumatology nurse and see if I could get some advice as what was best to do. I managed to get passed the receptionist this time without being transferred through to Dr X’s secretary. This was a breakthrough. But I was put through to their answerphone message which stated that they would get back within 48 hours. I left my message, but didn’t hold out much hope that I would get my answer that day. I was at an all time low at this point. I felt so alone and scared. I was taking this medication that was suppressing my immune system and felt so ill from this virus. I just wanted someone to help me. Tell me it was all going to be okay. I cried. A lot.
It was about 5pm when the phone rang, I certainly wasn’t expecting it to be the hospital. The RA nurse was so lovely and understanding. She completely took on board how I was feeling and said that I was to miss the mxt for the coming week and if I still felt rotten the week after, not to take it then either.
It was music to my ears, I felt so relieved, I could have jumped down the phone and kissed her. This would be my first week off the meds since before Christmas. I was nervous about it all but also incredibly excited. I would hopefully start to heal from the virus and I would see if my body would be okay without the drugs.
It had only been two days off the meds and I was feeling utterly amazing. I didn’t feel so spaced out or unmotivated. I had more energy and even better for the first time in months, I didn’t feel sick!!!!! Even though I still ached from head to toe thanks to the lurgy, was coughing my lungs up and generally wanted to be lying down in bed, I honestly could feel the difference in my body and mind not being on mxt. So, I continued maintaining positivity that I would be okay and not ever have to go back on the bloody stuff.
That Wednesday, it was time for yet another needle in my arm. Even though I hadn’t taken the mxt that week, I still needed to check my liver and kidneys. I had booked to see my favourite phlebotomist Ms C, as she is so gently putting the needle in, you hardly ever feel it. She is the perfect type of Phlebotomist for me, as I have never been a fan of blood tests since the time I got showered with my own blood spurting from my arm when I gave blood at the tender age of 18. It was honestly like a scene from a horror movie. I was wearing a white blouse that day and once the whole highly disturbing saga was over, I left the blood donor hall looking like I was the one who had just commited a murder. So, as you can imagine, after that little episode, I have always been highly weary of having any type of blood tests and with the amount of blood tests required with RA and the medication they put you on, I had to toughen up. But having had wonderful Ms C made me forget the past until I got booked in with someone else when she was off work. It started off under false pretenses as I was greeted by a really lovely jolly lady. I thought, this is good, she seems really lovely. Miss Jolly Phlebotomist sat me down by her desk and got me to stick my arm out. “ oooh you have lovely veins” she said, which is a comment my veins and I are use to. She got the needle and bottles ready and was chatting away to me about knitting. I turned my head the other way, as I have done since blood donorgate all those years ago and that’s when the horror happened. This is no exaggeration but she pretty much stabbed me in the arm. If the needle hadn’t been hanging out of my arm, I honestly would have hit the roof . Then to make things even worse, I could hear this bubbling gurgling sound.. oh my actual Christ it was the blood filling up in the vile. Completely unaware of the unbelievable trauma she had caused me in the space of a few seconds, she happily jibber jabbered away about god knows what, while I had started to sing at the top of my voice to muffle the sound of the blood leaving my incredibly sore arm. I vowed to my arm that I would never put us through that again and so I upon leaving I went to the reception and promptly made sure I was booked in with the wonderful Ms C for the rest of my life.
Back to the Wednesday with Ms C and I was discussing with her what blood tests I should be having done whilst on MXT as I didn’t understand how they would marker it. She said that they do a CRP test now to monitor the inflammation levels. So when I got home I checked to see what my inflammation markers had come back with on my private blood test results. The CRP test is usually between 1-10 to be normal. Mine came in at 8 in September and 7 in October! Completely normal. My RF factor wasn’t even on my blood tests results and so the only thing that was high was my anti ccp count. I was so confused as to how this all worked, how would they be able to tell if the disease was under control? I started to feel frantic again, this was my health and my future and to have peace of mind during all this, is to have complete understanding about it all.
Fortunately, I had my appointment with my GP the very next day. I ran all my concerns past her and showed her my private blood results. She agreed. She also said that she thought my diagnosis was a bit quick and had sent a letter back to the consultant stating this. She was wonderful and could see the concern and stress I was under and agreed to do another anti ccp test. She made sure I was aware that it could still come back the same, but it would be good to just make sure, I knew that. I also asked to be referred to a new consultant once we knew the test results. Before I left she also said that after my explant operation, we must make sure we do another anti ccp test. This was wonderful to hear, she wasn’t saying that she agreed with BII. But she wasn’t ruling it out either. I can’t tell you how happy I was leaving the doctors that day. Someone had finally listened to me and I felt I was going to get the answers I had been longing for all these months.
I had a really busy week. Typical. Just when I needed to relax and do nothing to keep my body happy and stress free. Friday night we were out till late watching our eldest perform in her school cabaret production. She was absolutely brilliant and I was so ridiculously proud of her. Then, Saturday night, I had my friend Arun’s leaving do. He works at a hospital as a chest specialist, (this will make him laugh as this is not the correct title for his job but I can’t remember!) and we had been talking about my situation when he asked if I would like to speak to his friend. He was one of the top consultants at the hospital he worked at. It was a completely different hospital to the one I was attending. I jumped at the idea. This is exactly what I had been wanting. Just to speak to another consultant and get his opinion on my situation. The universe had heard me. I was so grateful to Arun and of course the universe.
The virus was still not shifting and the following Monday I was feeling rough again, the aches and general feeling shitty was back with a vengeance. I also felt bruised from the inside out from the constant coughing. I continued to just take paracetamol and only got on with a few essential house chores, like clean clothes for the kids for school, as my hubs was working away. I started to feel niggles in my body and I was worried it was my joints flaring up. It is at these moments I have real low points. I get panicked that I am naive about the situation and that I have been barking up the wrong tree. That I really do have RA. It was another unhappy time for me, in fact I cried a lot. I was so confused at times, if I had RA then I should take the medication to help me so the disease didn’t get a grip, but the medication made me feel so rotten. My left hand index finger was ever so slightly swollen on the top joint. I mean you really needed to look to see it but I could feel it, I knew it was there. But then the pain would go after a few hours and then it would migrate to somewhere else and again it really was ever so slight. But the fact I knew it was there was enough to send me into a deadly panic. I decided to message the lovely Arun and see if he would send his rheumatologist friend a message. He got back to me within the hour. Dr M Was more than happy to speak to me and had given me his mobile number to call between 1-2pm. This was just amazing. At 1pm I spoke to him. He was such a kind and understanding man. Not dismissive in the slightest. So here are the things I found out.
YOU CAN HAVE A FALSE POSITIVE TEST
Your Anti CCP levels never really change
Its good to get an early diagnosis to get the disease under control
You would be on Methotrexate for 2-3 years and then you would be in remission once off the drugs and have no flare ups.
I shouldn’t take the MXT two weeks before the operation and two weeks after to let my body heal.
Being off Mxt for a few weeks wont harm me as I don’t have severe RA
Stay off Mxt until virus has gone away.
The joint niggles would far more likely be the virus than RA.. Mxt stays in your system for a month after stopping.
I won’t lie, I came off the phone so grateful for speaking to him but I cried my eyes out yet again. I started to believe that it actually couldn’t be anything else other than RA and that I would just have to start taking the drug again once I was better.
The following day, I had the re test for my Anti CCP. I wasn’t feeling too good still but I was so determined to get it done. I would get the results by Friday and know for sure what the deal was. It was going to be a long three day wait.
I tried everything to remain positive after the blood test. I would say a mantra to the universe that I was happy and grateful for my health, happiness, an Anti CCP count of 5 and a negative RF factor. Even though the results played heavy on my mind, I have to admit I was the happiest I have been in months. I had energy and I felt great, even though I was hacking my lungs up with this virus. I even had the motivation to make chocolate sugar free brownies with my youngest after school, which I hadn’t had the energy to do for months. I felt like my old self.
The day before I was due to get the results, I thought I would just call up the doctors to see if they were in. You had to wait until 14.30 to do this, so by 13.00 I was clock watching. I had been telling people over the last few days how I was going to be opening champas on friday to celebrate my new found freedom of health, in an attempt to keep the positivity flowing. Friends were also commenting on how healthy I was looking and I knew that was because I hadn’t taken the methotrexate for a few weeks and my body was sighing with relief that it didn’t have this army of suppressants running wild in its system. It felt good and I felt free. 14.30 arrived. I picked up the phone and called the doctors. I was on hold for the results line. It was now 14.40 and I was still on hold, but I wasn’t going to hang up, I needed to know. The 10 long slow minutes I was on hold, I kept muttering that I was so happy and grateful for a negative result and an anti ccp level of 5 over and over until it started to ring down the other end of the phone and the receptionist finally answered…
First I had to find out if the blood results were even in yet. They were and she started to read them out to me..
Rheumatoid Factor. Negative.
This was the perfect start….
Anti CCP Count. Raised.
“to what?” I asked.
She paused and said “hold on I am not sure how to tell you that.”
” It’s a number” I said
“Oh, erm…. two hundred and fourty four, is that what you are looking for?” she said bubbly.
I could barely reply my thanks back. My whole entire bubble of hope had popped. I was devastated. I cried big loud sobbing, could hardly breath, tears. I sobbed down the phone to my Husband and then to my mum. I then cried some more and 5 minutes later I dried my eyes, put some sunglasses on and did the school run with my bright red cry nose and cry rash face. I felt pretty crap for the rest of the day. My whole plan of feeling great and celebrating a misdiagnosis went right out of the window. I mean I have been misdiagnosed on may occasions for many years and the one time I bloody well want to be misdiagnosed is now.. do you hear me universe , its NOW!
So I had three more days of clear head and energy before the dreaded methotrexate would be consumed again, take over my body and I would turn into a retching zombie. So I decided to enjoy it and stop wallowing in self pitty.
You see, the fat lady hadn’t quite sung yet. I still had the chance that this was all down to my killer tits. The toxic bags could well and truly be the root of all this evil and autoimmune nonsense.
Three Weeks until I explant.
Click here to read what happened next … xx