So since my last blog post, I had been starting to really struggle on the days that I took my MTX injection, even to the point that I was being sick several times throughout the day. My hair was tons thinner and every Friday I would go home from work, have tea and get into bed to sleep off the side effects.
For a while I thought that this is the price that I have to pay in order to have my normal body back and that I should really count myself lucky because it was MUCH better than being on crutches for months. But it got to the point where I was so ill and fed up of wasting my Fridays that I decided to get in touch with the rheumatologist.
This was at the start of May, when I was actually long overdue a 6 month review that should have taken place in March. So I phoned up to find out how much longer I would have to wait for an appointment, to be told that there was a huge backlog of at least 4 months. This would mean that I wouldn't get an appointment until July at the earliest and there was no way I could wait that long.
One of the most important things I have learnt since being diagnosed with arthritis is that you have to fight to get an appointment, if you sit and wait, you could be waiting for months (which has happened to me before). So I stressed how much I need to see a rheumatologist ASAP and managed to get appointment for a few days later as someone else has cancelled. Proof that you can't take no for an answer!
After seeing the rheumatologist, I have been given anti nausea medication for the day of injection and a lower dose of injection. I have also been given folic acid to take every day rather than once a week, which will hopefully help my hair grow thicker again.
I've had three weeks of this new medication and so far so good, I still feel a bit peaky on a Friday, but no where near as bad. Also, Im sure my hair is getting thicker, so I'm feeling much less self conscious.
Hopefully this is a sign that things are on the up!
Showing posts with label prescription. Show all posts
Showing posts with label prescription. Show all posts
Sunday, 29 June 2014
Friday, 1 February 2013
Steroid Free
Hi everyone
So since my last post, I have decided to come off my steroids completely. They weren't doing me much good painwise and they were giving me far too many problems. I started to get a painful and bright red rash around my mouth and on my chin, I put on nearly a stone and they gave me terrible heart burn. I have been taking steroids since July, but since I was on 2.5mg before hand, I decided that I might as well just stop altogether.
My main concern with coming off steroids was that my foot would balloon again, like it did last time I stopped taking them. Luckily this hasnt happened! The arthiritis has got really bad in my shoulder and collar bone, I can't raise my left arm above my head without being in a lot of pain. My index finger and middle knuckle is also causing me a lot of greif at the moment too and to be honest, my pain is back pretty much everywhere. I am also beginning to get really tired again. This was all already happening before I came off the steroids though because my tnedication wasn't working, so I am not going back on them! At least now my consultant and RA nurse can see my real pain rather than it being masked with steroids.
As for increasing my dose of Methotrexate, there has been no positive things to say yet, but I am struggling to eat because I feel so sick from it. I took my latest dose on Wednesday and have felt constantly sick since. Im hoping that the Folic Acid I need to take tomorrow will do it's job and get rid of the nausea.
Hopefully, my next post will be something positive to report on!
So since my last post, I have decided to come off my steroids completely. They weren't doing me much good painwise and they were giving me far too many problems. I started to get a painful and bright red rash around my mouth and on my chin, I put on nearly a stone and they gave me terrible heart burn. I have been taking steroids since July, but since I was on 2.5mg before hand, I decided that I might as well just stop altogether.
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| Red and swollen index finger |
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| Swollen index finger |
Hopefully, my next post will be something positive to report on!
Wednesday, 7 November 2012
MTX week 5, Bloods and more confusion!
Hi Everyone
So after my confusion yesterday about my prescription for MTX, I emailed my GP and requested more MTX and folic acid urgently as I needed to take the MTX this morning. I received a reply saying that it would be ready after 5.30pm, so it was going to be a rush to get the prescription and get to a pharmacy before they shut at 6, but at least I would have my meds on time.
I managed to get to the pharmacy at 5:45, but when I got there the pharmacist told me that my GP had only prescribed 3 pills a week for the next two weeks instead of a 6 a week for a month. They rang my GP (not my usual GP who is on holiday) and he said that he had on my notes that I was to start on 3 a week for two weeks and then progress to 6 two weeks later, which was right, a month ago! My GP was on his way out to a house visit so he said to give me what he has prescribed for now and ring him again in the morning. So basically there was a mis-communication between the hospital and my GP surgery about what stage I was at.
This morning I decided to go with my gut and take all 6 pills, because I knew I was right and I wouldn't be able to speak to my GP before I needed to take them. I rang my GP and asked for him to ring me back, and then headed out to the path lab for my second blood test.
My second visit was the complete polar opposite to my first in every way. Firstly I was the only one there until about 8.55am, secondly I only had to wait for about 15 minutes once I was in the waiting room and thirdly it hurt way more than the first time! I dont usually find blood tests painful, but when I looked at my arm afterwards, I have a large scratch up my arm where the nurse had inserted the needle. Even so I was pretty happy to be in and out much quicker this week.
When I arrived and collected my queue card, I was "patient 8" this week, despite being the only one there! Apparently people go the night before and get a card to save queueing in the morning. Only patient 1 & 2 turned up while I was there though, so I got seen to third. Much better than 14th last time!
My GP then rang me back, and after I explained the situation he said he would do a new prescription for a months worth of MTX, with 6 pills a week. He was actually very nice and said that he didn't want to make a rash decision late at night with such strong drugs, which I completely understand. So it is all sorted now hopefully!
In terms of the MTX side effects, once again my head feels a bit fuzzy and I feel exhausted, but nothing too horrible.
After a stressful few days I'm looking forward to a hot bath and early night tonight!
So after my confusion yesterday about my prescription for MTX, I emailed my GP and requested more MTX and folic acid urgently as I needed to take the MTX this morning. I received a reply saying that it would be ready after 5.30pm, so it was going to be a rush to get the prescription and get to a pharmacy before they shut at 6, but at least I would have my meds on time.
I managed to get to the pharmacy at 5:45, but when I got there the pharmacist told me that my GP had only prescribed 3 pills a week for the next two weeks instead of a 6 a week for a month. They rang my GP (not my usual GP who is on holiday) and he said that he had on my notes that I was to start on 3 a week for two weeks and then progress to 6 two weeks later, which was right, a month ago! My GP was on his way out to a house visit so he said to give me what he has prescribed for now and ring him again in the morning. So basically there was a mis-communication between the hospital and my GP surgery about what stage I was at.
This morning I decided to go with my gut and take all 6 pills, because I knew I was right and I wouldn't be able to speak to my GP before I needed to take them. I rang my GP and asked for him to ring me back, and then headed out to the path lab for my second blood test.
My second visit was the complete polar opposite to my first in every way. Firstly I was the only one there until about 8.55am, secondly I only had to wait for about 15 minutes once I was in the waiting room and thirdly it hurt way more than the first time! I dont usually find blood tests painful, but when I looked at my arm afterwards, I have a large scratch up my arm where the nurse had inserted the needle. Even so I was pretty happy to be in and out much quicker this week.
When I arrived and collected my queue card, I was "patient 8" this week, despite being the only one there! Apparently people go the night before and get a card to save queueing in the morning. Only patient 1 & 2 turned up while I was there though, so I got seen to third. Much better than 14th last time!
My GP then rang me back, and after I explained the situation he said he would do a new prescription for a months worth of MTX, with 6 pills a week. He was actually very nice and said that he didn't want to make a rash decision late at night with such strong drugs, which I completely understand. So it is all sorted now hopefully!
In terms of the MTX side effects, once again my head feels a bit fuzzy and I feel exhausted, but nothing too horrible.
After a stressful few days I'm looking forward to a hot bath and early night tonight!
Tuesday, 6 November 2012
Drop in Clinic
Hi everyone
So today was my first visit to the reheumatology drop in clinic. It was actually my second visit to the rheumatology nurse, but the first was a sort of introduction to what is going to happen over the next few months.
I was slightly nervous about this visit today, not because I was worried about what was going to happen, but because I was unsure about what time I was meant to be there! When I had my first visit to the nurse, it was a scheduled appointment, but she asked me to come to her drop in clinic in a months time, any time between 8:30 and 9:45 and that it was just a first come first serve basis. However on Friday I received a text from "NHS no reply" saying "this is your appointment reminder for Tuesday 6 November at 09:10".
Initially I thought that this would be an appointment with the rheumatologist doctor, but when I rang to find out, they said that this was my appointment with the nurse. Very confusing!
Anyway I went today at 8:50, so that I was there in enough time for the appointment, but my nurse was there waiting for me. When I asked her about the appointment time, she said that the text was complete rubbish and not to take any notice of the text, it is definitely a drop in clinic.
In my appointment, the nurse checked my joints to see which ones hurt, made a note of my recent blood test results and had a chat with me about how I am feeling. It turns out that my white blood cell count had gone up, meaning that I might have picked up an infection already, but she said it wasn't too high so I wasn't to worry. The good news is my inflamation count has started to decrease, not enough to notice any changes yet, but it is going in the right direction!
Last time I saw the nurse, she gave me a prescription for my first months worth of MTX and Folic acid, so I assumed that I would be getting my second months worth today. WRONG! Apparantly I am meant to get the prescription from my GP from now on, although I dont remember being told that! I am due to take my next dose tomorrow, so I had to email my GP and ask for the prescription, in the hope that she would do it today, I could pick it up after work and be sorted for tomorrow. Once again, WRONG. My doctors don't do same day prescriptions, even though I explained the situation. They said they will try and sort it for after 5.30pm today, but they cant do it before then, and they may not be able to do it at all. I just have to turn up at 5.30 and hope for the best.
So all in all, quite a bit of confusion surrounding my first drop in clinic, hopefully it is just a few teething problems and it will all get easier in time...
So today was my first visit to the reheumatology drop in clinic. It was actually my second visit to the rheumatology nurse, but the first was a sort of introduction to what is going to happen over the next few months.
I was slightly nervous about this visit today, not because I was worried about what was going to happen, but because I was unsure about what time I was meant to be there! When I had my first visit to the nurse, it was a scheduled appointment, but she asked me to come to her drop in clinic in a months time, any time between 8:30 and 9:45 and that it was just a first come first serve basis. However on Friday I received a text from "NHS no reply" saying "this is your appointment reminder for Tuesday 6 November at 09:10".
Initially I thought that this would be an appointment with the rheumatologist doctor, but when I rang to find out, they said that this was my appointment with the nurse. Very confusing!
Anyway I went today at 8:50, so that I was there in enough time for the appointment, but my nurse was there waiting for me. When I asked her about the appointment time, she said that the text was complete rubbish and not to take any notice of the text, it is definitely a drop in clinic.
In my appointment, the nurse checked my joints to see which ones hurt, made a note of my recent blood test results and had a chat with me about how I am feeling. It turns out that my white blood cell count had gone up, meaning that I might have picked up an infection already, but she said it wasn't too high so I wasn't to worry. The good news is my inflamation count has started to decrease, not enough to notice any changes yet, but it is going in the right direction!
Last time I saw the nurse, she gave me a prescription for my first months worth of MTX and Folic acid, so I assumed that I would be getting my second months worth today. WRONG! Apparantly I am meant to get the prescription from my GP from now on, although I dont remember being told that! I am due to take my next dose tomorrow, so I had to email my GP and ask for the prescription, in the hope that she would do it today, I could pick it up after work and be sorted for tomorrow. Once again, WRONG. My doctors don't do same day prescriptions, even though I explained the situation. They said they will try and sort it for after 5.30pm today, but they cant do it before then, and they may not be able to do it at all. I just have to turn up at 5.30 and hope for the best.
So all in all, quite a bit of confusion surrounding my first drop in clinic, hopefully it is just a few teething problems and it will all get easier in time...
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