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 check up. Show all posts
Showing posts with label check up. Show all posts
Sunday, 29 June 2014
Friday, 25 January 2013
An arthritis upgrade...
Hi everyone
So as I mentioned in my last blog, I had a check up with my consultant this week. I first saw her in August 2012 when I was diagnosed with arthritis, click here to read the post about my first meeting with my consultant. The plan was to get started on medication and to come back in three months to see how I was doing... Well five months later I finally got my appointment!
My expectations of how the appointment would go were nothing like what actually happened! After being told by my rheumatology nurse that I was improving nicely and therefore didn't need to see her anymore or have my blood tested as regularly, I expected for the consultant to match this notion. Even though in the back of my mind I felt like I was going downhill again and a lot of my pain had returned, since the nurse was happy with my progress, I assumed that I was just having a bit of a blip because of the snow and cold weather.
In actual fact, after being examined by my consultant, she told me that
since I still have so much swelling and pain in my joints, this is an
indication that my medication (Methotrexate) is not working properly. I was slightly confused
by this, as a few weeks ago I felt almost back to normal, but it turns out that
my steroids were masking the fact that my medication wasn't working. When I was
reducing my steroids, my medication should have stepped in its place, but
instead I have just got progressively worse.
The consultant also asked if I had any rashes on my body. I told her about a small rash that had started on my elbow and had appeared up my right forearm over the past week, but it was only minor and I didn’t have it anywhere else. (It turns out that I also had it on my other elbow, but couldn’t see it) My consultant believes that this is the start of psoriasis, and therefore I probably have Psoriatic arthritis.
About 1 in 10 people with psoriasis develops psoriatic arthritis and in most cases, the arthritis develops after the psoriasis. However, in a small number of cases the arthritis develops first, sometimes months or even years before the psoriasis develops. Trust me to be the minority!
This also highlights the fact that my medication isn't working because if it was, it would have stopped the psorasis from a developing. In a way, this is a good thing because it means I can have a firmer diagnosis of the type of rheumatoid arthritis and get the most accurate treatment, but at the same time I'd rather have nice skin. Although, at least I only have very small patches of it at the moment.
So the new plan is I have had my dose of Methotrexate increased to 8 pills, and will continue with this dose for the time being. I will have to go back to see my rheumatologist nurse in 6 weeks to see how I'm doing. If it looks like I'm still not getting better than this means that I am just not absorbing enough of the Methotrexate for it to work and therefore I will have to start injecting myself with it.
So I'm hoping that the increased dose gets to work ASAP!
So as I mentioned in my last blog, I had a check up with my consultant this week. I first saw her in August 2012 when I was diagnosed with arthritis, click here to read the post about my first meeting with my consultant. The plan was to get started on medication and to come back in three months to see how I was doing... Well five months later I finally got my appointment!
My expectations of how the appointment would go were nothing like what actually happened! After being told by my rheumatology nurse that I was improving nicely and therefore didn't need to see her anymore or have my blood tested as regularly, I expected for the consultant to match this notion. Even though in the back of my mind I felt like I was going downhill again and a lot of my pain had returned, since the nurse was happy with my progress, I assumed that I was just having a bit of a blip because of the snow and cold weather.
In actual fact, after being examined by my consultant, she told me that
since I still have so much swelling and pain in my joints, this is an
indication that my medication (Methotrexate) is not working properly. I was slightly confused
by this, as a few weeks ago I felt almost back to normal, but it turns out that
my steroids were masking the fact that my medication wasn't working. When I was
reducing my steroids, my medication should have stepped in its place, but
instead I have just got progressively worse.The consultant also asked if I had any rashes on my body. I told her about a small rash that had started on my elbow and had appeared up my right forearm over the past week, but it was only minor and I didn’t have it anywhere else. (It turns out that I also had it on my other elbow, but couldn’t see it) My consultant believes that this is the start of psoriasis, and therefore I probably have Psoriatic arthritis.
About 1 in 10 people with psoriasis develops psoriatic arthritis and in most cases, the arthritis develops after the psoriasis. However, in a small number of cases the arthritis develops first, sometimes months or even years before the psoriasis develops. Trust me to be the minority! This also highlights the fact that my medication isn't working because if it was, it would have stopped the psorasis from a developing. In a way, this is a good thing because it means I can have a firmer diagnosis of the type of rheumatoid arthritis and get the most accurate treatment, but at the same time I'd rather have nice skin. Although, at least I only have very small patches of it at the moment.
So the new plan is I have had my dose of Methotrexate increased to 8 pills, and will continue with this dose for the time being. I will have to go back to see my rheumatologist nurse in 6 weeks to see how I'm doing. If it looks like I'm still not getting better than this means that I am just not absorbing enough of the Methotrexate for it to work and therefore I will have to start injecting myself with it.
So I'm hoping that the increased dose gets to work ASAP!
Friday, 18 January 2013
New Year Update
Hi everyone
Happy new year! This year so far has been a bit of a busy one for me, hence my first post of the month being on the 18th of January!
Before I start, I would just like to acknowledge the late Alice Pyne. It was so sad to hear that she had passed last weekend. She was an inspiration to so many people and she showed that just because you have been diagnosed with an illness that you will have for the rest of your life, doesn't mean that you have to dwell on it. She also showed the power of using your illness to help others, which is what I am trying to do. RIP Alice.
So since my last post, I have reduced my steroids down to 2.5mg (I'm nearly off them!). Although, I have started to get pain back in all of the places I did before, so I am wondering if I will need to go back up to 5mg :( I am at the Rheumatoid Arthritis Doctor (Dr Wood) next week so hopefully she will advise me with what to do next. I've had to start wearing my wrist support occasionally again, I am struggling to get my arm above my head because of the pain in my collar bone, my feet are quite sore when I walk and most annoyingly, my fingers on my right hand are swollen and painful again. It feels like I am taking a step back, but I hope that Dr Wood will be able help me.
My appointment next week is for my 3 month check up from my first appointment... In August!! I was diagnosed at my appointment in August, then Dr Wood gave me a steroid injection that was to last three months and then she would see me again once I had started on my medication. Well, I finally received an appointment in the post in December for January 11th at 12pm, in Kendal! I had to ring up and rearrange for an appointment in Ulverston, otherwise I would have had to take pretty much the whole day off. The problems I have had with getting appointments has been ridiculous!
On a more positive note, I went to my monthly clinic with the Rheumatologist nurse this week. My blood test results showed that during the week that I was ill in December, my inflammation count shot straight back up to when I was first diagnosed with RA, so it was four times higher than the week before. Luckily my next blood test showed that it started to go back down again after that, so it was just down to me being ill. But other than that, my blood results showed promising signs, which means that I have now been passed to my GP and no longer need to go to the monthly clinic. It also means that I only have to get my blood tested once a month now rather than every two weeks which is also great news!
I am still on 6 pills of Methotrexate once a week, which I am pleased to say still aren't causing me too much trouble. I do tend to feel a bit dizzy and sometimes a bit sick on a Wednesday, but nothing too horrendous!
Happy new year! This year so far has been a bit of a busy one for me, hence my first post of the month being on the 18th of January!
Before I start, I would just like to acknowledge the late Alice Pyne. It was so sad to hear that she had passed last weekend. She was an inspiration to so many people and she showed that just because you have been diagnosed with an illness that you will have for the rest of your life, doesn't mean that you have to dwell on it. She also showed the power of using your illness to help others, which is what I am trying to do. RIP Alice.
So since my last post, I have reduced my steroids down to 2.5mg (I'm nearly off them!). Although, I have started to get pain back in all of the places I did before, so I am wondering if I will need to go back up to 5mg :( I am at the Rheumatoid Arthritis Doctor (Dr Wood) next week so hopefully she will advise me with what to do next. I've had to start wearing my wrist support occasionally again, I am struggling to get my arm above my head because of the pain in my collar bone, my feet are quite sore when I walk and most annoyingly, my fingers on my right hand are swollen and painful again. It feels like I am taking a step back, but I hope that Dr Wood will be able help me.
My appointment next week is for my 3 month check up from my first appointment... In August!! I was diagnosed at my appointment in August, then Dr Wood gave me a steroid injection that was to last three months and then she would see me again once I had started on my medication. Well, I finally received an appointment in the post in December for January 11th at 12pm, in Kendal! I had to ring up and rearrange for an appointment in Ulverston, otherwise I would have had to take pretty much the whole day off. The problems I have had with getting appointments has been ridiculous!
On a more positive note, I went to my monthly clinic with the Rheumatologist nurse this week. My blood test results showed that during the week that I was ill in December, my inflammation count shot straight back up to when I was first diagnosed with RA, so it was four times higher than the week before. Luckily my next blood test showed that it started to go back down again after that, so it was just down to me being ill. But other than that, my blood results showed promising signs, which means that I have now been passed to my GP and no longer need to go to the monthly clinic. It also means that I only have to get my blood tested once a month now rather than every two weeks which is also great news!I am still on 6 pills of Methotrexate once a week, which I am pleased to say still aren't causing me too much trouble. I do tend to feel a bit dizzy and sometimes a bit sick on a Wednesday, but nothing too horrendous!
Friday, 21 December 2012
Checkup clinic, blood tests and DIY
As expected, I haven't had much spare time since getting the keys to my house so once again, apologies for the delay in my latest blog post. Jamie and I have spent every spare minute we have working on our house! We went straight round last Friday and started stripping wallpaper, only to find what was to become our worst enemy lurking underneath... Wood chip!
For those of you who are lucky enough to not have come across wood chip paper, it's basically a cheap paper with small chips of wood within it which gives the effect of a textured wall finish. Apparently it was really fashionable in the 1970s?! Then add several layers of paint on top and you have the most difficult thing to remove from walls...Ever! Best of all, it is on every single wall!! So we have spent the past week steaming and scraping the stuff off the walls, with the help of our families. We are making progress with only a few walls left to do, but i feel like I have a scraper permanently attached to my hand!
In other news, I had my monthly check up with the Rheumatologist nurse this week. My blood test results showed that I was doing well and my inflammation was coming down, which is great. Its a relief to know that the MTX is working. It also showed that my white blood cell count is still high, so I'm constantly fighting some sort of infection, although it can't be that bad as I haven't felt particularly ill. I have been quite lucky so far with not picking up any bugs or viruses, despite having my immune system dampened by medication. However this week I was finally beaten and I now have a sore throat, sore head and annoying cough. I'm feeling pretty lousy and working on the house every spare minute probably isn't helping but I'm not one to mope in bed.
It was also blood test wednesday this week. I managed to get my best place in the queue ever, Patient 5! It was pretty lucky though to be honest because I felt like I was going to pass out if I had to wait much longer. I think it was the mix of feeling unwell and the warm hospital, but I was glad to hear my name being called. I managed to get a right whopper of a bruise this time though, I think its time to start switching arms!
I'm out for tea with the girls tomorrow for a catch up before Christmas and all my other time will either be spent working on the house or recouperating. Hope you all have a lovely weekend!
For those of you who are lucky enough to not have come across wood chip paper, it's basically a cheap paper with small chips of wood within it which gives the effect of a textured wall finish. Apparently it was really fashionable in the 1970s?! Then add several layers of paint on top and you have the most difficult thing to remove from walls...Ever! Best of all, it is on every single wall!! So we have spent the past week steaming and scraping the stuff off the walls, with the help of our families. We are making progress with only a few walls left to do, but i feel like I have a scraper permanently attached to my hand!
In other news, I had my monthly check up with the Rheumatologist nurse this week. My blood test results showed that I was doing well and my inflammation was coming down, which is great. Its a relief to know that the MTX is working. It also showed that my white blood cell count is still high, so I'm constantly fighting some sort of infection, although it can't be that bad as I haven't felt particularly ill. I have been quite lucky so far with not picking up any bugs or viruses, despite having my immune system dampened by medication. However this week I was finally beaten and I now have a sore throat, sore head and annoying cough. I'm feeling pretty lousy and working on the house every spare minute probably isn't helping but I'm not one to mope in bed.
It was also blood test wednesday this week. I managed to get my best place in the queue ever, Patient 5! It was pretty lucky though to be honest because I felt like I was going to pass out if I had to wait much longer. I think it was the mix of feeling unwell and the warm hospital, but I was glad to hear my name being called. I managed to get a right whopper of a bruise this time though, I think its time to start switching arms!
I'm out for tea with the girls tomorrow for a catch up before Christmas and all my other time will either be spent working on the house or recouperating. Hope you all have a lovely weekend!
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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