Since I didn't qualify for the good medication, I started the other drugs three weeks ago. The information packet they gave me said that it should take about a month until they start working and a few months until they reach full effectiveness. I'm still waiting for them to do something. In the meantime, I finished my steroid regimen yesterday, which means they won't be doing anything anymore. But they were only a temporary fix until these new drugs start working. (Although the pain never fully subsided.)
The downside of these drugs is nausea. It's one of the main side-effects but might subside as my body gets used to the medication. I don't usually experience side-effects for my medications, apart from the time I was allergic to my medication, but this one is bad. I only take the medication once a week, with folic acid supplements on four of the other days, but my nausea has been about half of the week, every week. I had to take two days off work so far (one a week) and I've talked to my supervisor about working from home on the days when my nausea is too bad to make it into the office but no so bad that I can't work. She said that it's fine as long as I let her know in the morning.
So, long story short, my back is still sore and my stomach is nauseated. Basically, my abdomen hurts from both sides and it sucks! Hopefully, the medication starts to work and my nausea subsides. I don't want to even think about trying to decide if I need to stop the medication because of the nausea it causes or if it's worth it to not have the back pain. If I still have nausea after a few months, it'll be a lose-lose situation.
Wednesday, 12 July 2017
Tuesday, 27 June 2017
Starting another new medication
I started my new medication last Wednesday after finally getting a response from my rheumatologist. She said that it was fine for me to stay on my other medications while taking the new one. (I'll see her in a few months to discuss if I should continue this long term.) The medication is only once a week and I need to take folic acid supplements on the four days furthest away. (Methotrexate on Wednesday and folic acid Friday-Monday.) Apparently, methotrexate makes it harder for the body to absorb folic acid from food. I started with a half dose of methotrexate last week and tomorrow I'll go to a full dose.
The reason for the half dose first is because the new drug can have a lot of side-effects, such as nausea, that can be reduced through a slower introduction. I hadn't had any side effects until last night when I started feeling really nauseated. It stopped me from sleeping well last night and I still felt sick this morning. I decided that I had to stay home from work today because of it. Hopefully, it'll get better as my body gets used to the new medication.
This past weekend, I also chopped off my hair to donate for the fifth and final time. It's been getting harder for me to take care of my long hair with all of my health problems and it was long enough to donate again. Plus, one of the common side effects of my drug is hair thinning or hair loss. I'm only taking a low dose, but the medication is used in high doses in chemotherapy and abortion. Clearly, it's good at killing rapidly growing things. I'm not sure if I'll experience this side effect, but I do like my new hairstyle and the ease of shorter hair.
I've also started going to a physio to get some exercises to help with pain. At this point, they're just causing more pain because those muscles are not used to being used.
The reason for the half dose first is because the new drug can have a lot of side-effects, such as nausea, that can be reduced through a slower introduction. I hadn't had any side effects until last night when I started feeling really nauseated. It stopped me from sleeping well last night and I still felt sick this morning. I decided that I had to stay home from work today because of it. Hopefully, it'll get better as my body gets used to the new medication.
This past weekend, I also chopped off my hair to donate for the fifth and final time. It's been getting harder for me to take care of my long hair with all of my health problems and it was long enough to donate again. Plus, one of the common side effects of my drug is hair thinning or hair loss. I'm only taking a low dose, but the medication is used in high doses in chemotherapy and abortion. Clearly, it's good at killing rapidly growing things. I'm not sure if I'll experience this side effect, but I do like my new hairstyle and the ease of shorter hair.
I've also started going to a physio to get some exercises to help with pain. At this point, they're just causing more pain because those muscles are not used to being used.
Monday, 12 June 2017
My x-rays failed to be bad enough!
The steroids that I started taking last week have been doing some great things. My pain has been bearable. I was feeling so good that when I was on my way home from work on Friday, I just wanted to sing and dance.
When I was almost home, I received a message from my rheumatologist that my x-rays did not qualify for the good drugs. She will be mailing me a script for Methotrexate, which is the other drug that she explained to me. I should get it in the mail sometime this week.
Methotrexate has been used for rheumatoid arthritis for 25 years, so it has a good track record of being used. It's not the medication that I wanted, but hopefully it'll help. At least until my referral goes through to see another rheumatologist for a second opinion. Maybe then we can figure something out.
The new drug should take a few weeks to start working and a few months to have its full effect. This is starting to worry me as my pain is returning. It's not just my lower back and bum, but often down my whole right leg. The steroids were enough for the pain a week ago, but the pain seems to be increasing beyond what they're helping with. Not to mention that I need to start weening off my steroids by lowering 1 tablet each week. So those should end in about a month.
I have an appointment with a physiotherapist in about a week, so hopefully that will help. In the meantime, all I can do is keep praying for healing and doing what I can to relax my lower back.
When I was almost home, I received a message from my rheumatologist that my x-rays did not qualify for the good drugs. She will be mailing me a script for Methotrexate, which is the other drug that she explained to me. I should get it in the mail sometime this week.
Methotrexate has been used for rheumatoid arthritis for 25 years, so it has a good track record of being used. It's not the medication that I wanted, but hopefully it'll help. At least until my referral goes through to see another rheumatologist for a second opinion. Maybe then we can figure something out.
The new drug should take a few weeks to start working and a few months to have its full effect. This is starting to worry me as my pain is returning. It's not just my lower back and bum, but often down my whole right leg. The steroids were enough for the pain a week ago, but the pain seems to be increasing beyond what they're helping with. Not to mention that I need to start weening off my steroids by lowering 1 tablet each week. So those should end in about a month.
I have an appointment with a physiotherapist in about a week, so hopefully that will help. In the meantime, all I can do is keep praying for healing and doing what I can to relax my lower back.
Wednesday, 7 June 2017
You know you have a chronic disease when you pray for a BAD x-ray to qualify for medications
I have been in excruciating pain since Saturday. My sacroiliac joints, as well as my other joints, have been hurting for a while, but they have gotten SO MUCH worse since Saturday. I spent most of Saturday laying on the couch with an electric blanket around my lower back.
Sunday I was supposed to do creche at church, but I could barely be there for the first service. (Rohan and I attend the first service when we have kids min during the second service.) My pain was so bad that I was almost in tears. I talked to the kids ministry pastor and explained that I need to go off the roster at least until I get new meds that work. It was a really hard decision for me, but I just couldn't function. I was going to wait in the car while Rohan did kids min during the second service, but Lisa (the kids min pastor) was able to find me a ride home. I spent the rest of the day in my electric blanket again. I also made an appointment to see my GP on Tuesday morning because I could do that through their app. I'd have to wait until Monday to call my rheumy.
Monday came and I was in excruciating pain still, but I had to go to work. I got there and called rheumy right away to see when was the soonest I could go in. The receptionist said that I needed a new referral because apparently my last one was only 6 months. But I was planning on seeing my GP anyway, as I didn't think I'd be able to see rheumy any time soon, so I could get a new one. Surprisingly they actually had an appointment on Tuesday afternoon. When I called my GP to get a new referral, I ended up changing my appointment with my GP to Monday afternoon.
I left work early to get there. He was surprised to find out that I wanted to go back to my old rheumy. But I explained that I needed to get something to deal with the pain. He could tell that I was in a lot of pain. But my old rheumy is currently my only way to get something for it. Getting in to see a new rheumatologist in Canberra can take a year. I DO NOT have that long. I still have that referral to the public rheumatologist going through, but in the meantime I have to keep going back to my old rheumy.
Then yesterday I went to the rheumatologist. I was taking bets on how late she would be, but she was actually basically on time! (only a few minutes late) I told her what's been going on and I was determined to leave with something!
She told me that she agrees with my GP that biologics are what I should be on, but I need to qualify both criteria. My blood is bad enough, but my x-ray last year was not. She gave me an imaging request form to go get a new one. She also gave me some steroids, which are another immunosuppresant, to take in the meantime. I started those this morning and I'm hoping they start working soon.
If I don't qualify for biologics, she explained about another medication she'd put me on. That one isn't as good and it'll lessen the inflammatory markers so it'd be harder to qualify for the biologics later on if she puts me on the other medication. Not to mention it isn't something I should be on long term if I want to have kids because it's known to cause birth defects or miscarriages. So going on it now could mean we have a harder time of getting me on something else in the future. But that's a problem we'll deal with when we get to it. Our first priority is to get me medications so I won't be in immense pain!
I met up with Rohan after my rheumy appointment. That way I could pick out another electric blanket. The pain has been so bad that I wanted to get another one so I could leave one at work and one at home. We also filled my prescription and had dinner out because I still had a birthday voucher. My emotions went crazy from all of the stress of the last couple days. My mind was all over the place and I couldn't stop shaking. But luckily it also meant that I was exhausted later that evening. I slept so well last night!
This morning I went to the hospital to get the x-ray done. I wanted to get it done as soon as possible so we could get the results as soon as possible so I could *fingers crossed* start my new drugs. Getting to the hospital was a pain in the butt, although only literally as that's where the sacroiliac joint is. I was in a lot of pain walking from the bus. When I was in the waiting room, I was literally praying that my x-rays would be bad enough to let me qualify. My joints weren't hurting as bad this morning, so I'm worried about that. They really hurt now, though!
Luckily the hospital is on my way to work and I got through pretty quickly so I made it to work at 9:30, which is how late I sometimes get in normally. It's great working in academia and having flexible hours!
I was in immense pain all day and even almost cried a couple of times. The pain was that bad. Even though I did have my electric blanket, which helps with some of the pain. I have someone from work environment coming over to my office tomorrow to see if there's anything we can do it make it better.
For now I'm home, laying on my electric blanket, and praying to hear good news from my rheumatologist tomorrow!
Sunday I was supposed to do creche at church, but I could barely be there for the first service. (Rohan and I attend the first service when we have kids min during the second service.) My pain was so bad that I was almost in tears. I talked to the kids ministry pastor and explained that I need to go off the roster at least until I get new meds that work. It was a really hard decision for me, but I just couldn't function. I was going to wait in the car while Rohan did kids min during the second service, but Lisa (the kids min pastor) was able to find me a ride home. I spent the rest of the day in my electric blanket again. I also made an appointment to see my GP on Tuesday morning because I could do that through their app. I'd have to wait until Monday to call my rheumy.
Monday came and I was in excruciating pain still, but I had to go to work. I got there and called rheumy right away to see when was the soonest I could go in. The receptionist said that I needed a new referral because apparently my last one was only 6 months. But I was planning on seeing my GP anyway, as I didn't think I'd be able to see rheumy any time soon, so I could get a new one. Surprisingly they actually had an appointment on Tuesday afternoon. When I called my GP to get a new referral, I ended up changing my appointment with my GP to Monday afternoon.
I left work early to get there. He was surprised to find out that I wanted to go back to my old rheumy. But I explained that I needed to get something to deal with the pain. He could tell that I was in a lot of pain. But my old rheumy is currently my only way to get something for it. Getting in to see a new rheumatologist in Canberra can take a year. I DO NOT have that long. I still have that referral to the public rheumatologist going through, but in the meantime I have to keep going back to my old rheumy.
Then yesterday I went to the rheumatologist. I was taking bets on how late she would be, but she was actually basically on time! (only a few minutes late) I told her what's been going on and I was determined to leave with something!
She told me that she agrees with my GP that biologics are what I should be on, but I need to qualify both criteria. My blood is bad enough, but my x-ray last year was not. She gave me an imaging request form to go get a new one. She also gave me some steroids, which are another immunosuppresant, to take in the meantime. I started those this morning and I'm hoping they start working soon.
If I don't qualify for biologics, she explained about another medication she'd put me on. That one isn't as good and it'll lessen the inflammatory markers so it'd be harder to qualify for the biologics later on if she puts me on the other medication. Not to mention it isn't something I should be on long term if I want to have kids because it's known to cause birth defects or miscarriages. So going on it now could mean we have a harder time of getting me on something else in the future. But that's a problem we'll deal with when we get to it. Our first priority is to get me medications so I won't be in immense pain!
I met up with Rohan after my rheumy appointment. That way I could pick out another electric blanket. The pain has been so bad that I wanted to get another one so I could leave one at work and one at home. We also filled my prescription and had dinner out because I still had a birthday voucher. My emotions went crazy from all of the stress of the last couple days. My mind was all over the place and I couldn't stop shaking. But luckily it also meant that I was exhausted later that evening. I slept so well last night!
This morning I went to the hospital to get the x-ray done. I wanted to get it done as soon as possible so we could get the results as soon as possible so I could *fingers crossed* start my new drugs. Getting to the hospital was a pain in the butt, although only literally as that's where the sacroiliac joint is. I was in a lot of pain walking from the bus. When I was in the waiting room, I was literally praying that my x-rays would be bad enough to let me qualify. My joints weren't hurting as bad this morning, so I'm worried about that. They really hurt now, though!
Luckily the hospital is on my way to work and I got through pretty quickly so I made it to work at 9:30, which is how late I sometimes get in normally. It's great working in academia and having flexible hours!
I was in immense pain all day and even almost cried a couple of times. The pain was that bad. Even though I did have my electric blanket, which helps with some of the pain. I have someone from work environment coming over to my office tomorrow to see if there's anything we can do it make it better.
For now I'm home, laying on my electric blanket, and praying to hear good news from my rheumatologist tomorrow!
Wednesday, 24 May 2017
Not all disabilities are visible
It's been a while since I've posted on here and that's a good thing. I've been doing really well. I started a job a few months ago and a couple weeks ago that's been made full time until the end of the year. I wasn't sure how I would go with my health problems, but they've been going great. My bipolar has been under control and I haven't been in much pain. (Apart from a few trips to the physio because of shoulder/neck pain from something unrelated.)
But now that it's autumn and the weather is changing, my joints are starting to hurt quite a bit again. My back was getting so bad today that I had to leave a bit early from work so that I could get home and lay down.
I went to my doctor this morning to renew scripts and had a conversation about my rheumatologist. We haven't gotten anywhere with regards to a diagnosis and she hasn't ordered any more tests, so I asked for a referral to another rheumatologist to get a second opinion. My GP said that he thinks I should be on biologics, but I need a diagnosis from a rheumatologist before that can happen. Hopefully we'll actually get somewhere with a new rheumatologist. The wait lists are generally really long, especially for new patients. But at least I have my other drugs in the meantime.
The picture is something that they have in London that is awesome for those with chronic disabilities who take public transport. I don't look like I'd have a disability, but sometimes my pain makes it too hard to stand. I wish we had these cards because I'd hate to need to ask someone to offer me their seat. Luckily there were plenty of seats for me on the bus today.
You can read more about the badges/cards here.
But now that it's autumn and the weather is changing, my joints are starting to hurt quite a bit again. My back was getting so bad today that I had to leave a bit early from work so that I could get home and lay down.
I went to my doctor this morning to renew scripts and had a conversation about my rheumatologist. We haven't gotten anywhere with regards to a diagnosis and she hasn't ordered any more tests, so I asked for a referral to another rheumatologist to get a second opinion. My GP said that he thinks I should be on biologics, but I need a diagnosis from a rheumatologist before that can happen. Hopefully we'll actually get somewhere with a new rheumatologist. The wait lists are generally really long, especially for new patients. But at least I have my other drugs in the meantime.
The picture is something that they have in London that is awesome for those with chronic disabilities who take public transport. I don't look like I'd have a disability, but sometimes my pain makes it too hard to stand. I wish we had these cards because I'd hate to need to ask someone to offer me their seat. Luckily there were plenty of seats for me on the bus today.
You can read more about the badges/cards here.
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