Treatment side effects
You know, whenever anyone asks me how I am, like the majority of people, I just say “fine” or “OK”. Even when people specifically ask me about the side effects of treatment, I tend to just gloss over them. I think I do that so that people don’t shower me with sympathy!
Anyway, now I’ve decided to tell it like it really is, so here goes….
Tiredness/exhaustion
My main side effect at the moment is this constant feeling of having no energy or enthusiasm left to do anything. This is by far the worst of things for me as I’m normally so full of life, energy & enthusiasm. Not that I have real cause for complaint ‘coz when I compare myself to others undergoing this treatment, my tiredness isn’t so bad. I have had to stop going to the gym totally now purely ‘coz I just can’t summon up the energy for it (not even at a weekend when I’ve got no work) & that annoys me so much. I used to feel so ‘alive’ (both mentally & physically) after a good circuit of the gym & I miss it dearly! I haven’t been to the gym for about 8 weeks now. Each morning it’s a struggle to get out of bed; I’m finding myself wishing I didn’t have to get up & staying in bed until the absolute last minute, then chastising myself for it! Weekends are worse ‘coz there’s not always a reason to get up early like there is during the week. Despite this, I still can’t seem to get to sleep before midnight!
Dry mouth
My other real bug bare is my dry mouth. I’ve been using BioXtra mouth care products (toothpaste, mouthwash, mouth gel & chewing gum, designed to stimulate production of saliva) for a few weeks now & they do help, but only to the point of making my mouth tolerable. My tongue & roof of my mouth are very sore & when I wake up each morning, my mouth is always so dry that it’s stuck shut with my tongue stuck to the roof of my mouth. I’ve had to alter my eating habits as a direct result of having this dry mouth ‘coz I find dry foods intolerable due to the virtual absence of saliva in my mouth. I also keep getting cracks in the corners of my lips which, no sooner have they healed, crack again! I must be careful about mouth ulcers – thankfully I haven’t developed any yet!
Drinking
As a direct result of my dry mouth, I’m constantly drinking. I’m drinking more water than anything, as that’s what I find most tolerable. Hot drinks can be very hard to tolerate ‘coz the heat aggravates my dry mouth so much that it can be quite painful. Even drinks such as fruit juice can be intolerable.
Urinary frequency
A direct result of my constant drinking is my increased urinary frequency although I’m not convinced it’s totally due to treatment. I first mentioned this weeks ago & it’s still a major problem for me. I go to the toilet at least every hour during the day & every 2 hours during the night, despite how much I may or may not drink. I tried just putting up with it, telling myself it’s just a side effect & that it will ease once I finish treatment but to be perfectly honest, I just can’t take it anymore. I had an appointment to see a urologist last Monday & he’s ordering tests on my bladder ‘coz he’s not convinced that it’s all down to the treatment. He said I’m very young to be experiencing such pronounced problems as it’s not just the frequency, but urgency too – if I don’t get to the toilet within 10 minutes of first feeling the urge, I can quite easily be incontinent. The consultant thinks I may have a nerve problem & wants me to have an x-ray & urodynamics tests (where they test the capacity of your bladder). He said that there is medication available to alleviate such a nerve condition but that this medication is prone to causing heartburn & indigestion which I already suffer with quite a bit, so I’m not keen to take it unless the tests prove it’ll do me good.
Mucous/catarrh
For months now, I’ve been getting copious amounts of catarrh building up at the back of my nose & throat which is verging on the ridiculous! It gets so bad that I find breathing through my nose quite difficult & so, end up mouth breathing, which exacerbates my dry mouth problem! I forever have to blow my nose & clear my throat & talk with an almost constant rasp. When I do manage to clear it to any kind of degree, it leaves my mouth feeling like sandpaper.
Rash
21 weeks into treatment & the rash which first appeared in the 2nd week is still there. It’s calmed down a fair bit on my legs but my arms are still quite itchy. I’m still using the Dermol bath emollient & lotion which helps keep it at a tolerable level but I do notice the itching gets worse if I shower instead of bath for more than a couple of days. I tend to avoid wearing woollen type materials & anything with tight sleeves. My preference has been to wear sleeveless t-shirts, but it’s getting far too cold for that now!
Bleeding
My platelets have dropped from 250 to 95, the normal range being 150 - 400 (x 10 9 /l). Whilst not at a panic level, I do notice that I bruise & bleed much easier now. I accidentally scraped my skin with the vegetable peeler the other day & the little cut bled for several minutes before I stemmed it & managed to get blood all over my hands, the potato & the kitchen unit… good job my mum wasn’t there to see it ‘coz I think she may have panicked!
Skin
My skin has been terrible since starting treatment. It seems that every bite, spot or bruise I get takes ages to heal & leaves a scar. I noticed it first about 4 weeks into treatment when I got an insect bite which took about 3 weeks to heal & left a nasty dark scar on my leg. Since then, I’ve had 2 more bites which have left similar scars & various minor cuts & bruises which have also left their marks. So now, my skin is a mess, especially on my legs, so I won’t be showing them off in a hurry!!
Hair loss
Since I’ve had my head shaved, my hair loss is a lot less noticeable, but definitely still happening. It’s not falling out in big clumps & I certainly don’t think that it’ll ever get to be too obvious if it carries on at this kind of rate. In any case, my hair loss doesn’t bother me that much – it bothers my mum an awful lot more than it bothers me, that’s for sure!
Dry ears
It’s not only my mouth that’s dry, but my ears as well. I didn’t think this would be a problem but I am certainly finding my ears more difficult to keep clean now. Not the worst of side effects by any means, but nonetheless, something I could do without!
Tingling sensation
I’m not sure if this is directly related to treatment or not, but I’m going to mention it anyway ‘coz it’s yet another thing that I’m having to cope with now. For the past 3-4 weeks, I’ve been experiencing a tingling sensation in my right leg. It goes from my thigh, right down to the sole of my foot & only seems to come on when I stand up. With it, I get an aching, pressure sensation in my hip & knee joints. My GP reckons it’s sciatica & has given me advice on posture & exercise - as it’s relatively mild, there’s nothing else for it at present. I just think it strange that it comes on every single time I stand up, without fail & that I very rarely experience it whilst sitting or lying down. Although having said that, I did have quite a bad pain (& it was a pain, rather than an ache) in my right hip/thigh in bed one night about 4 weeks ago, so I wonder if that was the start of this – to be honest, I can’t be sure!
Poor memory
The memory problem continues too. Although I don’t think it’s worsened over the last 12 weeks or so, it certainly hasn’t improved! If I don’t either set a reminder on my mobile phone or write things down, I just don’t do them - it’s as simple as that! I honestly don’t know how I’d cope if I lost my mobile – I think I’d forget to function, LOL!! It reminds me to take my tablets, do my injections, order/collect prescriptions, make phone calls, meet people – you name it, my mobile reminds me of it! My work is run by reminders that I set on important emails & calendar entries too. Family & friends have got used to my mobile chiming out reminders all the time now & are very tolerant of it, ‘coz I’m sure it must aggravate them somewhat.
I think that just about covers my side effects. As I say, I’m not the luckiest or most unfortunate where side effects are concerned & I must give myself credit ‘coz even if I do say so myself, I’m coping with them pretty well indeed. Let’s just see what the remaining 26 weeks has to offer now, shall we?
Big mercies
Whilst I might have a few side effects, I count myself very lucky that I haven’t really had any rages as such. The couple of minor tantrums that I displayed weeks ago appear to have been isolated incidents as I’ve not shown any kind of temper since, although I’ve noticed that I’m not quite my usual patient self. Out of all the side effects this treatment can cause, I dread the mental ones more than anything. Having coped with arthritis for so many years now, I’m good at dealing with physical problems, but mental problems are a whole different ball game. So I’m thankful for this one big mercy so far!
Rheumatoid arthritis
I can’t write this post without mentioning this. As far as my arthritis is concerned, I honestly don’t think I’m having too bad a time of it at present. I’m now taking 7-8 mg Prednisolone daily, but nothing else. My rheumatologist wanted me to try decreasing the Prednisolone down to 6-7 mgs, but despite my determination, I just haven’t been able to do that. I got down to 7mg daily but found physical activity just generally slower, stiffer & much more of an effort. I did also have quite a bad Sunday about 5 weeks ago where I felt generally stiff, lousy, lethargic & full of aches & pains, so I increased the steroids & am now taking 7-8 mgs on alternate days & am coping ok as I write this. Sundays do tend to be my worst day of the week now & I’m learning to cut myself some slack & take things easier on these days. One thing I have noticed is that the subluxation in my fingers has worsened over the past 4 months. I’m not saying that this is a direct result of treatment ‘coz this could happen anyway, but a few times now, I’ve felt that all too-familiar stiffness, heat & pain in my knuckles, together with a sensation of my tendons tightening & pulling my fingers even further out of line. This is just something that I’ve resigned myself to putting up with. So long as I can function reasonably well & relatively independently. When (not if) I get to the stage that I can no longer function adequately, I’ll consider having my knuckle joints replaced, but for the time being, they can stay as they are. I've put some photos below (not brilliant, but will do) to give you some idea as to the extent of subluxation I have in both hands.
Anyway, now I’ve decided to tell it like it really is, so here goes….
Tiredness/exhaustion
My main side effect at the moment is this constant feeling of having no energy or enthusiasm left to do anything. This is by far the worst of things for me as I’m normally so full of life, energy & enthusiasm. Not that I have real cause for complaint ‘coz when I compare myself to others undergoing this treatment, my tiredness isn’t so bad. I have had to stop going to the gym totally now purely ‘coz I just can’t summon up the energy for it (not even at a weekend when I’ve got no work) & that annoys me so much. I used to feel so ‘alive’ (both mentally & physically) after a good circuit of the gym & I miss it dearly! I haven’t been to the gym for about 8 weeks now. Each morning it’s a struggle to get out of bed; I’m finding myself wishing I didn’t have to get up & staying in bed until the absolute last minute, then chastising myself for it! Weekends are worse ‘coz there’s not always a reason to get up early like there is during the week. Despite this, I still can’t seem to get to sleep before midnight!
Dry mouth
My other real bug bare is my dry mouth. I’ve been using BioXtra mouth care products (toothpaste, mouthwash, mouth gel & chewing gum, designed to stimulate production of saliva) for a few weeks now & they do help, but only to the point of making my mouth tolerable. My tongue & roof of my mouth are very sore & when I wake up each morning, my mouth is always so dry that it’s stuck shut with my tongue stuck to the roof of my mouth. I’ve had to alter my eating habits as a direct result of having this dry mouth ‘coz I find dry foods intolerable due to the virtual absence of saliva in my mouth. I also keep getting cracks in the corners of my lips which, no sooner have they healed, crack again! I must be careful about mouth ulcers – thankfully I haven’t developed any yet!
Drinking
As a direct result of my dry mouth, I’m constantly drinking. I’m drinking more water than anything, as that’s what I find most tolerable. Hot drinks can be very hard to tolerate ‘coz the heat aggravates my dry mouth so much that it can be quite painful. Even drinks such as fruit juice can be intolerable.
Urinary frequency
A direct result of my constant drinking is my increased urinary frequency although I’m not convinced it’s totally due to treatment. I first mentioned this weeks ago & it’s still a major problem for me. I go to the toilet at least every hour during the day & every 2 hours during the night, despite how much I may or may not drink. I tried just putting up with it, telling myself it’s just a side effect & that it will ease once I finish treatment but to be perfectly honest, I just can’t take it anymore. I had an appointment to see a urologist last Monday & he’s ordering tests on my bladder ‘coz he’s not convinced that it’s all down to the treatment. He said I’m very young to be experiencing such pronounced problems as it’s not just the frequency, but urgency too – if I don’t get to the toilet within 10 minutes of first feeling the urge, I can quite easily be incontinent. The consultant thinks I may have a nerve problem & wants me to have an x-ray & urodynamics tests (where they test the capacity of your bladder). He said that there is medication available to alleviate such a nerve condition but that this medication is prone to causing heartburn & indigestion which I already suffer with quite a bit, so I’m not keen to take it unless the tests prove it’ll do me good.
Mucous/catarrh
For months now, I’ve been getting copious amounts of catarrh building up at the back of my nose & throat which is verging on the ridiculous! It gets so bad that I find breathing through my nose quite difficult & so, end up mouth breathing, which exacerbates my dry mouth problem! I forever have to blow my nose & clear my throat & talk with an almost constant rasp. When I do manage to clear it to any kind of degree, it leaves my mouth feeling like sandpaper.
Rash
21 weeks into treatment & the rash which first appeared in the 2nd week is still there. It’s calmed down a fair bit on my legs but my arms are still quite itchy. I’m still using the Dermol bath emollient & lotion which helps keep it at a tolerable level but I do notice the itching gets worse if I shower instead of bath for more than a couple of days. I tend to avoid wearing woollen type materials & anything with tight sleeves. My preference has been to wear sleeveless t-shirts, but it’s getting far too cold for that now!
Bleeding
My platelets have dropped from 250 to 95, the normal range being 150 - 400 (x 10 9 /l). Whilst not at a panic level, I do notice that I bruise & bleed much easier now. I accidentally scraped my skin with the vegetable peeler the other day & the little cut bled for several minutes before I stemmed it & managed to get blood all over my hands, the potato & the kitchen unit… good job my mum wasn’t there to see it ‘coz I think she may have panicked!
Skin
My skin has been terrible since starting treatment. It seems that every bite, spot or bruise I get takes ages to heal & leaves a scar. I noticed it first about 4 weeks into treatment when I got an insect bite which took about 3 weeks to heal & left a nasty dark scar on my leg. Since then, I’ve had 2 more bites which have left similar scars & various minor cuts & bruises which have also left their marks. So now, my skin is a mess, especially on my legs, so I won’t be showing them off in a hurry!!
Hair loss
Since I’ve had my head shaved, my hair loss is a lot less noticeable, but definitely still happening. It’s not falling out in big clumps & I certainly don’t think that it’ll ever get to be too obvious if it carries on at this kind of rate. In any case, my hair loss doesn’t bother me that much – it bothers my mum an awful lot more than it bothers me, that’s for sure!
Dry ears
It’s not only my mouth that’s dry, but my ears as well. I didn’t think this would be a problem but I am certainly finding my ears more difficult to keep clean now. Not the worst of side effects by any means, but nonetheless, something I could do without!
Tingling sensation
I’m not sure if this is directly related to treatment or not, but I’m going to mention it anyway ‘coz it’s yet another thing that I’m having to cope with now. For the past 3-4 weeks, I’ve been experiencing a tingling sensation in my right leg. It goes from my thigh, right down to the sole of my foot & only seems to come on when I stand up. With it, I get an aching, pressure sensation in my hip & knee joints. My GP reckons it’s sciatica & has given me advice on posture & exercise - as it’s relatively mild, there’s nothing else for it at present. I just think it strange that it comes on every single time I stand up, without fail & that I very rarely experience it whilst sitting or lying down. Although having said that, I did have quite a bad pain (& it was a pain, rather than an ache) in my right hip/thigh in bed one night about 4 weeks ago, so I wonder if that was the start of this – to be honest, I can’t be sure!
Poor memory
The memory problem continues too. Although I don’t think it’s worsened over the last 12 weeks or so, it certainly hasn’t improved! If I don’t either set a reminder on my mobile phone or write things down, I just don’t do them - it’s as simple as that! I honestly don’t know how I’d cope if I lost my mobile – I think I’d forget to function, LOL!! It reminds me to take my tablets, do my injections, order/collect prescriptions, make phone calls, meet people – you name it, my mobile reminds me of it! My work is run by reminders that I set on important emails & calendar entries too. Family & friends have got used to my mobile chiming out reminders all the time now & are very tolerant of it, ‘coz I’m sure it must aggravate them somewhat.
I think that just about covers my side effects. As I say, I’m not the luckiest or most unfortunate where side effects are concerned & I must give myself credit ‘coz even if I do say so myself, I’m coping with them pretty well indeed. Let’s just see what the remaining 26 weeks has to offer now, shall we?
Big mercies
Whilst I might have a few side effects, I count myself very lucky that I haven’t really had any rages as such. The couple of minor tantrums that I displayed weeks ago appear to have been isolated incidents as I’ve not shown any kind of temper since, although I’ve noticed that I’m not quite my usual patient self. Out of all the side effects this treatment can cause, I dread the mental ones more than anything. Having coped with arthritis for so many years now, I’m good at dealing with physical problems, but mental problems are a whole different ball game. So I’m thankful for this one big mercy so far!
Rheumatoid arthritis
I can’t write this post without mentioning this. As far as my arthritis is concerned, I honestly don’t think I’m having too bad a time of it at present. I’m now taking 7-8 mg Prednisolone daily, but nothing else. My rheumatologist wanted me to try decreasing the Prednisolone down to 6-7 mgs, but despite my determination, I just haven’t been able to do that. I got down to 7mg daily but found physical activity just generally slower, stiffer & much more of an effort. I did also have quite a bad Sunday about 5 weeks ago where I felt generally stiff, lousy, lethargic & full of aches & pains, so I increased the steroids & am now taking 7-8 mgs on alternate days & am coping ok as I write this. Sundays do tend to be my worst day of the week now & I’m learning to cut myself some slack & take things easier on these days. One thing I have noticed is that the subluxation in my fingers has worsened over the past 4 months. I’m not saying that this is a direct result of treatment ‘coz this could happen anyway, but a few times now, I’ve felt that all too-familiar stiffness, heat & pain in my knuckles, together with a sensation of my tendons tightening & pulling my fingers even further out of line. This is just something that I’ve resigned myself to putting up with. So long as I can function reasonably well & relatively independently. When (not if) I get to the stage that I can no longer function adequately, I’ll consider having my knuckle joints replaced, but for the time being, they can stay as they are. I've put some photos below (not brilliant, but will do) to give you some idea as to the extent of subluxation I have in both hands.
posted by Maria | 3:40 PM
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