A blog about TRAPS (Tumor Necrosis Factor Receptor-Associated Periodic Syndrome), living life with an incurable illness and learning to live well.
Thursday, October 27, 2011
Maximum Tolerated Dose or How I'm an Idiot
I asked about all sorts of things. What about over the counter joint supplements -- no real data on them being effective. What about going on an immunosuppresie, well, it would work to dampen down inflammation, but really only in the joints and you need a rheum to write the script. What about pain killers?
This is when I admitted, "I'm exceeding the 8 a day I'm allowed." She said, "Wait! 8 of what? Paracetemol?" I said: "No, no! The voltaren!"
She got this look in her eyes and said, "But you're only allowed 3 a day!! How long have you taken that dose?" I shrugged. Not often. I took about 8 the night I fell, but over a 24 hour period after I fell. And occasionally 4 or 5.
It's just NOT effective in combating the pain that I feel when I need to be mum who drives, get groceries, hangs clothes out, cook, etc.
She asked what else I'm taking it with. Mostly ibuprofen. And occasionally the trifecta of voltaren, ibuprofen and tramadol.
She said that if that doesn't control the pain then something must be going on in there.
But I still have to wait the x weeks (I can't remember if it's 12 or 16) to get a referral to either the rheum or bone doctor.
Of course, I could PAY to see a specialist, but this close to xmas? They all start going on leave in late Nov.
So, my plan is to wait until Monday and ring the rheum's office and ask for the nurse. The odds of ever getting the nurse are 1 in 10, but she does get notes to Will. I'll explain that I need to wait x weeks until the GP will refer to Will, but can I just be a dork and ask for him by myself?
I've got physio booked for 14 Dec if that gives you an idea of how long it takes.
So, when we got home I started looking up the max dose for Voltaren on the packaging. Now, my voltaren comes as diclofenac sodium in a brown pill can with a twist off lid. It's not child-proof and it simply says: "Diclofenac sodium, 50mg" and advises me to take 1 tablet 3 times a day.
I had to go dig in my emergency box to find a proper voltaren box. In the pamphelet, it reads that you are to take 1 tablet 3 times a day and that some women experience relief from dysmennorhea by taking 4 tablets or 200mg a day.
That is it.
It doesn't say: Hey Moron!! Yes, you there! Take this but only 3 tablets a day or 150mg. That's it!
I suppose because my pain is bad and I like taking things that I can drive on, I didn't even think about maximum doses. Especially since I took more than 4 on occasions where there was tremendous pain but I didn't want to bother going to the ED or after hours.
It was stupid, yes, I get that. But, to be fair, when you hurt, you don't actually think logically, and when you've got a million things to do and it helps, you forget about safety or maximum tolerated doses. I suppose because it's not an addictive substance there is less notice about doses.
This is not the leaflet I have, but a similar one on voltaren: here
But, I've made myself a note with all the limits on it so I can reference it in the future.
I'm now going to try the voltaren with the codalgin I have to see if we can create a blanket effect once I get my blood plasma levels up with the paracetemol.
Thus far there is very little pain relief and it hurts. A lot. I hate it.
I went to get Sophie yesterday and it was raining heaps and very cold. I waited just outside her classroom and when they came out to get their backpacks, they started with the questions. Sophie's Mum, why do you have crutches.
As I'm answering them, 2 little monsters start swinging their backpacks at my right crutch. Which hits my hip. I felt like lightening bolts were hitting me. I had to actually STOP them from hitting the crutches and tell them that is NOT ok behaviour.
Yeah, they're 5 but come on.
One little boy went to hit a friend's kid and the friend's kid hit him back. The force pushed him into my left crutch and he whines: You hurt me!
I was so peeved.
Today was better. I avoided the backpack getting and went into the classroom. A lot of them starting asking, "What happened?!" and I just said that there is something very sore in my thigh that won't let me bend so I need my sticks.
One little boy said: "I think it's cool. If you need to hurt someone, you can!!" Another little boy chimed in: "Yeah, that'd be awesome!!"
So, I feel a bit better about the stick.
I said I was going to dress it up like a broomstick for Halloween and they decided that would mean I could fly.
My hip is quite sore and sitting is becoming harder and harder.
When you sit, you relax into the surface. That relaxing movement gives me the worst pain, so when you need to pee, you get this urgency to go to the loo. But when you sit and engage those muscle to pee, you get hit with this pain and the pee sort of stops mid-flow and it's all so awkward trying to start/stop with the pain and moving your hips into different angles.
It takes Pee-Pee Dance to a new level.
Kiwis don't really celebrate Halloween, so we'll be joining other expats this weekend to celebrate. It should be good fun, stick included.
About Me
- Jen
- I'm Jen and this is my blog. I'll take you through my diagnosis and life with an incurable illness. In 2008 I was diagnosed with Familial Mediterranean Fever but in July 2010 I was diagnosed with Tumour Necrosis Factor alpha Receptor Associated Periodic Syndrome. (google Familial Hibernian Fever) I'd really like to work as a fertility educator or an arthritis educator. I enjoy baking, trying to find 'good' Mexican food in NZ and my dream is to vacation in Tahiti. I'd trade money for Sleep, cats and warm weather.
Tumor necrosis factor receptor-associated periodic syndrome (TRAPS) is a rare multisystem genetic disorder characterized by unexplained periodic episodes or "attacks" of fever associated with additional symptoms including muscle pain (myalgia), abdominal pain, headaches and skin rashes. The specific symptoms can vary greatly from one person to another. The duration of the characteristic episodes can also vary, lasting anywhere from a couple days to one week to more than one month. Onset is usually during infancy or childhood. TRAPS is caused by mutations of the tumor necrosis factor receptor-1 (TNFR1) gene that encodes the 55-kDa receptor for TNF.
Labels
- ankylosing spondylitis (1)
- Answers (1)
- anxiety (2)
- Aserger's Syndrome (1)
- asperger's syndrome (3)
- attachment parenting (2)
- Autism (4)
- Baby Loss (3)
- Badger (1)
- Beluga (1)
- Blame (1)
- boobs (3)
- bottle feeding (1)
- carry on (1)
- cats (2)
- chemicals (1)
- Christmas (1)
- Chronic Illness (8)
- Chronic Illness Cat (2)
- chronic pain (4)
- cleaning (1)
- Co-Dependence (1)
- Colchicine (3)
- cooking (2)
- Depression (1)
- disability awareness (1)
- Doctors (4)
- dogs (1)
- domestic violence (1)
- drugs (5)
- dyslexia (1)
- eco (1)
- Eczema (1)
- Eeyore (1)
- FAIL (1)
- Failure (2)
- fall (1)
- Flare (2)
- gentle parenting (3)
- Grief (3)
- Guilt (3)
- halloween (1)
- Hedgehog (1)
- hip (2)
- Invisible Illness (11)
- Jen (3)
- Journey to Diagnosis (9)
- keep calm (1)
- Kidney (1)
- life (1)
- Loss (5)
- Mediband (1)
- medication (2)
- melatonin (1)
- memes (1)
- miscarriage (5)
- Miss S (4)
- MTX (1)
- neglect (1)
- Negotiating Pain (1)
- Notes to Doctors (5)
- October 15 (2)
- Optimism (1)
- Pain (10)
- parenting (1)
- Passing On (1)
- Pessimism (1)
- pills (1)
- Prednisone (5)
- pregnancy (1)
- public health system (3)
- Questions (2)
- Recovery (1)
- school (1)
- seroquel (1)
- song (1)
- Steroid (1)
- sticks (2)
- Survival Guide (1)
- tips (1)
- tired (1)
- transitions (1)
- TRAPS (3)
- twin loss (1)
- visible illness (2)
- wankers (1)
- weaning (1)
- xray (1)
- Yeti (1)
Start Here.
The Spoon Theory
* An Open Letter To Those Without Invisible Disability Or Chronic Illness
* You're Not Lazy, You're Sick
Lab Tests
* Autoimmune Disease Tests
* Autoimmune Labs 101
* Lab Tests Online (AU)
* University of Washington
* Pediatric Rheumatology
* ANA Test
* Autoimmune Lab Tests
* Laboratory Diagnosis
* Wrong Diagnosis
* Lab Tests Online
* Immco Diagnostics
Familial Hibernian Fever
* Wikipedia
* Traps
* In Children
* Patient Experiences
* NCBI
* The Cleveland Clinic
* Gene Dx
* Healthy Parent
* Q J Medical Journal
* British Medical Journal
* Anaesthetist.com
* NIAMS
* Wrong Diagnosis
* Cigna
* John Hopkins
* Arthritis Research
* TRAPS PDF
Familial Mediterranean Fever
* A good FMF Resource
* FMF -- Definitions
* Children's Health
* FMF from State University
Autoinflammatory Diseases
* British Medical Journal PDF
* Medscape
* NIH News
* Cell.com
* Autoinflammatory vs Autoimmune
Lupus
* Lupus UK
* Medicine Net
* Kid's Health
* Web MD
* UK Lupus
* Mayo Clinic
* Wikipedia
* Lupus Foundation of America
* Lupus Lab Results
Lyme Disease
* Igenex Lab -- Start Here
* Under Our Skin
* Diagnosis & Testing
* How to find a LLMD
* Finding a Doctor
* eHow.com Find a LLMD
* Lyme Disease Resource
* Linda's Lyme Disease Journal
Rheumatoid Arthritis
* Wikipedia
* Medicine Net
* Arthritis Foundation
* Mayo Clinic
* National Rheumatoid Arthritis Society
* WebMD
Still's Disease
* Still's Disease PDF
* International Still's Disease Foundation
* Medicine Net
* Wikipedia
* Mayo Clinic
* Medline Plus
* Arthritis Insight
* Arthritis Foundation
* About.com
Genetic Diseases
* Medicine Net
* Wikepedia
* Genomics
* Genetic Disease Foundation
* Medline Plus
Chronic Illness & Emotions
* Coping with Persistent Pain PDF
* Chronic Pain & Depression
* Managing Pain
* Chronic Illness Coach
* Cognition, Emotion & Chronic Illness
* Rest Ministries
* Living with Chronic Illness
* Understanding Emotions & Chronic Illness
* The Many Emotions of Chronic Arthritis
* Coping with Chronic Illness
* Illness & Anger
* Emotions of Chronic Fatigue
* Dealing with a Health Condition
* Emotions of Chronic Pain Management
* Experiencing & Expressing Emotions
* Self-Esteem for People with Disabilities
* Understanding & Treating Depression
* When is Anger a Problem?
* Expressing Anger?
* Overcoming Anger & Aggression
* Relaxaction
* Relaxation Audio Files
* How Counseling Helps
* Affirmations for Building Self-Esteem
* Understanding Emotional Responses
* Grief & Grieving
* Dr. Bob's Online Pamphlet Collection
Nutritional Support
* Anti-Inflammatory Herbs
Safety of Commonly Prescribed Drugs
* NSAIDs & Stomach Pain
Other Reads
* What is Heartbreak?
* Twin Loss NZ
* International Baby Lost Mother's Day
* The Pregnant Chicken
Memes
* Infertile Panda
* Chronic Illness Cat
Categories
- ankylosing spondylitis (1)
- Answers (1)
- anxiety (2)
- Aserger's Syndrome (1)
- asperger's syndrome (3)
- attachment parenting (2)
- Autism (4)
- Baby Loss (3)
- Badger (1)
- Beluga (1)
- Blame (1)
- boobs (3)
- bottle feeding (1)
- carry on (1)
- cats (2)
- chemicals (1)
- Christmas (1)
- Chronic Illness (8)
- Chronic Illness Cat (2)
- chronic pain (4)
- cleaning (1)
- Co-Dependence (1)
- Colchicine (3)
- cooking (2)
- Depression (1)
- disability awareness (1)
- Doctors (4)
- dogs (1)
- domestic violence (1)
- drugs (5)
- dyslexia (1)
- eco (1)
- Eczema (1)
- Eeyore (1)
- FAIL (1)
- Failure (2)
- fall (1)
- Flare (2)
- gentle parenting (3)
- Grief (3)
- Guilt (3)
- halloween (1)
- Hedgehog (1)
- hip (2)
- Invisible Illness (11)
- Jen (3)
- Journey to Diagnosis (9)
- keep calm (1)
- Kidney (1)
- life (1)
- Loss (5)
- Mediband (1)
- medication (2)
- melatonin (1)
- memes (1)
- miscarriage (5)
- Miss S (4)
- MTX (1)
- neglect (1)
- Negotiating Pain (1)
- Notes to Doctors (5)
- October 15 (2)
- Optimism (1)
- Pain (10)
- parenting (1)
- Passing On (1)
- Pessimism (1)
- pills (1)
- Prednisone (5)
- pregnancy (1)
- public health system (3)
- Questions (2)
- Recovery (1)
- school (1)
- seroquel (1)
- song (1)
- Steroid (1)
- sticks (2)
- Survival Guide (1)
- tips (1)
- tired (1)
- transitions (1)
- TRAPS (3)
- twin loss (1)
- visible illness (2)
- wankers (1)
- weaning (1)
- xray (1)
- Yeti (1)
Blog Archive
-
▼
2011
(35)
-
▼
October
(11)
- Maximum Tolerated Dose or How I'm an Idiot
- If You're On Prednisone, You NEED a medic alert br...
- Predni-Oh nooo-sone
- Into The Sticks
- I was just looking on Google for "normal xray ongo...
- Combustion
- Remembrance/Memory Candles
- The Invisibles, a new film by Pixar & Disney
- The Hip Song
- Miscarriage and Baby Loss
- The Roulette Wheel of Diagnosis
-
▼
October
(11)
Blog Roll
- Be Careful What You Pray For
- Built in Birth Control
- Holy Pee Stick, Batman!
- Leaps of Faith
- Lupus Ranting
- Not Standing Stills Disease
- Recurrent Miscarriage
- Rheumatoid Arthritis Guy
- The Healing Plate
- The Post Divorce Chronicles
- the Stirrup Queen's Completely Anal List of Blogs That Proves That She Really Missed Her Calling as a Personal Organizer
- Understanding Invisible Illness
0 comments:
Post a Comment