Family history
Hi everyone
I know we all have our different views on biology medicine and would never tell anyone or expect anyone to tell me what to do.
I live in the uk and our health system is under a lot of pressure right now.
Anyway this is part of the reason why I am unsure about adalimumab, as my rheumatologist keeps pushing me to take it as I feel I have no control over my life right now and effecting my mental health bad.
I had lots of multiple chest infections/ skin infections/ fungal infection’s/ vision issues,I was on Infliximab infusions I only had two and the second the rheumatologist at the other hospital told me to come off. This was last June, I still get the vision issues and optician doesn’t know why.
I have fibromyalgia/ chronic pain/ diverticulitis disease and tinnitus and alopecia which was from fathers side.
My family history- is
My family history father had heart attack age 61 he had atherosclerosis in his fifties and drowned.
my mother died of breast cancer at 51. A cousin of father’s had MS and died in her forties.
my sister died age 55 from Vasculitis inflammation of the blood,she had it at 50. A cousin that is left from my father’s side has been diagnosed with leukaemia.
So as you can see I don’t know what to do.
Trying to get an appointment at the Gp is very difficult and it’s mostly done online if you can get through.
Any advice? I know you can’t give medical advice but if anyone with a similar history as mine on this drug.
Thank you.
Thank you
Jan
Hello Rebecca
That’s ok bless you,I have been busy too, I have been doing word searches and puzzles and your right it helps the brain to concentrate more.
Today it’s been a nice sunny day so have been taking photos in the garden.
Your Valentine’s Day sounded lovely glad you had a lovely time and enjoyed yourselves.
We had a nice dinner and a little cheese cake for pudding.
We don’t usually have pudding.
Hope you enjoy your Sunday sounds fun.
I am so glad you had a good second opinion I was wondering how you got on, it sounds like your consultant is a wonderful man and very able to do your surgery and you know your in good hands, I hope it all goes well please let me know when your able too.
I have bulging discs I was told but not near a nerve as yet.
Will your operation take a long time?
February so far how I am the same apart from the spots which have got bigger and itchy especially in certain areas but I am using tea tree oil on the ones on my arms and legs and a cream I have for the other areas it’s a CBD cream and ok to use there.
Painkillers are helping a bit my back, but I can’t bend down without having nick to help me up and having the stair lift a lot, but I am walking in the garden and in the house trying to keep mobile as possible.
I have my first hydrotherapy on Monday I hope it goes well will let you know.
My weight has gone up a lot though as not able to go out walking hardly.
Sending you warm hugs to you Rebecca
Please take care.hello Rebecca, bless her glad she helped you so much.so glad you have a wonderful daughter, it would be and will take time but you will get there.
Can you take painkillers for it or not like paracetamol?
What are triptans and CGRP, horrible migraines are I hope this all gets better for you very soon.
I had the chest x ray yesterday and it will take 7 days to hear will let you know when I know.
When do you know about your x ray?
I haven’t had one of those as yet but glad you had no side effects from it.
We just don’t see eye to eye on things but I see how it goes on monday.
The last one flared up the AS but have to have them so nothing I can do, does yours flare up your AS?
It’s horrible our weather here at the moment, tonight we have frost I can’t believe it as it’s nearly May, had hailstones the other day, it’s rain and more rain, and cold as well have heating on never known the weather like this.
Your weather is so hot there I couldn’t cope with the heat but the cold here is bad as well, just need some warm weather soon.
The OT was poorly today but hospital didn’t let me know, I rang and found that out, next appointment is in May.
I am doing colouring which does help my brain and takes my mind of things.
Look after yourself and keep resting and take it easy.
Sending you big hugs across to you from me to you.
Take care
JanHello Rebecca
How are you doing ? How is the dizziness and lightheaded feeling?
I had the chest x ray it was normal so still no reason for the coughing.
I haven’t had my Covid vaccine because of the coughing so seeing how that goes,right now I have four abscesses down below, and the HS on my boobs, stomach etc so trying to deal with that, the rheumatologist went ok and said to see me in 7 months a long time.
I have ulcers as well in my mouth so just feeling Blah.
The weather is terrible it’s just raining every day and so chilly i am walking round the house as too cold to go outside.
Can’t believe it’s nearly May.
I have my appointment on the phone with Rosie OT on the 8th May, I hope I can have more Hydro but the consultant said usually only six so we see what she says.
Nick is having side effects from his anti depressant meds but doesn’t want to come of them, he didn’t mention it at the last review and next one months away, one of the side affects is lack of sleep so he is fed up of that, some nights he has good sleep but not often.
How is the weather there?
Always thinking of you, look after yourself
Sending big hugs across the ocean to you.
Jan
,
We appreciate you reaching out and sharing your concerns.
I'm saddened to hear of the heartbreaking losses in your family.
That being said, I can understand your concerns.
It's important to note that each individual's history is different and their reaction to treatment can certainly vary. However, I do hope others will chime in here with their personal experiences with adalimumab.
In the meantime, I thought I'd share a few articles that may provide some helpful information: https://axialspondyloarthritis.net/living/bi-weekly-injections and https://axialspondyloarthritis.net/off-label-biologics
I wish you all the best as you search for the treatment plan that is best for you.
Please keep us updated. Warmly, Doreen (Team Member)hello Doreen thank you for your message.
Yes the rheumatologist just doesn’t listen to what I say, I have tried explaining but it goes in one ear and out the other.
Thank you for the link very helpful.
Take care Doreen
Jan,
That is so frustrating.
Unfortunately, we hear this too often.
I'm including a link that offers some helpful tips on how to prepare for a rheumatologist appointment: https://axialspondyloarthritis.net/living/rheumatologist-preparation
I wish you all the best, Doreen (Team Member)
Hi
- sending you strength across the long distance and hoping you begin to feel better. You are dealing with so much. And, taking a medication that you've had an adverse reaction to is frightening, to say the least. Have you discussed a different biologic or is your physician adamant you try infliximab infusions?
It sounds as if being ill or having illness where you are is compounded immeasurably by a very stressed-out system. I hope that you find a regimen to finally help reduce these problematic symptoms, and that your health only gets better.
Thinking of you often - Warmly - Rebecca (community moderator)hello Rebecca
How are you doing? Did I send you a message? I can’t remember, my head seems to full of fluff right now.
Did you have a lovely Valentine’s Day? We had a nice one.
Let me know if I replied to you the other week.
Take care
JanHello! Sorry I didn't jump on sooner. I have been keeping busy with things. I wanted to quickly hop on and write you a message. Our Valentine's Day was nice. It was quiet and relaxing. We stayed in and I made soup and salad for dinner, and we sat and watched a movie. This coming Sunday maybe we'll do something a little more exciting or extravagant. Maybe ... LOL.
The second opinion I had about my lower spine with my past surgeon went well. It was great chatting with him. He is such a personable and understanding physician. I explained why I wanted a second opinion, and we then went over imaging results from my most recent CT and MRI. He stated he would absolutely agree to surgery to help manage this fragile spine I have. I was so appreciative he is still available to me even though it is 3 hours away. I chose surgery. PT would only irritate and aggravate and put me in a flare. I've been dealing with this for years; it is only getting worse. Now a fracture and a slipped vertebrae (spondylolistheses) are seen with radiation of pain throughout hips and legs. I've already had 2 surgeries in this area in the past 5-6 years to help remove the bulging discs and painful squishing of nerve endings. So to stabilize this weak spine, I have scheduled fusion the beginning of April. He will be stabilizing the pars defect (fracture) below the fusion as well. I am not worried. With him, I'm in the best hands.
How have you been lately? How has your February been going? I certainly hope the rashes, adverse effects, and pain are all easing. I would love to hear an update from you and what has been occupying your time. Sending hugs to you on this chilly morning. Warmly - Rebecca (team member)
