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
Hi
- I've not heard from you in a bit and am wondering how you are feeling. I know it's been rough for you and am sending thoughts of healing and wellness your way. I hope the weather has been enjoyable and you've gotten out into the sunlight. From the other side of the pond - Rebecca (team member) Dear Rebecca
I hope your operation on Wednesday goes well and you recover quickly.
Will be thinking of you so much.
Please take good care.
Sending you warm caring hugs across to you.
Your friend
Jan
Dear Rebecca,I hope your starting to slowly recover, know I am thinking of you always and wishing you well.
I hope the operation went well.
I had to go to the Gp yesterday pain upper and lower back and across my stomach last few days worse and feeling sick, said it looks like a kidney infection but I could have kidney stones where I was pointing too, so on antibiotics from last night, said if the pain and I keep throwing up then I need a scan at A&E ,you know how bad our NHS is, the hospital that’s my nearest are back and forward with patients the ambulances non stop,and queuing to get in hospital, at docs yesterday evening,everyone coughing and a woman sat next to me with a load of sick and I had to do a wee sample in the toilet she used and I wiped it as best as I could.
Look after yourself
Take care
Sending warm, caring hugs across to you
Your friend 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.Thanks for offering up ideas to help support my energy. It has been hard to come back after surgery. I feel like sleeping 23 out of 24 hours. I know that works against me though and makes it even more difficult to get going. I try to get 8 hours and then get up and move or do chores. I have started walking the dogs again, though I've returned to using an orthopedic boot on my ankle replacement foot and ankle. The swelling is going down while using it. So that's a plus.
I'm not sure how you manage in such a cold weather area. I grew up in Buffalo, NY where it was frigidly cold in the winter with never-ending cold rainy days in the spring. I went to college about 2 hours away and the weather wasn't any better. Before diagnosis, I struggled with the weather and was continuously feeling horrible. So glad we decided to move west. I feel better when warmer and in dry heat. Not sure I'd do well in places like Florida where it is muggy and warm.
Lucy has bounced back and is very energetic. She has so much fear with medical staff - I can't blame her. I can just be there for her to ease her anxiety.
It is warm and clouds are building up today - probably a storm coming in. I'm not feeling too bad yet. But any change in atmospheric pressure is like a bowling ball hitting me. I will nap later which helps. I've not done any other activities such as puzzles or the lot, seeing I have just enough energy for chores. I'm sure I will eventually get back some energy. For now, just healing.
Sending you caring hugs and thoughts of healing - Sounds like you are doing the best you can with what you have available to you. Rebecca (team member)Hello Rebecca
You’re very welcome, maybe they could help, if you do try them let me know.
It will take time but you’re doing really well that’s what I think.I don’t sleep that well I find it hard to switch off so I am shattered most of the time as well, I can’t nap I never have and I have tried it doesn’t work, I can be so sleep deprived and still can’t nap.
Take it as easy as you can when walking your dogs.
I am glad the swelling is going down that’s good news.Northumberland is a lovely place to live but it’s very cold.
I am not from Northumberland I lived about 2 hours away and it was warmer but when I moved here with my daughter in 1996 I did notice a difference but now used to it, Nick though is from Sussex down south and took him years to acclimatise here.
This year though has been the worst, we haven’t even had a summer we had a few weeks one day sunny and next windy,right now it’s so windy and tomorrow it’s 67 MPH crazy even with the sun it’s still been so windy.
I am struggling with this weather as soon it will be autumn and the winter affects me badly as well.
Warmer weather really helps and boosts my vitamin D as I have low vitamin D I take vitamin D supplements but not sure they help.I am glad Lucy is getting better bless her she has a loving family and that’s what she needs she is lucky to have you.
I hope you don’t have a storm, we have had some bad storms over the years.
atmospheric pressure does effect me too, I have noticed it more recently.
Your doing all the right things and rest and taking it easy is the best way, you will slowly get back to what you were doing.
I am doing what I can do as every day is different I never know what to expect it’s not easy is it.
Sending you warm caring, healing hugs.
Take care
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)
