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 Jan. Sorry I didn't reply last week. It's been a long healing process that has its ups and downs. I rested a lot and focused on eating well. I hope you are doing well - especially starting a new week.
Sorry to hear the HS is bad currently. Did they offer you anything to help with it? I seem to remember when I was working at the dermatologist's office there was a biologic medication that helped. Are you staying away from them? Glad to hear the rheumatologist visit was good. I hope the "blah" feeling lifts and you have a better week.
It's been a busy weekend. I was cleaning and moving a little bit more than I probably should have been. I can't stand not doing anything when there are chores and meals and other things. I have streamlined my cleaning process and made it easier with floor cleaner and dusting so I wasn't feeling too bad after cleaning for an hour or so.
I have started writing again, though I haven't picked up my book to read much since surgery. Maybe today. I have begun to manage the dogs. They need brushing, ear cleaning and paw moisturizing so did a little of that yesterday. I probably did a little too much as last night my mid back (thoracic) began spasming again as it had before surgery. I took some muscle relaxants and went to bed, trying not to move too much. It helped. This morning I am not spasming but still sore.
Sorry to hear that Nick is having side effects. I have been on anti-depressants throughout my life; that is one side effect I couldn't deal with. I need to sleep, and if it isn't letting me rest, it's not the right one for me. I hope he can call in or mention it in a message to his practitioner before the 7-month visit.
Have you got a mouth rinse to help with the ulcers you have? I remember my rheumy mentioning it when I had them. It's quite painful. How are you managing? I wonder - have you tried Epsom salt baths to help with the HS? Or has your provider mentioned something else to help? I feel for you. How are you managing otherwise?
Yes, the weather can get to scorching heights here in Arizona. So sorry you've been dealing with cold, rainy weather. That can be awful for those of us with chronic illnesses.
I hope this week starts well, and that your appt on May 8th is fruitful. I can't see how if you missed some OT visits they wouldn't make them up.
Sending warmth and healing over the miles. Warmly - Rebecca (team member)Hello Rebecca
No problem, yes it’s going to take time to recover and rest as much as you can.
The HS is a bit better then it was at the moment which is good but I am in a flare started yesterday so my mood is bad.
I have antiseptic I am using.
I understand that feeling, but it’s a big operation you had so probably more rest with small amounts of moving.
What muscle relaxers do you have? I am glad the spasming is not as bad,
Nick is bothered that if he tells the GP he will have to come off them so he isn’t sure about telling him, plus it’s always a different Gp he talks too who never knows him.
Yes I use a spray and a mouth wash they are horrible and I find salt water is good.
We have no bath just a shower as the council took the bath out to put the shower in as I couldn’t get in the bath.
It’s a very small bathroom but it’s a walk in shower so no climbing in which was a struggle.
Our weather is the same as last time we talked terrible, it’s 10 degrees today foggy, chilly and rainy and 1st of May.
The 8th is the OT appointment at 11.15
No it’s not like if you miss appointments you can make them up, other areas have accesss all the time to hydro but up here like everything no support group nothing and no pool, I put a post on the NASS site that the uk AS sight asking if anyone that lives in Newcastle or Northumberland would like to meet up or chat online but no one replied, there must be people up here but no one gets in contact so that doesn’t help.
How can you start anything up when no one gets in touch grrr.
I am doing more colouring it helps with the flare takes my mind away which is definitely a good thing.
Thank you dear friend, sending you big caring hugs across the ocean to you.
I wish there was a way of us been able to talk privately that would be good.
Look after yourself Rebecca and take good care of 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)
