Hello again

[valleysangel92]

Hello there, a lot of members will probably remember me from a year or two ago, but I know there will be some new members who don't know me and it's also been a long while since I posted so I thought I'd do a kind of re-introduction.

I'm Nicola , I'm 27 and I'm from the UK. I've had symptoms of Crohn's disease since I was 15, but wasn't diagnosed until I was 19. I've had a small bowel resection, multiple oral and Iv steroids, azathioprine, mercaptopurine , infliximab and now vedolizumab.

My main symptoms are nausea, vomiting, severe pain and malnutrition. I have never been in true remission but thanks to vedolizumab I have been stable for 4 years now and although pain is definitely a major struggle still I am in a much better place than when I was first diagnosed.

In addition to Crohn's disease I have coeliac disease, asthma, cluster headaches, osteopenia, inflammatory arthritis, inappropriate sinus tachycardia and hypercalcaemia.

Unfortunately due to this mix of conditions I have been identified as extremely clinically vulnerable by the NHS /government in the UK and I have been "shielding" for most of this year. It's been a very difficult year for me and I'm sure it has for many of you too. My mobility has been getting progressively worse and I'm relying on crutches more and more, as well as wheelchairs when on longer days out (or even just getting around a supermarket ). The main aim of treatment for me at the moment is to control pain and give me quality of life.

I look forward to reconnecting with you all in the coming weeks and months and getting to know new faces. Please if anyone needs a non judgemental ear feel free to send me a message.

 

[my little penguin]

Welcome back !!
What are they using to treat your arthritis?
My kiddo has arthritis as well as crohns
Was also in a wheelchair for longer outings for most of year (they pulled humira due to surgery abd it didn’t work when they put him back on it ....)
Switched to Stelara which at lower frequency still didn’t cover his arthritis (90 mg every 8 weeks )
He was finally switched to 90 mg of Stelara every 4 weeks plus methotrexate
Made a world of difference
Crohns is in remission as well as arthritis is no longer actively flaring .
Hopefully they can find the right combo for you as well .

 

[valleysangel92]

Hi MLP glad your kiddo is doing better!

We are currently deciding what to try next, leflunomide has been broached as a potential if things get worse, which they have now, but with big reluctance.

I'm seeing my rheumatologist in the next few weeks. She's previously said she didn't want to start me on anything because she didn't think the risk was worth it but I'm at a point now where that's just not an option any more. I think she struggles sometimes seeing me as a whole, if I "just" had the arthritis I think she'd know exactly what to do, but she's struggled finding solutions for me that work for all my conditions. My joints aren't damaged yet and I've had an MRI recently that was clean but my hip and fingers are really swelling. My engagement ring has nearly got stuck a few times. I am considering requesting other opinions if I keep hitting the same brick wall. I'm having trouble walking around my own house at 27.

 

[my little penguin]

Definitely get a second opinion if they let you .
It’s a tough balance finding things for crohns /arthritis and Ds auto inflammatory condition
Due to this he is on two biologics and has been for 5 years
Ideal not at all
Each time we move the new set of specialists try to eliminate one of the biologics
Yep never goes well
So for now he does take Stelara /mtx for crohns //arthritis
Plus another biologics for auto inflammatory
Leaving one condition untreated or under treated actually made his other conditions worse .
Hope your Rheumo listens

Ds also started using light compression arthritis finger less gloves
Make world of difference on hand stiffness and pain

he also takes Celebrex (nsaids ) which is not recommended for crohns patients
But given it helps his joints and so far has not caused any Gi issues he still takes it daily
It was the third nsaid Ds tried
The other two caused diarrhea and bloody stool

fingers crossed for you

 

[GI Jane]

Sorry to hear of so many issues you have to battle. I've learned to live with pain like some annoying bad relative that just wont leave. It's amazing what your body will put up with for awhile. I was in a wheelchair for my spinal cord injury and surgery with a plate infused at C5-7. They told me I might never walk again. Arthritis in hip, shoulder and some in hands not too bad just enough to keep me up at night. It's crazy what our amazing designed bodies can put up with and still survive. We can rewrite dendrites in our brain. Push through pain and walk anyway. I had to definitely be my own advocate with my doctors at the VA Hospital. Keep your own great records with what meds worked or didn't and what the side effects were.....like noooo i can't go back on Remicade it gave me lupis.....not something I want to try again.

I cannot imagine getting around the UK in a wheelchair. When I went overseas to 6 countries including UK only for a day accessibility was hard. I just have a walking stick mostly now....wheelchair lurks in the garage saying.....go ahead......climb that latter I dare you....lol......sorry my weird humor keeps me going.

Push for something good each day to do or look forward to. Plan on your next trip. Research and make a trip book. Print out ideas. These things can keep us sane when our bodies are kicking our butt. Take care.

 

[CatLover63]

Hello, I'm new to this site and to forums in general but finding the posts very informative. Due to the pandemic, getting to see a GP face to face to have a feel of my tummy has been replaced by a 2 hour wait in the minor ailments and injuries department at my closest hospital a bus ride away.
Last time I went, I was told I probably had gastro enteritis, given antibiotics and sent on my way. I'm better off in my South London suburb than a lot of people stuck in the sticks. Nevertheless, my bouts of acid reflux at night continue, bloating and nausea and arthritic pain in my hips, shoulders, back and knees. I now avoid large supermarkets for corner shops and home delivery. Pushing a trolley is too much like hard work and takes it out of me. Queuing ? Not for me. Conserving energy is what I do these days and I no longer stress over dirty dishes or cleaning the bath. Fit people probably would not approve but that's how it is. Keep well.

 

[valleysangel92]

Hi GI Jane

I've had chronic pain since I was 12, so I've definitely learnt along the way that sometimes I can push past, but other times its better to listen to my body. I used to be very bad at knowing when to stop and would pay for it massively but I'm a lot better at it now. I have a long list of meds that haven't worked or that my GI has said no to, so treatment options are somewhat limited and I think that's a big part of the issue.

Yes accessibility is a big issue in the UK, especially in the past year, all allowances for disabled customers have been scrapped during the pandemic, including disabled parking being blocked off to be used for queuing. There is no allowance for disabled people in the que systems, and you cant borrow wheelchairs any more. I understand the need to control the pandemic but there has been absolutely no consideration for anyone with mobility issues. I haven't been going out anyway due to being at risk but I have a few friends that have been made house bound by the withdrawal of support. I hope to go to London next year (if its safe) and will be looking at getting my own wheelchair for then so I can make the most of the city and I sincerely hope accessibility will be better by then.

I've taken up painting when my body allows and can really recommend it as a way to distract yourself from the pain. Thankyou for your support.

 

[valleysangel92]

Hello, I'm new to this site and to forums in general but finding the posts very informative. Due to the pandemic, getting to see a GP face to face to have a feel of my tummy has been replaced by a 2 hour wait in the minor ailments and injuries department at my closest hospital a bus ride away.
Last time I went, I was told I probably had gastro enteritis, given antibiotics and sent on my way. I'm better off in my South London suburb than a lot of people stuck in the sticks. Nevertheless, my bouts of acid reflux at night continue, bloating and nausea and arthritic pain in my hips, shoulders, back and knees. I now avoid large supermarkets for corner shops and home delivery. Pushing a trolley is too much like hard work and takes it out of me. Queuing ? Not for me. Conserving energy is what I do these days and I no longer stress over dirty dishes or cleaning the bath. Fit people probably would not approve but that's how it is. Keep well.

Hi CatLover

I'm sorry you're having issues getting to see your GP, I know its very difficult at the moment, but they should be allowing appointments for patients with urgent needs. Unfortunately we all understand the feeling of trying to conserve energy and not being able to function quite as we used to. When you do get to speak to your GP ask them if you can have some blood tests to look at your blood count and vitamin levels. Vitamin deficiencies are a massive part of fatigue in patients with stomach and bowel issues.

 

[Jo-mom]

Hello there. So sorry to hear about what you are going through at such a young age. My son also probably had crohn's/arthritis when he was 15 but was diagnosed at 19. He also had mobility issues but Remicade has really helped him on both counts. It is really a tough time for everyone but more so with people who have mobility issues. I am glad you reached out to this forum. I don't have much to offer but we are here if you want to express whatever you are feeling without judgment and big hugs to you.

 

[valleysangel92]

Hi jo- mom

Remicade worked great for me but unfortunately I had a huge allergic reaction to it and had to come off it. I've been a member here since just after I was diagnosed and it really helped me, especially as at the time there was little to no support in the UK. Its unfortunately all too common for people to wait a long time for diagnosis, especially young people because doctors always seem to assume we're "too young" for IBD. I hope your son continues to do well and please let him know that if he ever feels he needs to reach out himself then there will be a lot of people here with similar experiences to him.

 

[CatLover63]

Hello,
What fun it is to have acid reflux (not). Spoke to a GP on the phone yesterday and was prescribed Omeprazole 20mg for a month to be taken before breakfast and at night. Thankful it's not a suppository but a small capsule. Read the list of side effects, more fun, before deciding to trust the doctor and start the course. Not very keen on doctors as it is so gave myself a pat on the back.
Having to buy an acid reflux, GERD triangular pillow on Amazon to sleep propped up like the Bride of Frankenstein. At least Friends is on t.v.

 

[GI Jane]

Wish we were closer I'd give you one of my wheelchairs. I have a power assist one which I loved. I hated people pushing me so removed the handles and have these power assisted wheels when needed but regular when not, it was a God send at the time.....yep I'm a control freak. lol

The one thing that helps with my joint pain is a really hot bath with 1 to 1/2 cup of each Epsom salt and baking soda and lavender drops for good measure. Sometimes 1 cup baking soda and 2 cups Epsom salt when bad but ya lotion afterwards. It does dry out skin a bit but when nothing else works for me this always helps for a few hours.

Baking soda in water helps with my acid reflux but you have to sip not to tasty but works when I run out of my GERD medication. When it's bad I only have the Lipton noodles soup, in the box kind, before bed with a couple saltine crackers. It's so less heavy on stomach and way less issues.

 

[CatLover63]

Hello,
It's a misty, grey day here in London and I've started a month's course of Omeprazole 20mg, one capsule with water before breakfast every morning. It's supposed to heal a slightly damaged gullet. As usual, just a phone consultation, no examination.
YouTube videos about acid reflux, what not eat and treatments and a triangular GERD pillow ordered on Amazon. I have salts at home but they're just for the bath and to soak tired feet. I live with two flights of stairs and limited space so I used a walking stick in previous years when my leg was weak.
I wear a wrap around support on my ankle which helps me to walk when I go out. I've got permanent pins and needles and heat in my lower leg which can drive me up the wall but don't want to take medications which make me groggy. I hope you are keeping well and mentally strong in these weird times of Covid. Take care.

 

[GI Jane]

You are amazing to be able to swallow a triangle pill, with swelling I can't swallow that shape really hardly any pills. I have to have a bite of food and very carefully take even small pills. Chewable pills are my friend. I made sure when I moved to get a one story home, which is really hard to find here on the West Coast for some reason. I made a walking stick once. Carved in agates and stones and such it was fun. Always looking for interesting shaped sticks when walking. Ya take baclofen occasionally to try to relax my muscles but ya makes me groggy. I don't have feeling in half of one foot because of surgery and spine issues so ya fun walking. Take care.

 

[CatLover63]

Hello,
I can't swallow large tablets either. They are very small pills luckily, 1 cm long and with a smooth coating. The support pillow is a big triangle shape with a washable cover. My two cats will be sitting on it in no time and covering it in cat hair. I'm sure I'm allergic to the fur and if I get a play scratch, my skin puffs up like uncooked chicken. I wouldn't give them up as they keep me company.
Making your own walking stick sounds very arty and creative. If I had an expensive one,
it would probably "go missing" on public transport. Muscle cramps and numbness as well as chronic back and leg pain stop me from working so I get bored. A bit of a couch potato nowadays meaning lazy. There is a beautiful park near where I live called Crystal Palace Park open every day. It has a lake and concrete dinosaurs and was opened by Queen Victoria. Always full of people walking or just enjoying some fresh air.
Enjoy your day.

 

[GI Jane]

Over 200 acres, life size dinosaurs, and a huge maze what an amazing park. If travel can ever happen safely again I will so go there. My next trip is England, Scotland, Ireland and Wales. I did the 7 countries tour with Rick Steves and really enjoyed that adventure. Hoping to take my sister and mom on this adventure but we shall see.....need something to plan for and I love trip planning. I always thought someone from this group should become a tour guide for that area......that way we would know where all the bathrooms are lol.

 

[CatLover63]

Over 200 acres, life size dinosaurs, and a huge maze what an amazing park. If travel can ever happen safely again I will so go there. My next trip is England, Scotland, Ireland and Wales. I did the 7 countries tour with Rick Steves and really enjoyed that adventure. Hoping to take my sister and mom on this adventure but we shall see.....need something to plan for and I love trip planning. I always thought someone from this group should become a tour guide for that area......that way we would know where all the bathrooms are lol.

Hello,
I did some exotic travel when I was younger and fitter like Luxor in Egypt and Marrakesh in Morocco. Very hot, amazing scenery and very friendly and welcoming French speaking people. I used to sky in the Italian Alps and went rally driving in Southern Ireland. I think planning a trip is the best way to stay positive. I'm an "oldie now" so a cruise down the Nile will probably suit me better. Since lockdown, English people have been looking for fresh air at the seaside but they closed all the public toilets at one point with disastrous results. Now everyone knows how it feels. Take care.

 

[GI Jane]

I have so wanted to go to Israel and Egypt. My brother in law is Jewish and really hope I can tag along with them when they go, hopefully in not to distant future. Congrats on the first person getting the vaccination and at 90 something, brave! Ya one of the toilets closed at one of the beaches I go to but not the other one so sticking to that one for awhile. The government loves to "throw the baby out with the bathwater" as my mom says. So now people squatting outside making things worse.....sigh.....hopefully over with soon. I've been so drawn to going back to my roots. My grandmother always said we were "lace curtain Irish" not quite sure what that meant. DNA says Dad Scottish and English and Mother Irish and Swedish so fun finding things out of Ancestry. I have a phobia of cruise ships after so many issues. I day trip yea I could handle but hate the thought of being trapped on a boat. Yep probably silly but that's me.

 

[Scipio]

I have so wanted to go to Israel and Egypt. My brother in law is Jewish and really hope I can tag along with them when they go, hopefully in not to distant future. Congrats on the first person getting the vaccination and at 90 something, brave! Ya one of the toilets closed at one of the beaches I go to but not the other one so sticking to that one for awhile. The government loves to "throw the baby out with the bathwater" as my mom says. So now people squatting outside making things worse.....sigh.....hopefully over with soon. I've been so drawn to going back to my roots. My grandmother always said we were "lace curtain Irish" not quite sure what that meant. DNA says Dad Scottish and English and Mother Irish and Swedish so fun finding things out of Ancestry. I have a phobia of cruise ships after so many issues. I day trip yea I could handle but hate the thought of being trapped on a boat. Yep probably silly but that's me.

Lace cutain Irish:
https://en.wikipedia.org/wiki/Lace_...in Irish" were,Neither term was complimentary.

 

[CatLover63]

I have so wanted to go to Israel and Egypt. My brother in law is Jewish and really hope I can tag along with them when they go, hopefully in not to distant future. Congrats on the first person getting the vaccination and at 90 something, brave! Ya one of the toilets closed at one of the beaches I go to but not the other one so sticking to that one for awhile. The government loves to "throw the baby out with the bathwater" as my mom says. So now people squatting outside making things worse.....sigh.....hopefully over with soon. I've been so drawn to going back to my roots. My grandmother always said we were "lace curtain Irish" not quite sure what that meant. DNA says Dad Scottish and English and Mother Irish and Swedish so fun finding things out of Ancestry. I have a phobia of cruise ships after so many issues. I day trip yea I could handle but hate the thought of being trapped on a boat. Yep probably silly but that's me.

Hello, I'm not 90, just 30+26 like the fridge magnets on my fridge. Maths has never been my forte so I may knock off 10 years now and then. The boats on the Nile are like wooden sail boats. I'm claustophobic nowadays and have vertigo due to balance problems. I'll stick to home for now.
Christmas is creeping up like a very loud and annoying relative. Buying tins of Quality Street chocolates for relatives online. Always a favourite. If carrots are good enough for Rudolf, then good enough for me.
Boiled, mashed, yum, yum in my tum.

 

[valleysangel92]

So I had my rheumatology follow up on Monday. I'm getting a referral to occupational therapy to sort out some support/compression gloves for my hands as she (finally) agrees they're inflamed. There's also a swelling/lump on my hip which she wants looked into, so I'm being sent for an ultrasound to get it looked into, she thinks its probably a muscle knot or a swollen tendon but wants to make sure. Its unlikely to be anything sinister but always better to check. We also did some bloods as I haven't had any since August.

If the ultrasound comes back clean she wants me to try a specialist rheumatology physio as apparently the last one I saw wasn't a specialist. My strength has gone down compared to before but my range of movement is relatively good. She thinks I need stretches but when I last went to physio they didn't think stretches were appropriate for me due to the level of my pain so we focused on building strength through exercise instead which worked much better for me, my tolerance was getting really good until this current flare up. Under the current circumstances getting to physio appointments will be basically impossible for me (not allowed to use public transport, hospital is too far to use taxis frequently) so she say's I can do video appointments. If it comes to it I'll give it a try, she seems to think physio solves everything though and as I've already tried it multiple times I'm not convinced.

At the moment GP appointments are very hard to get hold of, they are mainly only seeing patients in person for emergencies, but after the ultrasound and after things have calmed down a little I think I'll see if I can get in with one of the GPs for a chat and see what other options they would be able to suggest.

In the mean time I need to keep on the pain killers, use anti-inflammatory gels and keep using heat and ice.

Crohn's wise I just did my 5th Vedolizumab injection and I am pleased to say its going well, I'm only having some mild symptoms the day before injections rather than full blown flares like I had before infusions, the injections are easy to use and I'm getting more confident each time. Delivery has been really smooth and I've got enough until the end of January now so no stress over Christmas. I'm still getting pain some days but we do think I have adhesions so that's to be expected. I'm eating well most of the time and nausea is well controlled.

 

[Jo-mom]

@valleysangel92 - I'm glad your crohn's issues are better. As for the other part, it sounds painful. My son also has arthritis and physio did help him immensely but it really has to be the right physiotherapist, as some of them are not all that great. Compression items are great so hopefully that will bring some relief. This is a challenging time for sure. Of course heating pads and epsom salt baths are helpful, although you probably know this already.

I have carpel tunnel syndrome and it gets pretty bad. Although this is nothing like you have, I know when I sleep with compression gloves and a brace, it really helps. I do hope you find something to feel better.... Hugs.

 

[valleysangel92]

@Jo-mom thankyou, I've had issues with my hip for years now but this is definitely the longest flare up with no break and it's getting worse the longer it goes on. My heat pad is my best friend and is essentially glued to me! I already have some compression gloves that help a little but the rheumatologist says they can get me better ones so I'm hopeful for that. As for physio, my last physio was the best I've had, he did things differently to everyone else but he was the first to really understand that I have multiple issues and there are certain things I just can't do like stretches relying on the abdominal muscles (far too painful) or going for long walks where I live (no bathrooms). We got me on a pedal bike and it's honestly the best thing a physio has ever done for me, I got up to an hour a day on it before this flare up. All the other physios have just got stumped when they realise it's not just my hip we have to consider. This is the first time I've had a lump come up though so we do think something else is going on, and we've always thought there's some sort of ligament thing going on so that would make a lot of sense.

 

[GI Jane]

Lace cutain Irish:
https://en.wikipedia.org/wiki/Lace_...in Irish" were,Neither term was complimentary.

Ya thinking my great grandfather made that up then. He was young 14ish and became a servant to a couple on the boat coming over to America. He even took their last name, so can't research our genealogy from there unfortunately. Always some road blocks when researching Ancestry. Oh well it still makes me smile when thinking of my grandma saying that we were lace curtain Irish. I have a doily from her, always thought it had to do with that, didn't bother researching that one yet so thanks. All part of our colorful past.

 

[valleysangel92]

Just thought I'd add an update as I haven't in a while..

My arthritis is much the same, I have been using hand splints and a knee splint consistently which has helped, unfortunately we had to postpone the ultrasound on my hip as they couldn't do it at my local hospital (I was told they could) so I would have had to go to the bigger hospital which just wasn't possible right now. I'm still strongly advised against public transport and there's no way I can afford a taxi that far.

Unfortunately I appear to be having quite a big flare up of my Crohn's disease. I have had some really severe stomach pain going on for almost two months now, my appetite is really low, I'm struggling with mouth ulcers which is always a sign something isn't right and my nausea is harder to control. I have spoken to both my GP and my IBD nurse. I am going to do some testing and get a phone appointment with my GI (they are still trying to avoid having immune suppressed patients in clinic here). I am hoping I will just need to do steroids for a month or so to get things back on an even footing. Unfortunately I am allergic to anti-TNF medications (anaphylaxis) so there are only a few valid treatment options available and I would really rather save them for the future.

While I am waiting to see what's next I am sticking to a mostly bland diet with low fibre (which is very tricky on a gluten free diet as everything has extra fibre in it as coeliacs usually lack fibre) and doing my best to stay hydrated. It has been very hot here in the UK the last week, making it even harder to keep on top of fluid intake. The heat we have here is very humid and most houses don't have air con which makes it all very uncomfortable to deal with. I am ordering some specialist vitamin rich, calorie dense milkshakes to help maintain my hydration and my weight, loosing large amounts of weight very quickly has always been a problem for me in the past and I am keen to mitigate this as much as I can. In the meantime I am doing my best to keep on top of the pain, and listening to my body , I am giving myself grace and not over doing things or feeling guilty if I need to spend a day in bed.

 

[my little penguin]

Did you have anaphylaxis to more than one anti tnf?
The reason I ask
My kiddo had anaphylaxis to anakinra (kineret IL-1 blocker ) . But has been able to take ilaris (Canakinumab which is also IL-1) without any issues for years
Similarly he is allergic to remicade (anti tnf ) but was able to take humira (anti tnf ) for many years .

The cause of the allergic reaction/ anaphylaxis typically is related to either the protein structure used to add the anti tnf to or the polysorbate /glycogen solution used in the iv /syringe

In the case of remicade murine (mouse ) protein is used and has a very high rate of reaction even among folks who don’t usually react to stuff
Humira is humanized but hamster I believe
There are antibodies test which can be taken before taking the med to determine if you will react

Anakinra protein is E. coli based so lots of reactions there
Ds got hives with every single daily injection
But nothing with ilaris

My point is you can have anaphylaxis to a drug
But the protein and solution are typically the issue not what the drug blocks

Please see a board certified allergist
They can explain it far better
The allergist help us a lot for my son
He has reacted /anaphylaxis to multiple drugs /foods not just biologics and having an allergist opinion has made a huge difference on what my child can try safely abd what is definitely off limits (contrast dye is a no go under any circumstance)

 

[valleysangel92]

Did you have anaphylaxis to more than one anti tnf?
The reason I ask
My kiddo had anaphylaxis to anakinra (kineret IL-1 blocker ) . But has been able to take ilaris (Canakinumab which is also IL-1) without any issues for years
Similarly he is allergic to remicade (anti tnf ) but was able to take humira (anti tnf ) for many years .

The cause of the allergic reaction/ anaphylaxis typically is related to either the protein structure used to add the anti tnf to or the polysorbate /glycogen solution used in the iv /syringe

In the case of remicade murine (mouse ) protein is used and has a very high rate of reaction even among folks who don’t usually react to stuff
Humira is humanized but hamster I believe
There are antibodies test which can be taken before taking the med to determine if you will react

Anakinra protein is E. coli based so lots of reactions there
Ds got hives with every single daily injection
But nothing with ilaris

My point is you can have anaphylaxis to a drug
But the protein and solution are typically the issue not what the drug blocks

I have only been given infliximab (inflectra) but because I already have issues with asthma and some issues with my heart beat plus I seem to have developed a sudden tendancy to allergies (I developed allergies to 3 drugs in one year ) my consultant and main ibd nurses have said they would be extremely reluctant with the idea of trialling humira. This was also discussed at an MDT meeting and they recommend going straight to Vedo and only trying humira if we were extremely desperate. They have seen a few cases of patients with allergic tendencies having allergies to more than one of the anti tnfs but it obviously doesn't happen to everyone. Because the Vedo has largely worked for my Crohn's this hasn't really been something I've felt needed to be challenged as the risk outweighed the benefit but obviously as treatment options become more restricted it's something I'm thinking more about.

Access to new biologics is some what slower in the UK. I just had a look and the ones you mentioned are not currently used for Crohn's disease here, only for arthritis and one is advised against in patients with asthma ( mine is quite unstable). In the UK using medication off label is a really long, drawn out process that only really happens in specific circumstances.

At the moment the most likely treatment option for me if we do have to change is stelera (ustekinumab ). I have been frequently reassured that this is a very viable drug for me and if the Vedo stops working funding should be easy to access. I am just aware that the longer I stay on Vedo the more treatments there will be available when I do need to stop it.

I definitely understand where you're coming from

 

[my little penguin]

Completely understand
My kiddo also has asthma and and and…. Medically complicated to say the least
We are having insurance issues in the US for Stelara even though he has been on it for 4 years so
I understand limited options
Just please see an allergist especially if you developed 3 drug allergies in a year
Sometimes there is something else going on
That increases the bodies likelihood to just react
But if said thing is under control then your less likely to react

Think full bucket theory
When a person has anaphylaxis they know the allergy bucket is full of water
So minor things the body wouldn’t react to
Suddenly reacts until the water lowers in the bucket

For my child
If his other systems are pressed
Asthma
Allergies
Arthritis
Crohns
Etc
Then they domino and suddenly all act up

We make sure his allergies are under the best control possible
Which meant allergy shots for years

 

[valleysangel92]

Completely understand
My kiddo also has asthma and and and…. Medically complicated to say the least
We are having insurance issues in the US for Stelara even though he has been on it for 4 years so
I understand limited options
Just please see an allergist especially if you developed 3 drug allergies in a year
Sometimes there is something else going on
That increases the bodies likelihood to just react
But if said thing is under control then your less likely to react

Think full bucket theory
When a person has anaphylaxis they know the allergy bucket is full of water
So minor things the body wouldn’t react to
Suddenly reacts until the water lowers in the bucket

For my child
If his other systems are pressed
Asthma
Allergies
Arthritis
Crohns
Etc
Then they domino and suddenly all act up

We make sure his allergies are under the best control possible
Which meant allergy shots for years

It must be so hard having to fight insurance to get what your kiddo needs. Makes me ever more grateful for our NHS.

Thankyou I will ask for a referral. I think in the UK GPs can do some allergy testing etc so that might be the place to ask first as specialist appointments are taking a really long time with covid (understandably).

 

[valleysangel92]

Hello everybody

Just thought I'd update as it's been a while

Unfortunately the flare continued and eventually got worse. I started to struggle to eat and drink, began to loose weight and the pain became increasingly hard to manage.

I contacted my GP (as I still had a few weeks before my gi appointment) and started a course of prednisolone.

I have now seen my GI too and we extended the steroids. I'm now on 20mg daily decreasing by 5 mg per week. I am doing much better than I was pre-steroids but I'm certainly not back to base line.

Waiting lists for tests etc are extremely long in the UK at the moment, so it made more sense to treat the flare and see what happens rather than wait for testing.

If I come off the steroids and stay stable then ok, we can stay as we are for now.

If I come off and flare again, or if I have repeated flares over the next few months or so then we are going to look at changing to stelera. This would probably mean needing further investigations as there is a strict process for funding, so could be a long process.

We all still feel that the vedolizumab is still making some difference to me. I definitely feel better after injections and I have managed to control this flare at home. Before Vedo a flare like this would have had me hospitalised months ago, so we are not ready to give up on it yet.

On a side note, I gave been enjoying the small respite from my hip and cluster headaches. Yay steroids.