Hello all

[valleysangel92]

Hey guys,

So I thought it was about time for an update on how things are going with me. As some of you will know, I have had quite a hard time finding a treatment that works for me which I don't react to in some weird way. I have tried Pentasa, Prednisolone, Budesonide, Azathioprine, Mercaptopurine , EEN, Inflectra and surgery, and I've either not responded or been allergic.

I started on Entyvio (Vedolizumab) in October, and had my 6th infusion a week ago. I must admit it was a slow starter and to be honest I was a bit dubious about how effective it was actually going to be, but I think it's actually really starting to work.

I am getting a good reduction in pain, I have a decent appetite and I am relying less on pain meds and anti-sickness. I have gained, and maintained weight and I am starting to feel stronger in myself. I still have a way to go, as there are still weeks where I can't leave the house and as I get closer to each infusion the pain becomes more severe and I begin to loose appetite. Its possible that this will get better after a few more infusions but it might be that I need to have my doses brought closer together, which my IBD nurse has informed me is a possibility.

In the UK we have a protocol where after 5 infusions you should be reviewed by a consultant before you have any more treatments, so on Wednesday I had an appointment with a consultant I've never met before (mine is so popular he didn't have any slots until May) but he was a nice enough guy and said my blood work is looking excellent and he seemed really pleased with how things are improving. He said that he is going to recommend I stay on Entyvio for the foreseeable future but they may look into a less agressive maintenance therapy in a few years time. I'm happy with this as I know my GI's intention has always been for me to stay on Entyvio for at least 2-3 years provided it keeps me stable. Things are looking so good that I don't need such regular follow up now, so I can be seen by my IBD nurse in about 6 months. This is longer than my team would usually leave it, but I have the nurse's email and my GI's direct number so I know what to do if things crop up in the mean time. The good thing is that my infusions mean i get seen regularly anyway, and get my bloods done at least every 8 weeks. If I have any issues the infusion nurse usually gets my IBD nurse to have a chat with me there and then, so I won't be slipping through the net like I have on previous occasions.


I've still been getting a lot of problems with my joints, sometimes to the point where I can't walk at all because of the sheer amount of pain, so my pain meds have been altered to allow me to have a more regular painkiller (I always felt morpine was a bit extreme for joint pain unless it made it hard to walk etc). I have been referred to a rheumy now, and am looking at about a 12 week wait but it may turn out to be longer than that as rheumy appointments are like gold dust here.

As some of you will know, I had quite substantial surgery last September to realign my lower jaw, which included breaking my jaw and resetting it. This is healing well but is still painful some days. I have a constant numbness/ altered sensation on my left side, with occasional electric shock type pain. As everything is still settling we cant tell how long this will last, but it may be permanent.

On another note, it appears I have fractured one of the small bones in my foot, it had been painful to walk on and fairly swollen for a little while but I didn't realise how serious it was until I noticed I couldn't straighten my toes and finally went to the doctors. It turns out I've been walking around on a broken foot for around 2 and a half weeks without knowing, and the strong meds I take for everything else have been masking the problem. Go me :dusty: :ybatty:

I hope everyone is keeping well and I am hoping that as things get calmer for me I'll be on the forum more often, I'm missing you all.

 

[ronroush7]

I am glad you are doing well on the Entyvio. Wishing you the best. I am sorry that it takes so long to see a rheumatologist. Hope your foot heals quickly.

 

[Layla]

So happy so seem to have finally found something that works! Long may it stay that way, and about time too.:dance:
It is also suppposed to work for you joints? If so I hope that kicks in at some point too.

I'm failing Remicade atm which is a pity as it does seem to be working for my joints, typical isn't it!

 

[eleanor_rigby]

I am glad the entyvio has improved your Crohn's. I know Maya142 said to me entyvio has exacerbated her daughters joint pain/problems

 

[Maya142]

My daughter is on Entyvio and has had a lot of issues with joint pain. She does have AS (and has had it for many years), but her joint pain has gotten MUCH worse since she started Entyvio. She had swollen and painful knees, painful hips, SI joints, heels, elbows, fingers and jaw.

She did have what seemed to be a mild allergic reaction after the second infusion (itchy rash, 24 hours later).

She has had two infusions and we are trying to figure out whether to proceed with the third, since her joint pain has gotten so much worse.
She is also on another biologic for her AS (that does not treat Crohn's). Her options are pretty limited at this point.

Her gut seems to be a little bit better on Entyvio, but it's hard to tell since she's just had two infusions.

Really hope you are able to get in with a rheumatologist soon, valleysangel92! Glad your IBD is at least better.

 

[valleysangel92]

Thankyou for the support all

Layla - Entyvio is gut selective, it targets specific parts of the immune system found in the gut, so it doesn't act on the joints unfortunately. Inflectra did wonders for my joints and did help my Crohns too, but unfortunately I had a severe allergic reaction on the 5th infusion.

Maya - My joints have been deteriorating for quite some time now to be honest, I can trace the deterioration in my hips and back to before my surgery in September. Things have continued to get worse since I started the Entyvio but I can't say for sure if its linked or if its coincidence as things were going down hill anyway. I can't say my joints particularly flare around the time of my treatments though.

I'll let you all know when I get a rheumy appointment through, hopefully it won't be more than the 12 weeks.