Drug reactions

PetiteN

Hi all,

I've had a pretty rough day.
I was really looking forward to my infliximab infusion this morning, as I'm flaring so badly, have just got over another bout of flu and then a chest infection. I was hoping my treatment today would be a bit of a turning point in a rough few months.


What actually happened was quite a shock.
Within just a couple of minutes of the drug going in, I had an anaphylactic shock- sudden dizziness, throat swelled up, chest pains, i couldnt breathe, started to pass out. The nurses acted really quickly and were brilliant, which I'm very thankful for!

I've had this drug six times before and have been ok, and although I have history of scary allergic reactions to many drugs, it was still a shock and unexpected.

Frustratingly now my Consultant and I are back to the drawing board on what drug to try now, as I'm now currently on nothing and unfortunately it's another to add to the 'not an option'! list.

Have many of you had OTT drug reactions?

I'm home now, cat on my lap, having cuddles! Needed a cuddle today! I'm feeling calmer, but frustrated at yet another setback.
x

stickywicket

How horrible and frightening for you! I've read other people's accounts on here of such reactions to infusions often, like yours, when they've been fine with them previously.

I don't know where you go from here but I hope there will be something offered soon.

Popsmith1874

Wow how frightening that must've been hope your ok now take it easy,as y can probably see I'm burning the midnight oil again

dreamdaisy

The drugs we take to help us are powerful weird things. Our bodies may lack power but are also weird things. It sounds as though you may be one of the very unlucky ones whose body cannot cope with the demands of these meds which must be frustrating to say the least. It was good that you were in the right place to have the reaction dealt with and so swiftly - I had a similar but-not-as-strong reaction to Quorn (of all things!) and had to deal with it at home. I hope you are feeling better today.

I don't know where you go from here but I hope you and your consultant can find something else for you to try. DD

mermaid

Hi there,

So very sorry to hear of your reaction to this drug. It is a scary feeling indeed and leaves you feeling pretty wiped out afterwards as well as disappointed that this one is ruled out after quite a few infusions. I had the same thing happen to me on my 8th infusion of the same drug, it happened so quickly and I came round on oxygen with several doctors peering down at me! They were surprised and said it usually happens with earlier infusions, but my rheumy said that allergic reactions like this are a cumulative effect (bit like bee stings).

Not sure what other drugs you have tried, but I went on to have Enbrel for 6 years with no problems, then Rituximab, also with no reactions, but have had serious septis infections unfortunately. So there is always hope and so many more drugs to choose from now. I had steroids to tide me over before being approved for the next treatment and these also helped recovery from the anaphylaxis.

Do hope your consultant can come up with a good plan to give you relief from your current flare. Take good care of yourself and let us know how you get on,
xx

Bovey1

Hi petiteN,
I have had AS for four decades, and in that time I have had anaphylactic shock, plus other very frightening hospitalising drug reactions. I am allergic to many drugs. I have been told it's because of my immune system being way too sensitive wrongly identifying drugs as foreign bodies and it goes into massive overdrive, anaphylaxis. All of us with arthritis have an immune system which has gone wrong, destroying joints and ligaments as well as bugs. You and I have to be careful when being given drugs new to us. It's another pain in rear arthritis gives us!

hileena111

Oh!! That must have been so horrible and so frightening.
Hope you and your consultant sort something else out

Love
Hileena

PetiteN

Thanks everyone.
Sadly it sounds like it's more common with these drugs than it should be.

I'm sorry to hear some of you have had to go through similar frightening experiences.
It seems to be happening to me more and more... It's disconcerting.

I was speaking to an old school friend earlier who said she was on infliximab for crohns for a year, and then one day started the infusion and she collapsed :-/

I'm feeling ok, just very very tired, and flaring so badly today. Im off to bed shortly.

Im trying not to worry too much, as it'll only make me feel worse, but being off all meds and flaring like this is worrying for me, having lost my eyesight in my right eye a few years ago when my condition was so uncontrolled. I rely completely on my left eye being ok now.

The hospital want to see me again in four weeks to try a different biologic.... Obviously I have to try something, theyre concerned about my eye, and we can't leave it too long, but hopefully I won't react to the next drug.

Need to hold onto positive thoughts, rather tired of so many setbacks and big challenges over the last year.

I'll keep you posted, thankyou for the support x

stickywicket

Yes, you need to stay positive but that must be a tough call when you're flaring and worried about how your eye will cope in the interim period. It's very unlike me to suggest this but could steroids provide a temporary respite?

How are things today? Did the rest help at all?

PetiteN

Hi sticky,

I've not long finished a course of prednisolone, for my flare, unfortunately prednisolone pushes up eye pressure, which is absolutely what we are trying to avoid with my good eye (I lost the vision in my other eye due to high pressure) on the other hand inflammation also pushes eye pressure up, so it's a difficult situation.

I was feeling a little better last night, tried to chill out and plan a few positive things.
Today has been difficult, lots more pain and then I opened my post to find the PIP decision, and that I haven't been awarded higher rate mobility, so stand to lose my Motability car.
I was completely shocked.

At the assessment it was clear I struggled massively mobility wise with just short distances, less than twenty metres. I communicated this to the assessor and he even commented that he could see that.

So I was shocked to read that 'you can mobilise around twenty metres or more, between twenty and fifty' so I don't qualify.

I feel so drained, yet angry, stressed out, but need to find the energy to find out how to challenge this decision. Absolute last thing I need right now, also have the ESA work capability form arrive this week.

Sorry it's moan moan, I'm shattered I think

x

barbara12

That must have been scary,I do hope they can sort something out for you very soon..the decision on the PIP is awful and you just didn't need this, if only these people suffered the same they would be more lenient..I hope you appeal..good luck

stickywicket

All I know about PIP is that CAB are very good at helping people to fill the forms in correctly (whether initial ones or appeals) and any possible supporting evidence from your health professionals. You really don't need this right now. ((( )))

PetiteN

Thankyou Barbara.

Yes, I plan to go to the local CAB if I can't find enough info online Sticky.

I know I followed the guidelines to fill in the form correctly, it seems to me that it's the face to face assessment where the assessor hasn't reported things accurately.

I'm going to try and get some more medical evidence (although I supplied loads!) and obviously challenge the decision and their conclusions which are wrong. It just feels so insulting. And I know thousands are in the same position, it's so wrong.

Trying to focus on positive things where I can as I was feeling so low and fed up last night.
I've seen my nieces this morning which was lovely, and I'll be seeing a friend later x

stickywicket

Well done on focusing on the positive! No small achievement in your current circumstances. I hope the nieces helped. Small bundles of optimism are infectious

I wish you every success with the appeal. I agree, it must be so demoralising and also worrying re the car. I wonder if Motability themselves have anything to offer. You will certainly not be the only one that this has happened to and it can't be good for them either. I'm wondering if they have any mechanisms in place for while clients are appealing.

How are things today?

PetiteN

Hi sticky,

I always try to look for the positives, no matter small, in the midst of any really difficult time, it's what keeps me sane to be honest.

I've downloaded a load of legal advice about appeals, and formulated a plan of action in my head about asking my Consultant for supporting evidence, I just hope it can be achieved in the four week deadline. Taking positive steps is all I can do.

Other than that today has been pretty challenging if I'm honest, my flare is off the scale now, and the pain levels.
I've booked an emergency private Physio appointment for Thursday for some ultrasound treatment on my shoulder as I can't bear it (its locked up completely as of last night- it's needed replacing for a long time but they've been reluctant to) so I was a bit gutted that I couldn't even reach properly to wash my hair this morning.

I've not been into work, but have at least enjoyed long cuddles with my little cat, despite everything else.

I hope your day was ok?

stickywicket

I think the physio is a good plan and I hope it helps. So is the legal advice and plan to ask the consultant. So are cat cuddles

Me? I'm busy. We're going to see our son in L.A. Next week, our house is on the market so we keep having to evacuate (and tidy up) for viewers and my 20yr old (or so) THR is having a wobble. That apart, I'm fine

PetiteN

stickywicket wrote:

I think the physio is a good plan and I hope it helps. So is the legal advice and plan to ask the consultant. So are cat cuddles

Me? I'm busy. We're going to see our son in L.A. Next week, our house is on the market so we keep having to evacuate (and tidy up) for viewers and my 20yr old (or so) THR is having a wobble. That apart, I'm fine

You've got alot going on then! I hope the trip to L.A goes well, are you going for long?

I've been in alot of pain today, it's my muscle tension/pain that is off the scale. Fibromyalgia part of my condition seems to be flaring more than everything else.
I'm going to see the Physio tomorrow x

stickywicket

I do hope the physio helps. I usually find it does but I don't have fibro. Let's know how it goes.

Yes, a month at our son's. Hopefully we'll return to find a queue of buyers bidding ridiculous prices and we'll then immediately spot our dream bungalow in Scotland Or maybe we'll just chill out and watch the grandson playing baseball. The hip is easing. All to do with my left leg getting shorter as its TKR packs in so it puts pressure on the right THR. I've added yet another insole. And booked to see the orthotist when I get back. Sometimes the simpler solutions are the best.