Need to get this of my chest

villier

Sorry this is not Arthritis related, and I an not looking for sympathy just need to get my frustrations down in black and white. As some of you know I have a very rare Neurological condition and get infusions every three weeks in hospital. I was in on Wednesday and everything went to plan until I got home and noticed a red rash on my neck which went into my chest over the next hour, I phoned the ward and was advised to take piriton which I did and seemed to calm the rash down a bit.

A while later I was extremely sick and noticed red spots on different parts of my body, my brain froze as the treatment can cause aseptic meningitis, phoned NHS 24 for advice was then taken to hospital, after tests etc aseptic meningitis was ruled out thank goodness I had just taken a reaction to the treatment and was given prednisolone and a stronger anti-sickness drugfor four days, the sickness has stopped and the rash is slowly disappearing.

I am on a bit of a downer as I don't know yet what will happen if they will change the brand of immunoglobulin or will stop it all together. It is the only bit of relief I get as all other Neuropathic drugs do not work. Sorry for the doom and gloom it is not like me to be so negative but writing this down has helped a lot. I don't know what I would do without this forum....................Marie xx

Slosh

That must have been very scary. Do hope that they are able to find an alternative and effective treatment for you.

mig

Sending some much needed hugs. (((()))) Mig

stickywicket

Marie, I have never known you to complain about anything despite juggling with both arthritis and your serious neurological condition. You cope with a smile and an encouraging word for others all the time. I very much hope that all will be well for you to continue with the treatment. New ways of dealing with side-effects come up all the time and new treatments. Fingers crossed for you and, in the meantime........((((()))))

Boomer13

Very scary, Marie(((()))).

Perhaps they can give you prednisone and antihistamine before your next treatment?

Hope so...It's scary having to change treatments or give up on one that was working.

Best wishes,
Anna

barbara12

Oh lovey like SW says you never moan, or say much really but I know it must be so hard battling two things, so you carry on talking to us lot.
I for one love to be able to help if only a little bit, I think they will find a way round this for you, maybe something they will give you before hand,
Its no use saying dont worry, cause you will, :roll:
I will have everything crossed that it all turns out ok some gentle hugs cause I know you need them ((((())))) xx

Mat48

Marie I really feel for you - I know that I find my own far more waffly, moderate pile of autoimmunity quite hard enough to deal with but heck knows how you manage to be so stoical really. I had two skin biopsies on the V of my neck on Monday while visiting the dermatologist in the big hospital south - and he mentioned Immunoglobulin as one of the tests. Won't hear back for over 4 weeks so determined not to worry or think too much about the fact that he kept coming back to examine me again between appointments murmering "never seen the like - intriguing, curious.. hmmmm?" Skin manifestations are scary - hoping yours settles soon and is perhaps a one off reaction to the infusion.

Really thinking of you.
Big hugs, Mat xx

villier

Thanks everyone, I feel a lot better already getting things off my chest.

I actually get a bolus of Hydrcortisone and piriton before the infusion is started as I had a reaction after getting it for the first time you get it over five days and my hands came out in a rash and all the skin peeled off, I have had a slight reaction before when just about finished infusion the nurse noticed redness on my neck and stopped it, I had to sit for a while before going home and the rash disappeared.

I am hoping now that they will just change the brand as the brand I get is the cheapest(£2,500 an infusion) I have been in touch with a lady that has the same condition and she has heard of a guy that had anaphylactic shock after ten years they just changed the brand and has been fine since , I am hoping that is what they will do with me.

Mat, sorry after reading your post I hope I haven't put the fear of god in you about immunoglobulin if that is a road you may have to go down, the treatment does help me a bit and it is just unfortunate I have had this reaction as we know everyone is different. It sounds as though you have got another good 'un that seems to know what they are talking about, let me know how you get on.

Thanks again everyone hugs were mucho appreciated xxx

Numptydumpty

You are right Marie, you don't often complain, which shows how worried you are about this!
I hope you're able to take things easy this weekend. I also hope that a change of brand is possible and effective.
I'm pleased it helped to get it off your chest, and remember, we are here for you whenever you need us (((())))
Take care,
Numpty x

villier

Thanks Numpty, the support you get on here I cannot express how much it means to me, I am having a very lazy weekend doing not very much. I am going to email my consultants secretary on Tuesday to pass a message on to see what will happen next. the doctor I saw in hospital spoke to someone at the hospital I get my treatment and said they would let my consultant know but as we know sometimes things slip through the net at least if I email he will have it in black and white. Hope you are feeling better yourself now Numpty xx

dreamdaisy

No wonder you are fretful, I know I would be and I don't have your stoicism. I don't know what to say to help but I am pleased that you felt you could turn to us for support - you will get (and deserve) a great deal of it. ((( ))) DD

stickywicket

Just a top up, Marie. (((()))) They're de-fumigated ones but, if they don't sort out your infusions, I can send the non-de-fumigated kind to the person or persons of your choice

villier

Thanks DD and Sticky. DD no need for words knowing that I can talk to you all and know that you all understand what kind of emotions you feel when you are in a bit of a 'crisis' for want of a better word. Knowing I have friends on here that totally understand means the world to me.

The sickness has stopped and the spots have died down a lot. Sticky is there iron in 'soave'?

stickywicket

Shov3 a couple of rusty nails in amd there will be

dibdab

Don't think I have anything useful to add, except keep talking and we'll keep listening. {{{{{{{{{{{ :? }}}}}}}}}}
Deb x

barbara12

Marie I have been thinking about you , and so glad things are a little better ie what you will take before hand and getting things off your chest..we are always here and you are such a good supposrt to many...(((())) xx

villier

Thank you Deb and Babs, I appreciate all the support I get on here regardless whether Arthritis or not. That is why I love this forum so much most of us have more than one condition going on and others more than that. I try and give input as much as I can although not understanding some of the types of arthritis and meds but hope can give support knowing what it is like living with chronic conditions. I thank you all as I appreciate how you all feel and try and get through day to day.........................................................Marie xx

Starburst

I hope it helped to get some things off your chest. Here's to hoping you are snoozing peacefully right now. Gentle (((( )))) x

DebbieT

((((Marie))))

It was no wonder you freaked a bit at the time hun ... It's darn scary wen meds go weird on us :?

I'm so glad you decided to open up to the forum as it seems to have calmed your mind n worry a lot. They do say a problem shared is a problem halved

I hope they'll have answers for you very soon.

Masses of (((Hugs)))

Xxx xxX

stickywicket

How are you doing, Marie? ((()))

villier

Thanks Sophie, Debbie and Sticky, things have calmed down a bit spots are still there but fading by the day, I haven't heard anything from my consultant yet if there is no contact today I will drop him an email to see what is going to happen for my next infusion in two weeks time xxx

villier

I got an email from my consultant and the registrar who will review me in two weeks on the ward, they may change the brand or the type which is a huge relief that they are going to continue. The registrar was all apologies as she contacted my doctors surgery with the plan and as yet I have not had any contact from the surgery, mmmmm least said I think. At least I now know what the plan is.

Thanks again all you really helped me through a bit of a stressful time, I don't know what I would do without you all......................Marie xx

Slosh

That's great news, you must be relieved

stickywicket

Celebration time? Usual please