Hi Poppy

Sorry I can't help you but there are plenty of people on here who can and I am sure will. Just wanted to say I hope you are feeling better soon

Sheila x

Poppy

I am sorry to hear that the Rituximab is not yet working. Yes it may take six months or longer or may kick in tomorrow. Unfortunately each person is different. I am also told that you can have a flare after starting Rituximab so this may be why you are feeling so poorly.

As Jean says ring the NRAS helpline and someone will be able to help you through this.

Jackie
xx

Hello Poppy

I am waiting to start Rituximab. I was council last week and I was told by my RA nurse
that everyone is different. Some people actually see a benefite almost immediately whilst
others can take up to 5 6 months. Like as mentioned above it seems the more cycle you
have the better the drug works.

I am very nervous starting this . Should I be Poppy ?

Rose

Oh Rose I am totally with you here.

I am due to start Rituximab in the next four weeks and to say I am scared is a huge understatement.

I want to shout out NO I am not taking any more of these drugs.

If there is a side effect I will get it, I am allergic to many many drugs, and develop allergys to thngs that I have normally been fine with. They tell me that is because of the sjogrens Syndrome.

I believe we are damned if we do take the drugs and damned if we dont. Very very scarey. Was told on Monday they are running out of drugs to try me with, and that is scarey.

I had loads of xrays done on monday to see what damage all the inflammation is doing. Back in 2007 they already noticed thinning of my bones so I hate to thing what will show this time. The rheummy told me Ritux cannot repair damage already done, so I may never get out of the wheelchair.

Its such a difficult decision it really is.

Love
Belinda
x

Thank you, Poppy.

Yes I have failed and am allergic to alot of the other drugs. You wont put anyone off, it is just really really nice to hear other peoples experiences. Also to know that I am not being a baby when I say I am scared.

My sister keeps saying to me you have just got to go on it end of story, but this is someone who wont take certain tablets because they make her mouth really dry. I know for a fact she would never take anything if she knew it would make her sick for two days out of the week. This is what mtx does to me. Amazing how brave people are when they dont have to deal with it.

I dont blame you not wanting to go through it again, we have enough to deal with every day with this damn disease let alone how the meds make us feel.

Enbrel was my miracle drug, I was put on that back in 2005 along side mtx, took a year to kick in but once it did wow... I was out the wheelchair, driving, helping out at my little girls school, I had my life back and I felt like I was living and not just sitting on the side lines. But because I had to come off it for an op in 2008 and could not really get back on it with one infection after the other it stopped working.

They told me they would know within four months of having the two infusions if it was going to work. The not working part is worrying me but not as much as the side effects.

Love
Belinda

Hi Poppy,

I do inject MTX , which I do on a tuesday evening, which makes me queasy all night and sicky all wednesday. It is like a sea sickness, call it my sea legs, the sickness comes in waves. With the tablets, well lets just say I saw most of the bathroom for the several days, it was evil. I wish my system was not so sensitive to every thing, it gets boring lol.

I was diagnosed in 2001, so i have had it for ten years..... I was ticking along quite nicely with a one off steriod shot. Sent it in to remission for three years, then I lost my mum in 2003 and the shock of that sent it into overdrive so had no choice, but was on mtx and steriods for two years, but then I developed steriods induced cushings syndrome so had to ween off them and a consultant at another hospital said all I could have was mtx and i would be in the wheelchair for life. Luckily I had already joined here and new there were other drugs I could try, so my doctor sent me to Maidstone Hospital and Dr Hammond there said to me he would get me out of the wheelchair and walking again and boy he did. But of course I am back there now, even worse as the disease is effecting everything, and then I also was diagnosed with the Sjorgrens, which is hell in its own right.

I am 45 and my children are little girl of 13 and little boy of 16 ( not so little lol) they are amazing kids they have seen far too much for kids their age. Its for our kids we keep fighting for, isnt it.

But I just want to shout please no more drugs, because I hate the roller coaster ride with them.

How long ago was your last transfusion of Ritux Poppy ?


xxxxxxxx

Poppy you have not put me off. They never tell you what could happen, so I thank you for telling me. I want to know the good and the bad that way I believe you get an even balance. I sometimes think the consultants are too blaze and dont want to tell you the bad.

I dont think I am having a harder time than you hun. RA is horrible and the pain and difficulties it causes all of us is hell.

My specialist said to me that it is a 50/50 whether Ritux will work and there is only two other drugs I can try. She said unfortunately for us sometimes no matter what we throw at RA it does not always work and they do not know why. I do believe though they will keep trying and new drugs will keep coming up. It does not help does it hun when people comment who dont know about the disease, ie like your sister and mine. She said to me tonight, how come when I read up about your RA it says it goes into remission and yours is not now. ERRR let me think oh yeah the meds arnt working haha, that could have something to do with it haha..grrrrr lol

I know the steriods can cause flushing of the face as well, so it could be that combined hun. Do you know if you have R factor in your blood. When I was first diagnosed it was Psoriatic Arthritis and my R factor was negative, then in 2007 my R factor became positive and my disease progressed to Rheumatoid Arthritis. They said to me had my R factor not been positive it would not have been worth me trying ritux. Not sure if I am thankful or not lol...

Love
Belinda
xxxxx

Morning Poppy

I have until 4 weeks to decide, my mind set this morning is, Go for it, if I start to feel funny whilst having the infusion to 1. dont panic 2. tell them straight away.... oh I sound so brave haha... until the day it happens. I am determined not to let my fear over take the fact this could be the one for me. Its not easy though.

I am glad you have your sister but cannot be easy for you both being unwell. My sister thankfully is very well but the trouble is she believes the doctors can find a cure for every thing, if that makes sense. But when your on the RA rollercoaster ride you realise that they are human and cannot do miracles.

I have every thing crossed for you poppy that ritux will suddenly kick in for you and start doing its job.

There is no RA or any other autoimmune disease in my family at all. So its like how come I am so lucky lol.... I just pray that I dont pass it to my children. I think I would be devastated if I did. I hope they take after their dad with his genes.

Thank you again hun for listening and telling me your experience.

Love
Belinda
xxxx

Thanks Jean that is very kind of you,but i think we all have our challenges.I know Jenni she lives near to me,i actually rang her up for advise.She talks alot of sense.

Belinda no one else in my family has this apart from me.As for our children they have got more chance of having twins.Anyway what is the point in worrying about something that may never happen!Glad you have decided to go for it,you have nothing to loose.

Love Poppyxxx

"having twins" that made me laugh Poppy....... now that is a great thought for later, loads more cuddles and you can hand them back at night time haha.....


Love
Belinda
XXX