CIMZIA - My Experience!!!

[sciqueen]

Hi All

My first dose lasted 8 days before it wore of slightly - about 10%. I felt very energised for the first 8 days.

Was able to clean the house, all 3 bathrooms, do washing all in the same day. Have trouble sleeping during the days now as I am not tired, even though I know I should rest, I am only managing to sleep 20 - 40 mins max during the day. The last 6 days of the two wks were still better than not being on it though. I only used my stick twice in the last two and half wks!

Took my second dose on wednesday and like before had cimzia fatigue and headache the first day and half and once again I feel good/revived of energy. Hopeing it lasts longer this time round (at least 9/10 days), and at each subsequent injection I am hopeing it lasts longer each time, so I get as near as possible to two wks before it's effects run out.

Cimzia nurse says it takes 12 wks to settle down in your system and she was pleased it seems to be working for me, thus far!

I am expereincing reduced cocods and don't need to take anti flams at all. I am also of the steroids since the wkend.

Went into work today, its the last day of term. Sat for an hour and half before my knees told me they were getting sore. Was able to walk up and down 4 flights of stairs to the second and third floor with ease - experienced no problems.

I am little tired now, but I am going to bed later in the evenings. So far the cimzia experience for me contines to be a postive one. I have my first review regarding my progress with the drug at the end of August, so I don't have to do bloods until about a week before, then if all being well I move onto 3 monthly bloods.

We are set for good weather at the weekend, so hopefully we will all benefit from that.

Take care Joanne

[Hidden]

Hi Joanne! It is always uplifting to read of someone's success with a drug.

The Simponi I have taken for 21 months does exactly the same for me. After having tried Humira and Enbrel and did not feel much change from them, this one is doing very well.

I figure, presently, this is as good as I can be, and that's OK. Remnants of disease damages before Biologics still obvious. Had rather extensive repair on my rt wrist in March, and it has recovered very well. Best of all, no pain.

That is amazing that you can do all those stairs, I remember when you had a major problem at work because of the stairs. So that is testimony of a successful drug for you.

Enjoy the rest of summer. We here in the states have just been sweltering, with most states across the country burning up with record high-over 100 degrees- temps, almost every day. Couple weeks ago, every day was high 90's and 100's, with over 1,000 cities nationwide with record setting temps.

This next week we are heading into it again. Thing is, with temps this unbearable, plus virtually no rain, crops are burning out, fruits are ripened early, but small and we have to stay inside in air-conditioning, just too hot to do anything outside, so we are doing the same thing we did all last winter staying indoors. This is what we were looking forward to summer for all last winter??

All the best for the days and months ahead, Wonderful things are working well for you, and me too. Loret xx

[sciqueen in reply to Hidden]

Thanks Loret

We've still got flooding & persistent rain here in most of the UK. Hopeing that will change soon and we get more normal weather for the summer from now on, as we are on our summer hols in about 3 wks. Don't fancy sloshing our way through the beaches of Devon!

The drug so far has been amazing although I do think the effects will settle down and become more consistent and last longer. Hopeing that I continue to go from strength to strength with Cimzia!!!

Thanks for your support Joanne x

[sylvi]

Joanne, what a lovely experience for you. It is nice to hear some good things about drugs working and i say long may it continue for you. You now have a break from school and from what i have seen you will have earned it on merit alone,without the school children adding to the mix. You don't say what you do at the school,you will have to excuse me if you have said before,but my head is not very good,brain fog. I am sure you know what thats like.

Long may it last for you. sylvi.xx

[beth48 in reply to sylvi]

Thanks for blogging about this Joanne, it's always good to hear other peoples experiences with their meds.

So pleased that it's working for you,who knows you may end up ditching the walking stick ,do hope so.

Enjoy the sun and your break from work.

Take care Beth 48 xx

[sciqueen in reply to beth48]

Hope so Beth, that would be nice!

Cheers Joanne x

[sciqueen in reply to sylvi]

Sylvi I am a teacher of science.

I am so grateful to reach this point. My first year of ra has been a struggle work wise, so I am hopeing when we go back in September I will be able to cope better with the stress's of teaching.

To be frank I did not thing anti tnf would do anything for me as I accepted that what I acheived with traditional dmards was my lot. It's so unexpected and exciting to feel more normal and to have the energy to do things without feeling so exhausted, during and after an activity.

Next goal is to loose some weight as I am now off steroids. I have never been so big in my life as I am now and I hate this moon face!!!

Thanks Jx

[sylvi in reply to sciqueen]

As you teach science would you be able to incorparate your ra into the lessons as the children would learn a lot from your experience.

I am still on steroids and i would love to come off them,not likely yet as i'm still in a flare and boy do my joints ache. I am grossly overweight and would love to lose some weight,but at the moment thats a non starter.

love sylvi.xx

[sciqueen in reply to sylvi]

Sylvi

When they reduce to 5mg and lower they stop having the desired affect and the side affects are more hassle.

My skin was begginning to thin, if I remained on them for much longer I would need to take supplements.

So no matter how I felt I continued to step down as I was determined to come of them. Every wk I stepped down 1 mg paused for about 5 wks at 5mg then continued on till last wkend I finally completed the 1mg, I did not need to go to every other day of 1mg as I have been fine all wk.

Every thing has a time and a place, its not your time as yet your time will come, just make sure you step down timely for yourself.

Cheers x

[sylvi in reply to sciqueen]

Joanne,The way way i feel this morning they would be increasing the steroids not reducing them. My joints are stiff and sore, even my eyes are rough as well. The change in the weather from chilly to hot in such a short space of time is playing havoc with me.

Hope you are able to enjoy the sunshine. love sylvi.xx

[joan_w]

So pleased to hear that Cimzia is working for you. I am also on Cimzia and have found it life changing. Long may it continue.

Jo

[sciqueen in reply to joan_w]

I second that Jo

Cheers x

[joan_w]

About losing weight. I am also overweight and found it very difficult to lose any weight at all. Then in October last year I was diagnosed as diabetic, quite a shock. I read everything I could about what I should eat to improve matters and finally decided that a low-GI/low GL diet seemed best for me.

I was very strict for the first 3 months, cut down dramatically on all high carb foods, changed to brown rice, wholemeal pasta etc. I couldn't believe the results. Not only did I become technically non-diabetic (I am still diabetic if I went back to eating the old way), but the weight just fell off - 2 lbs a week with no bother.

You may find that it could work for you. It did not require any major changes for me, except not having much bread (I love wholemeal bread, but I changed to German rye breads) and I never felt hungry.

Jo

[sciqueen in reply to joan_w]

Hi Jo

since you & T wrote a similar comment I've responded back too you both, so please check out my reply.

thanks for your suggestion - greatly appreciated

Jx

[Hidden]

Well done Joanne I'm so thrilled for you that the Cimzia is exceeding your expectations so much - you really deserve this break as I know how hard things have been for you.

Re the weightloss - I don't think it's as hard as it seems actually. For me it was the fear of getting diabetes (my dad and grandad both suffered and died indirectly from this) that propelled me into a major taking stock and I've kept this up for 18 months without much bother. I haven't had to take steroids much (twice and both times turned me into a nutter!) so I have been lucky in that way and it really takes a major psychological shift rather than a change in eating pattern so that you aren't dieting you are changing your whole approach to food forever - very much as Jo has described. I also hated the idea of people looking at me and thinking or saying "there goes that woman - no wonder she's limping when she's that overweight!" which sounds a bit harsh but I live in a very small community and am very proud! And I was very, very overweight indeed.

I don't exercise to lose weight, I exercise because if I don't I seize up and keeping moving is the only way I can function. I think I'm one of those who doesn't actually burn up calories through aerobic exercise because it doesn't matter how much I do it never seems to affect my weight. But keeping the muscles strong and toning things is a really good way to support our joints when you are well enough to do it.

So the only way I lose weight (and I've still got 2 stone to go to be at the right BMI for my frame) is to eat at mealtimes only and be incredibly careful and not eat anything after 6.30pm.. As Joan describes I too eat only wholesome food with no refined stuff, hardly any sugar and little fat, and I don't eat any wheat or drink any caffeine. I do this by mind control and feel empowered now because food is just a temporary experience and I am much more functional about it now - don't think about it all the time and just eat what I need. I fill up on fruit, nuts and gluten free oatcakes and seeds etc and eat a lot of oily fish, free range chicken and loads of veg and fruit so it's hardly like starving myself - but I feel so much better for it and it's a way of taking control over my own life and health despite RA. TTx

[sciqueen in reply to Hidden]

Hi Jo & T

Yes you are both right. I have wheat & milk allergies and I am suppose to follow a gluten free diet as I get really constipated and stomach cramps. Most of the time I do, but because the meds cause constipation (cocods) and diarrhoea (mtx), they kinda cancell one another out, so I've started to eat wheat again. I've missed bread the most and although I have the alternative, its still not as nice as soft brown bread!

I follow a low carb diet at present and only eat carbs at the wkend as I love rice, rarely eat potatoes and I only eat chips when we go out for dinner. Other wise I eat veggies with my meat. I also eat lots of fruit 5 a day and drink fruit juice as I hate fizzy drinks. My diet is not the problem. It's been the inactivity, 7/8 months of steroid use and hitting 50 this yr has seen me rise to a 15 bottom & 16-18 top (the biggest I've been). Before I was a 12 bottom & 14 top.

I've not worried about my size as I have been in pain most of that time, so my size was the least of the problem, although 3 wks in to steroid use I got the moon face and that made me cry. I felt un attractive as I got bigger - but hey I am alive, so I promised myself once I sorted out the pain I would focus on my weight - so I am gonna hit the wii fit board as soon as I can!!

Thanks for your suggestions, keep them coming gals

Jx

ps I use to love dancing and I am hopeing I can resurrect this activity!

[helixhelix]

that's lovely to hear Joanne, so great that Cimzia is doing it for you. Hope it just keeps on getting better and better. But please don't use all your energy on cleaning bathrooms - go and enjoy the sunshine instead! And hopefully having more energy and being able to do more will make the pounds disappear. Take care,Pollyx

[sciqueen in reply to helixhelix]

Yep I agree. Hopeing to go for my first swim next wk, since diagnosis.

Thanks for your support

Joanne x

[Hidden]

Fantastic blog!

Love it happy swimming x

[sciqueen in reply to Hidden]

Cheers x

[Mrskw]

Hi, thank you for sharing, I start on Cimzia today, nurse is due in an hour and a bit ( not that I'm clock watching at all!!) I feel rather nervous about the whole injection thing tbh, but I'm really looking forward to the autumn & winter when I can wake up stiff free, and being able to go a recent walk without wearing myself down.

Today is new start for me and my family, and I can't wait!

?? kirsty x

[MFAB]

I had my first injections of cimzia a week ago and the effects were marvellous. It is beginning to wear off now but I am hopeful that once the medicine is in my system after the first few doses it will be good. Wonderful being able to do things with my hands and go for an enjoyable walk, not to mention get up and down the stairs easily as we have three flights in this house!