Kathy

I just wanted to offer my support even though this is the one drug I have not taken. It is quite usual to have a flare once you start an ant=tnf but you are obviously also suffering from side effects.

Cimzia is one of the newer drugs and the free twelve week period may be why your Rheumatologist has put you on this. Do not read too much into this though. Each person reacts differently to drugs and it is just a question of finding the right one for you. I have tried, Enbrel, Humira and quite recently Rituximab by infusion. I have had bad reactions to them all. I am going to be a guinea pig for a new drug coming into Shropshire for the first time in the next few weeks. Please remember these drugs are heavily trialled before being brought out on to the open market.

Can you not speak to your Rheumatology Nurse whilst waiting to see your Consultant? If you are suffering so many side effects then it should really be questioned whether you should continue on this and waiting for an appointment with your Consultant may take a while. I would really get some advice sooner rather than later. It is no use continuing with the Cimzia if you are feeling worse.

Keep us posted.

Take care

Jackie
xx

Hi Kathy

Sorry to hear that you have been having such a terrible time since starting the Cimzia. I have taken exactly the same amount - three double doses and two singles and have been on a real roller coaster throughout ! I have not suffered any real side effects, I definitely have got more energy which has been a great bonus and last week my CRP was barely 1 compared to 104 just before I started when I was still on infliximab. However I have been very up and down with it, this weekend I felt terrible with my shoulders, arms and hands full of inflammation - today well, I think I have had one of the best days so far, I would never have believed the difference in just one day !.

I am not sure if this is the one for me, just crossing my fingers and hoping. I hope you are able to get to see your consultant very soon and get his thoughts on whether you should continue taking Cimzia.

Before I go, a big welcome to the Forum !

Keep us posted on how it all goes, Julia x

Hi Kathy,

I am sorry you are having such a hard time at the moment and obviously you need to see your specialist. You want to give this drug a good chance, but on the other hand if the side effects carrie on for too long some other action needs to be taken.

I started on Cimzia feb.28th receiving one double dose and after that: single doses every fortnight. My CRP and ESR had been very high for about 8 months both over 100. My first bloodtests were quite dramatic, (CRP going from 117 to 10). It was hip, hip hurrah it is working and I felt so happy. This is going to be for me. Next bloodtests in may it was back to 63 CRP. In june it was 106 and I was feeling awful. In august the CRP was 1 and last week it was 2!!!! How do you explain it all? I am still on 25 mg mtx and 5 mg predniselone. When I had the second flare my predniselone was increased to 10, which maybe also helped to bring my CRP/ESR down.

I still don`t know, if this drug will be for me. I did very well on Mtx for years, and I am wondering when the consultant starts weening me off that drug, that the Cimzia will be enough.

I do wish you better and that the doctors will find the right treatment for you. RA is such an awful disease, that zaps our energy and lowers our moods to cope with what every day throws at us. I have my days, where I find it very hard to cope and I just need to be very quietly at home resting. I am lucky being retired and the children long ago having fled the nest, but for you young people still going out to work an having demanding families, it must be very tough.

Merete

Hi to all those who have taken their time to reply to me, I really appreciate this and send my sincere thanks to everyone, as at the present time I am still feeling really not so good and do not know who to contact next as I have got any relief to my symtoms for the past three weeks. It just feels horrendous, the worst time I have suffered so much for the last four years. From reading the different threads on this Forum connected with different aspects of R.A. I realise that I have been quite lucky myself in one respect, in coping with this dreadful disease and that I have managed to get by on taking 15gms of mtx and the occasional Steroid Injection into the buttock for the past four years. During the really bad periods of stiffness and pain, I could rely on taking 'Naproxen' which usually helped with the pain within 2 hours of taking it and lasted for the whole day. However, I was told that this was not a good way of controling my R.A. as too many Steriod Injections were not good for you. One of the main partsR.A has affected has been my knees, making it quite difficult to climb stairs etc.(which feels quite an embarassment when out shopping or attending the Theatre etc.) I therefore thought that by taking this new anti-T.N.F. Drug, Cimizia, would be the miracle cure for me and relieve me of some of the minor systems.
I have friends taking Enbrel and Humeria, who have not suffered any re-actions to these drugs, and have gained a lot of benefit from them I therefore never expected anything like the situation which I find myself to be in now, from taking Cimzia. I literally cannot walk very well, especially during the night, cannot dress myself, shower, have pains throughout my body, which I have never experienced before, including 'muscle cramps' and have had a swollen throat for the past three weeks. (I got this checked out with my G.P. even, who told me that I did not have any infection and I could carry on with the last injection a week ago. I have now had eight injections in total since the end of July.

However, yesterday I managed to get an appointment with my Rheumatologist himself at the local Hospital, after protesting to the one and only Nurse in the Hospital Department which they have there who is experienced in Anti-.T.N.F. Drugs. All that she could add to me, after explaining how I was feeling, that nothing could be assured because I was suffering from Arthritis ! not RA. This of course did not make me feel any better whatsoever and was quite a depressing thing to hear.

My appointment with the Rheumatologist was not alone however, as I had my consultation with five 'trainees' present, which did feel rather off-putting when trying my best to explain my difficulties. I did take my husband with me to hear what I was being told. This was the first time I have seen him personally at the Hospital, other times I have paid to see him for private appointments. However, the conclusions to my problems which he arrived at were as follows, He could not understand why I was getting this re-action from Cimzia, (although of course there are no other patients on the drug in W'ton that he can compare with at the present) He told me that he had offered me this drug, as it was lower in cost than the other T.N.F.'s which had been approved by the local authority/ I also got the impression from him that if I did not stick with this, my other options were now limited, whatever than meant ! I can only presume in not being able to try any other anti-T.N.F. since Cimzia was the first one I have tried. He advised me to take 15 gms of mtx. to see if the drug worked, since I had to stop taking methortrexate through side-effects and thought that Cimzia would have been enough. My throat problems, he said he thought were due to the inflammation of R.A. which could effect the throat and the jaw !
When I asked why a Steroid Buttock Injection had not had any effect, or even the Naproxen which usually helped was also not having any effect, he replied well perhaps the disease was not active ! I have no explanation as to what this meant, being in costant pain all over my body. I therefore was left with not being offered any help to get some relief, at the present, but just try taking mtx and using the next injection next Friday.

I would like therefore and be most grateful, if any of you could now give me your thoughts and any further advice as to where I can go next to make me feel better once again, as I feel so depressed and unable to copy with this situation, my husband does not know which advice to give me also, as we discuss my problems for hours on end, which sometimes does jnot help the matter and is very stressful for us both also.

Can J.Smith, also let me know which Rheumatology Department she sees in Shropshire, as from her message I gather that she has been able to try the other anti-T.N.F.s without too many problems ?

Thank you all once again so much, your replies really have made a difference to me in this worrying time.

Kathy C.

Hi Kathy. Just picked up your post about cimzia.I have now been on cimzia for two months.The rheumy nurse thought this would be ok for me as I have had some very bad flares this year.I've been on methotrexate for about five years now,first tablets and then injections.Also I've been taking lots of painkillers and up to three ibuprofen a day. She explained about the three monhts free to NHS.

By the time the cimzia arrived I was in a more settled period with my RA but did'nt feel the methotrexate was working a s well as it did. Since I have been taking cimzia my condition has improved dramatically.I used to have pain in my shoulders wrists and fingers constantly.Getting out of bed was an effort.My husband had to help me to get dressed some days. The thoughts of preparing a meal from scratch or even lifting a kettle were things to dread.

I now appear to be about 80% pain free.I know this is possibly a temporary fix but so far so good.

One of the side effects I have noticed are cramps.Sometimes in my legs especially at night and in my hands at odd times during the day.Also the injection site seems to bruise easily.I do sometimes get indigestion but take meds to combat this.

I do hope you feel better soon.The RA journey is a hard one.I may have left some things out so if you need any further info just let me know.

Hi Jennie,

Thanks for your reply, still feeling really dreadful this morning !
I agree with your comments re: Consultants. In four years of having R.A. I have tried two Consultants. The Frist one, who initally gave me the diagnosis of having R.A. appeared to have not much interest in my condition anyway during further consultations. He simply suggested that I could try this and that, but was never very positive, although he managed to upset me on one occasion when he told me that he did not think that my knees would ever get much better. When I indicated that I did not feel so well on taking the Mtx. he simply suggested that I should take it during the week to keep my weekend 'free'. All in all he never gave me any information at all regarding R.A., this is one reason why I decided to join NRAS to gain more knowledge of the disease.

I decided that a change of Rheumatologist was needed and therefore changed to my present one whom I have now consulted around six times. I am not sure what I really think of him as he his also very undesicive, the latest appointment was typical in him telling me he could not understand why the Cimzia was not working for me, but it became quite clear that he wished for me to complete the twelve week trial period. This is the first anti-T.N.F. which I have tried and could not understand his comments, that my options were now limited. I was therefore still left in a quandry after this consultation which I thought would bring me some relief and some answers to my current problems. His only suggestion was for me to now take 15.mg of Mtx. once again for the next two weeks with the remaining two doses of Cimzia, which he thought may make a difference. I also had a Blood Test Taken, which I will get the results of next week.

I feel that yet again he did not grasp the desperation of my current situation and problems and how the state of my health has now deterioated in the past three weeks, so much so that I am now finding it very difficult to manage the majority of daily things without any pain.

I am so sorry Jennie, that you have tried quite a few different anti-T.N.F.'s, did you reach your own decision that Cimzia and the others were not working for you to stop taking them? When you tried the other drugs, did you have to take another different drug with them ie: MTX and what options where you given when finishing each one including Cimzia?

Finally do you happen to know, if you have any kind of infection present in your body (which of course you most likely do not know about) can any infection stop the anti-T.N.F. drugs from working and present you with this kind of acute 'Flare-Up' as I am now finding, because this did not occur when taking just MTx.

Hope you are now feeling well anyway, thanks for the time in replying~

Kathy C

Hi Kathy,

Sorry to hear you are feeling so poorly.
When I started Humira I had my biggest flare ever after 6 weeks and was told by my rheumy nurse that it is quite "normal" to experience a flare after starting a new drug so I wonder if this is why it has happened with you?
Once the flare settled down I started noticing small improvements in my RA and, apart from the occasional minor flare, things have just continued to improve since then.
Good luck for tomorrow, I hope you can get some explanation for the way you are feeling.
By the way, I take 15mg mtx as well as humira.

Love Doreen xx

Hi everyone,

Just an update on my present situation, following my appointment with my Consultant on Friday, who only advised for me to now include 3 Mtx with my last two Cimzia Injections and said that he will then review if the Cimzia has worked for me after the twelve week period. As I was offered no further help to relieve my symptoms, I rang the one and only Nurse at the Hospital who deals with 'Biological Drugs'(leaving a message on the answer phone to ask if anything further could be done for me to free me of some of the pain at least.

I learnt from speaking with her that my Blood Tests taken on Friday showed an ESR reading of 78 and CRP of 68, these are the highest scores which I have had in four years of suffering from R.A.

However all the advice which she could then give me was that I had to continue with the Cimzia & 3 MTX until my next appointment on October 13th and my situation would then be reviewed.There was also no point in me having a further steroid injection as the previous one had not worked.

I then stood my ground and asked her a few further questions which she was unable to give me an answer to, she said that she would have to go and ask the Consultant these and has not even rang me back again today.

One of the most worrying things she did inform me of, was the fact that if this Cimzia Drug did not work for me (this was the first anti-T.N.F. drug which I have tried after being offered it, due to the lower cost I was informed on Friday) It was now the guidelines of N.I.CE. that you were unable to try another similar one such as Humeria or Embrel and you then had to try the next option which was Rituximab for Infusion, which I am very reluctant to have to do.

I was coping O.K. for the past 3 years on Methotrexate alone with an occasional Steroid, but was led to believe by the same Consultant that this Cimzia would be a wonder drug and control my R.A. symptoms better and if he had the choice he would put everyone on a anti-T.N.F. drug . I was never informed that this would be the only choice after being accepted for an anti-T.N.P. drug or even given any choice of choosing an for me of the other drugs, which some have been available now for the past fifteen years. Cimzia was only approved last year and I feel now that I may have stood a better chance with these, such as some of my friends taking them have found.

It also appears that 'The Post-Code Lottery may also be another indication of what is approved and what you are now allowed to be given, since Wolverhampton P.C.T. are certainly advocating that the Consultants now use Cimzia as their first choice !

Any further comments you may now have will be very much appreciated

Kathy C

Hi kathy

I agree with Lyn

Rtx works differently to the anti TNf drugs and could well suit you. Theres a man on here who was on the rtx and been round the great wall of china

Re your questions. I didnt take mtx on the cimzia I can't tolerate it well and it's never worked for me.

Those blood results are high and you will feel rotten on it. Can you get gp to check for underlying infection?
I have been admitted bring unable to move with huge bloods before. That's sometimes been my oy option and they get that pain controlled and pump me full of steroids.

Is that something to consider?

Id forgotten about the loaded doses on cimzia and wonder on the normal, lower doses if they are looking to see improvement apparently the cimzia is longer to take working than the other anti TNf drugs....

In the meantime it sounds like you are in real trouble. I hate hospitals and have had some truly awful times but sometimes needs must.

Take great care

Jenni xx