Anti tnf update!!!

[sciqueen]

Hi All

I went to a cancellation appt yesterday as part of my finale and second assessment. Providing the blood screen comes back negative, I shall be starting cimzia in a month, as paper work is now being processed & sent of to them that have the power!

I was of sick the friday before half term due to a flare. Hostpital wanted me to come up for a depo injection, but as I was quite poorly and could not walk for 2 days and had no one available to take me to the hostpital and I did not want to miss work, I refused to go.

At the hosptial yesterday, the nurse said I was still quite swollen with warm joints. She asked if I was still experienceing pain and I said yes. She insisted I had a depo injection (120mg of steroid) to tide me over until I started the cimzia as my next appt is not for at least 2 months (in August). I conceeded as I had already endured blood test and the drawing of 5 vials of blood for the anti tnf screening, earlier that morning. I was told to rest and stay at home for at least 48 hrs, but I wasn't to go back to work yesterday after the appt.

I had notified work last friday that I was offered a cancellation appt for the final assessment as it was half term hols. My head of dept, said that was fine, as it was sports day on Monday, so no formal lessons were being taught. The steroid injection although it has reduced the swelling some what, is still taking affect and I found it hard to get ready this morning, so I phoned in sick. Now the welfare officer says I need a sick cert from the first friday I was off (1/6/2012). I have parents evening this thursday and it looks like I will not be able to attend that, as she will not let me back into the building without a sick note. I cannot get to the docs until next tuesday as there is no appt available, meaning I will probably have to miss the parents evening, another black mark against me. I felt the flare coming on whilst at work on the tuesday before the half term break and "she" the welfare officer, would not let me go home as they were really short staffed, so I had to stay.

It seems to me, that I am doomed no matter what I do. Its because of the time I have had off. I get no support from them, and they are forever putting obstacles in my path, rather than helping me to find solutions!

They want to tag the whole half term hols on to my sickness record. Now I am under stress, which does not help my ra.

There I was feeling really brave for under going the depo injection - my first time! Is there no let up from this RA fight? sometimes it feels like it.

Ok, guys thanks for listening. Continue the RA fight & hopefully this weather is not causing too much havoc with your ra.

Cheers Jx

[allanah]

Hi J,

Well that in some ways is really good news. That you are being considered for anti tnf is great and if the steroid act like they do for me hopefully you will feel much better within a few days, and get rid of the awful flare. When i get my steroids I generally fell much better in 5 to 6 days and for 5-6 weeks so if you are lucky it might get you through to summer holiday time and by then you might know about your anti tnf starting date. Keep positive, you know you are brave and strong! Thinking of you Axx

[sciqueen in reply to allanah]

Hi Allanah

Thank you, I am trying, buy work make it difficult. I too am hoping for good results from the steroid injection. A period without any pain - sounds to good to be true.

All we can do is try & hope.

Take care hun

J

[Hobbles]

Hi, I know how you feel as I have worked in education for many years, my advice to you would be to contact the access to work people, they can put into place later starts, appointment times, and supply aids to help you in your work place. Your entitled to the help as our condition is covered by the DDA.

Also talk to your unions for advice, you will be amazed of what they can do to help. And believe it or not occupational health can help as they are supposed tobe impartial and will put it into writing that the work place has to support your hospital appointments and so on.

I also went on Cimza and at first for me it had good results, I didn't have any nasty side effects either. I wish you luck, make those calls. Take care and good luck xx

[cathie in reply to Hobbles]

This is such good advice, you sound really stressed. Not much more stressful in my experience than the educational workplace. Xx

[sciqueen]

Hi Hobbles

Are you still on it? What kind of results are you getting now??

Some of what you mentioned I have already done. I may need to contact OH again, as I feel that work is not supporting me. I do however need to contact access for work. Because I may need a period of adjustment of, when I start cimzia, I will need support from my work then also. I am no longer taking wks of, but the odd day here or there. So I do think they are making a fuss over very little, but they are tracking me.

I am trying not to worry as stress causes the ra to flare. If they wont let me go in for parents evening then thats down to them.

Thanks for the advice

cheers Jx

[helixhelix]

It's awful that your work are being so unsympthetic, especially as you really need to put your health first until you get stabilised. So I'm sure that the parents evening can manage without you for once, and your school can wait for the certificate. Hope steroid lkicks in soon too, and you do have a pain holiday. stay as stress free as you can...... Pollyx

[sciqueen in reply to helixhelix]

Polly

I am trying to stay positive and not let the stress get to me. Its hard as in a way I don't want to be in that environment, as it just adds more stress. Hobble is right, it may be time to get the unions involved.

All I can do is keep fighting & of course smiling.

cheers hun

Jx

[Hidden]

Well done for getting through the anti-tnf hurdle Sci! So pleased that providing bloods are good then you can start in a month. But your work situ sounds dire to me - why can't your senior management team grasp that the better they treat you the more they will get out of you? It's so strange isn't it that these people think that by being brutish and unsympathetic to one of their staff who has a landed a horrid disease they are improving the quality of their school - how stupid and short sighted are these people really?! Would they behave like this if you had cancer I wonder? I bet not! TTx

[sciqueen in reply to Hidden]

Hi T

Right now for the first time in a long while I am not in pain. It feels so good to be pain free, be it a little while. I am so thankful for the steroid for that be it I was so scared and put it of some many times that I was offered it.

I am hoping it lasts until my next appt in August.

Work will always be mean, its there nature. I think I must pee them off as I am so laid back these days. I have the feeling that my gp will sign me of next wk anyway. I am not sure if I want that, but I am fed up with the daily struggle as my ra is not being controlled at the moment. I've become desperate for the biologicals and of course work dont help that they are not supportive. Its ironic that the reason I am accepting biologiclas, is to see if I can remain in work more consistently.

I hope it works for me also!

Take care, glad your back

Jx

[Hidden]

I think you should be taking it for you only - forget work they don't deserve - although the kids do I'm sure (well some of them!) TTx

[Treesha]

Just a quickie as i am on lunch break at work ( 1\2 hour ) it was always my understanding in the work place if you feel unwell or unfit to carry on you do not need your employers permission to go home. Theyre not doctors and therefore its up to you if you need to go. Where i work when someone wants to go home they just say they are going and theres nothing we can do to keep them here against their will ( HEALTH and safety etc. ) Xxx

[Hobbles]

Hello, sorry it took so long to get back to you. Cimza is given by injection once a fortnight, you have I lot more regularly at first then it goes down to once a fortnight. You also have a small dose of metho weekly by tablet form.

It worked brilliant at first and I felt like a brand new person. It has started to wear off now though so hence my hospital stay. I know of lots of Cimza patients who have continued to have enormous success. I am sure you I'll also be one of them. Good luck and let us know how it goes. Make them calls if they start at work. Take care xxx

[Hidden]

It sounds like you are doing your very best to struggle into work and they should be more supportive! x

Good luck with the Cimza x