new rheumy - new label

[harrigan]

ROBINBAT -just wondered how you had got on at your appointment on Thurs (sorry if I have missed a post elsewhere).  Have you had your meds changed as they have not been much benefit in 3 months, or do you need to keep on and be patient?  Ailsa

[RobinBat]

Ailsa,
She changed my BP med as she said it was not good for the Reynauds and I have been having a real bad time with the cold weather we are having, So Changed to Nifedipine ER 30 mg. Also started me on Humira Pen 40mg. 0.8ml every 2 weeks. Told me to stay on the methotrexate 9mg per week and lowered the prednisone to 2.5mg a day.

Has anything changed? My hands are still swollen as ever, but I know it's too soon, but pain in hands seems a bit better....Not really possible this soon so think it's in my head but who cares as long as it feels a bit better....

I guess time will tell.

How are you doing?

Robin

[Joy Cox]

Hi Robin, Had missed this thread. Trust a little time will put you back to feeling better with the new meds.

Thank God, you're in a milder climate than in the deep freezer in the rest of the states.

Hang in there sweet girl!!!

[Jules48cats]

Ailsa,
I was diagnosed with RA in1987,  half the fight is having a good doctor who listens to you.   It sounds like you have that now.  So great that you changed doctors!   
One thing with RA is that you have to try to handle Stress.  Learn to make time for yourself or to meditate.  Stress can trigger a flare.  Also if you have new symptoms either with your meds or just your body, call and let a message for your Doctor.  Sometimes it is important not to wait until your appointment.
Let me say too that they are making great strides in the drugs they are developing for RA, since I first got sick.
Now if only they would find something to work on SJS.
Take care
Jules

[harrigan]

Thanks Jules - I'm struggling with feeling sickly and overwhelmed at work so I could do with managing the stress better than I do at present.  Thanks for the advice - think I am just feeling a bit sorry for myself 

[Jules48cats]

Yeah I know I go through whole weeks where I feel sorry for myself espically since I am not working.  The lack of energy does not help with that either. 
I tend to go with the flow and sometimes I think I should be more forceful and assertive in my life. 
Oh well maybe tomorow. 
Hope things start to get better for you soon.
Jules

[Katybarstool]

Ailsa

You have been busy while I have been away! I hope school take good care of you, and arrange for you to get cover for your appointments. You have had such a wealth of good advice, so I'll just send you a hug.

Kathyx

[beverley]

Ailsa,

I am so glad you finally got a good rheumy - they are a Godsend.  My GP and rheumy have been having an ongoing tussle over whether I have RA and secondary or whether it is primary SJS.  I don't think I have RA.  I have no deformed joints just very large knees which can be painful on and off.  My hands, feet and neck have osteo (so my rheumy said) and they have been threatening me with MTX for about a year now.  

I'm also waiting for Occupational Health - it will be interesting to see if your LA is more efficient than mine.

I do wonder if there is a more stressful job to be in ... my rheumy said that she had no-one with SJS on her books who worked full time and particularly not in such a demanding job and I've managed to keep it up for 5 years but it really does wear you down.

I hope you don't end up in my situation.  I will keep my fingers crossed for you.  The steroids do make a difference but if it didn't move quick enough I ate it (or perhaps it was just an excuse to gorge!).


Best wishes

Beverley[

[harrigan]

Thanks for the hugs Kathy!!  Much appreciated 

Beverley - you made me laugh out loud about the eating on steroids!!  I am craving cake!  Not something I ever eat but I even dream about it and caught myself staring and smiling in the cake aisle at Marks & Spencers at the weekend!!!  You are right about the job though.   If the goalposts would just stay the same I would be ok but it feels like running a race where the finishing line gets moved further away every time I catch sight of it.  Are you back at school this week?   Hope you feel better XX

Robin, hope your meds change has helped.  Managing increasing this with decreasing that and brain fog makes it a challenge and a half!

[RobinBat]

 Med changes good and bad, The Humira good, although I don't take the 2nd dose till thurs. I swear I notice a big difference. Has not helped the swelling but pain is much better....

BP meds...not so good, pressure way up and pulse is also high, feeling my heart beat is so annoying!! Spoke to doctor's nurse today(gave it a week in case needed to accumulate or build up or something) the doubled the dose and we will see, I have to call back on thurs and let them know how it is going.

Of course I am working this week and next full time(40 hrs) so no time to go see her if she want to see me. Feast or famine no work  and not appts, work and appts....Oh well will work it out.

Robin

[beverley]

No Ailsa, I am not back.  My husband wants me to get signed off til Easter.  I am off for another two weeks anyway.  My body doesn't feel too bad, except urine infection and bad neck and shoulder, but mentally I am in a very wierd place and the fatigue is still pretty bad.

Our Ofsted was bad I think, and I don't know that I can cope with the constant monitoring and interference.  I had a class of 35 Y5/6 and keeping up with the marking is a nightmare, plus I am SENCO and Literacy Coordinator and I feel I chase my tail all the time.  Still don't know what to do about the future.  Have you had your Occupational Health appointment through?

Beverley

[harrigan]

Oh Beverley - it is so hard to get back on top of everything.  The emotional toll of the ofsted inspection and all the consequent monitoring is huge.  My heart goes out to you.

You have a huge class too - 35 is really too many to manage.  I think you are doing the right thing taking time off.  There is no half way in teaching, you have to be up for all of it when you go back as ther is no such thing as taking it easy.  I'm not surprised you are in a 'weird place mentally' - you re dealing with illness, stress and tough decisions.

Don't make any decisons till you feel comfortable.  Could you afford to lose part of your role - the SENCO or Lit Co-Ord?  It might make the teaching day easier.  The marking at Y5 and 6 must be endless. 

Just wanted to send you hugs and hope you start to feel better soon.  Staying off till after Easter would give you chance to really let go and unwind; it's not a bad idea.  Much love XX Ailsa

PS - Not heard from Occ Health yet - Head's PA said she would chase up today.  Thanks for asking

[Katybarstool]

Beverley

I'm really sorry to hear you are still unwell. I wonder, do you think think the urine infection is causing the tiredness and emotional problems? I think there's a good chance it's making some contribution.

Wishing you all the very best.

God bless.
Kathyx

[beverley]

Ailsa - no joy here on Occ. Health either.  My boss had a big meeting with staff about Ofsted report - but nothing said to me - I suppose he is trying to respect me being off.  I can't give up anything 'cos there are only three teachers and the headteacher in the school and we all have lots of responsibilities. 

Kathy - I can't help feeling my generally run down state contributed to the infection.  Today's my last day on tablets and not sure it's completely gone, so watch this space.

Beverley