I saw a new rheumy today after a 3 month wait. My previous rheumy was dismissive and confused and even my GP said he wouldn't like to be treated by him. Anyway, she was lovely but I'm feeling really overwhelmed. She asked why my raised rheumatoid factor had not been treated in 14 months since it was tested. I told her I didn't know it was raised. She asked what happened at my appointment in Nov and I tried to explain that the ESR rate had gone down so the Dr said I must be better even though I had requested the appointment as I felt awful. She said it has never lowered and could not see what he meant.
She really listened, checked me all over and felt all my joints and said she could see already that I have RA and the sjogrens is secondary. She sent me there and then for x rays of feet hands and chest, arranged appointments with opthalmologist podiatrist and ENT and sent me for more blood tests as she thinks my thyroid might also be a problem
She wants me to start straight away on methotrexate building the dose up over next 3 weeks. I also have folic acid to take on Tues Thurs and Sat, carry on with Plaquenil and amitriptyline each day and 6 weeks of a tapering down dose of pred. I'm feeling really wobbly about it all - so glad that she listened, explained and is treating me but also shocked that there is a lot going on that could have been treated already. I also feel worried about how I will remember all these tapering up/down/every day/only on a Monday drugs!! Will I ever get used to it all?
Sorry this is long and a bit muddled - I can't work out whether I am still angry with the first Dr, pleased with the new one or what! By the way - JAYGEE - her name is Dr Lovey (very apt!) and she is in Warrington on Mondays and Halton the rest of the week. You asked for a recommendation - I'm more than happy to suggest this lady after spending over an hour with her today, though I suspect all her clinics run over time!
Is there anything I should know about RA that I haven't come across through sjogrens? Really appreciate your support and advice here. XX Ailsa
Maybe you can set up your meds in those special medication dispensers. Whenever I got medication overload, I used those, set them up ahead, and no worries! Also, often the pharmacy offers that service to people...they set up meds.
Harrigan,
I am so sorry about the RA dx! I don't know much about it other than it is quite painful and can cause digits to become deformed. I've heard that sjogren can mimic it in many ways other than the deformality of digits. I'm sure you will find a massive amount of information online as well as from some of our members that have it, hopfully they will come along soon with answers.
Is this the first you have heard of having this?
I so wish you the best!
Peace & Be Blessed!
Bernice
It sounds like you have found a very good doctor now. When I have meds to take on different days or times a set an alarm on my cell phone. I go on the calendar day and set an alarm to ring at the time I need to take that med. You can set it up that way for months to come.
For more info on RA you might want to try the arthritis foundation website.
Sue
Good thing you switched doctors and found someone that can help you. I wish more folks would switch doctors when they don't feel their medical needs are being met.
Sounds like a keeper, Ailsa!!!!!! I am not surprised you are shocked and surprised, but it is a good thing that she gave you a full checking over and I am glad you got to see someone who cared.
Do you know if Dr Lovey (fab name) sees private patients, as it is a litle outside my area to be referred via NHS.
Hope you are ok. :-*
harrigan,
do you have the nodules on your fingers/toes? are they swollen? i dont but I have a terribly high ra factor- my rhuemy is watching me closely. I do have one finger where the knucke is a lump and hurts but it is only one finger.
glad you found such a great rhuemy,
lori
Ailsa, I'm glad you have a great rheumy now and will get the treatment you need. :)You'll start to feel better in a few weeks, so that's something positive you can look forward to.
As for keeping track of tapering, etc. of meds, I have a small calendar that shows an entire month when I open it. I mark the days I need to do a couple of meds (Clobetasol and Vagifem) and keep it on the table beside my bed. I check it every night so I'll know what's coming up the next day and then check it off as soon as I've done it. I'm sure you'll figure out a system that'll work for you, too.
Prairie gal
Ailsa, Bingo, you struck gold. Don't even give your old rheumy another thought. He is past history and although he didn't treat what you had wrong at least he did not treat you and make you worse.
Be thankful for a new rheumy who sounds like she has all her ducks in a row. She is doing just what is recommended. She is adding the Methotrexate and also the folic acid. The folic acid is to help cut down on the side effects such as nausea, etc that the methotrexate can cause.
Methotrexate is used for RA and also for Sjogrens and other autoimmune diseases. The plaquenil is frequently used in conjunction with the methotrexate plus the prednisone. Prednisone can be tapered off as the plaquenil kicks in. I am in the process of tapering my prednisone now. Just started yesterday.
I have a larger wicker basket that I keep the medication bottles of meds that I am currently taking. I have another basket that I keep the meds that I am not currently taking. I save these for an undeterminered length as there is always a chance that I could be put back on the med. Be sure to throw them when they are outdated though and keep out of reach of kids,e tc.
I use the plastic 7 day pill dispenser and fill it every week on a day that works the best for me. If you havae meds that are at different times have a plastic 7 day dispenser for every medication time so you don't forget and can always keep track of the meds.
When I start a taper dose on the prednisone I get a tablet and twrite down the dates and the dosage that I take for the whole taper or at least far enough ahead that I am not caught in a situation where I don't have a clue where I am or what I am doing with the taper. Do it any way you want as you know what you will understand and what works for you. I also have been known to mark the milligram that I need to take on each day on a special calendar. This is easier to do as you can count off the days and taper down for 6 months ahead, etc.
Please don't get bent out of shape. You have been caught in a situation where you really are not any sicker than you were when you went to the new rheumy, but you now know a heck of a lot more about what is wrong with your body by name. It is extremely common to have sjogrens, RA and autoimmune thyroid disease at the same time. I was on thyoid med for 16 years or so before I found out that I had severe autoimmune thyroid disease. Now I know why I had so many health issues that I did not understand.
Get your tests done and just go with the flow. Get a tablet and write down the tests your have and the date. Also write down the date you start new meds and any new health issues you notice that occur after taking them. You are so fortunate to havae a good doctor who is doing things to help you. Don't expect to feel better immediately but I bet you will feel better sooner than you expect. Good luck. Irish ;D
Ailsa dearest - what a day! You must be exhausted by all that information and not least because you met a doctor who listened, thought and responded. Definitely a keeper!
I think Irish is very wise to say that the new label doesn't mean that anything has changed. You're exactly the person you were yesterday, it's just that someone is really on your side now and trying to get you the help you need.
When I first started on a long list of meds I wrote a timetable for each day with timings for taking tablets, when I could/couldn't eat etc. It wasn't long before it all came naturally but it was good to have the reminder.
I have a friend with RA who has adjusted to Methotrexate just fine. In many ways our symptoms are identical - including joint pain - but her joints are distorted and mine aren't. It may be that you follow the SjS pattern rather than the RA one, but either way the new meds will help.
Thinking of you - Chickpea
Ailsa-I think you'll be fine when things get running smoothly. i was dx with Sjogrens 3 years ago. i had another rheumy just before tell me I was fine. Well, he was full..... My new rheumy put me on methotrexate and folic acid, plus prednisone to start. I swear that just before the second dose of MTX I could tell a difference, although small. My doc put me on Plaquenil a bit later. I no longer need the prednisone and I have had no problems with these meds. I take a lot more though and my dr said i had fibromyalgia too about 6 months ago.
I take a weekly med thing and it has 4 slots for each day and both hubby and I use one of these. Forget about the old dummy doc, I did mine. Lucy
I too have RA with my sjogrens, I take methotrexate and folic acid. I have had no side effects from it at all()although it does not seem to have helped at all!) I go back to dr. on thurs so we will see what she says as it's been 3 months since we started it. Will let you know thurs.
Robin
congrats on finding a really nice dr who listens to you and took appropriate time and care!
I agree with the pill dispensers-get one that is large enough to do a few weeks at a time to help cut down on hassle.
The pred taper is good news and hopefully you will be off soon.It can make you feel a little like you have the flu when you first start to taper down-so you might want to be aware of that-it can last from 3-7 days.Make sure to take the folic acid and dont forget it is VERY important with the MTX.
Good luck with the med tapers and changes and congrats again on finally receiving the treatment you need.
Glad you have got a diagnosis and the doc is treating you. Chickpea is correct that the primary difference we notice in our joints is that RA can leave you with some deformity after a bout of inflammation, while the joint inflammation from Sjogren's alone is less deforming. I have both RA and Sjogren's and take Plaquenil and methotrexate, as well as CellCept.
The biggest issue I had when starting the methotrexate was digestive problems - nausea, vomiting, and diarrhea. But you can increase the folic acid with doctor's permission and that usually helps.
Genko
Thanks for all the advice and support everyone - it felt good to be reminded that I don't have 'another' illness, just a new name and correct treatment.
My main issues have always been pain and fatigue; the sore eyes and mouth are an added bonus! My fingers, hands and feet are already swollen and mis-shapen. I didn't realise that the pain in my shoulder and elbows was the same but the new rhemy commented on the swelling there which I had not noticed and also my knees, which haven't troubled me yet.
I took my 3 methotrexate on Monday night, then my 3 pred, 2 plaquenil, 1 folic acid (and a partridge in a pear tree!) yesterday morning and felt ok apart from a bit queasy in the afternoon so I think it will be allright. I've also asked for a school referral to our Occupational Health so that I'm covered for any extra appointments as they are usually hard to arrange after school.
Don't know what I'd do without my friends on here. It's so good not to have to explain everything! Take care and thankyou XX Ailsa
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
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
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!!! :-*
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
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 :(
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
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
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[
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!
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
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
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
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
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