new rheumy - new label

[harrigan]

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

[inga]

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.

[Bernice]

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

[itssue]

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

[Epson]

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.

[jaygee]

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.   

[lori]

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

[Prairie Gal]

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

[irish]

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

[Chickpea]

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

[eyeamdry]

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

[RobinBat]

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

[kim31072]

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.

[genko_b]

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

[harrigan]

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