New & seeking feedback | Arthritis Information

Hi! I'm new to the boards.

Here's a bit of background:
-double mastectomies 12/2005
-double simultaneous hip replacements 08/2006
-right shoulder replacement 07/2008
-hypermobile joint disease (~Ehler's Danlos family)
-eczema and allergies gallore

...oh yeah, and I just turned 50! <insert BIG grin here>

I was always dx with oa a few years ago and now have been dx with BOTH oa AND ra. (They tell me that is rare...) I will be [most likely] starting meds very soon. Here's where it gets tricky... since I have been through so much already, I no longer can take/tolerate steriods - so NO pred. We think the new rhuemy will begin with mtx and folic acid (leucovorin). I'm really just not sure what to think or feel at this point. During the last appt with specialists at Barnes in St. Louis, we discoved and confirmed the ra and now (along with the oa) in just about all joints and also my cervical spine area (moderate with narrowing).

I / we are hoping to find something that might "push" me into remission or at least slow the progression.

Any feedback, insights, things to ask the new docs, etc. would be appreciated.

Thanks! Looking forward to moving beyond this and finding life outside my illnesses!

Wow.. sounds like you're the bionic woman

Glad to meet you... sorry you needed to google us up!

This site is full of information... pages and pages of discussions regarding all types of combinations and medications... search here for anything that strikes your fancy!

You will, believe it or not.... find someone who has RA and OA as well... I can think of at least two... and I'm certain they will present themselves to you.

ALso, feel free to ask questions.. we like questions around here... and we like answers!!!

1st question to you: Do you like the sea? Solas, What your Rhuemy is recommending with the MTX and Folic is pretty much the standard first line of attack with RA.
I know from my own experience that MTX can take months to fully do the job that it is prescribed for. You will have to be prepared to let time pass while the drug takes affect.
Folic is also important to take when on MTX.

Welcome, and hope that ypu can get on top of things...
Solas, welcome! You have had your fair share, no? How brave you are to have been through so very much! Your attitude seem so strong and positive despite all you have been through! Hi Solas and welcome to the forum. I also have RA/OA. Have had RA for many years and been through many of the dmards and biologics. MXT and folic taken early in the disease process can slow or help you to achieve remission. It's not unheard of to take 3 dmards and maybe add a biologic later on if needed. There are dozens of combinations of meds and when you read the forum you'll see that almost all the combinations are represented on this forum.

You've been through an awful lot in a short period of time. I can't imagine. I'm surprised that you had hip replacements simultaneously. Is that usual? Recovery and PT must have been pretty interesting. Keep us posted on your progress. Lindy

Welcome!

Prednisone, MTX and Folic acid were my first line of drugs....had to eventually add Humira, when that stopped working, Enbrel, when that stopped working Orencia.

Everyone's diseases are different and meds work differently on everyone. You may find your magic combo straigh away or may have to have patience until the right combo helps you out.

Good luck

Hi Solas..welcome!

Sorry you're having to go through so much...good luck with the mtx...hope it works for you! I've been taking mtx for over 17 years now and it's worked really well for me.

Welcome Solas.

I have both RA and OA. I don't really think it's that rare at all. I however have had RA for many, many years but OA was just dx'ed with in the past few. It's just my knees that they know of right now....but it's there.

MTX sounds like a scary med; but lots of us here have used it successfully for years. I used it for a long time before having trouble with my liver panels returning elevated. I was taken off of it and they have returned to normal. That happens sometimes. I do well on Humira alone so we haven't added it back in as of yet.

Glad you're here.

As the others have said MTX is the most common first line medication we have. Its also been very well tested so its side effects both short and long term are well known. You can get through RA without using steroids so don't worry about that.

when is your next appt with your rheumatologist

I too have both OA and RA, the OA I can definitely blame on the wear and tear of age, the RA would seem to a familial link.

Welcome aboard.
Solas welcome-

I have a cousin who has had a double mastectomy, like 10% of mastectomy patients. So glad she and you are doing well.

I also have OA and RA. I don't know anything about MTX because I am on Antibiotic Protocol but others do.

I also have been dealing with eczema, like you.

Take care.

Greetings and thanks to all of you for responding to my post!

It is so very good to connect with others. I am very curious to find out if indeed the new RD will in fact start me with the basics - mtx, etc. as I cannot do the steroids anymore and my boyd and joints have already been through so much.

We really have to find the right meds to push me into a remission or I will be facing more and more replacement surgery very soon. And goodness knows what else might be lurking around the next corner...
For those of you with the combo oa and ra - which came first? Mine was oa really just a few yrs ago and now the ra... curious....

Babs10 - I have never been at sea, however, I do love water! LinB - yes having simultaneous bilateal hip replacements is somewhat rare and not everyone is a candidate to have it done. Being as young as I was, 47, I seem to fit the criteria. It was the most amazing adventure I've been on! Buckeye - next rd appt is tomorrow. we hope to come to some understand of the next phase of my tx and possible meds. I'll be posting once I have some more info to share. Spelunker - which came first for you the oa or the ra? at 47 when i had my hips replaced they said i was way too young to be going through all of this at such a fast pace. then less than 8 months my rt should was bone on bone! had it replaced last july. now it seems ra has entered the picture so we will be dealing with something new and mixed with the already progressive oa status. Bodak, Waddie, Debrakay, Kelstev, Lovie (hope i did not miss anyone) - thank you all for replying to my post! and sharing your info.

I look forward to share with all of you and chatting and exchanging stories of our journeys!
Solas2009-05-28 17:21:27Solas, RA diagnosed, then PsA, then OA in about a 10 year span. LGreetings!

Well - interesting news... we saw the local rd and he says i do NOT have ra.... but but but... the other doc and rad doc said i DO.... so am very confused. So we are off to see the third specialist at Barnes.... then we go with it... and move on with life! Either way, i am in pain and it progressing daily. So - i want to thank all of you for your insights and replies! I plan to stay on the boards either way as i see there is a link for oa as well.

I just want to find remission and stop this awful disease from take my joints out one and two at a time!!! Solas, how confusing to have RDs with opposite Diagnosis. What about your labwork, didn't that help them? The joint damage from RA is different than OA, as you know by now; RA is bone erosion, OA is loss of cartilage. You'd think they could see if RA was there.

I have some OA in my feet, nothing like your big troubles with it. For RA I take Methotrexate subq and of course Folic Acid since Mtx uses it up. I did have one side effect for the first 3 weeks; my mitral valve prolapse didn't like it and gave me heart palpitations. Then the morning I had an appt with my cardiologist, I woke up and they were all gone. Luckily, he believed me and wrote a standing order on my chart that if that happens again, I can just go in and get a 24hr holter monitor put on with no appt. Since then, my cardiac problems are minimal and pretty stable thanks to my med for it, definitely not a concern. I think many meds just take an adjustment period for the body. I had a 4-5 day ordeal getting used to my Ultram ER too, a little less each day, now no problem.

Oh, I guess there is one major thing about when I started Mtx: I saw no improvement at all for many-many months. I still needed help dressing, eating, opening doors, with my hair, getting up and down on chairs, etc. I hung in there though and now, though I still need assistance, it's minimally and varies day to day and times of day.... nothing like it was.

I'm so sorry to hear about your very hard road in your life. How long ago was your breast cancer? I hope it was many many years ago and you are considered cured; you have enough going on! I don't really have advice to give you, just hugs,

CathyMarie

forgot to say, I too, can no longer take steroids, or NSAIDs either... anaphylaxis from both.

CathyMarie2009-06-01 02:00:42my sea question was because SOLAS: Safety of Life at Sea

I'm assuming your blood tests are all "normal" and therefore you have the mixed diagnosis.

I am sero-negative and had to be DX'ed while in flare by the fluid removed from my knee. What testing have they done to ascertain your disease?

as CAthyMarie said: was the need for surgery due to bone on bone erosion or cartiledge?

Best to you,

babs

[QUOTE=Solas]Spelunker - which came first for you the oa or the ra? [/QUOTE]
OA first, by fifteen or more years. I was not necessarily kind to my body growing up and into my young adult years. There is significant wear and tear on many of my large joints.

Best wishes for quick answers and speedy relief, Shug
RA (I was 23 at the time) was first in my case.....OA was dx'ed about 10 years later. Solas,

I have both OA and RA. My OA in my cervical spine was diagnosed about 10 years before my RA.

Like Babs, I'm curious. Were your lab tests normal?

Welcome Solas- sorry you have so many different issues going on. I wish you all the best in getting them under control. SOLAS OH MY GOODNESS WOT A LOT U ARE DEALING WITH.I HAVE ALSO DONE THE MTX COMBO BUT NOT NOW WENT THROUGH A LOT OF COMBOS AND NOW ON ARAVA,CELEBREX,SALAZAPIRINE,PREDNISALONE.HAVE HAD BOTH KNEES REPLACED AND RIGHT SHOULDER 2 AND A HALF WEEKS AGO.LEFT SHOULDER MABE IN 3 TO 4 MONTHS.I ASO HAVE RA AND OA,RA WAS FIRST I WAS 21 THE OA CAME GRADUALLY OVER THE YEARS.I DO HOPE U GET THE RIGHT DIAGNOSIS,AND IT WOULD BE GREAT IF IT WASNT RA.I WISH U WELL AND U SOUND LIKE U HAVE A GREAT ATTITUDE KEEP IT UP.
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