WHAT ARE YOU ON, IS IT WORKING? | Arthritis Information

I can start: I was diagnosed with PRA in med Dec 2007 - researched all I could find, spoke to doctors & read everything I could find. Along the way I found myself being pointed to different theories and finally to a doctor who may be able to help me ..... My first appt with I call her my PR GP (because I have a regular doctor for everything else) was in Mar 08 and the first thing that was targetted was my diet - so changed my diet to primarily gluten/dairy free to heal my gut. 2nd appt was in Jun 08 when I started AP Therapy - I started this before I read 'the book' it just made sense to me. The abx has been tweaked along the way and from Feb to Aug (6 mths) I was flare free it is now Dec 08 and I haven't had a flare since Aug. The Aug flare, for me, was only a little one lasting around 8 hrs brought on by a me eating stuff I shouldn't have when I was interstate at a wedding, so I really don't even count that one as a true flare. Before AP my flares used to last 3 days and the pain levels were around the 8 to 9-1/2 on the old painometer, I used to take tramadol, morphine & panadiene forte and anti-inflammatories --- I don't know why I continued to take all of that, because it just didn't work, the pain didn't even ease up, it was excruciating.

Plaq is not working , yet, only been about 4 weeks. ( will probably call for some predisone at some point, I can barely move) I shudder at the thought of steroids...... Great --- this is what we need ,,,,,, updates !!

Lets find out what is working and what isn't - let's all use this section to become informed !!

As I understand it Plaquenil takes a while to kick in ......

I am on pulsing MWF AP minocin, armour thyroid, and fosamax. Feeling the best since diagnosis in June of 2006, and continuing to improve.

Edited to change from synthroid to armour, I was on it for 20 years so its stuck in my mind. I am convinced my feeling better is also attached to the thyroid medication change, especially after reading the post in here that Hashimoto's has an infection quotient. I faxed that post to my MD and she called back, saying that was VERY INTERESTING. I love this doctor.

justsaynoemore2008-12-04 18:25:02Want to be clear, I was just recently DX, haven't even had my follow up visit with a very brilliant doctor at Cleveland Clinic. I know she will take good care of me. I probably should of taken the predisone she offered, I would not be so miserable right now...so it is my fault at this point. I have had one bad experiance with steroids in the past...ok...I just wanted to update my update...lol

This is a really great topic!

Here's what I tried and why they were stopped:

Steroids (2 diff kinds): irrational mega-bitchness. I'm talking rage here. Steroids are the devil.

Plaquenil: massive hair fallout

MTX: heart palpitations, severe stomach issues

Enbrel: lupus-like butterfly rash

Humira: hair fallout, cysts on face

Celebrex: severe stomach issues, dizziness

Current:

500mg Naproxen

5mg Vicodin

Plaxil (not sure of the dosage, too lazy to look right now. haha)

800mg Ibuprofen (aka tictacs)

Will be starting Imuran in about two weeks or so. Hopefully it will work wonders!

Anyone worried that it simply will stop working one day?? and do you have, or have you discussed, with your medical team a plan "B"??

I think this could be a very worthwhile topic ...... but I am a little biased ....lol

My regimen is in my .sig line. Seems to be working quite well for me.

My regimen is in my sig. line also...........Just recently added the plaquenil and still having some flares........I'm afraid of the biologics so I'm keeping my fingers crossed for the Plaquenil.

[QUOTE=MsLane]

My regimen is in my sig. line also...........Just recently added the plaquenil and still having some flares........I'm afraid of the biologics so I'm keeping my fingers crossed for the Plaquenil.

[/QUOTE]

Give it a few more weeks - it took almost 3 months for me before it made a difference.
I have been on methotrexate for a while now and I'm finally throwing in the towel on that (well my doctors are!) So I'm trying Arava plus Plaquenil.

My lifesaver is meloxicam/mobic. Keeps me out of pain.

[QUOTE=MsLane]

My regimen is in my sig. line also...........Just recently added the plaquenil and still having some flares........I'm afraid of the biologics so I'm keeping my fingers crossed for the Plaquenil.

Not surprised at your attitude towards biologics, you need to be very informed about that stuff.

I am just curious though - is anyone concerned about methatrexate & the like??

Maz-aust2008-12-04 20:50:41So Jasmine you haven't tried anything before your current regime??I feel pretty confident about MTX because it's been around for 20+ years. If the possible side effects happened often I think I be hearing about it. I'm using Rituxan and it is working very well. I was able to go 16 months between infusions. Since I've been on it I've been able to stop both MTX and prednisone.

It has stopped the progression of my RA according to the latest set of x-rays and RD considers me in remission. Both my ESR and CRP back that up............

I'm the odd one out here, have RA and PsA. Went on AP in 1998 and was on it for 6 months with no significant change. In fact my RF factor at that time was 1072. Stopped AP and started MXT and due to the possible side effects I became fearful and stopped.

Was put on Pred., anti-inflamm and I lived on them for several years and started to feel better. Spent the next several years sort of pain free but damage was being done.

Had a severe flare that lasted for 4 years both RA and PsA and was housebound using a cane and walker. Put on 45 mg. of Pred. and Enbrel. Didn't work, added MXT, still didn't work. Started Humira along with 12.5mg MXT - no change. Went on to Remicade and was up to 600 mg. of Remicade and MXT with huge difference in pain levels but inflammation remained and labs remained elevated. After discussions with my RD and primary we decided to go back to Humira and increase MXT to 17.5 mg. and within 2 weeks I had improved greatly; my labs were starting to come down quickly. Went to Humira weekly and MXT 20 mg. and in another 3 weeks I was in clinical remission, labs normal, no inflammation on MRI, no swelling, etc.

That was about 18 months ago and I'm still at the same level of remission. I just golfed 18 holes, do water exercise 3 times a week, yoga once a week, and walk at least a mile per day. I have damage, complications and cardia/pulmonary involvement. PsA isn't in clinical remission but I'm 100% better and living life to the fullest. In fact, I spend 6 months of the year on the beach in Mexico. The last 4 years have been an incredible journey with medications as my traveling companions but considering where I was, to where I am today......Lindy

20 mg. prednisone - now down to 5 mg

25 mg. pill form MTX - now 25mg. shot of MTX

90 mg. leukovorin - to stop hair from falling out

Humira - with all of the above, wasn't working

Enbrel - with all of the above, giving it 4 more weeks then going to Orencia

folic acid 1 mg

It's been a bit over 2 years and it's a bummer. I felt better on the higher

prednisone, but I hate it so I live with pain and stiffness on a lower dose.

My goal is to get off of the Prednisone altogether. I'm nervous about the

Orencia, but I'll try anything.

Hiya! ( waves to Oz across the ditch from NZ)

Currently I am on the following daily meds for my RA:

Plaquenil 400mgs

Sulfasalazine 2000mgs

Prednisone 5mgs ( down from 10mgs and that small dose worked miracles!)

I took myself off of an NSAID 3 weeks ago and am not having major problems but certainly I am noticing more pain in wrists and knees in particular. Up until now, the above meds have helped immensely since Dx in April/May this year but I am not sure how long it took for the Plaq and sulfasalazine to kick in. as the Pred took the pain away within 36 hours! Oh how I worshipped that little pill! I too want rid of it now .

Will be lowering pred further after visit to Rheumy on the 18th Dec. I worry about that!

I dont ever want to go onto biologics...but I may have no choice one day so 'never say never' I guess.

[QUOTE=Maz-aust]So Jasmine you haven't tried anything before your current regime??[/QUOTE]

No.

Mtx, Enbrel and Relafen.

The mtx/enbrel mix has been in place for about 1 1/2 years now and up until about a month or two ago, felt very good. Mtx was 15 mg most recently, but increasing back to 17.5 this week due to some increased pain and fatigue. I work fulltime and just finished my stressful time at work, so hoping the stress and hours are causing the increased activity and not problems with my meds. Time will tell.

Cathy

Remicade

MTX

tramadol

vicodin

gabapentin

is it working? well I dont use a wheelchair/scooter at Home Depot any more..I just lean on the cart.

I need Vicodin many days and Tramadol every day.

I take pred only occasionally, maybe 2 times a year.

Enbrel worked the best, but pooped out, then Humira, which was never as good, and pooped out.. Remicade is...ok at best.

I am going to start my pain diary again, because for the last 3 months my perception is that I have far more bad days than good, and I want to see what is going on..

Plaquenil 400mg

Celebrex 400mg

Sulfasalazine 3000mg

Flexeril 10mg

MTX 25mg

Oxycocet and Fentanyl when needed

The last few months havn't been the best for me, but not wanting to go on anything else at the moment.

I hope the plaq starts working for me soon. I am toughing it out, wish it wasn't through the holidays.Plaq starts working in about 3 months for most but at 6 months, it should be fully effective. Give this med an honest trial of 6 months before you give up on it. If at 6 months, you are not satisfied, go off it and try something else as this is as good as it is going to get with this drug. Remember, plaq works very well for those of us with mild to moderate disease but they usually put people on more than one DMARD when the disease is more severe. Oh, and plaq is the best med for acne. Guess I should add, was diagnosed with seropositive RA in 2005. Was on plaq for two years before going off about 2 months ago. Now take Vit D, 3000 u daily and Fish oil (Nordic Naturals). I know some donot believe me when I say I have MS. I do not know if my RA is mild or severe...To me it FEELS severe. I take a interferon drug, betaseron, I would have to decide to go off it before I could take a biologic. I don't know what I will do. The rhuemy Dr Rosian from Cleveland clinic and my nurologist Dr. Rammahon from Ohio state university clinic will have talk and give me my options. I will decide. For now I thinks RA is my biggest problem. Considering I am not symptomatic with my MS. Go to drag myself to the office now.

Maybe i'll post pics of all my meds.....later of course...

I was dx with seropositive RA in 2003. I am on...

Humira..............weekly

Pantoprazole ....40mg daily (Acid reflux)

Plaquenil ...........400mg x 2 daily

Sulfasalazine......1000mg x 2 daily

Naproxen............500mg x 2 daily

Folic acid.............1mg daily

Vitamin D ............50000 unt x2 weekly

Diovan HCT.........325/25 daily (BP med)

Hydrocodone......7.5/500 x 2 daily

Lovaza omega 3...1mg 2 tbs twice daily

Mxt ......................20 mg weekly (Stopped this 1 month ago High liver enzymes)

I have worked since dx. Have had alot of bad days. Feeling better since Humira. Had to go to weekly injection after three months of every other week.

George

My RA began in February 2007, with severe problems in both shoulders. My knees gave out in August of that year. I began plaquenil and AP (minocycline) in October 07. (along with celebrex for pain at that time, and pepcid for my very unhappy stomach with all those strong medicines).

Currently: minocycline (100 mg, M,W,F only)

plaquenil (200 mg daily -- about to cut back to every other day)

celebrex -- once in a blue moon if I have overdone exercise-- rarely need it

pepcid -- discountinued -- no stomach discomfort anymore

lots of supplements: multivitamin, fish oil, probiotics, vitamin c, DHEA, bioidentical hormones

a very healthy diet -- tons of vegetables, fruits, whole grains, fish, poultry -- little meat, no milk -- (did food allergy testing)

Best of all -- I feel great -- work full time at a high stress job (VP of IT), still raising my family of 6 (although they are older now -- the youngest 3 in college), do yoga regularly, ride my bike, lift weights, dance like a fiend. In the summer of 2007 I could barely turn over in bed. I am not perfect -- but RA does not get in the way of my life anymore. I have 3 great doctors (internist, rheumatologist, natural medicine physiatrist) who got me my life back.

Bonnie

I am on nothing. :( notta

Not anymore. After my stomach surgery and some unforseen problems I cannot take any meds I use to for arthritis. I don't know how long. And I can't even seem to find a doctor willing to give me pain meds. They just don't give them out down here. Told me tylonel. Yea right that helps about as much as rock climbing helps. So the only thing I am on right now is for nausea.

[QUOTE=JasmineRain]

Give it a few more weeks - it took almost 3 months for me before it made a difference.
[/QUOTE]

_____________________________________________________________________

[QUOTE=JasmineRain]

Originally posted by Maz-aust
So Jasmine you haven't tried anything before your current regime??

No.

[/QUOTE]

________________________________________________________________________

Jasmine, I thought you said you hadn't tried anything else??

Oops !!

Maz-aust2008-12-08 17:00:03Ok - this thread seems to be working !!!

Now does anyone so far have any questions ???

eg - Perhaps how long it took to kick in; or What side effects you had/have if any, etc etc

To those of you who are taking meds (any meds whatsoever) to help with the symptoms and are succeeding - great news!! I am so pleased for you.

for instance,

Lyndy - good for you!

Lyndee - hi from Oz and hope you have a great holiday time!

Bonnie - great story, keep on keeping on!

[QUOTE=Maz-aust][QUOTE=JasmineRain] Currently taking 500 mg of Chloroquine Phosphate. Have only been on this for two weeks. Was on generic form of Plaqunil for several months. Had some issues with it that got so bad i had to quit taking it.

Was allergic to Arava. Took Metheltrexate for a while broke out in a bad rash. It made my knees itch from day one. But i was walking and i like walking.

I also take verying degrees of prednisone usually 10 mg. daily. Also i take Vicodene for pain.

I have RA every where in my body. All of these things help some. My feet, ankles, knees, hips, low back all have some swelling in them. Also my shoulders, upper spine, elbows, wrist and hands. Also jaw swelling. I have Sjorgren's dry eyes, dry mouth and sinus problems. The medicines do help. I do expect things to get better. I could certainly not do anything at all without the medicine.

Enbrel-not doing a thing

MTX-seems like the same as the Enbrel

Prednisone-more than any human should be on and not a single doc seems to care that it's killing me. (started at 100mg in July, made it as far as 45mg now in terrible pain, fatigue is awful, and muscle wasting I won't get into that one.)

Celebrex-Like really expensive advil

Basically I'm saying that not a thing, other than the prednisone, is giving me any help. And the prednisone has caused me to develop glaucoma and high blood pressure since being on it. Also, makes me eat everything I see. Of course if the glaucoma gets worse I won't have to worry about seeing anything anymore.

I might be a little bitter...please forgive me I don't mean to take it out on you guys really. I just need to vent is all. That and find a doc that seems to value human life.

Bob

Remicade infusions--not working, really tired, running fever, still in pain

Prednisone--getting fatter by the minute

Lodine---helps with the mornings

Bob how many doctors have you seen? Not to suggest that getting another doctor will help any. Sometimes you run into one that is worse than where you started. Well if this does not work they may move you on to some other stuff?

How long on the Enbral?

Getting ready to move on to my fourth rheumatologist now. Was almost killed by the first, the second didn't seem too interested in treating me at all since she never changed my meds when they stopped working, and the third gave me a monster dose of pred. that is causing more problems than it's worth. I've been on Enbrel for three months now and nothing seems to be happening. Nothing positive that is.

I can say that I now believe that remission for me is just a dream that will never happen again. I guess I had long enough without problems so now it's time to pay up.Hi Bob, clinical remission is always possible. I've told and retold my story on this forum but to make a very long story (over 10 years) short, I'm now in clinical remission. I've seen 5 RDs since 1985 (when symptoms started.) I also have complications from long term Pred. use - cataracts and adrenal insuffiency. The most serious of my complications are from RA - pulmonary and cardiac. Don't give up. Lindy[QUOTE=LinB]Hi Bob, clinical remission is always possible. I've told and retold my story on this forum but to make a very long story (over 10 years) short, I'm now in clinical remission. I've seen 5 RDs since 1985 (when symptoms started.) I also have complications from long term Pred. use - cataracts and adrenal insuffiency. The most serious of my complications are from RA - pulmonary and cardiac. Don't give up. Lindy[/QUOTE]

Let me second that...I've had RA for 9 years and while it took a long time to get things under control........ It can take quite some time to find the right combo of meds. I tried several before Rituxan and none of them worked very well at all. Now, with Rituxan, I have been able to stop using both MTX and prednisone....

Lindy is right, Don't give up.........I never thought I would feel this good and be doing this well Since mid September

Darvocet- doesn't help pain. Took to much of the hard stuff for too many years w/ back and kidney issues.

Flexeril- stomach issues

Diclofenac- stomach issues

Celebrex- Doesn't work

Sulindac - Gave stomach issues, but readjusted food and taking it timing. Doing the most good now, but still having daily flares that sometimes easy off after 3 hours at work, but comes righ back in the evening.

Heat is my friend.