Question for Roxy and others | Arthritis Information

I'm like you with a drug induced remission for about 15 months.  I also have mini flares with swelling and pain which last about 3 weeks.  I've had 3 episodes like this in the past year.

My RD is great with tinkering with my meds.  Since I am a senior citizen he tries to put me on as few drugs as possible.  When I started this journey, I was on mtx, motrin, and pred.  Finally weaned off pred, and then found out that I was over sensitive to Motrin and all other nsaids, and it caused my legs and feet (and everything else) to swell.  In order to take the Motrin, I also had to take Nexium, and meds for high blood pressure.  The pain and swelling in my ankles and feet and back and neck caused him to prescribe Ultram and Tylenol 3.  When I stopped Motrin, I also discontinued Nexium and bp meds.  The swelling went down, and I lost 7 pounds.  Soon, I felt I felt well enough to discontinue the narcotics.

I have steadily increased the mtx, since that's all I take now, and have felt better these past two months than ever before.

I wonder how many of our symptoms are related to drug side effects?  I feel fortunate to have such a clever rheumatologist, who is so well informed on the various drugs.

Good Luck to you and I hope you will have a nice long remission!

Ellie

I started on Plaquenil in 2004.  Two months later, I added Relafen.  I was pretty much disease free for about 2 years, except for a few flares. 

I then tried to add Sulfasalazine but had terrible abdominal pain and bloating.  I stopped the Sulfasalazine.  I was too afraid of methotrexate, so I continued to do burst-and-tapers of prednisone when a flare got out of hand. 

I finally gave in and started methotrexate last September.  I actually thought the methotrexate was making me worse (RD says no).  On 12/27, I took my first Enbrel shot.

So, right now, I'm on Enbrel, Methotrexate, Plaquenil, and Relafen.  I also have some Lortab I take only when I have flares.  I'm hoping the Enbrel works so well that I can stop the Methotrexate.

So, I guess most of the first two years I felt like I had remission.

I had an appointment with my RD yesterday and we reviewed my labs.  All RA markers were negative, the first time in years.  According to my labs I'm in clinical remission.  I don't have any swelling, pain or inflammation except from damage.  This is the first time in 10 years that I've been in remission!!!  I almost hate to type the word, am afraid of jinxing the whole process.  I'm going to have an MRI of my hands and wrists to see if there is any synovial fluid or inflammatory process going on that can't be seen by physical examination.  I may still have to have meds tweaked if MRI is positive. 

I first noticed that my brain was working and my mind clearer and then the physical aspects of the disease got better over the last 2 months.  I started Humira and increased MXT to 17.5 mg. 2 months ago.  I was put on AP therapy 10 years ago with no success, then only NSAIDS for a period of time, onto MXT with no response, back to NSAIDS, put on Enbrel for a year, then Enbrel and MXT no response, and later put on Remicade and MXT with some response but not enough.  RD changed to Humira and MXT and now he feels I'm in remission.  IT'S BEEN A LONG 10 YEARS.  Lindy

I really think the MTX made me worse...I have done much better overall since I stopped taking it. Even on 12.5mg weekly by SQ injection I was having severe mouth ulcers that took weeks to heal, mild hairloss, and I would say moderate to extreme chronic fatigue.

Justsaynomore- did you know that Tonic Water contains Quinine? My RD suggested it for my leg cramps and it worked wonders. It is availabe in sugar free too..any tonic water is going to be an aquired taste but a sqeeze of lemon and pleanty of ice helps. I had a glass each night before bed and it worked from the first night. I used to have leg cramps so bad that they would wake up and I would fly up off the mattress in excruciating pain. I had started having nightmares because I was afraid of the cramps. The tonic water was a cheap and easy fix.

crunchy - thanks.  Yes I knew that.  It turns out the leg cramping is being caused by a fairly large nodule in my right hip, along with the undiagnosed osteoporosis.  I just started treatment for that a few months ago, so I am crossing my fingers (hold it, I cannot do that anymore :) that it will stop this cramping.  I want to audition in Hollywood because when it hits, it better than any special effect you see on the big screen as I had no idea your leg, feet and toes could cramp into these positions. 

All these little pieces of things found over the years are coming together and making sense.  I probably will have to have a surgery on this nodule if this continues as I am losing two toes in muscle mass and strength.  It's always something.  Take care ~~ Cathy

Tonic water is great for night time leg cramps, but some folks are allergic to quinine.  Be cautious, since it might cause a rash.

Glad you found something that works.

Ellie

Lori, I think we discussed this on another thread but I'll go again. 

I've cut my meds by 1/2 in the last year, and yes, I feel so much better.  I stopped Celebrex, Protinex, Prednisone, Tramadol, Ultram and something else but I can't remember what.  I know I stopped 6 meds.  I took them out of habit and not need.  I posted before that it would be great if everyone started 2008 by reviewing their meds with their doctors for need and contraindications.  Lindy 

I use CVS and while I am sort of at an advantage because of my nursing background, I absolutly love my pharmacist. I really feel like they pull out all the stops when it comes to getting things refilled, or just having things ready when I need them. I can call with questions and my pharmacist will make the time for me. I have been very satisfied with them.

I think it is an excellent idea to use the new year as a time to review medications with our docs. For all of us here, the internet is also an invaluable resource for current medication information.

I really do thing that the MTX was doing me more harm than good. It never worked alone, and the Humira is doing fine without it. My RD was a little shocked when I told him I wasnt taking it, but after time went by he relaxed a lot about it. However he did say if I started having trouble he would want to add it back in...I'll cross that bridge if and when I come to it.

Yes, CVS does check for interactions.  I used to get all my prescriptions from them.  However, I started using a mail-in pharmacy for my maintenance drugs several years ago.  Now, when I want to check interactions, I use:

http://www.drugs.com/drug_interactions.html

As for me, I just take Advil for my RA. 600 mgs every 6hrs and I'm good. My RA is mild but the OA is servere. So far the RA is only in my fingers and toes.

Lindy, glad to hear that you're in remission. Hope that it lasts for a very long time.

Crunchy, I'm praying for you. You deserve a break.

Take care,

Marisa

I was recently taken off MTX after 18 months (oops forgot to do the baseline hepatitis tests first) for a two week weanoff because of high liver enzymes.  I had been told to cut it by two tabs for two weeks, and that one high enzyme came down, but another one went abnormal.  So then, a two-week weanoff of MTX and minocin.  Then retested and they have normalized except for a low B/C ratio and a new high thyroid, which was removed 5 years ago. 

But I took the first MTX two tab drop time period to drop the minocin down from 7 times a week to the MWF pulsing twice a day.  Then the rheumy (who refuses to recognize minocin, it says right on the patient insert its used to treat RA) said to resume the MTX,  but not the minocin.  I fired him finally this week, the moron.  The weanoff wasn't pretty, and I started realizing that the MTX might not have been working too well for me. 

I also reduced all my PRN meds too as I was leaning on them.  I just stopped the plaquenil and went to pulsing minocin once a day.  I am feeling the best I have in months.  I think the MTX wasn't working and this clown told me initially I would be on it all my life, so I guess he was a one-drug wonder rheumatologist.  I am glad I never have to see his face again.  Plus, he missed the osteo problem/dx, ordered up experimental osteo blood work (I was thinking why do you do bone density tests if you can find it via blood work), and my insurance refused to pay for it as its experimental.  I appealed, and lost, experimental.  Thanks, doc, like I can afford experimental blood tests you don't even explain the results of to me, but you will experiment on me, probably to write a paper for more personal glory on your resume.  You flunked Basic RA 101. 

My primary whom I love and is the best medical doctor in the world has taken over all my care as she has been appalled at what has happened since I started with her about a year ago.  That's all I ever wanted, an integrated group of specialists working together, and could never achieve it because of their in-fighting and egos.  So, I am down to my wonderful PCP and the opthamologist, who first suggested MCTD to the wacko first rheumy I saw 3 years ago who refused to even test me, and sent me to the psychiatrist.  Another rheumatologist moron.

I am scared I am feeling so well.  This usually means I will have a huge weird health problem pop up, which is my usual MO.  Or maybe I have it right finally, and I am on my way to getting better after years of floundering around and 18 months of treatment by a quack rheumatologist.

crunchy, great thread and take care ~~ Cathy

I actually love tonic water so I will start drinking it.  Since I have had bronchitis, I have been forcing myself to drink 6 - 8 glasses of water a day.  That seems to be helping me feel better.  I started Lyrica again and day nine - I am walking.  I cannot walk any distance, my legs are so weak from not walking and I have bad overall fatigue.  I have no muscle left in my legs which is so depressing as I had beautiful legs from being an avid hiker.  Anyway - I am excited I am walking instead of the gimp - ridiculous - kind of throwing my body one motion at a time - my arms flaying and knees sticking out every which way and so so so painful.  I have to appreciate the little steps.  Right now I am concerned as I think I have an ulcer from all the Nsaids and aspirin I have been taking.  Last night I vomited what looked like coffee grounds.  I know what this means from being an EMT for years.  I am just seeing if I can control it and the bleeding stops by quitting irritants to stomach lining.  I don't want all the scary tests.  I just got out of over a month of tests on my heart.  I need a break from tests.  If I continue to see signs of possible internal bleeding - I will go to hospital even though I have no insurance right now.  So I do dream of getting better.  Lyrica has been a lifesaver for me but it quit working last time I was on it.  It dehydrates you very badly so I am hoping drinking lots of water - I can continue on Lyrica and increase the dose as needed.  I have a lot of RA damage but I guess it was the fibro that was keeping me from walking.  Now if I could just get the energy to walk in the kitchen.

I got the job I told you about.  The criminal background check came back.  My boss does not want me to start being sick with bronchitis - my cough was ugly.  Thing is - cough is way better - just really fatigued.  I emailed my boss this morning asking if I can start with just one student.  I hope she will do this as I want to get back in touch with the world.  I have spent almost two years now in my beat up recliner or in my bed

So the answer to the begining of this forum is yes ! I have been in remision for a lot of years until my meds got changed.

Three and a half years ago the RD in Cheyenne started me on Plaquinil just to see what would happen.  Well, I had a huge reaction to it although it did help with the pain and swelling.  I was told at that time to come back when I was really sick.  He only looked at my RA and Lupus levels.  Neither one was "high" enough for the dx. 

I was dx with Psoriatic Arthritis in Jan. 2006, but my levels for Lupus were up even more then.  So, I am not sure if that is being totally overlooked or what.  I sometimes wonder if that is why I am not controlled even now, and feel crappy unless I have extra help.

A year ago in Feb. I started on MTX and have built up to 20mg now back down to 15mg(due to liver stuff).  I started Humira in June and failed at that by August.  Started Remicade 500mg in Sept. through Dec.given 700mg, failed on that too.  Now am on Embrel 50mg shot once a week.  We shall see.  So, in a year...I have not been controlled.  I have had two times that I have taken Pred.  now and then in the summer. 

Remission at this point seems like a distant dream. 

This is a great thread because it's giving me more insight, from real people, into the problems/SE's associated with the majority of RA meds.  I've read so many published papers, clinical trial results, medical books,studies, etc. relative to each and every one of these meds, singly and in umpteen combinations that my brain has become loopy just trying to sort out which drug or combination thereof is worth the risk to benefit ratio to me.

Not only are there many different types of RA and  different reactions to the same meds within each category of RA for each individual but I have found, in my own experience with inflammatory RA diagnosed just over a year ago now, that I have had different manifestations and reactions to this condition within my own body over these last 13 months.  For example: I went through a period of about 3 months when the pain in my knees and feet was so bad that I could barely walk.  Then, all of a sudden, that pain was gone and my elbows would flare up for a month or two.  The only constant throughout my RA journey has been the pain and inflammation in my hands/fingers.

The only serious med I have put into my body thus far is pred and I'm holding at 3mg/d. This is less than the body produces on it's own in a day, so I'm planning on tapering this off soon.  I have had many injections of 0.5cc Kenalog into various joints and tendons in both hands/fingers.  This is half of what would normally be injected but I have a doc who is on track with me about staying low.  With the exception of my wrists, I have never had to be injected in the same site more than once.  Some of these injections are a year old, some 6 mos., two from last week.  I see an orthopedic hand doc for these injections.  He told me last week that people with high titre RF inflammatory RA normally have more tendon than joint involvement, which is absolutely true in my case. He also told me that as long as I'm getting adequate relief with the injections, I should hold off from putting "the poisons" into my body unless my lung involvement increases. My lung involvement is central to my decision to hold off on currently available meds as the SE's are not worth loosing my lungs over. I am waiting for approval to try Minocin.  The AP protocol, although the least risky of the lot, certainly isn't without some nasty SE's, including pulmonary, but I want to see if it will bring my numbers down.  Sorry so long. 

K.

Edited to remove some of the "long".

Shelly, don't think that remission is just a dream, sometimes it just seems to take forever.  I'm finally in remission and it's taken me 10 years.  I don't mean to scare you but sometimes it just takes time.  Some of my issues were denial, meds not working, not wanting to take the meds, not being compliant, and thinking that I knew it all.  It's been a crazy 10 years.  I don't know how long this will last, but I'm going to enjoy it the fullest.  Humira may work for you as well as it's worked for me.  Lindy 

Thank you so much for the encouragement, Lindy.  I know that we are way behind the power curve because I have had this without treatment for ten years or more.  I just thought everyone has pain and everyone feels tired now and then.  When the RD told me to come back when I was sick...that confirmed my theory to me and really confirmed the hypochondria to my hubby.  I am so hoping the Embrel will work, but if it doesn't we will keep trying other things. 

Thank you so much for the encouragement...you are great!

Katalina, I understand being scared of the meds.  I have a whole lot of drug allergies, and have tried to train myself not to panic when we try something new.  I still am reluctant to change something that I am already taking.  If it works...don't fix it, but I may be facing that with my BP now. 

OK here's the short version of the meds I have taken:

Started off with plaqenil for 8 months. No help Was given pred a couple of times and then I refused to take it anymore because the side effects were too severe and it was a short term fix. I tried sulfasalazine, & mtx. Was allergic. Tried minocin for 6 months. No help. Tried humira for 8 months, started off working somewhat but then fizzled out. Now I am on enbrel once a week. Started 7 weeks ago and doing pretty well. Morning stiffness that used to last for hours it almost gone. My energy is up and pain is down until the afternoon when I have over done it. I started off with hand and feet problems but ra has traveled all over and plays tag with all my joints. I still take relafen and vicodin for pain but life is way better then it was 2 or 3 years ago. I pray the enbrel keeps getting better every week. Tomorrow is my shot and today, I have felt a little run down and my shoulders and feets have been sore. I also have a hard time with cold/rain/snow/humidity and makes me hurt no matter what. Which rd said usually happens to a lot of people.

Hi all,

I have RA/Lupus and I believe the Lupus is in remission as I have had good readings every blood tests for years now and the RA I would say is under control rather than remission as it is very up and down, sometimes flaring and other times aggravated. I was put on Mtx for a few years, gold injections, plaquenil, anti-inflammatories, prednisone initially and found the gold injections ended up making it worse, the mtx stopped working, so they changed me to imuran which only gave me skin cancers (I have fair skin) so now am back on mtx again and it seems to work better the second time around for some reason. It's alot of trial and error I think. Just as long as the rheumatologist doesn't give up on trying to improve it, then I won't.

Katalina - I have found there is nothing consistent with RA.  In the beginning it was always my hips.  Now - who knows what will hurt.  My shoulders are shot - I cannot lift my arms above them and my knees and ankles are a real problem.  I was also getting very scary chest pains - turned out to be the joint in my chest.  I also have had joints in my neck flare.  When I try to wean down from pred. I swear - I feel every little tiny joint in my body. 

Right now - I am dealing with an ulcer that is certainly from the Nsaids I have taken since onset. 

Another consideration is secondary illnesses.  Since RA I was dx with fibro.  It is very difficult to tell fibro symptoms from RA except taking Lyrica for fibro has helped a lot.

Good luck on your journey.  I don't mean to be pessimistic - it is just everyone has a different experience and it seems none of us are exactly alike.