I have Rheumatoid Arthritis. I have had the opportunity to see both a family practice physician and a rheumatologist.
My mother passed away in June of 1993. In December of 1993 I traveled to my hometown to visit with my family. The stress level was fairly high and there were minor problems between my father and his grandchildren. Subsequently my sister and her family left earlier than expected and I was feeling quite emotional. Around the 30th of December I came down with what I thought was a sore throat - on the 2nd or 3rd of Jan I called the Advice Nurse at my local clinic and was told to gargle with salt water and drink a lot of liquids, which I did - the throat was pretty raw, but the Nurse didn't think it sounded like strep.
A week later my husband got strep throat - was tested and immediately started on antibiotics. I called my Ob/Gyn and told him the story and he prescribed penicillin for me which I started taking and finished (10 days).
I visited that Dr. on January 31 at which time I mentioned some problems in one knuckle and the left side of my left foot. He thought the knuckle might be arthritis and that the foot problem should be addressed by a podiatrist.
The swelling and pain increased to a few more joints and by mid-February I had a hard time walking when I got up in the morning. I made an appointment to see my regular Dr. (Stephen Lane) and he thought it might be rheumatic arthritis. I was started on Ibuprofen(600mg - 4 times/day), which didn't seem to help much and then put on Feldene (piroxicam) which helped at first, but then seemed to be less and less effective. This was over about a two month period. I experienced dizziness due to the Feldene. Blood tests showed an active immune system and the Rheumatoid factor. More joints started giving me problems and Dr. Lane suggested I see a rheumatologist.
I then saw Dr. Arthur Bobrove who immediately changed the Feldene to Relafen and added hydroxycholoroquine (plaquenil). He also gave me two shots of what he said were hormones to help my body produce more of its natural cortisone. He took x-rays of my hands, feet and chest - he later said these were all fine. He drained some fluid from my left knee to see what it looked like - it was thick and yellow and there was a lot of it. The day after the shot I woke up with hardly a pain or stiffness, but the following day I was back to the same amount of symptoms.
A few weeks later, one of my knees became quite enlarged to the point that I was afraid to walk on it. I visited the doctor again, who drained more fluid from the knee and shot it with cortisone (he said "medicine" but I assumed it was cortisone and didn't ask). A few days off the knee, using a cane when I needed to walk, and the knee started feeling normal and the swelling nearly gone. He asked me to increase the Relafen to three pills per day (two in the am and one in the pm) and the plaquenil to one each meal. He also suggested that we might move on to the drug called methotrexate. After a week or so of those levels of doses I was really starting to feel healthy again. Only mild stiffness in the morning which subsided fairly quickly.
During the third week in June I developed a rash over most of my torso and a bumpy, itchy rash on my forearms and the top of my chest - areas that appear to have the most sun exposure. I called the doctor who asked that I stop taking all the medication (currently Relafen and Plaquenil), allow the rash to go away and then restart just the Plaquenil. After 4 days I had very little rash left and restarted the Plaquenil but only 1 per day. After 4 days of that - without the reappearance of a rash - I moved up to 2 per day and started taking Voltaren 50 mg three times a day with meals.(June 27)
During the non-drug therapy time most of my previously active joints started acting up again. Specifically the middle finger on my right hand, the lower joint in my little finger on my right hand, my feet (hard to know exactly where!), my heels, my left elbow, my right shoulder and my right knee. It was getting hard to walk again and my hands were quite painful in the mornings. The Dr. told me to soak them in hot water for 15 minutes in the mornings.
I visited the Dr. again on July 6. Things were pretty normal (mild pain in the usual places) so he changed my use of Voltaren to 2 times a day 75 mg and kept the Plaquenil at 2 per day.
Around that same time I started experiencing some pain in my neck. It felt like muscle strain so I chalked it up to sleeping poorly. The pain subsided and returned after a few days and then proceeded to worsen until July 12 when I called the Dr. again to tell him of this new problem. By this time I was unable to turn my neck more than about 20 degrees in either direction and could not bend it to the side without considerable pain. I also was having more severe pains in two joints in my feet and my left elbow was getting more sore. The only joint not really bothering me was my left knee. The Dr. asked that I come to visit him the next morning.
He checked me the morning of the 13th and decided to take me off the Voltaren (as it was obviously having very little effect) and start me on Napracin - he also added Pepcin to take in the evenings to help my stomach. The Napracin is 375 mg 3xday, the Pepcin 40mg 1xday (in the evening). I stayed with two Plaquenil a day. He asked that I call in a week to let him know. I also have an appointment in August. When I asked if the pain in the neck was arthritis he said he couldn't say for sure, but it could be.
The August appt. showed little change in my worst finger - in fact it had gotten nearly immobile for most of the day. He decided to give me a shot (lidocaine?) in that joint (actually in the palm just below the finger) and then to switch the Napracin - since it was not doing much good, and try Clinoril for an NSAID, keep with the Plaquenil and add Methotrexate at 7.5mg/week taken 3 pills on Wednesday night. Also he added Folic Acid.
Since that time I have shown significant improvement - no new joints are showing up - the finger that was injected is now normal. My only complaints now are my neck - though it's better and two fingers - my right ring finger and my left thumb, but they're only bad in the mornings. My feet are good, as are my knees. My left elbow has some excess stuff in it and it is painful to put weight upon it.
The methotrexate has affected my mouth - I've developed cold sores since I've started the drug - first only one, then another and currently, 5 weeks into the medication, I have three sores in my mouth. One does not seem to be healing.
As of 9/6/94 I am on:
Clinoril - 2xday
Plaquenil - 2xday
Folic Acid - 1xday
Pepcid - 1xday
Methotrexate - 3 pills 1xweek
The cold sores were taken care of for a while by increasing the folic acid the day after taking the methotrexate. That is if I took the methotrexate on Monday night, then Tuesday night I would take 5 x Folic Acid. This seemed to help for a while, but later (about 2 months?) the sores came back.
As of Dec. 1 I am not taking the methotrexate, trying to get the sores to go away - it's now been 4 weeks and I still have two, although they are milder than the ones I had before.
I have a new drug, Leucovorin, to counteract the sores, instead of the Folic acid.
As of Dec. 19 I have been having more pains in my joints , particularly my neck, fingers wrist and elbow. My feet a little. My knees are fine!
I started the Methotrexate again mid-December, and the Leucovorin 24 hours after each week. Stopped the Folic Acid.
January 13, pain in the hands has gotten worse, the neck is a constant problem, but not unbearable. I saw Dr. B on January 3 and he said to continue with all of the drugs, give them another 6 weeks or so to see if they improve the hands and neck and re-visit in two months. Next visit is March 6.
March 6, visited the doctor again - complained of neck and fingers (two of which are now painful most of the day). Got him to give me a shot into one finger (right hand, ring) -had to convince him, he didn't think I'd want the pain of the shot - I reminded him that was better than pain everyday! He also thought I should increase my methotrexate to 4 per week (10mg) to take 2 Tuesday night, 2 Wednesday morning and then the Leucovorin Thursday morning.
I did that and by Wednesday mid-day I had a rash on my neck, by evening it was over my neck and cheeks - warm and red, a little puffiness but not particularly itchy - mostly just sensitive. By Thursday morning it was gone.
By Thursday the ring finger, right hand was almost back to normal. The pain has definitely subsided. Small bruise where the shot was is sore.
April 4, 1995
Visited Dr. Bobrove and was given my latest lab results in honor of the fact that I am in remission. All tests are now normal and no new joints are flaring up. Only three remaining problems and according to the dr. these should also subside - wrist, left hand; middle finger, left hand; and neck. The neck problems have decreased, however. Will continue to take the medication for some time to ensure continued remission.
During the month of May I developed pneumonia and stopped taking the Methotrexate (Dr. Lane suggested this, though not for how long Dr. Bobrove later said I shouldn't have) - this caused me to have increasing RA problems again. I returned to taking the Methotrexate when I was well, but a chest xray showed signs of pneumonia still. I took more anti-biotics and after several weeks I finally had a normal chest x-ray.
Two months back into the methotrexate and things were better again with my joints. I was told to increase the methotrexate to 12.5 mg per week - three in the the evening of one day, and two the next morning. Most pain is gone now, although when my fingers are pulled in the wrong the direction the pain is much worse than when this happened before I had RA. I have one knuckle on the right hand that refuses to go to a normal size. and one joint in my left foot that hurts when I am on tip-toe. I just avoid doing that.
As of 1/6/96 I am on:
Clinoril - 2xday
Plaquenil - 2xday
Folic Acid - 3xday
Pepcid - 1xday
Methotrexate - 12.5mg/week
Leucovorin - 1 1/2 tablets once/week
I'm feeling pretty healthy these days.
Update May, 1996.
Asthma has shown up as a result, I assume, of the pneumonia and drug therapies. In any case, it looks like something I will have to live with (it runs in my family in any case) but is not a big deal. I tend to wheeze when exposed to allergens - in particular cigarette smoke - but never terribly. If I get a cold I have to be a little more careful.
The RA is doing great (or should I say, I am!) hardly any pain, still on the same doses as above except Folic Acid is 5xday. I had one more shot in my foot and the one joint that was bothering me there is now fine. I have not had any new joints bother me in many months.
Update May, 1998
The pharmacy switched sources of Leucovorin a few months ago and suddenly I was dealing with several mouth sores at a time - up to three - painful and all-in-all uncomfortable. My rheumotologist suggested the new drug vendor had a bit of a history with drugs that are less than effective. I had the pharmacy switch my prescription back to the previous vendor and all is well again.
My current drug regimen:
Clinoril - 2xday
Plaquenil - 1xday
Pepcid - 1xday
Methotrexate - 12.5mg/week
Leucovorin - 2 tablets once/week
My only current problem is with my left wrist tendon. The one that runs along the outer side of my wrist connecting the arm to the little and ring fingers. That has been noticeably swollen for several months. We tried an injection and although the swelling seemed to go down for a while, it didn't last long. At one point we considered surgery to clear the tendon sheath, but now the amount of swelling seems to have stabilized, nor is it causing a lot of pain so we have decided to wait and see. I was previously not aware that RA could affect the tendon as well as the joint. Makes me wonder how many other places this could crop up.
I feel quite stable at this point and as long as I continue my medicine things are fine.
Update September, 1998
This past month I experienced pain in my stomach area. Not clear on its origin I asked the Rheumatoligist who suggested it might be an ulcer. Further he suggested I temporarily stop taking the Clinoril to see if that would have an affect. At the same time he started me on a new medication to try to stem the tide on the RA (seems the methotrexate and plaquenil have not been doing a good enough job). After almost a week of no Clinoril I felt so bad I asked to put back on it, which was agreed. Note that during that time the stomach pains were gradually subsiding. Upon taking the Clinoril for another week I experienced the pains again and called the dr. Since my own rheumatologist was not in, and I was about to leave on a week's vacation, it was suggested that I stop taking the Clinoril and the new drug and start using Vicodin to manage the pain. I did so for about a week, the vicodin helping somewhat with the pain, but mostly causing dizziness, and after several days of that I stopped.
Now it is a few weeks later, and the pain in the active joints is not nearly so bad. I'm now only on plaquenil methotrexate and pepcid (though not certain I need to take that I hesitate to stop due to the stomach pains). My joints are not nearly as bad as before when I went off the Clinoril - perhaps I am getting used to it? However I have a new tendon that appears to be inflamed on the left wrist (opposite the existing inflamed tendon).
I was tested for the bacteria that causes ulcer H. Pilori and they found it... I took a regular antibiotic course to get rid of it. It's now several weeks later and the stomach pains are nearly gone.
Update February, 1999
Dr. increased methotrexate to 6 tabs per week (15 mg).
Stomach is fine, though I self-reduced my Clinoril to 1/day instead of 2/day. Most joints are fine - one active in the left foot, and the wrist occassionally swells and reduces. Not too much bother.
I'm feeling pretty well all-around these days, for which I'm grateful.
Update March, 2002
I'm still on methotrexate at 6 tabs per week. I have stopped taking Clinoril and for the last several years also stopped taking Plaquenil, but since having difficulties with my feet the doctor has suggested I resume that, so now I am on the Plaquenil too. I also take folic acid.
I have had two tendons in my left wrist which regularly swell and then reduce. Sometimes they are painful but never so bad I can't function.
I have had one joint in my right foot that has erosion that is visible in an x-ray - it has affected me quite a bit and will probably always be a problem now - I can't really wear highheels any longer (though I still do on occassion, I pay for it later).
Update September, 2002
I am now taking methotrexate as before, but am starting a new drug called Remicade. This drug requires an infusion, so I have to go to an infusion center and have the drug slowly infused by IV over a 2-2 1/2 hr period. I have now had two infusions - two weeks apart. I am waiting four weeks for the next, then eight weeks after that for the next.
The results is that the tendons in my left wrist have greatly reduced. There is still some pain at that wrist, but the wrist looks much better. My feet are still quite a problem, however, and I can no longer wear high heel shoes. I often limp even when wearing flats and athletic shoes. I have not been able to run (my usual form of exercise) in the last five months or so.
Update July, 2006
The Remicade has been remarkable the last four years, so good that at some point I stopped all other drugs (although I wasn't supposed to stop the Methotrexate, I did). I've had several years now with no active joints - it's like a miracle, if you ask me.
I was recently in a bike accident and had to stop taking my Remicade treatments. The reason was that they may interfere with bone healing and since I had a cracked vertebrae, a cracked rib and a diskectomy (they removed a disk and replaced it with bone) the Neurosurgeon thought that i shouldn't jeopardize my recovery. However, since stopping the Remicade I have been quickly reminded that I do in fact have R.A. - For several years now it's felt like I didn't have it! Well, it's back big time. My rheumatologist suggested taking some pain medications to control the symptoms, but I'm a little afraid of these meds. I was on some of them after the accident and I didn't like the side effects. I now have several active joints including: one finger on right hand, thumb and finger joint on left hand (severe), both knees, right shoulder, left elbow, right foot: pinkie toe, and sometimes both hips. It makes doing most things hard, I have to admit. Plus it's depressing. I'm trying to recover from the accident and the arthritis is getting worse. Sigh. On top of that my neck is quite stiff from the surgery and recovery. I plan on resuming the Remicade and re-starting the Methotrexate and Folic Acid at the three month (post accident) mark.
Once I recovered fully from the Bike Accident in 2006 I was able to return to taking Remicade. I have now reduced all meds to just that. I'm supposed to be taking Methotrexate, but when I do, I seem to be much more prone to infections and colds, etc., so I have stopped. The Remicade continues to work quite well in keeping my joints under control. Recently, however, I have had one joint in my left thumb start acting like I'm not on Remicade. This is quite distressing, since it could easily be pointing to more things for the future, just when I thought it was all under control.
I have resumed the Methotrexate (3 tabs per week) and the folic acid.
About six weeks into my last remicade treatment period I started experiencing pain in my knee and thumb joints. I talked to my rheumatologist about it, I was thinking I was dosed wrong at my last remicade appointment or something, but he just thought it was age. Turns out, I needed to decrease the time between remicade treatments, I'm now on an every six week regimen. Given that I've been on Remicade for six years, I guess I'm looking at the fact that my body is getting used to it and needs doses more often. I'm wondering, of course, if this means after a few more years I'll be going every four weeks?! Then two, then who knows? Maybe by then they'll have something new, or a cure! I ran out of Methotrexate and didn't re-prescribe, so now I'm off that.
I'm back to every eight weeks on Remicade, they changed the speed of the infusion at one point (did it in 1.5 hours instead of 2.5) but they found that this caused the effectiveness to dissipate sooner, so we are back to 2.5 hours. I don't mind. I'm happy it works. I now have just one tendon on my right wrist that is slightly inflamed. I'm back on Methotrexate (12.5 mg per week) in the hopes to get that under control as well. So far it has calmed it down, though the tendon issue is still mildly present. I really have no complaints considering how bad it can be.
Still the same regimen of drugs and still doing well. Recently I've had some upper back issues but I'm not convinced it is necessarily connected to my RA. I've started seeing an acupuncturist to relieve the tension. It may be connected to the accident in 2006. This year marks ten years on Remicade.
I am still on Remicade - now more than 15 years, hard to believe it's been that long. It's still working incredibly well for me. I don't take anything else - although I am supposed to also be on Methotrexate, I have done well without it. I am still every 8 weeks and they are back to giving me the rapid infusion so it is nice to have it go so quickly. Also they changed what antihistamine I take, so now instead of Benadryl I am taking Claritin at my infusion appointment. So, I'm no longer sleepy from that session, which is also nice. I still think Remicade is a miracle drug.