Sharon’s Rheumatoid Arthritis story
Carole’s Rheumatoid Arthritis story
Rochelle’s Rheumatoid Arthritis story
This is Sharon’s onset of Rheumatoid Arthritis story, in her own words.
My name is Sharon. I’m 64 years old and live in Utah. A year ago we went to Disney World for our anniversary. I was exhausted the entire week that we were there, but thought it was just the altitude change. My right ankle was very swollen and stayed that way until March 2011. I had actually had swollen ankles for a couple of years but didn’t think too much of it. At the end of May, I fell at work and hurt my left knee and right shoulder. I thought the pain I was having was from the fall but I was to find out differently within a few months.
In June 2010, I had several blood tests run and found out that I had hypothyroidism and they put me on Synthroid. I was exhausted all the time and my shoulders and knees hurt. I would fall asleep at work while I was working and the summer months still seem foggy to me. I rarely missed work before, but now I was missing a week at a time because I was so tired and hurt so much. My doctor told me that I would feel better as the thyroid medicine would fix my thyroid. That never fully happened although I did get passed the fogginess.
In September 2010, I had more blood tests run and my GP told me that my Rheumatoid factor was high and I needed to see a rheumatologist. I couldn’t see one until the first of November 2010 and by then my fingers were stiff and swollen, my knees and shoulders still hurt and I was using a cane to walk during the day and a walker to get around my home at night and the toes on my right foot had turned from their normal position to an extreme right turn. I lost 65 pounds between June 2010 and February 2011 without trying which was nice because I needed to, but a little scary too.
I started taking methotrexate November 6, 2010 – 4 tablets a week for a month and then 5 tablets for 6 weeks and then increased dose by one pill per week up to 8 in February 2011. I never had any side effects with this medicine and by the end of February had no swelling and no pain. I was excited that I felt so much better.
Then the roof caved in. I was having trouble breathing and each day it was a little worse. Finally, on March 6th my husband took me to the ER and they took one look at me and put me on oxygen. I told them that I had to go to work the next day so to give me something so I could. The doctor looked at me, laughed and said he was admitting me to the hospital for pneumonia. I thought well OK I’ll be in here a couple of days and back to work by next Monday. NO, RA had other ideas!
I was in the first hospital for 6 days and then transferred to Salt Lake City to the University hospital for 5 more days where they reluctantly let me go home after I told the doctor that he either released me or I was releasing myself. I had no idea if I could do that but I had had enough. I was now being treated by a pulmonologist. I had been diagnosed with interstitial lung disease which the doctors felt had been brought on by the methotrexate. The doctors put me on 60 mg of prednisone and told me it would just be for a few days. Ten days later I started having a reaction to it. I passed out twice, had vision problems and couldn’t move around except to the bathroom and had to sit down halfway there. I started weaning myself off the prednisone; by the time I went back to the pulmonologist I was done with it and the doctors freaked. I told them that I was not going to take something that made me feel worse than the illness. The doctors then told me that they were going to put me on 80-90 mg of prednisone for 6 months. I told them they weren’t. The doctors completely ignored any questions my husband had as if he wasn’t there and didn’t listen to my concerns. I knew I wouldn’t be back to see them.
We started looking for a different pulmonologist and with a recommendation from my brother-in-law, I found someone who would listen to me and answer my questions. He listened to me and my husband about our concerns and spent 45 minutes with us. He doesn’t think the lung problem is from the methotrexate but from RA itself. I’m waiting to hear back on the x-rays and ct scans.
Has anyone in the RA Warriors been diagnosed with interstitial lung disease from RA? I would appreciate any info that I could get. I’m still on oxygen and had to quit my job that I had had for 16 years. I’d like to know if I’m going to get better or worse. Thanks for any information.
Note from RAW: Rheumatoid disease can affect the lungs in various ways and is considered a possible site for the disease to begin.
This is Carole’s onset of Rheumatoid Arthritis story, in her own words.
My mom died of RA. She had a horrible case, back when the only things to take were gold salts and aspirin. It finally got to her vocal cords. She had so much trouble breathing, she ended up with pneumonia and died at age 76.
Mine started with Palindromic Arthritis. One day, at age 52, I woke up and thought “what in the heck did I hit my wrist on during the night?” Three days of pain and stiffness, then gone! Two weeks later, it was my other wrist. Two weeks later, back to the first wrist. Up all night, feeling like someone was beating me with a hammer. I went to my GP and she came to the same conclusion I had been afraid of… the beginnings of RA. But my RF and sed rate were normal.
However, my thyroid was out of whack, so she put me on Synthroid and Cymbalta. She thought it might be Fibromyalgia. When the flares began to hit fingers, shoulders and wrists every couple of weeks, I made an appointment with a rheumy. I told him my whole story as he typed. No eye contact. No smiles. He sent me down for an x-ray. When I came back up, he said I didn’t have RA – no sign on the x-rays. However, he would do blood tests. Three weeks later they called to tell me my anti-CCP was positive, but that didn’t mean I had RA. They said come back if it got worse. Yeah, right.
Then it went away as quickly as it started. For a year. I began to believe that the rheumy was right. Then it came back even worse than before. Still all in the hands, wrists and shoulders. Still every 2 weeks, or so and lasting for about 3 days. I found another rheumy who had just opened a practice close to my home. He is gentle and soft-spoken. He listened (REALLY listened) and said it sounds like Palindromic Arthritis (which I had never heard of), but I may be one of the 40% moving into full-blown RA. He ordered blood tests: RF and sed rate were still normal, but anti-CCP was up to 130. He did an ultrasound of my wrist and hand. He thinks the ultrasound shows damage before an x-ray can. His feeling was I was moving to RA.
He has put me on two Plaquenil per day. My flares have stopped (but would they have stopped anyway?) But my hands are always stiff. I take Aleve twice a day and that helps. He sees me every 3 months, does blood tests regularly. We are waiting. If the flares come back, we will add Methotrexate. If that doesn’t get it, we will discuss the different biologics. He still listens to me and we work together on what I need.
I feel incredibly lucky that my RA has been mild so far and that the doctor is willing to believe me and work with me. I know that at any time I could begin to hurt all over and my life will greatly change. I’m just enjoying what I have now.
This is Rochelle’s onset of Rheumatoid Arthritis story, in her own words.
I was diagnosed with RA in January 2009. I was 30 years old.
Prior to this for a few months I had various symptoms, but I had absolutely no idea that it was related to RA. I was very active physically and in good shape. I would use the gym 3 or 4 times a week and I was very fit.
I distinctly remember several times before diagnosis when my fingers would ‘stick’ all my themselves to my palm. It didn’t actually hurt, but it sure looked and felt funny. At times it used to make me feel a little queasy and I’d have to ask my husband to ‘lift them back up again’!!
This was a minor problem and after it had happened I just forgot about it until the next time.
More often afterwards I would wake up in a lot of pain, especially my hands and feet. I remember being reduced to tears from the pain some mornings upon waking and having to walk on my heels to the bathroom in the morning. It felt like I was walking on stones. I remember having difficulty even brushing my teeth and on several occasions I had to cup my toothbrush in both my left and right palms in order to brush because I could not curl my fingers round the brush.
Again I never really paid much attention because this stiffness/pain would come and go and usually I would take a couple of ibuprofen and it would stop.
I had problems turning the tap (faucet) on and off and would struggle to use the toilet and even do up my bra. Again my husband would have to help me even to undress at night because my shoulders were very sore.
This started to become more and more frequent and it was at the time that I had to virtually crawl up the stairs one day due to terrible feet pain and my mother in law witnessed it that she and my husband encouraged me to see my GP (family doctor).
I remember going to see my GP and explained the problems that I had been having. I think at the time my knuckles were inflamed. He instantly referred me to our local hospital. I had blood tests and X-Rays taken and was given an appointment with the rheumatology department a week later.
When I went to the rheumy he told me that I had RA. He examined each of my joints and asked me to describe my pain in each joint on a scale of 1 to 10. I was having a lot of pain in my feet and hands at the time and I remember waddling like a duck when I was called from the waiting room to his office. Very robotic movements.
My bloods came back showing a high positive RF and the inflammation markers were very high. To be honest I never really realized the severity of the illness as I has never come into contact with it before. I didn’t really ask many questions and didn’t look into it much.
I was prescribed Plaquenil (Hydroxychloroquine) and Sulfasalazine. I was told that it would take a while to kick in and as I was in a lot of pain and had limited movement which was causing me issues at work with writing and typing he gave me a steroid jab.
At this time I was having difficulty doing the daily tasks as explained before but the day after the shots was amazing. I remember meeting my husband for dinner after work the next day and being able to run and even hopped about. It was amazing.
I never started with the medication and the jabs effects lasted at least a month before the pain and stiffness started to kick back in.
In early March 2009 my husband and I were due to go on a vacation to Thailand. It was going to be our last big holiday before we decided to try for a baby. As the pain was starting to come back I was given another steroid jab but was warned that I needed to start the meds when I returned.
Whilst we were in Thailand I realized that my period was late… on the off chance we bought a pregnancy test and to our amazement and joy I was pregnant. It turns out I was about 5 or 6 weeks gone. The rest of the holiday passed in a happy blur and when we returned home 2 weeks later I went to see my GP to get everything confirmed.
The symptoms of my RA seemed to completely die down from this point onwards. I was not on any medication but was so symptom free that I even forgot I had been diagnosed with RA. My pregnancy was a breeze up until 7 months. I had no nausea, illness or anything and normal healthy weight gain.
However my waters broke very early at 32 weeks (prepature rupture of the membranes). From that point onwards it became a bit of a nightmare. I was hospitalized for the next 2 weeks as I was told it was more than likely I would go into labor any day. My husband and I were counseled on the likely outcome of our baby being born so early and I cried nearly every day that I was in hospital worrying about having a prem baby.
2 weeks passed and no sign of labor. They allowed me home but I had to go back to the hospital every day for them to monitor the baby and check the amniotic fluid levels etc. Once I got to 35 weeks pregnant they decided that they would induce labor as there was increasing risk of infection to the baby because the waters had broken so early.
Labor was induced at 35 weeks and 2 days. I didn’t dilate past 2 cm and so a caesarean section was performed. Our beautiful little girl was born at 35 weeks and 2 days by C Section and was perfect although small at only 5lb 5oz (2.2 kg).
I breast-fed our daughter for the first 2 months but then I experienced a massive flare. At one point I remember having to change her nappy (diaper) with my teeth. I stopped breastfeeding and started the previously prescribed medication immediately. 2000mg of sulfasalazine and 400mg of Plaquenil.
I have been on this combination of drugs ever since. My daughter is now 19 months old. I have responded very well to the medication and although I still experience mild discomfort now and again, it is nothing compared to pre medication. My rheumy would like me to go on methotrexate, but as I have not finished having children yet (we would like one more) I have chosen not to take this medicine.
For the most part I am able to completely forget that I have RA. I see my consultant every 3 months and have monthly blood tests to monitor activity and also to minimize damage to other organs from the possible side effects of the meds. So far so good…
However my husband and I have decided it is time to try for baby no.2 recently. Because I am on these meds I have started to do a lot of research on the safety of this medication through conception and pregnancy. My consutant tells me that meds are ‘relatively safe’ but I am finding conflicting information on the net, particularly for Plaquenil. This is how I came across your site actually.
It has been a week now and I have stopped taking the Plaquenil although I am taking the sulfasalzine and folic acid. I am starting to experience a bit of pain, particularly my right hand (knuckles) my feet and also the bottom of my spine although I don’t know whether this is RA related or caused by carrying my rather heavy toddler!!
I am, of course, worried that it is due to stopping one of the meds but am also concerned about falling pregnant whilst taking the medication and so I figure that it is better to be Plaquenil free in the hope that the RA dies down again when I do get pregnant. I know it’s a risk but I don’t know what else to do.
This is as far as I have gotten. I have a meeting next week with my consultant but I am trying to wait a couple of months to get the Plaquenil out of my system before I fall pregnant. I will again try to bring up the subject of medication whilst pregnant.
What I am most concerned about now is how much damage might be caused if I am not on both meds, if any but from reading the various information out there, each case is different and this question is impossible to answer. It may be vast, it may be none.
Also now that I am doing so much research on RA I am finding out so much information that is such depressing reading. For example I never knew about the increased risk of heart disease, cancers etc and consequently possible earlier death and feel very down about it. I also am so frustrated that there is no knowing how this illness will affect me in the future. The uncertainty is such a worry. Will I be disfigured or wont I, will I become disabled or not? Could I go into permanent remission or not? So may questions and so little answers.
Really don’t know what to do for the best………. but live in hope that they find a cure one day soon. That’s my story so far. I will continue to be an avid reader of your site and thank you for all the hard work you put into it.