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JANISMKW's Photo JANISMKW Posts: 1,348
1/18/18 10:18 P

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La Femme, I am sorry you had such a bad experience with your first rheumatologist. That is just awful, and not typical at all in my experience and what I have heard. My first one was a very good doctor and scientist and "a man of few words", if you didn't get your questions out quickly he was gone. But we developed a warm relationship over a few years until he retired. My new one is lovely. Maybe you don't want to write of the entire specialty because of one bad apple?

I tried methotrexate (MTX) first, I think it is usually the first line treatment tried. In fact I asked my rheumy what is the best possible outcome and he said "some people are fine on just MTX." After that I tried every other DMARD pill (Disease-modifying anti-rheumatic drug) and combinations of them for 2-3 years. Nothing helped enough, my RA came on severely. So finally I tried a biologic, Humira, and it has been a Godsend. It's almost like I don't have RA for the most part. One self-injection by pen every 2 weeks, skip a dose or post-pone if I'm sick or having surgery. I've been on it about 4-5 years now. Now there are biosimilar (like generic) versions of them too, which may cost less.

I have to take higher doses of prednisone for short times for asthma. It has side effects, especially taken long-term... bone loss, cataracts, immune suppression, weight gain, etc.
I wish you all the best in managing this mean disease. emoticon

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ROCKPORT9's Photo ROCKPORT9 Posts: 6,482
12/30/17 9:38 A

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I am so sorry you had such a bad experience with your RA. I have a very kind, sympathetic RA doctor, but we don't always agree. I have been on methotexate and two biologics with side effects on each within two weeks. I will only try one of these harsh drugs every 1 to two years. I was to start an infusion drug this year but refused. I have been on 5 mg prednisone for a decade. There are effects on your bone health, but bone scans every two yeears help me guage change. The current approach of RA doctors is to attack hard and fast. Some do well with these drugs. You have to be informed. Weight, food you eat, stress, and exercise affects your RA. I wish you well with your health.

Laurel
Rockport, Texas

Central time zone


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FEMME_DE_LA_MER's Photo FEMME_DE_LA_MER Posts: 19
12/29/17 11:22 P

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I noticed I had hand pain as an 18yr old, my knuckles really hurt sometimes, but I didn't think anything of it. Flash forward to age 53, and I smashed my knuckle against a shelf and it really hurt, but the pain didnt go away, then it moved to my other hand, then both wrists swelled up, and then my ankles,feet and now this past year, my knees.
One wrist has carpal,tunnel that just started this month, I was relieved to have it be carpal because I was scared my tendons were blowing out, lol

All tests came back normal except my anti ccp, it was >250 - honestly it didnt seem real the 1st year. We have crappy insurance, uber high deductible, so I didnt want to go back after getting the results.

1st year I was on no drugs at all besides advil and now I am on low dose prednisone, because ater hurting my back my GP gave me 5mg of prednisone and I was shocked how much better I felt. I finally saw a Rheumatologist my 2nd year after diagnosis but she was rude, and totally unsympathetic to my worries about RA drugs. She even told me she has two other patients that don't want to take methotrexate or biologics yet either, but the way she described them as stupid and ignorant was horrible. Cruella Deville has a better bedside manner than this woman.......

I went back to my GP who is very sympathetic, says the same things as the Rheumy, but delivers the message with kindness.

I told her I am not ready yet to take biologics or methotrexate and she told me the truth, yes I will get worse, yes, I may continue to get deformation in my hands, but It is my decision and she will continue to be my dr.

I am now on 7mg prednisone, with some spare 1mg in case I have bad days, (I havent - I don't want more drugs, but less) and in 6 months I will see her again and reassess my decision .
I take scientifically proven to be effective supplements and I am doing ok, my side effects of prednisone is weight gain, but I also have been really lax in taking care of myself the right way, eating and drinking too much and not exercising.......I think a bit of depression after my rheumy appt
But...I am exercising again and plan to start watching how I eat and how I reward myself when I am feeling down.

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DEELYLAH SparkPoints: (1,976)
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7/5/17 8:04 P

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I got a pair of veturo fingertip-less for typing and general wearing. Theyre expensive ($40/pair), but they do a great job of keeping my hands warm while not inhibiting movement. I have a pair of compression gloves I keep on the headboard--if I'm cold at night, I'll toss those on. I'll check out the brand you linked--always looking for something consistent :-)

JANISMKW's Photo JANISMKW Posts: 1,348
7/3/17 10:49 P

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Dee, One thing that helps me a lot is Imak Arthritis Gloves, especially at night. They give light compression and some warmth, but not too hot for summer (cotton). I just ordered a new pair from their website. I got my last pair from Amazon and the stretchiness broke down quickly, might have been sitting on warehouse shelves a long time. If buying, do see the measuring guide... I take XL in regular gloves, but M in these. (I am not paid for this.)
www.brownmed.com/product/ima
k-compress
ion/arthritis-gloves/


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6/28/17 1:03 A

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In early 1987 I started having hand stiffness and I wasn't able to move my fingers appropriately to play piano. Sometimes, after practicing saxophone for three or four hours in a day (that's what music majors do in college...) I'd have to ice my hands because my knuckles and wrists were so swollen. I was probably lucky--my mom had RA and she completely jumped on it. I think I had blood drawn inside a week after my mom found out I was icing my hands and couldn't open a beer bottle by hand (twist cap). Positive RA factor, elevated SED rate. Our family doc prescribed oral gold salts and insane amounts of NSAIDS. We (my doc, mom, and me) decided to stay away from the pred and try the NSAIDS. I don't think they worked very well, but eventually the gold kicked in and I was fine except for cold & rainy days when I had to march on a football field. I stayed on the gold therapy & NSAIDs for three years until I had a knee surgery (my cartilage sucks) and had to go off everything (?!?) prior to the surgery. I never re-started--the pain wasn't bad enough, and I didn't see that much of a difference. Three babies later, and 2006 rolls around. My youngest was born in 2000, and he nursed for a year--I was out of remission and he77, I hurt. The rheumatologist I saw said I didn't have RA because I didn't have a positive RA factor, but did have an elevated SED rate and inflammed joints. They tested me for MS and a host of other things. Nada. Therefore, it must all be in my head, right? I bought industrial size bottles of Aleve to take the edge off. This past November, I couldn't move when I saw my family doc and he put me on 7.5mg MTX and 5mg pred until I could get in with rheumatologist (February 2017...). Oral MTX made me super sick, so when I saw the rheumatologist in February and he casually doubled my dose, I was pretty surprised. And, yes. Still oral MTX. He increased me to 20mg orally before I called BS and managed--after a two-month search--to find another rheumatologist accepting patients. I drive almost two hours one way to get to the new rheum, but I'm on the MTX injection now, and I've stopped the Mobic the other rheum put me on. I'm even being weaned off the pred (omg, I gain 10# just looking at a bottle of pred...) starting next week.

I also have Raynaud's Phenomenon. You'd think it'd be hardest in the winter in Michigan to stay warm, but not the case. I carry gloves, socks, and a blanket everywhere. The Raynaud's exacerbates the hand pain, methinks.

I'm awake several times a night with pain. Except the night I do my MTX injection--that night, I sleep like a log.

I'm excited to be here and looking forward to supporting each of you on your journey.

CD2854415 Posts: 11,837
5/10/17 7:18 P

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Yes, please get off the prednisone. I was on it for seven years. I've broken my right arm, my right knee, my right eye socket, and my right foot 4 times, all since 2000.

When I was in high school, I thought it was normal to dread back to school shopping. It was painful to carry around shopping bags full of clothes, and my feet just got worn out! So I ignored it as part of life. After my second daughter was born (I was 23), I woke up one morning with my fingers so painful that I thought I had hit my left hand on something. Within just a few months, I could barely walk! I went to the doctor, and after labs and bloodwork, I was immediately diagnosed with RA. That was in early 1983. I used a cane for about two years in my early-mid twenties. I was constantly in some kind of a brace. A wrist brace, a knee brace, whatever. They didn't have many good meds back then, and I was finally put on methotrexate when I was in my early 30s. The doctor told me I would be in a wheelchair by the time I was 35. Over the years I've had many changes in medication, many surgeries, many injections. I'm currently on orencia and mobic, and it works well for me. Most days I feel normal. What has helped me most is remaining active. I am very active, and I've gotten more active as I've gotten older. I stiffen up when I'm not active, and things start swelling. Good nutrition and exercise is as much a part of my treatment as good medicine. I can't function if I don't have all three.

BKWERM's Photo BKWERM Posts: 14,373
5/10/17 7:06 P

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Thank you for telling us your story, Laurel.

I'm sorry to hear of your broken pelvis but I'm glad it wasn't worse and am happy to hear you're healing well and will be line dancing again in no time.
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My name is Joanna not Joanne, please and thank you.

Dundas, Ontario, Canada
Daylight Savings Time/Eastern Time Zone

Black Panthers Drop It While It's Hot Summer 2021 Challenge

BLC35-46 - Resolute Renegades
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RESOLUTE on sticking with the things that work, e.g. tracking, drinking my water, exercising, etc.

RENEGADE by limiting unhealthy food and moving my body as much as possible.


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ROCKPORT9's Photo ROCKPORT9 Posts: 6,482
5/10/17 6:12 P

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It's been several decades. It started out whe I was teaching 3rd grade. My doctor diagnosed me with fibromylagia. Pain and swelling mainly in my knees and pain in shoulders and back. I would need fluid drained from my knees and prednisone shots. Lots of icing, elevating, rest, pain relievers. When I retired from teaching, problems began to leave me.

Then, after a year after retirement, swelling in feet and hands. Pain throughout body. A new doctor said I never had fibromylagia. I had rheumatoid arthritis. Over the years, several drugs have been tried......Methotrexate, Arava.....but 5 mg prednisone was the staple. The heavier drugs would last 2-3 weeks before the side effects were too much and I would be taken off.

My primary physician and rheumatoid arthritis doctors both want me off the prednisone. They say it will turn my bones in to dust. Yet, the 5 mg of prednisone helps lower the inflammation and pain.

Over the years, I have learned what helps me. I put epson salts in the tub when I shower and close the drain. I have elastic support for my feet, hands, knees...depending on what is flaring. I use lots of blu emu pain cream. I am 70 and retired so I can rest when needed.

For the past 10 years, I have been line dancing 3 times a week and I have a terrier to walk. When I tripped and fell in the garden10 weeks ago, I cracked my pelvis. I have been on bedrest and using a walker. I am recovering and I know it could have been worse. Once I am recovered, I am back to line dancing and walking the dog. My body needs this as does my heart.

Edited by: ROCKPORT9 at: 5/10/2017 (18:13)
Laurel
Rockport, Texas

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BKWERM's Photo BKWERM Posts: 14,373
5/10/17 5:34 P

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I'll go first.

In the spring of 2004, I decided to try running as my 5K regular walk every day was getting boring and I liked running. I couldn't do it the whole way but I managed to run the route whenever the walking got boring.

Spring forward to September. My knees were achy all the time especially my left one (I fell and hurt my left knee back in the early 90s so it's always given me trouble.) so I called my GP's office to make an appointment. I honestly thought that all I needed to do was stop running as I figured that was what was causing the knee pain. It made sense to me since my knees hadn't hurt before I started running.

So, my doctor sent me for bloodwork. The day I decided to get the bloodwork done, I actually walked from our place to the bloodwork lab in town, which I had measured out to almost exactly the same distance as my regular 5K walk.

Walking to town was very hard on my knees because it's all downhill and downhill hurts my knees. That was the last time I walked to town.

I got my bloodwork done and waited for a call from the doctor's office for the all-clear except that he asked me to come in instead and it all went quickly downhill from there.

As I already said, it started in my knees. By the end of September, my knees and calves and feet were so swollen, I couldn't wear anything other than dresses and sandals. I could barely bend my legs at all, they were so sore. My appointment with the rheumatologist wasn't until November and between the end of September and November was the darkest, most painful part of my life. My knees were sore all the time. I wore ice packs on both of them to bed every night. I had to give up my beloved red Cavalier because not only was it too low to the ground to get in and out of but it had a manual transmission as well and it just hurt too much to drive it.

I had to get a new vehicle so DH would load me into the back seat of his car with ice packs on both knees and we'd go around to various dealerships looking for a taller, automatic transmission vehicle that wouldn't hurt me to drive or get into and that's when we got a black pickup for me.

After about a month of this unending pain (I still wasn't on any medication), I came into work one morning and burst into tears 3 times in the first half hour because I was tired and sore and fed up for the most part and my boss told me to go home and get some sleep but I knew it wouldn't be that easy so I drove directly to my doctor's office and told the receptionist that I didn't have an appointment but the doctor needed to give me something so that I could sleep and he prescribed Tylenol 3s.

I went home and took two of them and fell asleep for about 12 hours. I got up in the evening and had dinner and then took two more and went back to bed and slept another 12 hours. Sleep felt so good that I stayed home from work for another day and slept another few hours.

After that, I started researching RA to see what I could do or take that my GP could prescribe and that turned out to be Celebrex. Unfortunately, Celebrex gave me angina so I had to stop taking it. By the time November rolled around, I was ready to talk to the rheumatologist to find out how to deal with all this pain.

My dad took me to the appointment as I was still having troubles walking and besides that, I needed some moral support.

The rheumatologist was very good. He tested all my joints and determined that I had swelling not only in my knees but in my hands, elbows, wrists and shoulders, too.

He prescribed me a lot of drugs but the one that helped the best immediately was Prednisone. Prednisone was a godsend, in my opinion. It reduced the swelling AND the pain and finally I felt like maybe life wasn't over. Prednisone is also a scary drug and it's not one you want to be on for long but I was on it off and on for about 2 years and thankful for it because it helped so well with the pain.

I was also prescribed Methotrexate, which I absolutely hated as it made me feel nauseous and tired all the time and Actonel, which was to prevent deterioration of the bones as Prednisone is hard on bones and Arava and Sulfasalazine.

I've never had a pain-free day since but it's much, much, much better and I can honestly say that I never ever want to feel so much pain again as I did when I was first diagnosed.

Edited by: BKWERM at: 5/10/2017 (17:37)
My name is Joanna not Joanne, please and thank you.

Dundas, Ontario, Canada
Daylight Savings Time/Eastern Time Zone

Black Panthers Drop It While It's Hot Summer 2021 Challenge

BLC35-46 - Resolute Renegades
www.blctracking.com

RESOLUTE on sticking with the things that work, e.g. tracking, drinking my water, exercising, etc.

RENEGADE by limiting unhealthy food and moving my body as much as possible.


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BKWERM's Photo BKWERM Posts: 14,373
5/10/17 5:25 P

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Please use this spot to tell us about how and when you were diagnosed. Include as many details as you are comfortable with sharing.

My name is Joanna not Joanne, please and thank you.

Dundas, Ontario, Canada
Daylight Savings Time/Eastern Time Zone

Black Panthers Drop It While It's Hot Summer 2021 Challenge

BLC35-46 - Resolute Renegades
www.blctracking.com

RESOLUTE on sticking with the things that work, e.g. tracking, drinking my water, exercising, etc.

RENEGADE by limiting unhealthy food and moving my body as much as possible.


 Pounds lost: 84.4 
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28.5
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85.5
114
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