I would like your personal experiences

General
1

I AM SEEING MY RHEUMATOLOGIST TOMORROW FOR THE FIRST TIME AFTER HAVING MY BABY AND THIS IS BASICALLY THE FIRST TIME I WILL START TAKING MEDICATIONS. I HAVE HAD SO MANY LIMITATIONS MY WHOLE LIFE AND I'M WONDERING IF THERE WILL BE MORE OPPORTUNITY FOR ME ONCE I START MEDS. I WANT TO DO MORE. I WANT TO FIRST AND FOREMOST BE ABLE TO TAKE CARE OF MY DAUGHTER (WALK AND SLEEP.) THOSE ARE TOP ON THE LIST. MY DREAM IS TO BE ABLE TO RUN AND PLAY SPORTS/EXERCISE (OUTSIDE OF WATER.) THANKS FOR YOUR INPUT/ADVICE/STORIES/EXPERIENCE IN ADVANCE :)

1. What is your story? symptoms? diagnosis? limitations?

2.Once you were started on medications what were they and what worked best for you? Has one medication worked for you? Or do they all lose their effectiveness quickly??

3.Any non medicated treatments that help relieve pain??

4. Once you found a medication or treatment that was "effective" were you able to return to a "normal" life or are you still limited?

5. Can anyone run? play sports?

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I only have a few minutes, but I'll do my best...

1. What is your story? symptoms? diagnosis? limitations?

Joint pain and swelling on and off since childhood, only feeling "well" during pregnancy.

Diagnosis: PsA/spondylitis along with hypothyroidism, celiac, simple fatty liver, and pre-diabetes. I have partial fusions in my sacroiliac joints and most likely in my back and neck. Just about every joint in my body is arthritic.

2.Once you were started on medications what were they and what worked best for you? Has one medication worked for you? Or do they all lose their effectiveness quickly??

I started out taking Enbrel (starting Dec 2011), and it started working after nine weeks. It helped my arms and legs, but not my back and si joints.

I'm now on Remicade, which started helping after my second dose.

3.Any non medicated treatments that help relieve pain??

Heat helps with pain, as does chiropractic and cranio-sacral therapy.

4. Once you found a medication or treatment that was "effective" were you able to return to a "normal" life or are you still limited?

I'm still waiting to see what further doses of Remicade do for me. I will always have pain and limitations due to the fusions in my si joints. My rheumy can't believe I can live without taking pain meds 24/7 with the damage to my si joints and other joints.

5. Can anyone run? play sports?

At this point, no, but my hope is to be able to resume hiking by the fall. I was never into sports or running. After a year being in a wheelchair or using canes to get around, I'll be happy to hike!!!

3

Hello PNfree,

I am 8 shots in on the Enbrel, and do feel some good affects from this med, also good for my Sciatica is Lyrica, and for an anti-inflammaroty I take Oxaprozin. These are my basics. Please keep in mind that the meds for the PsA will take 12 weeks to allow you to feel the full affects, though some feel results earlier.

The exercises have been given to me by my Chiropractor, and all other activities are approved by my GP and/or Rheumatologist. Light stretching is helpful to me, walking is very beneficial, we have over an acre, the neighbor has over 3, I feel it is best to walk on the ground rather than a road or pavement, just watch the holes! I find it best for me to stay very close to home for the walking.

There are rare ocassions that I can ride my bike, a basic Huffy. This is done with my grandson and very helpful for my SI joints and my emotional health, of course being in the company of my grandson is the real healer!

The arthritis water exercising classes at the Y are also good for you, but you will need a note from your Dr.

It was necessary for me to change from a clutch back to an automatic, something seldom mentioned. Though I do not often ride in the car because of my back problems was fortunate that my husband replaced my truck with a Chrysler Pacifica, great seats, even front passenger has electric adjustments, has independant racing suspension, so it takes the bumps and pot holes better than most cars. These seats were far superior to many of the more expensive cars.

There is also a basic office chair that I wheel between the kitchen and dining room tables and here at my desk. It is in need of replacement, but because it does NOT have the lumbar support I am having problems finding another like it. That big hump the call support, just irritates my lower back.

Chiropractics does help me, however because mine is at least 30 minutes away can cause me additional problems, but he is the guy I go to when things get too far out of sync.

Having the grandkids is as strenuous as my activities get, they are my Physical Therapists, sometimes I have to move quickly to catch up to the little one, but as far as distance running goes, no. I have trouble with 'drop foot' where the body gets our of alignment and one leg is substantially longer than the other, so it is easy to fall even walking. The DC is the only one who can remedy that.

Hope this helps! Glad to have you back in the group!

Sending the best to you and yours, hugs to the baby girl!

SK

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Thank you for your replies! He has started me on plaquenil. I see him again in 2 months to see how it has worked for me. He did not prescribe any NSAIDS due to my stomach issues. So right now I am still in horrible pain waiting/hoping this will work.

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He hasn't given you anything for pain? There has to be something you can take - you shouldn't have to live your life in pain!!!

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no :( I'm not very proactive in asking for pain medication i guess. What can i take for pain if i dont take nsaids?

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Hi there....Just a note on the stomach issues...I too have not been able to take NSAIDS from an ulcer that came from previous nsaid use. Not sure what your stomach issues are, but Celebrex is SUPPOSED to be more gentle on the stomach (no guarantee on that), but you could try the NSAIDS with a stomach protector such as pantoloc or omeprazole. Pantoloc and Meloxicam are the ONLY ones I have been able to take, and I have tried them all....I was actually given and ulcer by Celebrex (go figure). I have no idea why the Meloxicam along with the Pantoloc does not bother me, but so far so good, and it has been 2 months. May be worth a try?

As for other meds treatment meds, I have been on Sulfasalazine for 3 months with no effect, now on Methotrexate for the last 2 months, so far no results.

Good luck!

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1. What is your story? symptoms? diagnosis? limitations?

I was diagnosed with Psoriasis when I was 22. I probably started having joint pain around the age of 29, but attributed it to working out and getting older. When I was around 34 I had a toe that was very red and very swollen. I figured I had somehow broken it. A visit to an orthopedic Dr ended up sending me back to my dermatologist, who referred me to a rheumatologist who diagnosed PsA. The toe was the only problem. He put me on Enbrel and the toe was better within a few weeks. I didn't realize the severity of PsA at the time, and my Rheumy Dr at the time didn't elaborate. He kind of gave me the feeling that it was no big deal and I kind of ignored it. In 2010 I started experiencing a lot of pain in my wrists, hands, feet, knees and ankles. I had a constant case of plantar fascitis, and my achilles tendons hurt all the time. I had difficulty typing, walking, sleeping, working out, putting dishes away. I went back to my Rheumy and explained this, but he was not very supportive because he didn't see any swelling and basically changed nothing. I began to do research for another Rheumy and now have a great Dr. He listens, does MRIs, and actually feels my joints.

2.Once you were started on medications what were they and what worked best for you? Has one medication worked for you? Or do they all lose their effectiveness quickly??

Enbrel was a wonder drug for me. It cleared all my skin symptoms and I had a little over 5 years of NO pain. But when the pain started back up, they tried Humira for about a year with no improvement. Methotrexate was added which based on MRIs slowed down the joint destruction, but the pain was awful. I was switched to Simponi about a year ago, and still taking methotrexate, but still having horrible pain. My Rheumy doesn't think the dosage is strong enough, but 1 injection per month is all that is allowed for PsA. As of this past Monday, I have been switched to Remicade, but have not started infusions yet.

3.Any non medicated treatments that help relieve pain??

Currently trying acupuncture. I've had 6 treatments over the past 3 weeks, but so far I haven't had any relief, but I hear that some people have great results.

4. Once you found a medication or treatment that was "effective" were you able to return to a "normal" life or are you still limited?

When Enbrel was working for me I forgot I even had PsA.

5. Can anyone run? play sports?

As of right now, no, I cannot. I do stretching, walking if I can, and some Yoga.

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Thank you for your replies. I have a follow-up appointment with my doctor on monday. He started me on plaquenil about two months ago and I have not noticed any improvement, except that the pain in my hips have lessened. I am still very stiff, I am just not in as extreme pain as before which would leave me crippled. I am not sure if he will keep me on it or not. I feel like I should give it some more time to work.

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3. I got a hand held Tens unit where you stick electrodes to your muscles and administer mild electric stimuli to them to deaden the pain for a while and this really helps me.