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ONELASTTIME7's Photo ONELASTTIME7 Posts: 803
1/14/18 4:45 P

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I've been on enbrel for 14 years, and it has done a good job for me. For several years I took mtx as well, and in 2012 was feeling so good, and my labs were also good, so I dropped the mtx. In 2015, I had to start taking the mtx again because my inflammation was increasing.

Have you checked into the Enbrel Assist program? It's been a godsend for me. My insurance doesn't cover it either, but I've had the Enbrel Assist since it began.

"I can do all things through Christ who strengthens me."
Phillipians 4:13


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SHINING_ON's Photo SHINING_ON Posts: 845
1/14/18 12:49 A

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Hi all,

I thought Iíd post another quick update and see if anyone has any input. My November numbers had my inflammation markers the highest yet despite mtx. Iím still responding well to the mtx at 15 mg per week. The rheumy was going to bump me to 20 mg but my ďmtx dayĒ is truly now a lost day from fatigue most weeks. So, she wants to add enbrel. But of course, I canít afford it. Heh.

Anyway, Iím waiting to hear back whether Iíll get assistance to pay for it since my insurance denied coverage.

Have others been on it? She has said if I respond well then we can probably lower the mtx after a while.

The RA diagnosis is now official and sheís said that ankylosing spondylitis is still likely/possible. Janis, to answer your question, my understanding is that with AS the joint issues are more localized to the spine, which is where mine started. But itís now spread to all joints in the body, both sides, lots of stiffness, tiny nodules on the hands. But Iím still RF negative.

Iíll admit this is all so new to me and I donít even know how well itís sunk in.

Has anyone had inflammation of the eyes/cornea from RA? This is apparently something else Iím dealing with and they are thinking itís linked to the RA. Bear in mind, Iím only 35 and much too young for age-related macular or field of vision issues.

I appreciate everyonesí perspectives so much!

~ K
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"Isn't it nice to think that tomorrow is a new day with no mistakes in it yet?" (Anne Shirley in Anne of Green Gables)


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JANISMKW's Photo JANISMKW Posts: 1,339
8/26/17 11:31 P

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Fatigue is a major known symptom of RA, even severe fatigue is common.

In the beginning of my treatment I asked my rheumy, "What is the best outcome with RA?" He said, "Some patients are fine on Methotrexate alone, that's the best." So good luck to you with your MTX treatment, you have to give all these meds time... sometimes a few months on the full dose to see how well they work.

Ankylosing spondylitis is basically the same as RA except that affects the spine instead of other joints, isn't it? Is the treatment similar to RA's? RA tends to affect joints symmetrically on both sides of the body... hands, wrists, shoulders, ankles, and others.
Wishing you the best. emoticon

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SHINING_ON's Photo SHINING_ON Posts: 845
8/23/17 2:01 P

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Hi Janis, thanks so much for your reply!

You know, I keep blaming the MTX for my fatigue but maybe I need to blame the RA more. Haha. I don't know. I'm still feeling so "new" to all this. I started on 4 pills, I'm up to 6, and the goal is 8. I don't really think of my RA as "sudden" since I've been getting flares on and off for about a decade now, but this is by FAR the longest a flare ever lasted -- and finally enabled a diagnosis. It's also the most severe flare by far.

Right now, biologics aren't on the table. I think, because I'm seronegative, they're still trying to get a handle on if it really is RA or ankylosing spondylitis or... who knows. I have hallmarks of systemic inflammation but no elevated RF, ANA, or anti-CCP. After this last meeting with the Rhematologist, though, she said she is starting to feel very confident in her diagnosis of RA, and it's still up in the air whether I have ankylosing spondylitis too. We'll just keep experimenting to try to pin it down, I guess. I do have family histories of both but they went untreated in all cases and caused severe disability later in life. I'd like to avoid that if that's the trajectory I'm on...

Wow, your experience with Humira sounds amazing. I am so grateful you were able to find that much relief, even if it did take longer than necessary!

Best wishes for a wonderful rest of your week. emoticon

~ K
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"Isn't it nice to think that tomorrow is a new day with no mistakes in it yet?" (Anne Shirley in Anne of Green Gables)


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JANISMKW's Photo JANISMKW Posts: 1,339
8/22/17 9:21 P

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MTX was the first drug I was put on for my sudden & severe RA, about 7 tears ago. I think I started on 5 pills once a week and went up to 7 pills. I don't remember having noticeable side effects, but the RA was making me tired all the time.

The MTX helped a lot, but not well enough to stand alone, so for almost 3 years we kept trying combining it with other DMARD pills. Finally, when MTX and Arava had caused elevated liver enzymes so I had to stop them, and none of the pills had worked well enough, I agreed to try a biologic, Humira. My rheumy said 90% of rheumatologists wouldn't have waited so long to put me on it. It has worked great for me, I feel almost "normal" and rarely have small flares that are fixed with 5 mg of prednisone for 2 days, then 2.5 for 2 days.

(I never tried Xeljanz, which is more of a biologic in pill form than a DMARD.)

I wish you all the best in getting relief for your pain, fatigue and damage. God bless!!!

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SHINING_ON's Photo SHINING_ON Posts: 845
8/22/17 4:03 P

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Hi all, a quick MTX update: I'm at my third week at 15mg per week (up from the 10mg/week where I started). I'm still on the oral dose. She is planning to take me up to 20mg by the end of 2017. I'm responding well to it, apparently... it's hard not to remember what life was like pre-flare and compare it to that. But when I compare it to life in the flare then, yes, MTX is doing something positive for me. I usually get 2-3.5 days each week with reduced pain and inflammation, less stiffness, more energy. That IS better than all 7 days feeling like I've been run under a bus -- or worse.

But it still sucks.

I guess I'm still just adjusting to life with RA. I'd had flares before this one... but they always went away. I am giving up hope of it ever leaving now. It's time to adapt and move on.

PS - I will add that my MTX side effects are better except for the extreme fatigue/lethargy for ~48 hours after taking it. But that is still better than the pain I get as I feel the dose wear off each week. My last ~24 hours before my weekly dose is utter misery. That's how I know the stuff works.

Edited by: SHINING_ON at: 8/22/2017 (16:05)
~ K
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"Isn't it nice to think that tomorrow is a new day with no mistakes in it yet?" (Anne Shirley in Anne of Green Gables)


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SHINING_ON's Photo SHINING_ON Posts: 845
6/6/17 1:13 P

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Thanks so much for the welcome. emoticon

I misspoke when I gave my dosage. I am on 4*2.5mg tablets, so a total dosage of 10mg. I wanted to give a brief update simply to say that I'm finally starting to adjust. I've switched to taking them Friday night at bedtime, and as long as I get really good sleep (like 10+ hours) all weekend, I feel pretty energized through the weekend -- and especially during the week. The nausea still comes and goes but really isn't very troublesome. I am starting to lose some hair and I had some nail brittleness, but I'll talk to my physician about going up on the folic acid when she increases my dose in July. I'm also planning to ask for the injections.

The biggest change is to my pain level. It took about 4 weeks, but I started noticing a little relief. With each week (I'm at 8 weeks now), I've noticed a little more improvement. My energy is coming back and I'm more pain-free. So, to my surprise, my rheumatologist was right: I have a seronegative rheumatoid arthritis and/or ankylosing spondylitis. I'm, frankly, shocked - but just because diagnoses never come easy for me. We usually hunt for the answer for 20+ years first. Ha! Only took 10! emoticon emoticon

I hope this finds you all doing well and feeling the best possible. Thank you again for all your input, and I'll update more in a few weeks.

Be gentle to yourselves and Spark On!

~ K
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"Isn't it nice to think that tomorrow is a new day with no mistakes in it yet?" (Anne Shirley in Anne of Green Gables)


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PREACHERETT's Photo PREACHERETT Posts: 841
6/6/17 12:24 P

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Shining,
I have also been diagnosed with Seronegative RA.
I had a wonderful rheumatologist that diagnosed me and worked well with me. I was taking methotrexate injections and doing pretty well, I actually prefer the injections. I could not take plaquenil either due to eye problems. Then she went away and the next one put me back on methotrexate pills and Cimzia injections. I was doing well, then after a year, he took everything away and decided that I only had fibromyalgia. I went a year like that, and was in worse shape than before I was diagnosed.

So, I have been going to another one. I currently take 6- 2.5mg tablets of Methotrexate per week. I take it on Friday mornings. I do get really tired, not so much nauseous. I would say that Sunday is probably my worst tired day. Other than that, I don't have a real problem with it. My appetite is too good. lol
I think the side effects have gotten better over time.

I am also taking Cimzia injections bi-weekly.

Edited by: PREACHERETT at: 6/6/2017 (16:41)
"Never let yesterday use up too much of today" Will Rogers
"The problems in front of you are never as big as the Power behind you!"
"You can't expect a change, if YOU don't make one."

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BKWERM's Photo BKWERM SparkPoints: (193,679)
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4/25/17 5:13 P

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Welcome to the team, Shining.

Sorry to hear of your recent diagnosis.

I'm probably not a great person to ask about methotrexate as I detested it specifically for the reasons you cite. I took mine on Friday nights and then spent every single weekend feeling like crud for however long my rheumy made me take methotrexate (at least a year).

That said, I've heard that taking methotrexate by injection reduces those side effects but I've never had the injection so it's only hearsay. Hopefully, someone else can chime in with their methotrexate experiences.

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

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SHINING_ON's Photo SHINING_ON Posts: 845
4/25/17 3:21 P

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Hi everyone, I'm 34 -- still newly dx'd with seronegative RA.

I was on plaquenil for only a month before the rheumatologist took me off; they discovered I had what looks like pre-existing macular edema/retinal thickening. That's a tale for another day.

I started methotrexate two weeks ago. 4mg weekly to start with 1mg of folic acid. I was hoping people could chime in and tell me if it's a possible MTX side effect... or just in my head?

Doctor warned me to take the MTX at night before a day I could rest. I've been doing Saturday nights, and although Sundays are sluggish and queasy so far, they haven't been that horrible. That said... I'm actually more drained and queasy on Monday. And even worse on Tuesday... and last week, Wednesday, was my worst day yet. But then on Thursday, I was pretty much a-ok again as far as the fatigue and nausea goes.

I'm just drained physically and emotionally. Can't do full workouts, just short walks. Appetite is non-existent (not necessarily a bad thing, but struggled to make 1000 calories yesterday... and having the same problem today).

So, do the side effects just sort of linger and stretch out for some people rather than hitting them all at once in a single day? I'm actually thinking of switching to Sunday nights, honestly, if this continues. Then I can get my full weekend workouts in, and be nauseated and drained during the week. Not that I can afford that either... but I don't have much time to workout during the week anyway. Seems like it might be worth trying.

~ K
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"Isn't it nice to think that tomorrow is a new day with no mistakes in it yet?" (Anne Shirley in Anne of Green Gables)


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2/5/17 11:26 A

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Sorry to hear you haven't found a drug combination that works for you yet. Stay strong, eventually you'll find the right mix.

I was on Rituxan for 7 years and it was the first med that worked for me after trying Arava, Plaquenil, Methotrexate, Sulfasalzine, Enbrel, Humira and Orencia. I was recently taken off of it because it wasn't working as well and I just started Xeljanz on January 7. I'm not convinced it's started working yet but I feel a little better than I did a couple of weeks ago so who knows, it might have started. If it is working, I don't think it's working as well as the Rituxan did for me.

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

Dundas, Ontario, Canada
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RENEGADE by limiting unhealthy food and moving my body as much as possible.


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KELLY_SS's Photo KELLY_SS Posts: 4,990
1/14/17 6:33 P

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I was diagnosed in June 2014. I've been on MTX and anti-inflammatories since then. Six months later we added Enbrel and I was on it for about 9 months but it didn't help much at all. Then we went to Simponi Aria infusions which also did not work for me. Now we've gone to Rituxan and I have had my first 2 infusions but see no change at all. In fact, for about a month now I have been flaring worse and my pain level consistently stays at a 7 or higher on the pain scale. Of course our weather fluctuates all the time here in NW Arkansas, cold one day, warm the next, then rain, then snow flurries then 70 degrees the next day so maybe all these crazy weather changes is making things worse. I'm due for my next infusion in April. I have not had any bad side effects from anything I've been on so far except the MTX would give me a 'hangover' for about 2 days after taking it and was giving me mouth sores and hair loss and round-the-clock nausea so he lowered my dose from 6 to 3 tablets. I don't take prednisone. I did once when my PCP prescribed it for me while I was still waiting to see the rheumatologist for the first time. It sent my blood sugars skyrocketing, really messed with my vision and made me feel awful. I only took it for a few weeks. After that I was diagnosed with type 2 diabetes and haven't taken it again. When I finally got to see the rheumy, the first thing I said to him was I didn't want to take prednisone and he said ''that's fine because I don't like to prescribe it''. The Simponi Aria infusions left me with a headache that lasted about 24 hours and the Rituxan infusions left me with an even worse headache that lasted about 48 hours. No side effects from the Enbrel, it just didn't work for me.

I have no idea what we will try next if Rituxan doesn't do something good soon.

''I felt so good like anything was possible
I hit cruise control and rubbed my eyes
The last three days the rain was unstoppable
It was always cold, no sunshine

Yeah runnin' down a dream
That never would come to me
Workin' on a mystery, goin' wherever it leads
Runnin' down a dream'' .... Tom Petty

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RA & Fibro Warrior - Spoonie 4 Life -- Rockin' Red Foxes


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DEDICATED2HIM's Photo DEDICATED2HIM Posts: 4,397
12/4/16 4:06 A

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HI Brenda,
Wow it sounds like you have been through the mill of meds and problems.

Actemra did nothing for me and when my Rheum was new to me he immediately took me off of Actemra because it is a very high risk for intestinal perforation. (which is something you DON"T want to have). If you have ever been diagnosed via a colonoscopy, as having diverticulii then you would be at an even bigger risk.

Why can't you take Enbrel anymore?

cynthialottvogel.blogspot.com




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JANISMKW's Photo JANISMKW Posts: 1,339
12/3/16 10:43 P

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Enbrel, Acemra, Remicade, Orencia, Rituxan and Simponi are all biologics, the newer drugs, protein molocules I think, that are stronger immune-suppressants than the older DMARDs.

Methotrexate, plaquenil, sulfasalazine, leflunomide (Arava), hydroxychloroquine are some of the older Disease-Modifying Anti-Rheumatic Drugs (DMARDs).

So kind of interesting that your rheumy has thrown the sulfasalazine option in after all the biologics you've tried.
I did try it. I think the main side effects are stomach upset and GI things.

There is something called a "triple therapy" of sulfasalazine, hydroxychloroquine & methotrexate (3 DMARDs which have all been around for a long time) which studies show can be as effective as biologics for a fraction of the cost, and maybe less severe side effects. Combinations of 2 DMARDs can also be used.

Good luck!! I'll pray for you.

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BRENDAJ21's Photo BRENDAJ21 Posts: 180
12/3/16 7:40 P

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I am just studying and fretting over a choice of 3 meds to start. I was on Rituxan IV's had two of them and they did nothing to help my pain or swelling. I also was getting UTI's constantly and the last one went into my kidney and blood. I was on 2 antibiotics for 2 weeks. So I am now changing. Considering Actemra. Any advise?
The other two are sufsasalazine and simponi Don't want to take either of these.

Embrel 3.5 years loved it
Remicade 2.5 horrible, never worked and gave me drug induced Lupus
Prednisone good but gave me cataracts both eyes. I am on 5 mgs a day now since March.
Orencia loved it best 4 or 5 years no side effects stopped working.
placquinell got bad diarrhea
Can't remember any more.
Any advise on Actemra???

Edited by: BRENDAJ21 at: 12/3/2016 (19:42)
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DEDICATED2HIM's Photo DEDICATED2HIM Posts: 4,397
12/3/16 5:04 A

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Let's see if I can remember

Humira - did nothing to help me
Enbrel - worked but I got pneumonia and endocarditis (infected heart valves) Had to quit
Otezla- made me extremely depressed
Cimzia - did nothing
Actemra - did nothing
Stelara - worked pretty well but then came infections again and had to quit
MTX - I took in the earlier years of the disease. I only responded to the injectable form but then there was a recall and it became unavailable for a long while.

cynthialottvogel.blogspot.com




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SHADIE76's Photo SHADIE76 SparkPoints: (3,709)
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10/20/16 6:01 P

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I've been taking Cimzia for nearly a year and it doesn't seem to be helping at all. My doctor is now trying to get approval to switch me to Orencia.

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JANISMKW's Photo JANISMKW Posts: 1,339
10/18/16 10:16 P

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I have the beginnings of cataracts from taking prednisone, will need cataract surgery within 5 years I am told.

I have had bone loss, osteopenia (milder form of osteoporosis), from it.

Lab tests show that one of my immune factors, Immunoglobulin-G is low, and the Immunologist told me it is from prednisone. So it makes us more prone to catching and harder to get over infections.

Steroids are miraculous on reducing inflammation but do have serious side effects if taken long-term. For RA it is better to try to find treatments that really stop the disease process, not just tamp down the inflammation.

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TRVLTA00's Photo TRVLTA00 Posts: 1,022
10/18/16 1:08 P

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I'm curious about those of you taking prednisone long term. That helped me the best, but I've had 2 rheumatologists tell me I can't be on that long term. Have you noticed any significant side effects?

Sheila

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HMKITTEN's Photo HMKITTEN Posts: 465
7/31/16 10:01 P

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HI everyone,
I have been on most of the biologics at some point (all except enbrel). I kept having tolerance issues or allergies or they didn't work at all. Eventually we decided to try Xeljanz and, boy, am I glad I did! It only took about ten days to go to work--the fastest of any others I had tried.

I have noticed since I started that I have about ten days leeway where I can miss meds and not have it affect my treatment.

Let's do the rundown
MTX: evil. I was on it for years and got off once I started Xeljanz
Leufonomide: allergy
Humira: worked great till I developed a severe allergy to it
Remicade: worked okay but only for about a year
Rituxan: worked well for about three years till I developed an allergy to it
Orencia: worked for about two years
Actemra: didn't work
Cimzia: worked great for a year. Developed an allergy to it.

Edited by: HMKITTEN at: 7/31/2016 (22:02)

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BRENDAJ21's Photo BRENDAJ21 Posts: 180
7/5/16 4:38 P

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Thanks, I'll let you know after the IV tomorrow.
I am not as excited as I should be because I am fat, and I hurt so much it stops everything in my life. I am really praying it starts working soon.

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JANISMKW's Photo JANISMKW Posts: 1,339
7/4/16 10:59 P

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Hope your foot comes along well. Can you put weight on it yet?

I think it might take a little while for some of these meds to work... hope you feel better after this 2nd IV. I would think before your trip it should be working.

You must be very excited about the Maui trip!

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BRENDAJ21's Photo BRENDAJ21 Posts: 180
7/4/16 9:45 P

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I have just started Rituxan. I am getting my second load IV in 2 days. I was very, very concerned about the side effects. So far nothing. But it also hasn't helped my RA at all. I am still on 10 mg of prednisone a day. I am not sure how long Orencia took to kick in but I loved it when it did. For about 6 or 7 years. Then it just stopped. I have been on Embrel, plaquenil, methotrexate, Huge amounts of aspirin at first in 1992. Rimicade horrible ~horrible drug. Gave me drug induced lupus. AND didn't work.

I've been in bad, bad flares since January 16th when I went off the meds for a foot surgery. I am afraid to take Aleve or most OTC meds due to my liver. I drink way too much to have meds in there too.
I am still having trouble with my foot but it's getting better. Going to Maui Aug. 16th for 10 days so I need to get well.

And I didn't lose the weight I wanted to before Maui. Having my Hubby bring me food and drinks for 10 weeks and not being able to put weight on my foot really piled it on. So far this has been a hard, hard year.




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CD10895053 Posts: 8,040
7/3/16 11:51 P

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I've been on Xeljanz since April of 2015 and very minimal side effects. I've gotten a rash on my face and small spots here and there on my body, but so far they're tolerable. If the rash gets worse, my Rheumy will refer me to a Dermatologist.

I was diagnosed in 2008. Before that, I was on Celebrex, that gave me a rash. Vioxx that gave me chest pains. Up to 8 Aleve's/day. And I still had so much pain and was virtually an invalid, by the time I was finally diagnosed. At that point, I was started with 60 mg. of Prednisone and tapered. That was heavenly! I was also put on Methotrexate and Plaquenil. After so long, the MTX was stopped because of sores and elevated liver enzymes. My Rheumy started me then on Leflunomide, which worked, but after so long, my liver enzymes were elevated from that. My Rheumy felt that I was a strong candidate to get on a biologic, but I was scared of the side effects possibly and all the paperwork to fill out to get a cheaper co-pay! To make a long story short, I was at my wit's end with pain, so I knew I had to get on them. I started with Enbrel in about 2012 and that never kicked in, then it was Humira and that kicked in after 4 months or so, and was great and I loved it, but then had intestinal problems. It was stopped then and started again and it worked like before and then came the intestinal problems again, so that got stopped and I got started on Orencia. That kicked in around 4-6 months, and only got up to 1/2 it's potential, with no side effects. But after about 9 months of that, that was stopped and I started on this Xeljanz, and cross my fingers, that this will keep working. The Plaquenil was stopped about a year ago, because I was doing so well with the Xeljanz. The Prednisone has been down to 2.5 mg/day and has been increased with flares. I love the freedom of this Xeljanz because it's in pill form. It's so heavenly!! That's worth so much. When we travel, it's like any other bottle!! One thing that I don't like, is that for me anyway, it's a weight gaining drug. So I really struggle with this. With only able to walk 10 min. for exercise, I get my exercise with gardening and housework galore, etc., and shopping with a cart, and that does help I know. I fell a couple of days ago and sprained my worst wrist, my right one. The doctor took x-rays, and she said that my wrist was so fused with erosion, that it was hard to tell if it was broke or not, but they did determine that it's a bad sprain. So I'm wearing a brace and I'm getting better. That was an "Ouchy"!!

Edited by: CD10895053 at: 7/4/2016 (00:11)
2BDYNAMIC's Photo 2BDYNAMIC Posts: 61,161
7/3/16 11:21 P

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I am not taking any RX for this ......... sometimes IBU is all
Tried Celebrex and could not take.

Leader "Slightly Off the Wall" #1 humor team
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7/3/16 10:08 P

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I've been on Humira for about 3 years now. It works great. No side effects.

When I have somewhat of a flare (nothing like the pain of RA before Humira) I take can 5 mg of prednisone for 2 days, then 2.5 mg for 2 days. The flares can be related to very cold, stormy winter weather.

I do get bronchitis and bad asthma often, and thought it might be from the immune-suppression from RA meds. (I've had RA for 6 years, tried every DMARD pill for 3 years before Humira.) But I found out I have another auto-immune disease, Sjogren's Syndrome that has a symptom of "frequent bouts of bronchitis and pneumonia." So I am glad I don't have any pneumonia. And guess that, not the RA, is to blame.

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ROCKPORT9's Photo ROCKPORT9 Posts: 6,482
7/3/16 7:56 P

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I take 5 mg prednisone daily the past 10 years. It's my RA lifeline. 10 years ago, I tried Methotrexate but bad side effects the first month. Last year, I tried Arava- bad side effects in two weeks. A few months ago, I started Enbrel. I had allergic reaction, bad joint pains by the third week. Next, my RA Doctor wants me to try Humira.

Most of my RA problems are in my hands and feet.

My RA Doctor would like me off prednisone. I get down to 3 mg daily and my RA flares. emoticon

Edited by: ROCKPORT9 at: 7/3/2016 (19:59)
Laurel
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Central time zone


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BKWERM's Photo BKWERM SparkPoints: (193,679)
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7/3/16 7:38 P

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Which RA or other autoimmune disease medication are you currently on, how long have you been on it and is it working for you? Are you getting any side effects from being on it that others should be aware of? Do you remember how long it took to work for you?

Edited by: BKWERM at: 7/3/2016 (19:40)
My name is Joanna not Joanne, please and thank you.

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


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