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1/31/18 5:48 A

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Actually medical marijuana is legal throughout Canada. It's recreational marijuana that's not legal yet.

And, most Licensed Producers offer compassionate pricing for those who can't afford much.

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

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JHADZHIA's Photo JHADZHIA Posts: 14,305
1/30/18 9:30 P

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I attended an online seminar all about it, it was quite comprehensive. Its still not legalised in this province. I am not really interested as I know it would be cost prohibitive for me.

When one door closes, I simply look for another to kick down! Starting over isn't a crime, its Life!
A smile is a curve that can set a lot of things straight! V. Borge
BKWERM's Photo BKWERM SparkPoints: (182,025)
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1/30/18 6:04 A

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Have you ever considered a medical marijuana licence, Linda? I'm sure you could get one.

I made my own pain cream using cannabis and it works great. I also make my own canna-infused oil and put it in capsules and take them for pain relief, anxiety and insomnia (and sometimes fun, too emoticon ).

There are a lot of misconceptions out there about marijuana so if you have any questions or fears, please let me know.

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

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JHADZHIA's Photo JHADZHIA Posts: 14,305
1/29/18 11:44 P

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Sorry to hear about the Rituxan :-( Its nice to hear from you! I would have preferred the infusions as the Remicade had been so effective, but I started reacting to it and it escalated quickly to the point of anaphylactic shock. They give you about five years before they usually start reacting. At least I got the max out of it. My RA is considered to be in remission but the osteo and IBS are kicking my butt. Strange since the Xeljanz should block the same pathway in both diseases.

When one door closes, I simply look for another to kick down! Starting over isn't a crime, its Life!
A smile is a curve that can set a lot of things straight! V. Borge
BKWERM's Photo BKWERM SparkPoints: (182,025)
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1/29/18 5:31 P

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I guess I should update my Xeljanz story, too.

I started Xeljanz a year ago in January because it was determined that the Rituxan infusions that I had been on successfully were what was causing my chronic cough so I had to stop getting them unfortunately.

Personally, I don't feel the Xeljanz is working as well as the Rituxan did but my rheumy says my numbers are good AND he told me at my appointment a couple of weeks' ago that I have severe osteoarthritis in my left knee. emoticon

I believe the Xeljanz periodically causes me to have loose stools. It doesn't happen every day but usually every couple of weeks for a couple of days. I think it's the Xeljanz since I rarely had this issue prior to taking it.

My blood pressure has also increased a bit, which I was told is a common side effect. Fortunately, I've always had low to normal blood pressure so it's not being raised enough to be harmful (at least at this point).

My rheumy told me if I felt I could stay on Xeljanz for the short-term, it would be good since I had already tried so many treatments and there weren't many left to try. He suggested staying on the Xeljanz for a couple of years and maybe by then, there would be new medications to try.

I take two 5-mg tablets per day.


KAREN/LINDA: I haven't noticed my hair being any thicker either. If I remember, I'll ask my hairdresser about it at my next appointment.

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

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JHADZHIA's Photo JHADZHIA Posts: 14,305
1/28/18 11:11 P

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Its a shame this thread is two years old. I started Xeljanz a year ago and am taking four tablets daily. My specialist actually said this medicine wasn't as strong as the Humira. I felt it wasn't working any more and wanted a switch. I have no side effects what so ever, which is a shame, I would LOVE to get thicker hair!!
I hope those of you on it are doing well..

When one door closes, I simply look for another to kick down! Starting over isn't a crime, its Life!
A smile is a curve that can set a lot of things straight! V. Borge
KAREN2LOSE55's Photo KAREN2LOSE55 Posts: 8,040
12/30/16 12:39 P

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The cream is called Clobetasol Propionate.

I thought of a couple more things to tell you about anyway, and Xeljanz has caused me to gain weight. I think that it depends on each one's body, because people lose weight with it too. I'm up over 200# again, which isn't good with having RA and being only 5'2". I can't think of the other side effect, so it must not be too bad. Ha. I'll let you know when I remember it. I wish you the best and new wonders. I feel the best I ever have, with being diagnosed in 2008 and having horrific pain now and then 15 years before that. So I love it!

Karen from Minnesota

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BKWERM's Photo BKWERM SparkPoints: (182,025)
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12/30/16 11:07 A

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Thanks, Karen. I had heard about the rashes from the pharmacist. Do you know what the cream is called that you use?

My rheumy told me it would probably start working within 2 to 3 weeks.

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

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KAREN2LOSE55's Photo KAREN2LOSE55 Posts: 8,040
12/29/16 8:14 P

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Joanna, I do remember about the side effects right away. It took from Feb. of 2015 to April to kick in. The first side effects were little spots here and there. Like a bite and then it would itch and leave a mark. I have one about the size of a dime on the front of my right leg. I have a few here and there that are about the size of a pencil eraser or smaller and they're just a neutral feeling. Nothing at all since getting past the itching. On my face too, that was on each side of my nose. That also itches and then gets more red and inflamed and then calms down the cream I use. I have a prescribed cream that really helps, but can't be used all the time. First two weeks sparingly and then sparingly as needed after that. I put it on about twice a week or less and is controlled. I also have cold-like symptoms and my voice is softer, but nothing scary. One of the side effects that I love and you could too, hopefully if it would. I have a lot thicker hair!! My Rheumy told me that Xeljanz was first developed for Apolicia. (sp?) I can't think of anything else that is important to say. I wish you the best of luck once you start it!! emoticon

Karen from Minnesota

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JANISMKW's Photo JANISMKW Posts: 1,335
12/29/16 3:46 P

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Maybe you could call the company that makes the vaccine?

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BKWERM's Photo BKWERM SparkPoints: (182,025)
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12/29/16 1:16 P

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Good afternoon.

I'm supposed to be starting Xeljanz soon. I had my pneumonia and shingles vaccinations two weeks' ago and the nurse practitioner said to wait two weeks before I start it since the shingles vaccination is a live one but the pharmacist said to wait a month. My rheumy's office is closed over the holidays so I can't ask them. DH suggested splitting the two and start it after 3 weeks.

Karen, do you remember the process for when you started yours? Also, did you have any side effects right off the bat? I wanted to start it during the holidays so if there were immediate side effects, I'd be at home and not at work.

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

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JANISMKW's Photo JANISMKW Posts: 1,335
8/10/15 7:50 P

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Karen, dear, I am so happy for you that you are finally finding relief! Yay!!
I think the pool will be great for you... you can really workout without putting weight on your feet.

Best to you too Cyndi!

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4CYNDI's Photo 4CYNDI Posts: 15,305
8/10/15 3:24 P

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Karen, I'm so happy you are finding relief! Have fun at the pool.

Cyndi C.A.M.O.Crew BLC 38
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KAREN2LOSE55's Photo KAREN2LOSE55 Posts: 8,040
8/10/15 1:41 P

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I'm so happy to tell you all that I truly believe that the Xeljanz has been kicking in more and more! Yippy Skippy! I can sleep for the first time, with my arm under my pillow. So I'm sleeping better too. My last blood test was normal and the cholesterol test was normal too, which makes me happy, because Xeljanz can mess with the cholesterol numbers big-time, sometimes! I'm going to check out our local pool for open swim to start and then see about the arth. classes, which I feel will benefit me so much. I hope you all are doing good!

Karen from Minnesota

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KAREN2LOSE55's Photo KAREN2LOSE55 Posts: 8,040
6/17/15 9:27 P

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Thanks everybody and it's so good to get so much input. I'm wishing you all the best of treatment too. As we go on in life with this disease, we learn all about what works best for others and then hopefully for us too. I'm going to look Tai Chai up on YouTube because we're so out in the middle of the sticks. emoticon

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JANISMKW's Photo JANISMKW Posts: 1,335
6/17/15 9:11 P

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I have taken Tai Chi classes at the YMCA and really like it. A lot of martial arts studios and senior centers offer it too. It's very good for the joints. And no impact.

I think having an in-person teacher is beneficial, but there are a lot of DVDs available (on Amazon, etc.) "Tai Chi for Health by Terry Dunn" (the closest to my class at the Y) and Tai Chi for Arthritis with Dr. Paul Lam" are two good ones.

Karen, the stationary bike does sound like a great option for you.

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4CYNDI's Photo 4CYNDI Posts: 15,305
6/17/15 7:20 P

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Karen, I am so glad to hear you are finally seeing some positive results. The recumbent bike is great exercise with no impact. I need to start using mine again.

My last visit with my rheumy wasn't great. My vitamin D is really low and I now have to take a large amount of it for the next year to try to get it back up. I have also recently been diagnosed with osteoporosis, which I understand is common in those of us with RA, plus it runs down my father's side of the family. It was just a matter of time in my opinion before it was diagnosed.

I get the infusions so he's going to add a once a year infusion to one of my upcoming treatments. My dad has to give himself a shot every day for his. I hope mine doesn't come to that as I have a needle phobia. Ah well.

Have a fun day! I'm glad your hint worked and that your men are stepping up to help out.

Cyndi C.A.M.O.Crew BLC 38
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HS Cyndi RavenPuff - Hogwarts 21, 22, 23

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KAREN2LOSE55's Photo KAREN2LOSE55 Posts: 8,040
6/17/15 5:56 P

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Thanks for your response to me too. I know what you mean about loving responses from fellow sparkers when it's directed to them. I love that too. It really goes to show that there's a same interest and care and support along with it, so thank you for that! I'm so happy that you found something that really helps you when you most need it. I'll have to check out the Tai Chai, but there again, I doubt that we have anything like it in our country area with the smaller towns surrounding us. I like what you said about it taking you slow and that you can move at your own pace. As far as our own pool, oh my, my husband and I have thought of that so much. But the main problem, and the reason for many not having one here in MN, is that they have to have at least 3 weeks to heat up well enough that one can go in it. Our water is cold year around here, you know. And this has been a cold spring, so it really would take a long time. We only have in the 60's today. This is rare because the normal temp. this time of the year would be 75-80 degrees and then still though, it gets down to the 40's at night, so that's why too, the best would be a heated one with being enclosed. And the the up-keep, etc., just doesn't make sense for us anyway. I think that when we get more towards retirement age and get a mfr's house or modular house, we could get a whirlpool tub. That's probably the best reality thought at this time. If I really am having a flare up, I will get into our regular tub and that warm to hot water is heavenly. The shower helps alot and makes me practically cry for how it feels so good, but that bathtub is surrounding one, and that's lovely to say the least!

Ok, so this is getting longer than I want, so I'll try to make it brief with what I have to tell you about my RA appt. just this last Monday, the 15th. It went rather well. My liver enzymes were back down in the normal range and that was so good to see and my Rheumy and me feel that the Xeljanz is working to a certain degree. For example, I've had a couple of fingers that would stiffen straight out on me, every now and then and then it'd hurt like the dickens' to get it straight again. My hands and feet aren't ripping so much, like having rubberbands on the sides on your feet and hands. He feels that my thumbs and my right wrist are so bad from the damage done before meds. You know how when we have pain for so long and we go to the dr. and even with blood tests they can't find anything wrong??!! I was on Celebrex and Vioxx and alternative remedies and nothing helped. I got to literally be an invalid! Finally it was my Chiro who saw my swollen, warm and blue fingers one visit and told me that I needed to see my MD because he was pretty sure I had RA and sure enough. In 2008, it finally showed up in my blood and did it ever. My numbers were very high and I'm considered a severe case. My Rheumy didn't feel that the IV's would benefit me that much more, so we're hoping that this Xeljanz will kick in more and more. He said that it's working but very slowly and hopefully will get stronger. He also said that Xeljanz is similar to Humira with the way that it works and it's also noted it tests to be less toxic to the liver than the others, so that's a good thing. Like I said before, I loved Humira, so we'll see how it's cousin works! ha! He referred me to a Podiatrist because of my painful feet and crooked toes. They're starting to curl on top of each other. So we'll see what that dr. says. That appt. on the 29th of this month. My body has always had good iron counts, which I'm thankful for. All my counts are normal all the time except for the liver test. And yes, I have thought of a pain specialist and will think of it all the more if this Xeljanz can't take care of my pain enough. I can't take Tylenol either or any NSAIDS because of my liver. My Rheumy wants me to use my recumbent bike for exercising instead of the walking because of my painful feet and because of harming them more. So I'll be getting on the recumbent bike more for trying to get this weight off that I've gained. Yes, I do take breaks between the housework. Yes I do. I feel that I could get up and move more and just try not to sit so long. My husband and son washed the windows of the whole house today. I just can't do it anymore and I told my husband that we may have to hire a housekeeper and he got going on getting it done with our son. Ha! It pays to hint!!

Ok, I'll stop now! Have a better day too!

Hugs, Karen

Karen from Minnesota

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MIAMIRN's Photo MIAMIRN Posts: 2,403
6/15/15 1:32 P

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Hi,

I see where your coming from. Golly! It must be hard!! I'm so sorry your going round and round with biologics and you can't take Methotrexate, liver enzymes and all. You seem to be very active with housework. Do you take breaks between housework? I know I have to rest a lot between activities and exercises. Sometimes for two to three hours before I'm back to being okay. Have you tried going to a pain specialist? Not a clinic, but a real private specialist that has a degree in pain management and that's all he does. I don't know if I ever could have gotten to the place I'm in even with the RA meds working if it wasn't for the pain meds I'm on. I'm not the kind to take pills, but after being on a level chronic level 8 on a pain scale of 1-10 for several years, I decided to give it a try. At first I had some side effects, fatigue and dizziness, so he lowered the dose a bit and then slowly raised it. SInce I can't take Tylenol because it affects my liver enzymes, like you and I can't take NSAID because I'm allergic to them the doctor prescribed straight hydrocodone. It's called Zohydro. Yes, it's addictive, but I'm chronic and if I need for some reason to stop my pain specialist knows how to detox me without undo affects. It's just part of life for me. I believe, along with my doctors that my high activity has helped me to tolerate and metabolize the RA meds faster and better. I finally have a normal hemoglobin (iron) count! Last visit I asked why my iron all of a sudden went up when I've had to stay on iron pills and my count has stayed down with it. My Rheumy said, it's the fact that I'm exercising. My whole body is improving the more I move and my body gets better circulation. I know it must be frustrating to not be able to have a pool or water therapy. Let me suggest an above ground pool? How's that? I see many people in Miami have them for the summer. It would at least give you a few months of pleasure and better mobility having one. If you can't may I suggest Tai Chi. There's a forum here for it. It's very slow, but it has helped me a great deal! It's slow and you can move at your own pace. Golly I wish I lived in the boonies! To be out there with nature and animals. What I wouldn't give.

Thanks for posting a response to me. I really like it when members share with me. It's lonely without fellow members to answer back and forth. Speaking of which. I have a site you might be interested in. It's called. MyRAteam. It's really great! It has a lot of members and it's very interactive.

Have a better day. I wish you well

emoticon emoticon

My name is Elona. I live in the Philippines.
Time Zone pending.
Love life! Never, never give up! Never give in, never give in, never; never; never; never give in nothing, great or small, large or petty. Never give in except to convictions of honor and good sense-Winston Churchill.When you have a lemon, make lemonade!


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KAREN2LOSE55's Photo KAREN2LOSE55 Posts: 8,040
6/15/15 10:37 A

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Today I see my Rheumy, and I hope that something can be done to relieve my pain. Since I was diagnosed with RA in 2008, I've been going around and around with finding what would relieve my pain and nothing has given me relief enough to be real active again. I started with the biologics about 3 years ago and the best one was Humira for about 1 year and Enbrel before that never kicked in. I had to give up Humira because of side effects. Orencia never kicked in. I've been on Xeljanz now since the beginning of April and it hasn't kicked in, but I do have side effects and the main one is elevated liver enzymes. And my swollen joints are a sign that it's not working to relieve the erosion anyway. I've had alot of trouble with elevated liver enzymes. I had to stop Methotrexate because of it. Also Plaquenil was stopped because of not helping anymore. So the worst thing about all this is the cont'd bone erosion and pain with trying to find what works with the waiting period.

As far as a pool, I don't have one nearby to make it beneficial. I try not to lay around. We have 3 stories of our old farm house and I'm forever doing laundry, etc. going up and down stairs. I can't imagine lifting weights! Ouch! My right wrist does not bend. It's getting tougher to write. I will not force it.

I would love to swim if there was a pool closer. We're out here in the middle of the sticks!

Thanks for your help!

I more than likely, will be getting on an IV. My Rheumy has talked about that for quite some time, but has wanted to try other injections first and now this pill form Xeljanz. I would love if this Xeljanz would work, but with my liver enzymes and with only being on half a dose, I don't think it will work for me. We'll see how the IV's work.

Karen from Minnesota

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MIAMIRN's Photo MIAMIRN Posts: 2,403
6/3/15 11:41 A

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emoticon emoticon This is not about Xaljanz, but I thought I would give you some information about my pain treatment as you are in so much pain.

I have a severe case of RA. I see a pain specialist once a month. He has prescribed Zohydro Extended 40 mg (the highest dose available) with a back up for breakthrough pain. Zyhydro is plain Hydrocodone without Tylenol. I usually don't need more than one back up hydrocodone with Tylenol a day. There are days I don't need any pills for breakthrough pain. One thing I've found to be a GREAT help is swimming. Even if you don't swim just walking in the water is a big help. Have you been in Physical and or occupational therapy? I also practice Tai Chi. The key is to get on pain medicine that will enable you to be active. The worst thing you can do for yourself is lay around. It slows circulation, produces more pain and worsens the RA destruction. I can't say it's easy in the beginning. I had to work through a lot of pain even with pain meds to get to the place I am now. I swim 6 days a week, practice Tai Chi daily, lift weights daily. I just got my Lifeguarding certificate two months ago just for fun. Lol. Please don't lay around. It's the worst thing you can do for yourself. Oh and I walk everywhere I can. I hike 4 miles a week also. Good luck! You can do it!!!

Edited by: MIAMIRN at: 6/3/2015 (11:44)
My name is Elona. I live in the Philippines.
Time Zone pending.
Love life! Never, never give up! Never give in, never give in, never; never; never; never give in nothing, great or small, large or petty. Never give in except to convictions of honor and good sense-Winston Churchill.When you have a lemon, make lemonade!


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KAREN2LOSE55's Photo KAREN2LOSE55 Posts: 8,040
6/3/15 8:44 A

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Thanks Lisa! emoticon

Karen from Minnesota

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LISAPERSISTS60's Photo LISAPERSISTS60 Posts: 4,276
6/3/15 6:35 A

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Karen, I haven't tried Xeljanz and really don't know anything about it but I'm sorry you are in so much pain and having so many side effects. My Rheumy told me that it can take 2 to 3 months to notice improvement from new medications. Maybe that's why yours wants you to wait until he sees you again. I keep praying that they find something that works for you. Good luck at the Rheumy and keep us informed. emoticon

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KAREN2LOSE55's Photo KAREN2LOSE55 Posts: 8,040
6/3/15 12:18 A

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Thank you so much, Janis. I have to tell you that my liver enzymes are up, and they're watching that for sure. Ugh! I'll let you know what my Rheumy says after my next appt.

Karen from Minnesota

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JANISMKW's Photo JANISMKW Posts: 1,335
6/3/15 12:01 A

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Dear Karen, Sorry to hear that the Xeljanz doesn't seem to be providing you relief after this much time. Sorry you are in so much pain. And good for you pushing through it to exercise.

I asked my rheumy about it and he said he wouldn't have me try it because MTX and lefleunamide had both raised my liver enzymes and Xeljanz also is prone raise the liver enzymes.

Must be comforting that you see your rheumy again soon. Best wishes. You're in my prayers, amiga.

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KAREN2LOSE55's Photo KAREN2LOSE55 Posts: 8,040
6/1/15 7:01 P

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Thanks Cyndi, you are so sweet. Thanks for the support and encouragement.

Karen from Minnesota

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4CYNDI's Photo 4CYNDI Posts: 15,305
6/1/15 6:52 P

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Karen,
I'm so sorry to hear that you aren't getting much relief to your pain & inflammation right now. emoticon I've never heard of Xeljanz, let alone tried it. May it start working for you and all the side effects just go away!

Cyndi C.A.M.O.Crew BLC 38
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HS Cyndi RavenPuff - Hogwarts 21, 22, 23

Kyndi (Kynthia) Bea Goode ~ summer ~ Hobbit/Human
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KAREN2LOSE55's Photo KAREN2LOSE55 Posts: 8,040
6/1/15 5:06 P

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My Rheumy took me off of Orencia and Plaquenil the first of April because of them not helping me well enough. So I've been on the pill, Xeljanz, since that time and it hasn't kicked in with my pain, but I feel that I have a few side effects, that may be from it. I feel like I have a cold all the time and that's one of the side effects. I have one little patch on my leg that looks like ringworm and that could be from that. Earlier, I had a week or so of loose bowels and that seemed to go away. For pain, I'm only on 5 mg. of Prednisone and this bothers me because I have distinctive more pain. I've emailed my Rheumy and he said that I should keep with the same medications and he will see me on June 15th, so I'm looking forward to that appt. He never likes the look of my right wrist and I know he really won't like it this time, because it's about twice the size of my left one! My feet are so bad too. I pushed through the pain this morning for a 15 min. walk. I'll get on my recumbent bike this afternoon because that's easier to do than walking really, and it counts faster too, with the minutes! I like that! So I'm just seeing if anyone else has tried Xeljanz and what their stories are.

Karen from Minnesota

"Little by little whittling my middle!"


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