Major Hip Pain .

[Damaged]

I stopped Xeljanz on Friday. The major headaches stopped right away however now I find myself unable to stand or walk. I restarted Xeljanz this morning but have ultrasound tomorrow in Vancouver. I am hoping the pain resolved itself tonight.

[sylvi]

Speak to your rheumy and ask them to change you to another drugs darling.xxxx

[Nitrobunny]

Xeljanz is the last biologic I tried and quit because of crushing headaches. I felt fluish and had deep joint pain and upped prednisone which got things back in line rather quickly. I’ve been fortunate enough to do ok on pred alone but I’ve gone through everything else so just okay is the best I can do and I am grateful for that. Best of luck -

[Damaged in reply to Nitrobunny]

I know what you mean. Xeljanz is the first one to help me but the headaches are daily and intense. I am choosing to live with headache as I currently cannot stand or walk without excruciating pain in left hip. Literally yelping with every motion. I hope she finds another JAK inhibitor that does not give me headaches.

[Nitrobunny in reply to Damaged]

All the best to you. I hope you can resolve the hip pain and keep things in check.

[Sa61]

So sorry to hear about your pain.

How long have you been on Xeljanz?

I remember the hip pains and it was very hard to turn over in bed. At that time I was on Xeljanz And leflunomide. The mattress was most of my cause, it took over a month of stretching in bed when I woke up in the morning for the pain to ease. I made sure to drink more water. I never had headaches from Xeljanz. I’m not a big fan of headaches. I now am on Xeljanz alone.

The 5mg twice a day. I have been on Xeljanz for 4 years. Yes I still get flare ups just not as many. I look forward to the after flares.

I find if I miss a dose or just take one 5mg tablet a day instead of the 2 times after close to 2 weeks my stiffness is really bad.

Also maybe if you also try an anti inflammatory diet. Maybe that might help. I am trying to adjust the foods I eat to get into the anti inflammation foods.

I try to stay away from prednisone. The Pharmacist where I worked said that it is not a good drug to be on for a long time.

I hope you are able to find the best med for you. I am praying for less pain and more

pain free days for you and all who suffer with pain.

Sending you gentle hugs.

[Damaged in reply to Sa61]

Thank you and I agree with your pharmacist, Prednisone is a dangerous drug. I have a psychotic reaction to it, it makes me crazy lol 😂 I am allergic to anti inflammatory as all contain Naproxen. My inflammation has been below 1 since it came down. I stopped all drugs because of so many reactions and it triggered a spontaneous remission. The inflammation has not returned since Dec 2017.

I think trying to push 20k without drugs was foolish of me. I did this to myself so shame on me. I will not do it again. I will be more cautious. I did not think I could hurt myself walking.

I use CBD vape for inflammation and THC vape for pain. It helps me manage without opiates.i am seeing Rheumatologist after my ultrasound. I just will skip walking today and hopefully she can give me a shot of cortisone. I have Tendinopathy and bursitis in hips as well so perhaps that is why ? Not sure but I am sure it will be resolved. Thank you all for support. It is hard not to panic when pain is so intense.

[Hidden]

What worries me about Pred, is that a lot of people think it's a wonderful pain killer, and it DOES relieve a lot of pain and inflammation. But it also causes Osteoporosis. As I know to my cost. Pred is the same as Cortisone.

[Damaged in reply to Hidden]

I do believe doctors know and try to decrease dose as soon as they can. It is essential at times but dangerous in long term to so yes we already have week bones do not need that to get worse. It is so difficult when you desperately want to stop the pain. I am hanging in there. I am optimistic the Xeljanz will kick in and make it manageable again. I need to keep walking.

[nymima01]

Before my daughter was diagnosed with Her form of RA (Spondylitis Ankylosing) and schlerosis in her back, she too had a bout with terrible hip pain which left her immobile! She worked on her feet at that time and she couldn’t go to work. When we finally put all the pieces together, we realized she had RA symptoms and she started on Humira. Her pain levels are much better now. She changed jobs however and is not on her feet as much. I remember well the pain you are referring to. It was unbearable.

[nymima01]

Note: My daughter was prescribed prednisone while awaiting test results and she went into a bad bout of depression.

[Damaged in reply to nymima01]

I hope she is feeling better. Gosh I feel bad complaining when so many young people are affected. I could not imagine trying to work in this condition. I hope the Humira keeps working for her.

[nymima01 in reply to Damaged]

We realized that she developed RA in her mid 20’s. She is 42 now and this year is when she finally tested for RA! So every time one of her joints would give out due to pain, we attributed it to “pulling her back out”, or “she stepped the wrong way down the stairs and put her knee out”, etc. We didn’t realize these were flare ups from RA. Finally she was diagnosed with UC - ulcerative colitis and this was a game changer! The doctor referred her to an RA specialist and the rest is history. I cannot tell you how many days of work she missed because of the terrible joint pain! I hope you will find something to help you soon! Blessings to you on your journey. Xxoo

[Damaged]

Got through ultrasounds in Vancouver. I was told 10:45 and it was at 12:45 so it cost me 30. For parking. So ridiculous. My hip is in complete agony. I have been yelping loudly all day. It has been exhausting. I so wish I could go for a walk. I am so stressed and this smoke from all the wildfires is intense today. Good to stay in .

[nymima01 in reply to Damaged]

Better days coming for you. The doctors will figure this out. Hope it’s soon.

[grandma27]

If it's a biologic, I don't think you can successfully just stop. I had a horrible experience with an RA biologic (Remicade). I had to get back on it, and concurrently take an old fashioned, tried and true normal drug for several months before I could quit the biologic.

For the first two years, however, it worked great.

[Damaged in reply to grandma27]

Yes, I agree , it was not a very good decision. I went straight back on them. Everything but hip has settled down. My hip is still insanely painful. It is almost like I pinch a nerve when I move the wrong way or put weight on leg.

Maybe it will improve on its own but it is now day four so not terribly optimistic.

[bassiefromholland]

I hope it will for you!