Inflammation

By Jill Maxine

1 min read

I had spine surgery this past November. It was a 4 level fusion with rods and cages. They also put in a bone growth stimulator.

I had to stop taking my RA meds including my anti-inflammatory meds 2 weeks before surgery.

Post spine surgery RA medication

At my 3-month post-op appointment, they told me I could take my Xeljanz and methotrexate.

Then the doctor told me I needed to wait another 3 months without my anti-inflammatory meds. I was speechless!

The hope I had for how I would feel after surgery has been crushed. The surgery was a miracle! The horrible pain that I went into the hospital with is gone! I can walk now.

Joint and hip pain

Well, almost. Every joint in my body is screaming!! Especially my right hip.

Who knew how much my anti-inflammatory helped my everyday living until you can't take it for 6 months?

I'm trying turmeric with pepper.

Has anyone else gone through this?

This entire event has been so emotionally and physically exhausting.

Help!

Jill

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Franki King Moderator & Contributor
Hey Jill, Thank you for sharing. What a bittersweet time! I'm thrilled you are able to walk now. I don't know how long you were unable to walk but regardless, that must be an incredible feeling. I'm so sorry to hear about the consequential joint pain after stopping your meds. If I understand your timeline correctly, does that mean you are without your medication for another 3 months? I haven't been in your exact situation but I have experienced coming off medication after having relied on it for 8+ years. The difference is I took myself off them... which I completely regret now and do not recommend to anyone but I did learn a lot from it. The reason I stopped taking my medication was that I wanted to see if I could heal myself and make progress by taking a holistic approach, without the meds. Like you I was taking turmeric and other supplements plus focusing on improving every aspect of my health like diet, movement, stress, and sleep. My biggest takeaway, and what I felt inclined to share with you, was that while these methods did (and still do) impact my overall well-being for the better, I wasn't able to decrease my inflammation to the degree I wanted to. I believe my body was too shocked and stressed out from the swift removal of medication I had been relying on for so long. I eventually realized the only likely thing that was going to bring me back to low or no pain was more medication. Whilst you are waiting for the go-ahead from your doc to get back on your RA meds, I would recommend looking at the things you can control such as your diet, sleep, movement, stress etc. These are all big triggers for me and I know when I give these areas of my life more love and attention, my joints feel so much better! I hope this helps. Stay strong! Franki
Jill Maxine Member
 Thank you Franki. And yes, I am 5 months post op, with no anti-inflammatory meds. That's why I tried Tumeric. I'm happy to say that it has improved my joint stiffness. One more month until I'm 6 months post op! I will see my rheumatologist and get back on track again. Thank you for listening!
1. Richard Faust Community Admin
 Hi <inline-mention username="Jill Maxine" user-id="4208305"/>. Glad to hear things are looking up a little. Mind if I ask if you feel like the Xeljanz and methotrexate are controlling your RA, more specifically is it as effective as before you stopped for the surgery? I ask because it is not uncommon for the particular treatment to not be as effective when going back on it after a break. Your doctor should be able to provide more information and help determine if this treatment is still adequate. Wishing you the best and please know that people here understand. Richard (RheumatoidArthritis.net Team)
2. Jo Johnson Moderator & Contributor
 <inline-mention username="Jill Maxine" user-id="4208305"/> Way to hang in there Jill! I hope the Xeljanz and MTX are kicking in and that you have a great 6 month post op visit! I have had to interrupt my meds for surgery in the past, specifically a bilogical and prednisone. It was very tough for me to deal with decreased prednisone during my immediate pre and post op period. I am a Retired Nurse. The ortho docs I worked with requested we not use NSAIDs for broken bones as some studies show they delay bone healing. Perhaps this is why you were able to go back on your immunosuppressants but not NSAIDs? Anyway, my hat is off to you for persevering through a very tough surgery and recovery. Best Wishes for continued healing and Hope for more comfort and mobility in your very near future! Jo
Jill Maxine Member
Thank you Richard. Your response gives me something to think about.
1. Richard Faust Community Admin
 Hi <inline-mention username="Jill Maxine" user-id="4208305"/>. I should have been more careful in noting which drug you were on, @RA Sam is absolutely correct about Xeljanz not being a biologic. In fact, it has been a little bit of a pet peeve of mine how often it is referred to as one, even sometimes by medical professionals. In the past I've cited this article from one of the leads for the drug at Pfizer simply titled "Tofacitinib is not a biologic:" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5198242/. I also want to note for future reference (and for anyone else out there) that when a biologic does lose effectiveness, it is not always due to antidrug antibodies and in these cases it may be possible to cycle back to a drug. In this interview a specialist in utilizing these drugs for autoimmune conditions (although in his case gastroenterology) notes "if the loss of response is not due to antidrug antibodies, it may be due to a change in mechanism, or what some doctors call mechanistic escape. That principle, in theory, means that the patient had a different inflammatory pathway become activated:" <a href='https://www.gastroenterologyandhepatology.net/archives/november-2019/restarting-biologic-agents-after-a-drug-holiday/' target='_blank' rel='noopener noreferrer ugc'>https://www.gastroenterologyandhepatology.net/archives/november-2019/restarting-biologic-agents-after-a-drug-holiday/</a>. He continues on that "What we have started to see is that doctors can cycle back to the drug that the patient lost response to in the first place. Researchers have now demonstrated that this can be done safely in many patients as long as the loss of response was not due to antidrug antibodies. That is the one exception where it is not possible to go back to the original drug." Wishing you the best. Richard (RheumatoidArthritis.net Team)
Erin Rush Community Admin
I am so glad your surgery was successful, <inline-mention username="Jill Maxine" user-id="4208305"/> ! That's wonderful news. I know how debilitating back pain can be. That said, I am sorry you have had to take a break from your RA meds. Richard brings up a good point about potential diminished efficacy, but I do hope that's not the case for you. I hope that your joint pain eases (though I know it may not seem likely right now). Has your doctor been able to offer any suggestions while you wait out the next few months? Six full months of pain is a long, long time to be hurting! Hang in there and please keep us posted on how you are doing, if you feel comfortable doing so. Best, Erin, <a href='https://rheumatoidarthritis.net' target='_blank'>RheumatoidArthritis.net</a> Team Member. 
1. Erin Rush Community Admin
 @RA Sam, I don't know why her doctors recommended the extended time off meds, either. I'm sure they had their reasons. But, I hope getting back on her treatments goes smoothly! Best, Erin, <a href='https://rheumatoidarthritis.net' target='_blank'>RheumatoidArthritis.net</a> Team Member.
Jill Maxine Member
Hi everyone! My rheumatologist wasn't on board with being off anti inflammatory meds for another 6 months. I did confer with my surgeon, he said the meds would interfere with bone growth. I have a bone growth stimulator just under my skin. I couldn't walk or stand prior to surgery. I went through so much to have the surgery. I decided to listen to my surgeon, I didn't want anything to interfere with bone growth. It was a major surgery and I can walk and stand now. I'm very grateful that the debilitating pain I went into the hospital with is now gone. It is a miracle. Lol Thank you everyone for your caring thoughts!
1. Erin Rush Community Admin
 <inline-mention username="Jill Maxine" user-id="4208305"/>, oh, goodness. It's always a challenge when you have two physicians that don't agree on your treatment course! I realize they both have your best interests at heart, even if they have two different ideas of how to achieve your best health goals. I hope the months pass quickly and you get a break from the RA pain. I am so glad (as I mentioned above) that the surgery was a success and that you are healing well. I hope you get some speedy bone growth, too! Best, Erin, <a href='https://rheumatoidarthritis.net' target='_blank'>RheumatoidArthritis.net</a> Team Member.