I am so so so happy to read your response! My goal is to try to get this under control at some point without meds as well because I am so scared of cancer and other long term side effects of these meds. I started CBD topical , took a break from CBD tincture but need a new one to try? Seemed to help a lot!,. I have big goals to change my diet like you said so now hearing from you the effects will help motivate me even more! My rheumy referred me to the naturopath at his office so I am hoping for a treatment plan like this (vitamin IVs etc) Thanks again!!
I was shocked to see CdA for you too! I work at SHMC! And yes I’m at Arthritis NW too, my rheumy is Dr. Wright. He also just referred me to Dr. Valley (naturopath there?) who I am really hoping can help a lot with my baseline too.
Awilson
my advise is to go hard core on health. You maybe surprised on how it can change you. I have done a lot of research on going organic, no gluten, there is a great cook book on anti inflammatory . Worst-case yuo get your body extra strong and build up immune system. look up ashwanganda as a supplemement. if you are in a state that has medical marijuana you should look into it.
stay strong and start tomorrow on your new health kick . you maybe surprised and many people never try. Epson salt bath at night also helps. there is a product at whole foods called calm. its a drink mix. magnesium works well on the body
Doug
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Thanks so much! I had done a few of those things so far but will try to go as hardcore as possible! Thanks for all your tips I look forward to trying them!
Hi to those who replied. Update. Still having terrible foot pain (plantar, heels, Achilles, you all know), both ankles are swollen and painful (at times can barely walk), knees take turns, hips, and the fingers, hands, wrist pain from the enthesitis is giving me burning, ringing pain that shoots to my elbows. Fingers are swollen and so very stiff. My elbows ache. Shoulders, back, neck. Now there’s my symptoms! Month 5 on Cosentyx with 200mg of Celexa with 0 improvement. Rheumy wants to add Leflunomide (Alara) on top of Cosentyx but I said no because of my cancer history and bad past experience with methotrexate…now he wants to switch me to Taltz since I don’t want to add Alara…sent a steroid taper I go to pick up today since I haven’t been able to work and calling in sick 
…I started Whole30 to try to see if anything in my diet that might be increasing inflammation! I’m trying CBD/thc topicals etc. I see a naturopath at my rheumys office end of Feb. Nothing is helping. I’m trying to maintain hope that if I get super healthy I can feel better but it’s a rough season to stay hopeful with so much overwhelming pain in multiple areas at once, meanwhile taking care of my 2 and 1 year old keeps me using body parts that I’m sure need rest…typing this hurts so bad…any other tips on medication front and practical or holistic much appreciated!!!
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Meant to add my finger and hand pain/stiffness is the worse because they become frozen when I’m doing things like eating with a utensil, chopping, etc.
That stinks. Yes, by month 5 it’s reasonable to expect more improvement than that. A few things to think about. You mentioned ibuprofen and aleve, but there are other prescription NSAIDs that may be able to do more for your pain and inflammation. Lifestyle changes are good, but obviously you get the most bang for your buck when combined with meds. No tnf inhibitors for you. . . . Is that because of the cancer history? Or your doctor just hasn’t gone that route yet?
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HEY!!! just caught up to this thread. A shout out to the SHMC folk. Do any of you work in ortho? If so I may have met you when I got my last shoulder replacement. At least I met another PsA person. I’ll be over soon time for a hip!!!
TJ
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Thank you! I was on Enbrel in the past for a short time for my psoriasis but had site injection reaction so not sure if the rheumy isn’t going there for that reason or for the cancer history but I did express that as a big concern. He prescribed me 100mg Celebrex (why does my phone keep saying Celexa?! OOPS) twice a day and then upped it to 200mg 2x a day but can hardly tolerate that made me dizzy. I was using Aleve around the clock and that was giving me stomach pain so he wanted me to switch to the Celebrex. The topical CBD helps more than the NSAIDs seem to (which isn’t much) 
.
I’m a cardiac nurse there! Well wishes of success and fast healing on your next surgery! I’m sure I’ll need that advice one day 🤦
Hi there,
It certainly does stink having that extent and severity of symptoms 5 months after starting Cosentyx. I assume you’re on the 300mg dose (I can’t remember). It’s normal protocol in the UK at any rate to switch to Talz if Consentyx doesn’t do its job. The same way as it’s normal to switch between Humira and Enbrel if one or the other doesn’t work. They’re drugs hitting similar things.
I’m on month 3 of Cosentyx at 300mgs. It’s working for me but worked far better through the loading doses at 300mgs once a week instead of once a month. However all the research says it really does take 4 months at least of the monthly doses to get going. For some people it’s an even slower burner too. I know several people who didn’t get any benefit till month 5, 6 or 7.
Personally therefore I’d be going with adding in Arava (Leflunomide). Can you identify the cancer risk with Arava? Would you try sulfasalazine instead? I’m not up on any cancer risks other than with some biologics and possibly mxt. I’m just throwing out some ideas only.
However I still take painkillers (Tramadol) and anti-inflammatories (Arcoxia) with stomach protectors. The dose is now far less than previously but nonethless still needed. There is a myraid of different combinations of any of the painkillers and NSAIDS which might help too, not just Celebrex. You’d know that too obviously.
What are your Vit D levels like? Have you tried magnesium to stop the locking of fingers etc? You can even get it in a spray.
I don’t have two young children though and neither am I cardiac nurse which I assume means being on your feet all day. I do though work full time but mostly from home. I pace like hell though. Do something and rest up etc etc. Obviously not that possible for you. But for me it always helps.
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Hi–I’m in agreement that 5 months is plenty of time to wait. I’m in the US with a rheumy who doesn;t hesitate to switch up biologics when my quality of life becomes intolerable. I switched from Cosentyx (which I like but tapered off after almost a year) to Xeljanz (pill which lasted about 7 monhts) to Taltz.
Taltz is workig really well for me–almost as well as Enbrel did as my very first biologic. I did develop a very significant injection site reaction (large 3" diameter bubble of fluid at injection site) which is now controlled by strong steroid cream pre- and post-injection. It was a bad reaction which is now waning but the response I felt to the medication was so good I decided to live through the once a month discomfort.
So, long way to say, why can’t you press to try something new? I’m always anxious I’ll run out of drug options but my good friend @tntlamb tells me that’s not gonna happen!
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Thanks all for the thoughts, advice, and support. I am currently using a voice thing to type on my phone as it’s too aggravating to text or type. I have worked out plan with my managers so that I am barely working but working enough to keep my nursing job. Yes, it has been increasingly difficult with the foot/hand pain and limitations to keep doing my job and life; especially taking care of my little ones. Fine motor skills are killing me. Feet are so bad again. Ugh. Just heard back that taltz was not approved by my insurance and they want to start me on humira now instead. (Had first dose of taltz from office sample last week). They want me to call back after I look into Humira. I am already so frustrated at the amount of medication changes with having to change again when just getting started. I also keep getting scared of the long-term effects of cancer risks since I already had melanoma and I’m so young with babies. But I know I need to function better for any quality of life. Has humira worked for most of you? My feelings of hope for feeling better keeps seeming further and further away…
Also, rheumy gave me a prednisone taper and it’s doing literally nothing to help! Since I had such relief with the Kenalog shot back in November I was hopeful the steroid taper would help until whatever new medication was started. Another part to the deflation.
Just my experience: I had a violent WORSENING of my foot pain, plantar fasciitis and Achilles tendinitis with Cosentyx while on the initial loading dose. I didn’t want to take the first monthly “maintenance” dose but I had the injector pen in the fridge and my rheumatologist practically begged me to take it. I felt bad about wasting this obscenely expensive drug and so I took the last injection.
I immediately began to spew from both ends, hit my head on the toilet from retching so violently. I’ve had several episodes of bloody diarrhea since then but I’ve avoided talking to the rheumy about them because they seem to be getting less frequent over the past three months and I want to stay in denial for a while longer about the possibility that the Cosentyx caused me to develop inflammatory bowel disease.
I also developed blepharitis and discovered this is a potential side effect of Cosentyx as well.
Almost a third of patients using Cosentyx for PsA have “no response”, but when I read the research studies, I don’t see any measurement of how many patients are worse in the Cosentyx group versus placebo, so I suspect this may be more common than the studies show. https://www.ncbi.nlm.nih.gov/pubmed/31943974
The half-clearance life of secukinumab is a month. So it takes several months for it to clear your system. I’m going on four months out and it seems like my PsA is about back to baseline now.
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