I’ve been lurking on here and have learned a lot from your posts so thank you to everyone for sharing your stories and giving tips on how to manage PsA.
About Me: I was diagnosed last year at age 52 but believe I was misdiagnosed for over a decade. My family is the poster family for autoimmune diseases – Type 1 diabetes, MS, lupus, Hashimoto Thyroid, Samter’s Triad, asthma, etc. Basically if you don’t have something autoimmune you are an oddball in the family. I was diagnosed with Hashimoto years ago and was under control for that. I had gone to my primary with multiple symptoms that I suspected were autoimmune related but not sure in what way since it didn’t fit with the thyroid. In the doctor’s defense, he did order some blood tests that all came back negative but mostly dismissed my complaints as minor and not worthy of follow-up. Sound familiar, anyone?
I self-referred to a rheumatologist after worsening foot and hand pain that was no longer controlled by NSAIDs. The doctor walked in the room and in 3 seconds said, “You have an autoimmune inflammatory arthritis. I can tell just looking at your hands. You have dactylitis.” (The sausage fingers had shown up suddenly 10 years ago and was one of the complaints to my primary, BTW.) Subsequent testing gave me a diagnosis of PsA.
I was started on Methotrexate but failed within two weeks due to intractable migraines. He switched me to Humira which was a miracle! Good improvement after first dose. Almost clear and back to normal after second dose. I could walk like a regular person for the first time in years. Unfortunately, the honeymoon only lasted 3 months. After an injection, I developed Humira “flu” the next day, felt like I had been run over by a truck and my body rejected the Humira after that. All the symptoms came back and 3x as bad as before. I have been on Enbrel now for about 6 months. It is working with slow improvement but not as well as the Humira. The psoriasis is mostly under control but still having fatigue and pain flares especially in hands and feet. I just saw my Rheum and he has offered to switch my med again and is letting me choose. Yikes! Trying to research my options but my head is spinning - TNF, IL17, PDE4. Plus I’m worried about burning through all my options. So my questions are:
Should I switch or stay on Enbrel since it is “kind of” working and I don’t have any side effects other than a little injection site reaction which is improving.
If I do stay on the Enbrel, should I ask my doctor to add low dose Prednisone. This was recommended by another family member with a different autoimmune diagnosis who feels it has saved his life.
If I switch, which medication should I try next?
Sorry for the long wordy post. Any and all input it greatly appreciated!
Has your doctor given you a list from which to choose, or has he just said look up all the meds for PsA and choose? Personally since you had a good reaction to Humira which is an anti-TNfa inhibitor, it seems logical to try you on another as in Enbrel. You can be a slow responder to Enbrel (you can be a slow responder to any of them it seems) so since it’s working (sort of) at 6 months in, staying on for another 3 months of so might give the response you’re looking for. Just my thoughts. Otherwise since I’m always attracted to anything ‘new’ I’d be heading towards any that deal with IL17,23 and 12.
Also adding in another DMARD (obviously not mxt) might help make the Enbrel work better - has he mentioned that? Pred for me always works but is never a drug I’d like to take long term anymore. Short, sharp, tapering doses to get through a particular issue helps me more. Has anyone suggested though you get a steroid shot into your shoulder to ease bursitis issues. I’ve just had a second one in my hip (aim was better this time) and coupled with a new to me NSAID my hip is now virtually pain free after about 5 months of barely being able to climb just one step. Of course in celebrating my now almost painfree hip, I fell over in a field yesterday, flat on my face with my glasses becoming embedded in some sheep poo and the said poo flying everywhere else, so this morning I ache from just that which I know will get better soon. But I must remember to slow things down a tad. My pride can’t take much more of this!
What exercise are you managing? That can work wonders for me at any rate. Slow, plodding, persistent exercise of any sort done daily, (not joyfully walking across a field of ant hill/nests without looking where I was going!)
And what pain relief are you taking? That taken judiciously also helps throughout the day.
The good thing is we’ve got so many options now and it seems keep getting new ones too. But my thoughts are similar to yours I don’t want to ‘burn’ through the options too fast either, not without ensuring the present regime truly has run its course.
Yes I overdid it after Humira kicked in but not in such a spectacular fashion. Is that part of your poo therapy? Glad you didn’t get seriously hurt.
My Rheum gave me pamphlets for Otezla and xeljanz. He also mentioned Cosentyx but didn’t seem excited about it. Then said I could pick whichever biologic I thought I could tolerate SEs for. He didn’t mention Dmards other than MTX. I have to remind him every Time that I don’t tolerate it.
All I can manage for exercise right now is walking and a little stretching. Hope to add yoga and swimming.
As far as pain, I take naproxen for flares and a rare lortab if it is extreme. (Morphine/codone makes me barf.) Shoulder bursitis is under control. It’s mostly feet and hands. I’m trying to avoid the steroid joint shots as long as possible… Was told it speeds up joint destruction for only short term relief. Found this to be true when I got one in my shoulder. Only worked for a couple days. Also I hate needles. I need helper for Enbrel shots.
I’m very thankful to have options. My Rheum said if not for invention and success of biologics I would be in wheelchair in 5 years.
I noticed that in your list of symptoms, you mentioned Blepharitis and gut issues. I also noticed you said Humira worked really well for you.
My Rheum seems to think there is a sub-group of PsA that often (not always) responds better to a sub-group of biologics. The sub-group of PsA is one that involves axial arthritis (spine), and features gut issues and mild eye inflammation or blepharitis, and the sub-group of biologics seem to be those that are more effective for IBD. He thinks my arthritis belongs to this group, and so recommends that I use biologics that are effective for both PsA and IBD (though he thinks I have mild crohns-like IBD too, so this is kind of essential for me).
I did really well on Humira before having a reaction to it (I got three years), and have now moved to Cimzia (whose method of action is very similar to Humira, but Rheumy reports I’m much less likely to develop an immune reaction to it - don’t know if this is research based or placebo). Cimzia is working really well for me. I keep a list of the biologics that work for both PsA and Crohns on my phone, just to remind me there are options out there!
Though I haven’t seen any research on this, I guess it might be worth considering. I see Xeljanz has recently been approved for Ulcerative Colitis as well as Psa, and Otezla has had some recent news implying it is doing well in clinical trials for Ulcerative Colitis, so maybe your Rheum is already onto this without necessarily mentioning it to you? (mine does that sometimes). Others that might be worth considering in that case would include Remicade, Simponi, Cimzia, even though they are now the “older” generation - these are slightly different in how they work, though I think they are all injectibles, as opposed to the tablets your Rheum has recommended (and I gather you hate needles). I also see that Costenyx does not work for IBD (and has been implicated as a possible trigger for the emergence of IBD symptoms), and your Rheum was not so excited about it, so perhaps he has done more thinking about it than it superficially appears.
I think @Jen75 said it all on the options. One person on here has charted her journey on Xeljanz - check it out, it might help you decide. And yes the name ‘poo therapy’ came from the fact that before PsA I volunteered on a rare breeds farm at weekends which is also a tourist attraction and charity, basically mucking out pigs mostly. I used to call it my ‘poo therapy’ as truly it was one of the best things I ever did and certainly made me smile lots. Sadly now I wouldn’t manage it at all but I so miss it!
Based on everyone’s advice, I talked to my Rheumy and we agreed to give Enbrel 3 more months. Unfortunately, it seems to slowly be losing effectiveness. Joint pain and skin problems are creeping back even when not in flare. I will be starting on Cosentyx soon because it does well with enthesitis. Rheumy was originally recommending the pills because he knows how much I hate needles and Cosentyx is 2 shots. The theory about a subgroup of PsA is intriguing especially because my spine seems to be getting worse. I forgot to ask doc about that but will bring it up at the next visit.
Definitely recommend you not ignore the spinal issues. I have had psoriatic arthritis for 25 years now. I was initially put on NSAIDS, prednisone, and methotrexate and it worked well for a long time. Did not know that my spine was being attacked by the disease until about 7 years ago. I ended up needing spinal surgery. Had to have 3 vertebrae fused; had to have treatment for stenosis; and rods, screws, etc for scoliosis, as well as degenerative disc disease. My PsA is apparently pretty agressive. Last may, I had a MRI done and it showed continued growth and expansion of the area affected by the PsA. Moral of this story is to pay attention to the spine! Back pain of this magnitude is no fun!
Also, I found that PT taken in a swimming pool was very helpful to me. Much less stress on joints. And under the heading of home remedies…a friend of my wife told us to drink tonic water for muscle cramps. I bounced this off of my doc and he agreed. Tonic water has small amounts of quinine, which is very effective in treating cramps. Hope it helps you. Both my wife and I swear by it.
Schoonerbird, please be careful with the quinine. It is no longer recommended for muscle cramps and can cause some serious side effects. The tonic water has a low dose but even that can build up over time and cause problems.
Is the spine damage all due to PsA or was some caused by the long term use of Prednisone? I have a family member with a different autoimmune disorder that does not affect the bones. Unfortunately, he now has significant deterioration of his spine from the long term Prednisone and is in constant pain. He doesn’t regret taking the Prednisone for so long since that was all that was available at the time and it saved his life. It makes me leery of taking even low dose Prednisone for more than a few days even though it helps so much. If I keep failing biologics I may not have a choice. I have to be able to walk.
You are very right about taking care of the spine. I should see a back doctor but I’m chicken they will tell me I need surgery and my back pain is still manageable. But I’m definitely going to start swimming again. I keep saying when the weather is warm enough but it has been warm enough for weeks. I’ve been procrastinating mostly because I don’t like to swim in public anymore with my spotty skin and wacky swimming style since my joints just don’t bend the way they used to. But if I want to keep what mobility I have left I know I need to do it.
Glad you didn’t get seriously hurt.