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Living with Psoriatic Arthritis (PsA)

Beginning my 4th Infusion biologic...sigh


#1

After being on Remicade Infusions for 8 years for PsA, even though it was effective for joints and psoriasis, had to stop as I developed Secondary Lupus. This all began December 2017 (the Lupus symptoms.) started Oriencia infusions May 2018 after last dose of Remicade April 1st 2018… I thought the symptoms were finally fading around September 2018 but they returned in a flourish. The psoriasis exploded like I have never seen before, even in my scalp and haven’t seen that in many years , the intense fatigue was back, the joint pain intensified, the redness on my face returned when it was fading away, and my hands are blistering like I was in a fire. And of course the IBS has also returned. My Dr said back in May the Lupus should work it’s way out. But I am sure he had no idea it would return like this. Beginning in 2 weeks my Dr has me starting Symponi infusions , every 4 weeks along with injections of Methotrexate every week. So it appears he is doubling up on biologics and we’ll see what happens. I have not been too thrilled with this Dr. My Dr retired and he was the best. But trying to get information out of this Dr is like pulling teeth. I have made an appointment 300 miles north of my town at a reputable University and a Rheumatologist who has impeccable credentials. In addition, I am friends with a Nurse in the area who also says she is the best. I made the appointment in October and I will see her in May 2019. So that is saying something ! Of course I have not said anything to my current Dr.
I know finding the right Rx for PsA can be a problem and add Lupus to the mix, downright impossible. So I am going to see one of the best in the State.
Has anyone here dealt with anything like this as well? I am so tired, and frustrated I don’t know where to turn. I have had to deal with PsA for 37 years and until this year have not had major issues, other than tweaking my injection meds here and there.
Any and all comments welcome and thank you.


#2

Symponi is my fifth biological in 7 years. I started in late Spring. Not much happened until my third dose and finally joint pain gone! On the fourth dose I developed high blood pressure as a side effect and was given a BP Med. I should have talked to the pharmacist because after I passed out and hit my head 8 weeks later he informed me high BP is usually a temporary side effect. So keep tabs on your BP. I am off BP meds except on the day of infusion when it gets high. It’s fine the next day so far. It has really helped my psa so I’m not going to complain. Good luck!


#3

Wow, thanks for the input. Already on BP meds so should be ok there. We will see. My joints have hurt for so long it’s like second nature now. I just want this psoriasis and Lupus symptoms to go away. Never have I had a psoriasis flare up last one year ! Not even close. And the fatigue is really doing my head in. Now I can only clean one room of my house per day, and traveling is out of the question. I have never stayed home for too long without hopping on a plane to visit family and friends domestically and internationally. Now I am too afraid to even try. This is all do to the fatigue. Never did I realize how bad Lupus can be for those who have to suffer with it.
If only I would have to deal with one Autoimmune disease instead of 2. The thing that really frustrates me is although I am being treated for the PsA, nothing is being done to treat the Lupus. My Dr keeps hoping it will just “go away.” After almost one year, this is enough for me so getting a much needed second opinion. Again, thank you for your help here. All the best in your fight with this!


#4

Orencia gave me a major psoriasis flare up, but I’ve been on Simponi Aria (infusions) for about a year and have been having moderately good success. My only concern at the moment is a minor psoriasis flare and some bleeding gums.(despite my dentist saying they’re healthy, I did read that it could be a side effect of the Simponi). I still have minor aches most of the time with occasional flares, but it’s much less than it has been and the side effects have been so incredibly minor that I haven’t wanted to change. Lol. This is my third (?) Infusion biologic, and I went through 5 or more before that if either infection or pill form (in fact until recently we were out of next options if the Simponi failed, which were still not totally sure about.).
I hope you have good luck with the Simponi and the Lupus resolves soon!


#5

Thank you so much for your input. Did you suffer hair loss with Orenicia as well? For the first time in my life on Biologics, my hair is really thinning on the scalp and even tho I had a cut 5 weeks ago, it looks like it hasn’t grown one bit. Hopefully it will grow back being off Orencia. My Daughter suffered the same with Humira and once she was taken off of it her hair grew back in. Fingers crossed! Never in all these years (38) of being on these meds have I had to change drugs so often as these last 2-3 years. My time spent on Enbrel and Humira was years on each, Remicade 8+ years until it passed on the Lupus. It was a great drug for me. .I have been doing this so long my first med was Gold Injections!
I appreciate your help on this and all the best to you !


#6

I honestly can’t remember if my hair loss was from the orencia or from when I was on otezla and leflumenide - last year was a year of med changes and terrible side effects. But I think you’re probably safe to believe it’ll grow back in once the orencia is out of your system - mine filled back in iver the course of 3-6 months or so after stopping whichever medication it was that made it fall out.


#7

I am a new member to this site, but reading your posts has really hit home for me. I am a 71 year old male and had my 3rd infusion of Simponi aria this morning. Brief history…PsA treated with NSAIDS, prednisone, and methotrexate for the first 18 years, with great results. Essentially, I felt good; pretty unrestricted in activities. Then had an ulcer in 2012. Had to avoid all NSAIDS after this. Went on Humira and again, had great results. Had to leave Humira when went on Medicare due to costs. Rheumatologist at the time (who was the best Rhumi I could imagine) put me on Remicade infusions, so that Medicare would cover it. After about a year, Remicade ceased to be effective. Then tried Cimzia. It too, only worked for a few months.Had surgery for scoliosis, stenosis, degenerative disk disease, and ankylosing spondylitis in May 2014. Ended up with lots of hardware in my spine, plus 3 vertebrae fused together. After surgery, Rhumi suggested giving Remicade another try. It worked until Aug. 2017! After my surgery I had moved and new Rhumi tried me on Humira again during winter of 2017. I also have to deal with Type II diabetes, and a couple of other minor ailments.

Now to the present. My new Rhumi, to put it bluntly, is hard headed, and slower to react than I like. After putting me on Humira, I started to feel better after 3 months of injections. I am the type of person who puts a lot of importance on quality of life. Due to disease, and advancing age, my activities have become less and less. One of the remaining activities that I can still enjoy is golf. Now (and this has driven me nuts) the Humira was working well, and I was really feeling good this particular morning. In fact, I was feeling better than I had felt in a year or two. My golfing partner even commented on this. I played the first 10 holes, and still felt pretty good. At the 11th hole, it was literally as if a wall switch had been flipped from on to off. All of the good feeling left at once. I immediately starting feeling poorly, just as I had before starting Humira. I took another injection two weeks later, but the pre-golf benefits never returned. Naturally, I stopped taking it. Has anyone had anything similar happen with any biological they are using? My doc could not offer me a satisfactory reason as to how and why the medication had failed in this manner. He only said I must have over exerted myself.

So, now we have moved to Simponi aria. I am very hopeful that Simponi is going to work. So far, I do feel a little better, but it is still too early to say for sure. As soon as I can determine if Simponi might be the answer, I will be changing Rheumatologist. I would like to hear from other users of Simponi about their experiences with this medication. If this does not provide the relief I need, I have no idea what to do next. My surgeon at Duke was very honest with me, and told me even before the surgery that I would never be pain free again, but that I could expect to have a quality of life much better than before. I can tolerate some pain, more than some people and less than others. I just know I want to be as pain free as I can. Your comments about your experiences would be appreciated. Thanks.


#8

Welcome aboard ! Sorry couldn’t help myself. If you have read my threads you know I have had PsA for 38 years now and consider myself somewhat of an expert. In addition, being a retired Nurse helps with the medical stuff. I have been on many Rx’s but nothing like what I have been through the past few years. After the 8 years of Remicade infusions, I developed Lupus from the Remicade. That was last year. Remicade is a great drug, at least it was for me. My Dr was hoping the lupus would just go away when we stopped it, but after one year, it is still with me. Once off the Remicade, he is trying Simponi. He also added Methotreate injections weekly. I tried MTX 20 years ago and developed thrush so my then Dr stopped that immediately I only had 2 infusions of Simponi when I developed a UTI . I have had these only twice in my lifetime. Also a severe case of oral thrush. My Primary care Dr put me on an antibiotic so of course had to stop Simponi and MTX. With the UTI resolved ( and all this was over the Christmas and New Year’s holidays so getting a hold of a Rheumi was impossible. I chose to say off both drugs till I see him Monday. But his nurse told me he wants me to go back on the MTX when the thrush is resolved. He prescribed an anti-fungal throat and mouth tablet that dissolves in your mouth. This has yet to happen. Having thrush is not uncommon with an autoimmune diseases but I have only had this happen 3 times in 38 years. I have had and still have blisters in the corners of my mouth and my bottom lip was quite swollen and painful. Never had this happen before either. My lips are blistered, not like the common chapped lips of winter. So everything has hit me at once and only after 3 doses of MTX. Finding a Rheumatologist in my area is almost impossible. I moved here (small town) from Southern Calif where excellent medical care is commonplace. I had no idea the medical care here would be so lacking in quality physicians. I had a wonderful Rhumi for the first 7 years here but he retired and have seen his associate for 1.5 years and he cannot figured out what to do. He mentioned when I contracted the lupus, I may have to go to Mayo as he has never dealt with this in his 30+ years of practice. (That wasn’t too encouraging.) When I see him Monday I am going to insist on it. I have never felt so tired in my life as I have the last 2 years. One trip to the grocery store and I am done. My right hand remains blistered with open bits and I have shed a complete layer of skin on my fingers so I have to wear cotton gloves 24/7. I also developed Raynards with the lupus so my hands and fingers are so painful, and discolored that I always keep disposable hand warmers with me at all times. Even in warmer months while driving if my hand is near the air conditioning vent of my car, the Raynards kicks in. All this for the last two years, where as the previous 36 years I only had the usual psoriasis flare-ups and would change injectables if one stopped working for me. I worked all my life, traveled for my job, and a lot for pleasure as well. I traveled domestic and Internationally too… Oh I got tired but managed to deal with it. Now I afraid to get on a plane fearing this overwhelming fatigued would hold me and my family back. My entire quality of life has changed in the last 2 years and I know there are physicians out there who can fix this. So, not much help on the Simponi I am afraid, but I have been able to avoid surgery so far. Best of luck to you.